Accessing social capital and ‘goods’ online: the contingent role of the

Internet in parenting someone with Rett syndrome

by

Jo Hope

Submitted for the Degree of Doctor of Philosophy

School of Social SciencesFaculty of Arts and Human Sciences

VOLUME I: MAIN BODY OF THESIS

Supervisors:

Dr Christine HineDr Sarah Earthy

Word count: 84,769

© Jo Hope 2015

Declaration

This thesis and the work to which it refers are the results of my own efforts. Any

ideas, data, images or text resulting from the work of others (whether published

or unpublished) are fully identified as such within the work and attributed to

their originator in the text, bibliography or in footnotes. This thesis has not been

submitted in whole or in part for any other academic degree or professional

qualification. I agree that the University has the right to submit my work to the

plagiarism detection service TurnitinUK for originality checks. Whether or not

drafts have been so-assessed, the University reserves the right to require an

electronic version of the final document (as submitted) for assessment as above.

Signature: __________________________________________________________

Date: ________________________________________________________________

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Abstract

Our current understanding of the use of online support and information among

parents of people with rare syndromes is fragmented, both theoretically and

methodologically. This thesis aimed to provide a more coherent picture by using

Bourdieu’s concepts of capitals, habitus and fields to explore the interplay

between the social differentiation of online support use and its role within the

wider caring practices of parents of people with Rett syndrome. A mixed mode,

mixed method approach was used. Parents were recruited through a charity’s

mailing list and communication channels and through relevant online support

sites. 190 parents completed a survey about Internet and online support use.

Twenty of these parents took part in detailed interviews about their use of online

peer support sites. Age most strongly differentiated the use of the Internet for

caring-related information and support. Time-related variables (age of parent,

age of child and years since diagnosis) strongly differentiated the use of online

peer support and fewer years since diagnosis was associated with gaining

greater benefits from online peer support. Use of online peer support in

everyday caring practices was dynamic and changed in relation to alternative

sources of social capital, current need and level of relevant expertise.

Interviewees with adult children had lower information and support needs

overall and online support sites, used predominantly by younger carers, offered

them few useful ‘goods’, except keeping abreast of developments in research and

treatment. Wealthier parents tended to use blogs to read and trade information.

There was a suggestion that more educated interviewees accessed a range of

primary sources of information while less educated parents relied upon online

peer support as a primary source of information. These findings demonstrate the

importance of exploring online caring and health practices within a wider social,

historical and personal context.

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Acknowledgements

My husband, Jason, has been incredibly patient and supportive throughout my

PhD, taking on a greater share of housework and acting as a sounding board as

I’ve worked through numerous iterations of my argument. My mum, sister Kate,

and step-sister Liz have been incredibly generous with their time in

proofreading my final draft. My dad, step-mum, mum, and step-dad have all

provided practical support to help me protect my PhD time. My supervisors,

Christine Hine and Sarah Earthy, have provided exactly the right amount of

advice and I feel lucky to have benefitted from their input. Other researchers in

the department have provided useful feedback at critical times (thank you to Rob

Meadows, Ian Brunton-Smith, Jo Moran-Ellis, Rachel Brooks and Andy King). I

have benefitted in all kinds of ways from the support and company of my fellow

PhD students: Lorraine Locke, Linnéa Österman, Richard Green, Richard

Fletcher, Alex Seal, Miriam Dunst, Judith Sleney, Tara Knights, Sophie Sarre, Eva

Martinez-Cruz, Peter Johnson, Fiona Wadie, Cornelia Wilson, and Michelle

Webster.

I could not have carried out this research without the support of some

extremely important people and organisations. The Economic and Social

Research Council (ESRC) funded my research through the South East Doctoral

Training Centre (SEDTC). Rett UK, particularly Debbie Main, supported me in

recruiting their members to my study, allowed me access to an anonymised

version of their database, and invited me to an event to meet parents and pilot

my questionnaire. Moderators of some key online support sites were kind

enough to allow me to post information about my study online. Finally, and most

importantly, warm thanks are due to the parents who contributed to my

research (by completing a survey, completing a form about why they decided not

to complete a survey, offering me advice about my survey, taking part in an

interview or showing an interest in my work). I appreciate all of you taking the

time to support this research and I hope that I have done justice to your

experiences.

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Contents: Volume I

This thesis is presented in two volumes. The main body of the thesis is presented

in Volume I. The Appendices are presented in Volume II.

Abstract.................................................................................................................2

Acknowledgements.............................................................................................3

Contents: Volume I...............................................................................................4

Contents: Volume II................................................................................................7

List of Tables........................................................................................................8

List of Figures.....................................................................................................10

Chapter 1. Why now and why Rett syndrome? Understanding the context of this research.......................................................................................................111.1 The need for this research now..........................................................................................................111.2 The choice of parents of people with Rett syndrome as a case study...............................12

1.2.1 Why Rett syndrome?........................................................................................................................... 131.2.2 The shifting nature of the diagnosis of Rett syndrome.........................................................141.2.3 Difficulties in anticipating the prognosis of Rett syndrome...............................................161.2.4 The care needs of people with Rett syndrome..........................................................................181.2.5 A future possibility of treatment?..................................................................................................181.2.6 Mapping the socio-historical experiences of different carers...........................................19

1.3 The structure of this thesis..................................................................................................................20

Chapter 2. Fragmented understandings: the role of online support and information in the caring practices of parents of people with a rare syndrome............................................................................................................232.1 Use of the Internet and e-health in everyday life........................................................................24

2.1.1 The Internet in everyday life............................................................................................................252.1.2 Theories about the relationship of online information and support to everyday life................................................................................................................................................................................. 26

2.2 Everyday use – but not for everybody? The social differentiation of Internet and e-health use.............................................................................................................................................................30

2.2.1 Social differentiation in use of the Internet..............................................................................302.2.2 The social differentiation of online information and support seeking in caring and health practices................................................................................................................................................ 36

2.3 The role of online peer support and information in modern caring practices: the current state of the research.......................................................................................................................40

2.3.1 The role of online lay information in everyday caring practices.....................................412.3.2 Relationship of information and support seeking to current need.................................452.3.3 Relationship to other sources of information and support................................................452.3.4 The reproduction of biomedical narratives and flight from online peer support sources.................................................................................................................................................................. 462.3.5 Limitations of findings....................................................................................................................... 47

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2.4 Putting it all together: towards a coherent understanding of the role of online support and information in the caring practices of parents of people with a rare syndrome.............................................................................................................................................................49

Chapter 3. Bourdieu and the use of online support and information in everyday caring practices.................................................................................533.1 Social capital online and offline and the neglect of Bourdieu’s conceptualisation......543.2 Bourdieu’s concepts of capitals, fields and habitus...................................................................583.3 Bourdieu online.........................................................................................................................................65

3.3.1 Reframing social differentiation online: the role of Bourdieu’s capitals......................663.3.2 Habitus and use of the Internet...................................................................................................... 723.3.3 Meshing the online and offline: conceptualising online sites and groups as subfields................................................................................................................................................................................. 74

3.4 Reframing the use of online support and information in the everyday caring practices of parents of people with Rett syndrome..........................................................................76

Chapter 4. Methodology....................................................................................794.1 Research design.........................................................................................................................................804.2 Stage 1: Quantitative survey of parents of people with Rett syndrome...........................84

4.2.1 Hypotheses and exploratory analyses.........................................................................................844.2.2 Design of the survey............................................................................................................................. 874.2.3 Pilot phase............................................................................................................................................... 894.2.4 Structure of final survey.................................................................................................................... 894.2.5 Reaching parents of people with Rett syndrome....................................................................904.2.6 Characteristics of survey sample................................................................................................... 94

4.3 Stage 2: Qualitative interviews.........................................................................................................1004.3.1 Recruitment.......................................................................................................................................... 1014.3.2 Mode of interview.............................................................................................................................. 1034.3.3 Interview schedule............................................................................................................................. 1044.3.4 Sample.................................................................................................................................................... 1044.3.5 Reflection on the interview process...........................................................................................108

4.4 Summary of the data analysis processes.....................................................................................1114.4.1 Analysis and interpretation of quantitative data................................................................1114.4.2 Analysis and interpretation of qualitative data...................................................................1134.4.3 Mixing data from different methods..........................................................................................115

Chapter 5. Structural differences in the use of caring-related online support among survey respondents.............................................................................1175.1 Social differentiation of the use of online support and information among survey respondents..................................................................................................................................................... 118

5.1.1 Social differentiation of the use of the Internet in this sample......................................1185.1.2 Social differentiation of the use of generic online support related to caring in this sample................................................................................................................................................................ 1205.1.3 Social differentiation of the use of online peer support in this sample.......................122

5.2 Brought together ‘in a seemingly fortuitous way’? Social differentiation in the use of online support platforms among respondents.................................................................................1255.3 Unequal profits or unappealing goods? The social differentiation of the benefits gained from online peer support by survey respondents...........................................................129

5.3.1 Social differentiation of the perceived benefits of generic online support in this sample ............................................................................................................................................................... 1315.3.2 Social differentiation of the perceived benefits of online peer support in this sample .............................................................................................................................................................. 133

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5.4 Exploring the role of age: time, child’s needs, alternative sources of support and digital differentiation...................................................................................................................................140

5.4.1 Relationship between age of respondent and key variables of interest.....................1425.4.2 Exploring the impact of age-related differences in differential use of the Internet and differing information needs............................................................................................................. 145

5.5 Interpreting the structural constraints on the use of online support and information among survey respondents.......................................................................................................................152

Chapter 6. The contingent use of online support and information: the role of habitus, social and cultural capital, expertise and needs........................1586.1 Online information and support seeking in context: the dynamic nature of needs, expertise, support and biographical disruption over time.........................................................159

6.1.1 Early childhood................................................................................................................................... 1626.1.2 School-age to early adulthood..................................................................................................... 1696.1.3 Adulthood.............................................................................................................................................. 177

6.2 The influence of habitus, cultural and social capital on interviewees’ ‘fit’ with specific online support subfields.............................................................................................................................183

6.2.1 Relationship to existing social capital resources.................................................................1846.2.2 Cultural capital and differences in propensity to seek help in peer support forums............................................................................................................................................................................... 1896.2.3 Willingness to share cultural capital in peer support forums........................................1926.2.4 Fortuitously brought together?................................................................................................... 1946.2.5 Fits and misfits between interviewees’ habitus and forms of habitus expressed on online peer support subfields................................................................................................................... 199Parenting practices...................................................................................................................................... 199Digital taste..................................................................................................................................................... 202Emotional expression.................................................................................................................................. 203Illness narratives........................................................................................................................................... 206

6.3 Interpreting the interplay between micro practices and structural differences in online information and support seeking.............................................................................................210

Chapter 7. ‘Playing the game’ – symbolic capital online and within wider caring fields......................................................................................................2137.1 Symbolic power online: why some online support spaces are more equal than others................................................................................................................................................................................ 2137.2 Unequal gains? The role of online sources in accruing valuable ‘goods’.......................220

7.2.1 The role of linguistic capital in accessing ‘goods’ online..................................................2217.2.2 Accruing online ‘goods’.................................................................................................................... 225

7.3 ‘What do I know, I’m just a mother’: converting online ‘goods’ into symbolic power in wider caring fields.........................................................................................................................................2367.4 The role of online peer support sites within wider caring fields and existing power structures..........................................................................................................................................................247

Chapter 8. Towards a more coherent understanding: the role of online support and information in the caring practices of parents of people with a rare syndrome..................................................................................................2508.1 The social differentiation of online peer support and information use.........................251

8.1.1 Assessing structural differentiation among a case study group of parents of people with Rett syndrome...................................................................................................................................... 2528.1.2 Interpreting the social differentiation of the use of online support among respondents..................................................................................................................................................... 253

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8.2 Fortuitously among like others? The social differentiation of online peer support sites...................................................................................................................................................................... 2568.3 The role of habitus and cultural and social capital in the use of online support and information.......................................................................................................................................................260

8.3.1 The influence of alternative social capital resources on the use of online support............................................................................................................................................................................... 2618.3.2 The influence of cultural capital on the use of online support sites and information............................................................................................................................................................................... 2628.3.3 Indications of the role of habitus in online support site use............................................263

8.4 The social differentiation of benefits from online support sites.......................................2698.4.1 Social capital benefits...................................................................................................................... 2698.4.2 Knowledge and expertise ‘goods’................................................................................................2708.4.3 Economic capital................................................................................................................................ 2718.4.4 Symbolic capital in wider fields................................................................................................... 272

8.5 Key contributions to our understanding of the role of online support and information in modern health and caring practices.................................................................................................273

8.5.1 Meshed practices: the importance of understanding the use of online peer support in context.......................................................................................................................................................... 2738.5.2 Questioning digital inequality: the role of expertise and alternative sources of support.............................................................................................................................................................. 2748.5.3 The reproduction of symbolic power online...........................................................................2748.5.3 Troubling the concept of lay health support sites...............................................................2758.5.4 It’s about time: the importance of understanding practices within a wider socio-historical context.......................................................................................................................................... 275

Bibliography.....................................................................................................277

Contents: Volume IIAppendices………………………………………………………………………………………………..291Details available in Volume II

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List of Tables

Table Page

1.1 Current diagnostic criteria for Rett syndrome (Neul et al., 2010) 15

3.1 Ties by formality and direction (Ferlander, 2007) 55

3.2 Ties by strength and diversity (Ferlander, 2007) 55

4.1 Research questions, relationship to Bourdieu’s concepts and methods

used

82

4.2 Hypotheses to be tested in Stage 1 86

4.3 Recruitment channels for survey respondents 95

4.4 Comparison of individual data from Rett UK database with sample

demographic data

96

4.5 Household information comparison between Rett UK members and

survey respondents

98

4.6 Demographic details of interviewees by mode of interview chosen 106

5.1 Frequencies and percentages of use of the Internet among key groups 119

5.2 Frequencies and percentages of use of generic online support and advice

among key respondent groups

121

5.3 Frequencies and percentages of use of online peer support among key

respondent groups

123

5.4 Relationships between key variables and use of online support and

information among survey respondents

125

5.5 Percentage of use of each platform for support and information related

to caring for a child with Rett syndrome

127

5.6 Use of different platforms by age, income and education 128

5.7 Social differentiation of the use of different online platforms by income,

education and age

129

5.8 Rated generic online support as ‘important’, ‘very important’ or

‘essential’ by age, income and education group

132

5.9 Social differentiation of the use of different online platforms by income,

education and age

132

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10

Table Page

5.10 Benefits experienced from online peer support by age, income, education

and occupation

134

5.11 Social differentiation of the benefits of reading online peer support sites

and groups

135

5.12 Benefits experienced from contact with another carer on an online

support site by age, income and education

138

5.13 Benefits experienced from contact with another carer on an online

support site by occupation

139

5.14 Social differentiation of online support use within income, education, age

of parent and occupational groupings

141

5.15 Descriptive statistics on key variables by age group of respondent 143

5.16 Strength of relationship between age of respondent and key variables of

interest

144

5.17 Social differentiation of use of the Internet and online sources of

information and support by key variables

146

5.18 Social differentiation of use of different online platforms and benefits

gained from online support sites and groups

148

5.19 Frequencies of use by age of child, where age of child is most strongly

associated with differentiation

149

5.20 Frequencies of use by years since diagnosis, where years since diagnosis

are most strongly associated with differentiation

150

7.1 Use of different modes of support by survey respondents 226

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List of Figures

Figure Page

1.1 Timeline showing technological, social, research and medical context

for survey respondents

21

6.1 Amassing expertise and social capital and repairing biographical

disruption – parents’ changing needs over time

161

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Chapter 1. Why now and why Rett syndrome?

Understanding the context of this research

This chapter has three aims: to outline the rationale for my research, to orient

readers to the socio-historical context of Rett syndrome and to describe how this

thesis is organised. In section 1.1, I outline briefly why there was a need for this

research and the broader significance of my findings. In section 1.2 I provide a

brief introduction to the socio-historical context of caring for someone with Rett

syndrome. Finally, section 1.3 summarises the content of the following chapters

in this thesis.

1.1 The need for this research now

The development of the Internet has changed the wider landscape of parenting

and health, both in terms of providing wider access to a range of health

information (Nettleton, 2004) and opportunities to seek advice from remote

peers (Davidson, 2008; Saukko, 2009; Valentine & Skelton, 2008). These

developments may be particularly pertinent for parents of people with rare

genetic syndromes, following the rapid development of new technologies and

research in the wake of the Human Genome Project, and the ‘explosion’ of

syndrome-specific sources of online support and advice (Skinner & Schaffer,

2006). Online peer support sites can provide information and advice to parents

of people with rare syndromes and disabilities (Huws, Jones, & Ingledew, 2001;

Jones & Lewis, 2001; Leonard et al., 2004; Schaffer et al., 2007). However, as I

argue in Chapters 2 and 3, our understanding of how the use of online support

and information fits into wider information-seeking, online and caring practices

is fragmented along methodological, theoretical and ultimately epistemological

lines. This has limited our understanding of how the use of online support and

information fits into a wider social and historical context, and how and why

carers’ use of online support and information might be socially differentiated.

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In this thesis I take a novel methodological and theoretical approach to

this field, described in Chapters 3 and 4. This brings together approaches and

ideas from Internet research, the sociology of health and illness and the

theoretical work of Pierre Bourdieu. My aim was to provide a more coherent

understanding of whether the use of online support and information is socially

differentiated, how it fits into wider everyday social practices and to shed new

light on the interplay between structural and micro differences in the use of

online support and information among parents of people with a rare syndrome.

As discussed in Chapter 4, the focus on a single case study group meant I could

avoid some of the pitfalls of previous research, where differing experiences and a

different socio-historical context makes drawing conclusions across groups

difficult. The research findings, reported in Chapters 5-7 and summarised in

Chapter 8, provide a rich and coherent picture of how parents’ use of online

support is influenced by a range of intersecting factors, and how combining this

with an understanding of social differentiation can produce results that shed

light on the dynamic use of a range of information and support over a carer’s

career.

The following section describes my choice of case study group – parents

of people with Rett syndrome. This acts as an orientation for the reader into the

social, historical, technological, support and medical context within which caring

practices are and have been carried out by parents of people with Rett

syndrome.

1.2 The choice of parents of people with Rett syndrome as a case

study

This section describes both the process of choosing this case study group as well

as orienting readers to the socio-historical context of Rett syndrome and how it

might influence the information and support-seeking needs of parents.

1.2.1 Why Rett syndrome?In previous employment I have worked with people with profound and multiple

learning disabilities and their families and developed a reasonable awareness of

14

the kinds of caring dilemmas parents face with little local support or information.

I became interested in the use of the Internet among parents of people with rare

syndromes while working at the learning disability charity Mencap and

contributing to a working group on the development of an online parents’ forum.

While carrying out my Masters in Social Research at the University of

Surrey, I created a research proposal for an online methods assignment that I

later developed into this research. I was particularly interested the experiences

of parents of people with a rare syndrome, whose information needs I felt were

distinct, for the reasons cited above. This raised interesting questions about how

parents of people with rare syndromes involving high and complex caring

demands may use online information and particularly what role online peer

support might play in their wider information seeking and caring work.

There were a number of reasons why I felt that parents of people with

Rett syndrome were a particularly suitable case study group to explore these

issues. Firstly, profound and multiple learning disabilities (PMLD) in females are

often associated with Rett syndrome (Kerr, 2002). Secondly, Rett syndrome is

very rare, with an estimated prevalence of 2500 females in the UK (Neurological

Alliance, 2003), with male prevalence much lower and estimates not available

(Kerr, 2002). This reduces the likelihood of parents having local peer support.

Thirdly, Rett syndrome has been found to occur randomly in 99.2% of cases

(Mari et al., 2005) meaning examination of social differentiation of the use of

online support is a meaningful exercise. Fourthly, there are a number of online

support sites aimed at parents of people with Rett syndrome as well as sites and

email groups for parents of people with special needs or PMLD. Fifthly, Rett

syndrome is at the forefront of a new wave of research into the theoretical

reversal of neurological symptoms in genetic syndromes (Guy et al., 2007). It is

likely that genetic research will continue to develop and challenge our

understanding of various syndromes and conditions, both rare and common, and

raise the possibility of new treatments and approaches to medical intervention

and support. I therefore felt that parents of people with Rett syndrome would

also provide some timely insights into the role of online information and support

in the wider caring practices of carers of people with neurological syndromes at

a time of great social and technological change.

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1.2.2 The shifting nature of the diagnosis of Rett syndrome

The characteristics of what is now called Rett syndrome were first described in a

German academic paper in 1966 by Andreas Rett and in the late 1970s by

Japanese researchers, Ishikawa and colleagues (1978) (Smeets et al., 2011).

However, it was not until 1981 that Hagberg, a Swedish clinician, shared his

findings at the Manchester Meeting on Child Neurology (Smeets et al., 2011) and

subsequently published a paper for an international journal audience (Hagberg,

et al., 1983). This led to a more widespread knowledge of the syndrome (Lotan et

al., 2010; Smeets et al, 2011) and to the formation of the International Rett

Syndrome Association in America in 1984 (now the International Rett Syndrome

Foundation) (IRSF, 2008) and of the Rett Syndrome Association (now Rett UK) in

the UK in 1985 (Rett UK, n.d.).

The diagnostic description of Rett syndrome has changed over time and

Table 1.1 is a reproduction of the most recent criteria developed by clinicians

(Neul et al., 2010). As can be seen in Table 1.1, these criteria allow for a wide-

ranging typical diagnosis and a range of atypical manifestations.

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Table 1.1 Current diagnostic criteria for Rett syndrome (Neul et al., 2010)

Consider Rett syndrome diagnosis when postnatal deceleration of head growth is observed

Required for typical or classic Rett syndromeA period of regression followed by recovery or stabilisation

1. All main and all exclusive criteria2. Supportive criteria are not required, although often present in typical Rett syndrome

Required for atypical or variant Rett syndrome1. A period of regression followed by recovery or stabilisation2. At least 2 of the 4 main criteria3. 5 out of 11 supportive criteria

Main criteria1. Partial or complete loss of acquired purposeful hand skills2. Partial or complete loss of acquired spoken language1

3. Gait abnormalities: impaired (dyspraxia) or absence of ability (apraxia)4. Stereotypic hand movements such as hand wringing/squeezing, clapping/tapping,

mouthing and washing/rubbing automatisms

Exclusion criteria for typical Rett syndrome1. Brain injury secondary to trauma (peri- or postnatally), neurometabolic disease or

severe infection that cause the neurological problems2. Grossly abnormal psychomotor development in the first 6 months of life2

Supportive criteria for atypical Rett syndrome3

1. Breathing disturbances when awake2. Bruxism4 when awake3. Impaired sleep pattern4. Abnormal muscle tone5. Peripheral vasomotor disturbances6. Scoliosis/kyphosis5

7. Growth retardation8. Small cold hands and feet9. Inappropriate laughing/screaming spells10. Diminished sensitivity to pain11. Intense eye communication and eye-pointing behaviour

Regression is a key feature required for all kinds of diagnosis, which means that

an atypical form known as ‘early onset seizure variant Rett syndrome’ was

excluded from this description of Rett syndrome. It is important to note that the

diagnosis of even typical Rett syndrome can range in severity in terms of, for

example, ability to use a limited amount of spoken language or retain any

1 This includes babbling2 This means major normal milestones are not met, e.g. head control, swallowing, social smiling3 Some of these criteria may not manifest until someone is older, in which case, ‘probably atypical Rett syndrome’ should be the diagnosis and should be reassessed as they get older.4 Teeth grinding5 Forms of severe curvature of the spine

17

mobility. In addition, for atypical kinds, the supportive criteria may not be

observable in young children, so a definitive diagnosis may not be possible until

a child is older. An important aspect of diagnosis noted in the accompanying

article is that as Rett syndrome has now been found in boys, boys who meet the

typical diagnosis of Rett syndrome should now be given this diagnosis (Neul et

al., 2010).

The development of gene technology and identification of gene mutations

involved in Rett syndrome has led to a range of challenges and changes to how it

is conceptualised and diagnosed (Smeets et al., 2011). Numerous mutations are

related to symptoms of Rett syndrome and mutations on a particular gene

(MECP2) are also found in other neurological syndromes. This has led to

disagreements about whether Rett syndrome should be diagnosed by genetic

test or clinical assessment (Neul et al., 2010). At the time of carrying out my

research, the NHS policy was to make a clinical diagnosis first, with the

possibility that a blood test ‘can be carried out’ to look for the specific genetic

marker (NHS, 2012). The technology for testing for genetic markers of Rett

syndrome has also changed over time, meaning that certain kinds of mutations

that were not detectable until the turn of the century are now routinely sought if

initial tests don’t find an obvious genetic mutation (Smeets et al., 2011).

In summary, parents’ experiences of the diagnosis of Rett syndrome take

place in shifting and contested contexts. The diagnosis itself may not be

definitive as it may be given provisionally and be subject to change. Given the

continuing developments in genetic diagnosis of Rett syndrome, it is also

possible that a definitive diagnosis may later be changed if it is found to be

characteristic of a particular genetic profile.

1.2.3 Difficulties in anticipating the prognosis of Rett syndrome

As well as variations in symptoms and severity of symptoms, Rett syndrome is

not a static condition, so attempts have been made to create a stage model of the

syndrome, which have been summarised by Smeets and colleagues (2011).

Characteristics of these stages are described in more detail in Appendix 1.

Stage I involves some developmental problems that are usually within the

parameters of what is considered to be normal development, so unlikely to be

18

considered unusual by medical professionals. Stage II, which involves rapid

regression and loss of skills is, as argued by Neul and colleagues (2010), the

hallmark of Rett syndrome. It is a very distressing period for parents. The loss of

the young child, who had appeared to be developing normally, has been

described vividly by Beth Johnsson in her blog for The Independent:

the little girl you have watched turn miraculously from a baby into a

toddler, who can say ‘mummy’ and ‘duck’ and babble incessantly to her

dolls, who can crawl and is just starting to toddle around delightfully

unsteadily, who can turn the pages of her favourite books and grasp an

open cup firmly with two hands – this girl is gone.

(Johnsson, 2013)

Stage III is a mixture of loss of motor skills, an ‘awakening’ and some regaining of

skills, however some children move directly from Stage II to Stage IVB. Stages

IVA and IVB involve deterioration (muscle wastage, degeneration of tissue and

‘frozen rigidity’), however eye-pointing communication is still preserved even at

this stage (Hagberg, 2002; Smeets et al., 2011, p. 116).

The differing manifestations of the stages mean there is a great deal of

variation in how these stages develop in individuals. The length of some stages

can vary considerably (e.g. one stage can last up to decades), some stages can be

skipped entirely and there is symptom variation within the stages themselves.

Nonetheless, these descriptions are the best current outline of how the

syndrome develops and changes over time and are well cited in the literature.

A current area of interest is whether specific genetic profile can predict

the manifestation of Rett syndrome (see research undertaken by the

International Consortium of Rett Syndrome Clinical Researchers6). However,

Halbach and colleagues (2012) suggest that clinicians should be careful about

using a genetic profile as a way of predicting an individual’s prognosis because

while they have found correlation between the specific characteristics of Rett

syndrome and genetic profile, the severity of the syndrome varies greatly.

Predicting the lifespan of somebody with Rett syndrome is problematic,

6 See http://www.rettsearch.org for details.

19

given the range of associated health problems and a high relative incidence of

unexplained and sudden death (Kerr et al., 1997). However, one person with Rett

syndrome has been recorded as surviving to 79 years old (Lotan et al., 2010).

There is therefore a great deal of uncertainty in the current research,

meaning the severity of the impact of Rett syndrome on an individual is currently

impossible to predict. This means that trying to understand the meaning of the

diagnosis for one’s child is very difficult.

1.2.4 The care needs of people with Rett syndrome

Hagberg’s (2002) list of common symptoms (updated by Smeets et al., 2011) is

helpful in outlining the most common likely support needs of people with Rett

syndrome. These symptoms include serious medical problems that require

continual (and potentially increasing) care support (severe curvature of the

spine) and which, in some cases, can lead to sudden death (irregular breathing).

Some of these symptoms will be particularly distressing for carers to manage on

a daily basis (like long – sometimes days-long – episodes of unexplained

screaming, seizures that may or may not be epileptic, and eating and digestive

problems). Other symptoms will be very demanding and difficult to manage,

raising ethical dilemmas in caring practices (hand stereotypes, sleep problems,

teeth grinding, and impaired perception of pain).

1.2.5 A future possibility of treatment?

The most dramatic and high profile development in recent research has been the

apparent reversal of the observable effects of Rett syndrome-like behaviours in

mice, where the expression of the MECP2 gene was artificially deactivated and

then reactivated (Guy and colleagues, 2007). This suggested that the

neurological impact of the MECP2 mutation may not be permanent and

irreversible, although it “do[es] not suggest an immediate therapeutic approach”

to Rett syndrome (Guy et al., 2007, p.1147).

In the wake of this finding, a number of charities were set up in the UK

and elsewhere to fundraise for further research. In the UK, Reverse Rett, formally

the Rett Syndrome Research Trust UK, works in partnership with the US-based

20

Rett Syndrome Research Trust “to speed treatments and cures for Rett

Syndrome and related MECP2 disorders” (Reverse Rett, n.d.). Current strands of

(animal and cell) research funded by Reverse Rett include learning more about

the detailed cell mechanisms behind Rett syndrome, searching for ways to

increase MeCP2 protein, finding ways to bypass MeCP2 and finding ways to treat

the individual symptoms of Rett syndrome (Reverse Rett, n.d.). Since this

research began a new organisation, Cure Rett, was founded that aims both to

raise money to provide support for families and for researchers “to develop

treatments and find a cure for Rett Syndrome” (Cure Rett, n.d.)

In terms of treatments for specific symptoms of Rett syndrome, there has

been considerable progress in research into the heart and breathing-related

problems in Rett syndrome and the neuronal mechanisms underlying them

(Smeets et al., 2011). At the time of carrying out this research, the search for a

cure was ongoing.

It is beyond my competence as a researcher to assess the feasibility of a

‘cure’ for Rett syndrome, so I can only note that this is a complex area of current

research that is difficult for a non-specialist to understand. This means that many

parents (barring those of course who are specialists in relevant fields) will need

to rely upon intermediaries to communicate the meaning of these strands of

research and are likely to come to different understandings and beliefs about

what ‘the cure’ might mean for their child. The field of ‘cure’ research therefore

has the potential to be a very emotive but also very complex topic for parents

attempting to understand the meaning of the diagnosis for their child.

1.2.6 Mapping the socio-historical experiences of different carers

In summary, Rett syndrome is still a relatively new diagnosis. Gaining a diagnosis

of Rett syndrome can be difficult and is subject to change over time. Tests for

Rett syndrome have developed over time and now can include a genetic

component. The prognosis of Rett syndrome, particularly the onset and severity

of symptoms, is currently unpredictable. Research into ‘the cure’ is in its early

stages although there had been advances in the treatment of specific symptoms.

Available support and information sources have changed over this period, as

21

have the communication channels available for parents wishing to make contact

with peers and useful organisations.

In order to provide a context for the remainder of this thesis, Figure 1.1

summarises the important milestones in the development of relevant research,

technology and support related to Rett syndrome and places the experiences of

survey respondents within this context. As can be appreciated, parents with

children of different ages are likely to have had quite different experiences of

gaining a diagnosis, of attempting to understand the meaning of Rett syndrome

for their child, of the kinds of information and support available, and of access to

information through different communication channels.

1.3 The structure of this thesis

This chapter has provided a context for the rest of the thesis, by arguing for the

development of a better and more coherent understanding of the role of online

support and information in the wider caring practices of parents of people with a

rare syndrome. It has provided some contextual background about the case

study group of parents of people with Rett syndrome, putting forward a case for

why they are a significant group that can add to our wider understanding of the

role of online support and information in the caring practices of people with a

range of rare syndromes, particularly those where the genetic basis is being

researched.

22

1963 2013

Figure 1.1 Timeline showing technological, social, research and medical context for survey respondents

1984: International

Rett Syndrome

Association (charity)

formed in US

1983: Hagberg

publishes paper on

Rett syndrome in international

journal

1981: Hagberg presents paper

on Rett syndrome

Manchester Meeting on Child

Neurology

2011: Youngest children with Rett syndrome born

to survey respondents

1963: Birth of oldest child with Rett syndrome

related to survey respondent

1981: First diagnosis of Rett

syndrome given to child of survey

respondent

2013: Most recent diagnoses of Rett

syndrome given to children of survey

respondents

1985: Rett Syndrome Association (later Rett UK) founded

1999: Random & inherited

forms of Rett syndrome

connected to mutation in

MECP2 gene. Beginning of

period of discovery of

multiple gene mutations

connected to Rett syndrome

& other syndromes & gene testing

2007: Theoretical ‘reversal’ of

Rett syndrome

symptoms in mice

2009: Rett Syndrome Research

Trust/Reverse Rett (UK) set

up

2011: Cure Rett (UK)

set up

1994: First

public access to

the Internet in the UK

2004: Facebook

launched in UK

1966: Andreas Rett describes characteristics of syndrome later to be called Rett syndrome in German journal

1978: Ishikawa & colleagues describe

similar characteristics

23

Chapter 2 develops my argument that our current understanding of the use of

online support and information among parents of people with rare syndromes is

limited and fragmented, and suggests how approaches within the fields of

Internet research and the sociology of health and illness could be combined to

address aspects of this fragmentation. Chapter 3 explores the utility of

Bourdieu’s concepts of social and cultural capital, fields and habitus for carrying

out this research. It ends with a set of research questions that aim to develop a

more coherent approach to understanding the interplay between structure and

agency in the use of online support and information among parents of people

with a rare syndrome. Chapter 4 describes the mixed method, mixed mode

approach used to explore the research questions outlined in Chapter 3. Chapters

5-7 present the findings. Chapter 5 presents data on the social differentiation of

the use of online support and information among survey respondents. Chapter 6

describes how the use of online support and information in this sample is

contingent upon habitus, social and cultural capital, expertise and needs. Chapter

7 explores the position of online information and support seeking within existing

power structures and in relation to existing inequalities. Finally, Chapter 8 brings

together the findings in the light of the research questions posed in Chapter 3. In

this final chapter I summarise how the data presented in this thesis has added to

our current understanding of the use of online support and information in the

wider caring practices of parents of people with rare syndromes.

24

Chapter 2. Fragmented understandings: the role of

online support and information in the caring practices

of parents of people with a rare syndrome

Skinner and Schaffer (2006, p. 16) noted how the “explosion of new knowledge

and technologies stimulated by the Human Genome Project” and the increase in

information accessible through the Internet “has resulted in countless Web sites

devoted to expert and lay knowledge of specific genetic disorders and to

advocacy and support groups formed around them.” The wider availability of

such sources has been hailed by some sociologists as a positive development,

empowering patients and carers (Nettleton et al., 2005). Thus online support has

been considered as valuable to members of isolated (Davidson, 2008; Valentine

and Skelton, 2008) and geographically dispersed groups (Saukko, 2009;

Zaidman-Zait and Jamieson, 2007), for parents with high caring responsibilities

and parents who also work full-time (Zaidman-Zait and Jamieson, 2007). Some

commentators have argued that these sources may be particularly valuable to

parents of people with rare syndromes. Zaidman-Zait and Jamieson (2007)

highlighted the importance of the Internet for information about rare genetic

syndromes, including details of treatment and behavioural modification

strategies that may not be known by doctors and other health professionals

consulted by parents. In terms of online peer support groups, they suggest that

these might be particularly beneficial for parents of children with disabilities

who may have limited access to offline social support and sources of information

(Zaidman-Zait and Jamieson, 2007) Similarly Gundersen (2011) argued that

parents of people with rare syndromes may encounter a lack of expertise among

local health professionals.

However, as is argued below, our current understanding of the role of

online support and information in the caring practices of parents of people with

a rare syndrome is fragmented, both methodologically and theoretically. As a

result, it fails to take full account of the wider social context within which

Internet use and health and caring practices occur. In particular it tends to ignore

25

alternative sources of support and information, the social differentiation of the

use of the Internet and information in wider caring practices, and the existing

knowledge and skills of parents.

The first section of this chapter outlines arguments for researching the

use of the Internet as it is embedded in everyday life. The second section

describes how the use of the Internet continues to be socially differentiated and

how much of the research into the everyday use of online information and

support fails to take this into account, limiting the conclusions that can be drawn.

The third section explores our current understanding of how online health and

support seeking relates to everyday caring practices, highlighting the theoretical

and methodological limitations of these findings. The final section describes how

a more coherent methodological and theoretical approach could improve our

understanding of the role of online support and information in the lives of

parents of people with a rare syndrome. It is suggested that this could be

achieved through the use of Bourdieu’s concepts of capitals, habitus and fields

and the application of mixed methodology to explore use in a case study group of

parents of adults and children with Rett syndrome. The following chapter

explores Bourdieu’s concepts in more detail, outlining how they have been used

in Internet research to date and how they will be applied in this thesis to explore

the role of online support and information within this group of parents.

2.1 Use of the Internet and e-health in everyday life

As access to the Internet has increased in some parts of the world, theories about

its place in society have developed and changed, reflecting, to a certain extent, its

status as a banal part of everyday life (Hine, 2015). This has been reflected in a

number of calls to treat the Internet and interactions online as embedded within

everyday life, both within Internet studies and the sociology of health and illness.

26

2.1.1 The Internet in everyday life

A number of scholars in Internet studies have suggested that researchers treat

the Internet as part of everyday life. As will be seen below, this is associated with

a focus on mundane use. This perspective avoids the polarised utopian and

dystopian perspectives, which tend to suggest that access to the Internet is either

democratising and transformational or that it harms social relationships.

In an influential book Haythornthwaite and Wellman (2002) argued for a

recognition of the ‘everyday’ nature of online activities in the ‘second age of the

Internet’ (Haythornthwaite and Wellman, 2002, p. 4). They posited that this

reflected a number of factors that had led to the greater embedding of the use of

the Internet within everyday life. These were: increased access to the Internet;

more time spent online; greater use at home; greater use for work outside

working hours; greater use in education; a felt sense of needing to ‘keep up’ by

being online; and a change to a ‘networked society’. As part of this work they

critiqued research that explored the use of the Internet in and of itself, which

they argued created a false dichotomy between the online and offline, such as

studies of ‘online communities’. Instead they argued that our understanding of

the Internet needs to be embedded in wider considerations of social connections,

technologies and demographic characteristics, while remaining aware of the

impact of not being online in a world where Internet use is becoming more

embedded. This analysis was also alive to (then only just emerging) differences

in the differentiation of how the Internet is used by those with access, such as

time spent online, the purposes to which it is put, and how these might be

socially differentiated and lead to further ‘digital divides’. However, as will be

argued here, much research – particularly into online support groups – has

continued to ignore the embeddedness of the use of such groups in everyday life.

This strong propensity to treat the Internet as a separate realm has led to

a number of reiterations of this argument. For instance, Baym (2009) echoed

Haythornthwaite and Wellman (2002) in arguing for the importance of seeing

the use of the Internet as a mundane, everyday part of human communication.

She noted how many of the polarised ideas about the Internet reflected cultural

concerns about technology and should be considered as part of this wider trend:

27

Most communication technologies throughout history have raised issues

about the quality of interaction, the nature of community, the status of

relationships, the authenticity of identity, the safety of children, and the

limits of trust and privacy

(Baym, 2009, p. 720).

Baym (2009) argued that research into individual sources of peer

interaction (boards, newsgroups, chat rooms, social network sites) have

provided much information about what happens within them, but that “we know

next to nothing about how individuals and groups link these contexts to one

another as they traverse the Internet” (Baym, 2009, p. 721). Instead, she argued,

the use of such support should be understood as interwoven with offline

activities and as part of an increasingly multimodal way of communicating with

other people, and the underlying dynamics, not the medium of communication,

should be the focus of research. As we shall see next, these concerns and this

approach have been reflected in discussions about understanding the role of the

Internet in modern health and caring practices.

2.1.2 Theories about the relationship of online information and support to

everyday life

Over the last decade, a small number of sociologists have argued that the use of

online health information meshes with wider information and support seeking

practices (Nettleton et al., 2004; Orgad, 2005; Wyatt et al., 2010; Ziebland, 2004).

They have argued that research into online health practices tends to be based on

decontextualised survey findings or qualitative descriptions of the experiences of

active users of online peer support forums (Wyatt et al., 2010; Orgad, 2005),

which, as will be described below, continues to be an issue in much of the

literature today.

The literature in this field has been dominated by a preoccupation with

the impact of the status of lay health information online, shared through a range

of online peer support sites, and the effects on lay-professional relationships.

Nettleton (2004), summarising a range of literature in the sociology of health

and illness (e.g. Hardey, 2001; Webster, 2002), argued that we have moved from

28

a period of ‘mechanical’ to ‘informational’ medicine, which has developed in

concert with changes in technology. Citing Lash (2002), she argued that there is

an ‘e-scape’ where “[t]he spaces, sites and locations of the production of medical

knowledge are now more diffuse and are invariably mediated by means of digital

technologies” (Nettleton, 2004, p. 673). In this e-scape, experiential, lay

knowledge is presented alongside biomedical and commercial information,

including sites, newsgroups and chat rooms managed by a range of institutions

(charities, professional associations, commercial companies and pressure

groups) and individuals. She argued that this impacted on how people manage

illness, with a shift from doctors to ‘expert patients’ managing illness and the rise

of evidence-based medicine, which has led to a more collaborative model of

doctor-patient relationship. Ziebland (2004), drawing upon the work of Muir

Gray (2002), discussed the role of the ‘expert patient’. She raised the possibility

of whether “[o]ne of the consequences of the changing relationship between

patients and doctors, a decline in trust and easier access to health information

may be the emergence of a felt imperative to be (or present oneself as) an expert

and critical patient, able to question one’s doctors and nurses and locate effective

treatments for oneself” (Ziebland, 2004, p.1792).

However, other commentators, at different times, have been more critical

of the wider impact of the Internet on everyday health practices. Henwood and

colleagues (2000) critiqued the depiction of the rise of the ‘informed patient’

(after Bury, 1997, similar to the 'expert patient' discussed above), which was

thought to lead to a greater responsibility by patients to negotiate and consider

treatment alternatives. They discussed how Giddens's (1991) work on patients

as ‘reflexive consumers’ had been used by others to describe how the Internet is

used in a positive way to empower patients (such as Hardey, 1999), but

questioned whether this role was uncritically and automatically taken up by all

patients. In a later paper, Henwood and colleagues (2003) argued that this was a

form of technological determinism, where the mere presence of information

online was assumed to increase empowerment. They presented empirical data in

this paper demonstrating that this ‘informed patient’ role was not adopted by all

women seeking help relating to the symptoms of the menopause in their study.

29

Nettleton and colleagues’ (2005) paper, cited above, summarised

approaches to lay health information online as ‘celebratory’, ‘concerned and

dangerous’ and ‘contingent.’ ‘Celebratory’ responses are broadly utopian, where

lay expertise is valued, there is greater democracy and where there can be

resistance to dominant medical practices, such as mass immunisation.

‘Concerned and dangerous’ perspectives come mostly, but not only, from the

health literature, and can be concerned with either misinformation or increasing

demand on services. In this perspective, non-health professionals using the

Internet for health information are seen as lacking the ability to assess the

credibility of information. The third, ‘contingent’ perspective was espoused by

Nettleton and colleagues (2005) and drew together the views of others cited

here, including Henwood and colleagues (2003) and Ziebland (2004). This

perspective allowed that lay people can make informed decisions and argued

that the other two perspectives are overstated. Nettleton and colleagues (2005)

explicitly linked this to the ‘everyday use’ of the Internet perspective (e.g.

Haythornthwaite and Wellman, 2002). The ‘contingent’ perspective allowed

variation in the extent to which people want to be ‘empowered’, argued that use

is enmeshed with alternative sources of support and supports an enriched

relationship with professionals, which elsewhere they have argued is related to

having a shared lexicon or frame of reference (Nettleton et al., 2004).

However, these exhortations to consider the everyday, embedded use of

the Internet have not always been heeded. For example, in an analysis of the

conceptualisation of social networking sites (SNSs) in the clinical health

literature, Koteyko and colleagues (2015) found that these papers continued to

characterise online information as being inherently empowering or risky,

echoing earlier technologically deterministic explanations. They reiterated calls

for research to take “into account the diverse and multiple factors that shape

health-related behaviour […] instead […] focusing on why, when and how these

new technologies contribute to the everyday management of illness,” focusing on

how they modify rather than revolutionise health practices (Koteyko et al., 2015,

p.13). However, even in the social sciences, largely atheoretical lists of benefits,

divorced from a wider social context, continue to be published. For example,

Ziebland and Wyke (2012), while highlighting the continuing lack of theoretical

30

and methodological bases for researching the impact of online peer support

sources on health outcomes, produced a comprehensive but ultimately rather

dazzling list of potential benefits and harms, loosely presented under broad

thematic headings. Although there was an acknowledgment of the tendency for

this research to reproduce existing idealised or negative ideas about what online

peer support could offer, the description of accounts of net use and associated

fears and risks of harm were uncritically presented as examples of the impact of

online peer support, with little attention paid to how these accounts might

reproduce wider narratives about the Internet, such as the idea that

“overengagement with online communities can be detrimental to life ‘off-line’”’

(Ziebland and Wyke, 2012, p. 240).

In a break from discussions on lay health, Kivits has argued for the

influence of other practices to be taken into account in understanding the use of

the Internet in health. In 2009 she argued for the use of a mediated health

perspective, which takes into account the everyday use of media, everyday

health practices and everyday information seeking (Kivits, 2009). More recently

she argued that the sociological perspective on e-health, in the era of Web 2.0,

could enter a new phase where the role of technology is acknowledged alongside

the embeddedness of online health experiences in everyday life (Kivits, 2013).

This is an interesting aspect that is largely unexplored in the current sociological

research, which does not tend to differentiate between different sources of peer

support. This chimes with Seale's (2005) reminder to consider the impact of

algorithms on searches online and the emergence of multidisciplinary work that

seeks to avoid the sociological ‘black boxing’ of technical aspects of the web

(Halford and Carrigan, 2014). As will be seen below, the consideration of aspects

of technology – particularly the different mediums through which information is

accessed online – has, as yet, been largely neglected in this field.

However, there has been a much more significant blind spot in current

research into the use of online support and information in everyday health

practices. While scholars in Internet studies have emphasised the need to

consider the continuing social differentiation of access to and use of the Internet

(Haythornthwaite and Wellman, 2002; Hine, 2015), this is rarely considered in

discussions about the use of the Internet in everyday health practices. The next

31

section presents evidence of social differentiation in Internet use in the UK and

summarises what is currently known about its impact on the use of health and

caring resources.

2.2 Everyday use – but not for everybody? The social differentiation

of Internet and e-health use

As access to the Internet has increased in the UK and US, attention has turned

from an original ‘digital divide’ (between those with and without access) to a

focus on differentiated use in terms of how the Internet is accessed, the skills

required, the experience of using the Internet and the kinds of technology used

to access it. However, as will be demonstrated below, access to the Internet in

the UK remains highly socially differentiated in terms of age, income and

education.

This section summarises current empirical research into the social

differentiation of access to the Internet, use of the Internet more generally and

use of the Internet specifically for health and caring purposes. As will be seen,

there is strong evidence for continuing differentiation in terms of who is and is

not online, their experiences of being online and their use of different online

platforms. The evidence is weaker in terms of use of the Internet for health and

caring information and support but still suggestive of social differentiation. It is

therefore argued that any exploration of the use of online support and

information should take into account the impact of differentiated use of the

Internet and the potential differentiation of the use of online health and caring

resources.

2.2.1 Social differentiation in use of the Internet

Access to the InternetThe Oxford Internet Surveys (OxIS) run by the Oxford Internet Institute, have

been measuring use of the Internet in the UK since 2003. They use multi-stage

32

probability samples of 2000 UK residents, meaning their findings are

generalisable to the UK population as a whole, although their response rates

have dropped in recent years to around 50 per cent. Nonetheless, they remain

the authoritative source of information about use of the Internet in the UK. The

latest findings of the OxIS were collected in 2013, at the same time as the data

presented in this thesis, so provide a particularly relevant context for this thesis.

OxIS data shows that use in the UK population rose from 59 per cent in

2003 to 78 per cent in 2013. Among people who have never used the Internet or

who have stopped using the Internet, the majority (91% and 71% respectively)

do not intend to get online within the next year, meaning that there may be a

group of people who will remain offline for at least the immediate future.

Although the proportion of current users is high, this masks large

disparities in use among some groups, where in some cases the majority remain

offline. As a whole, therefore, Internet users in 2013 “remain[ed]

disproportionately likely to be young, well educated and wealthy” (Dutton and

Blank, 2013, p. 19). Older people are the most excluded, with half as many as in

the general population – 39 per cent - using the Internet (Dutton and Blank,

2013). Despite gains in the lowest income group, household income still has a

positive relationship with level of Internet use, where only 58 per cent of people

in the less than £12,500 bracket used the Internet in the last OxIS, with use

moving up to 88 per cent in the next earnings category (£12,500-£20,000), while

use is almost ubiquitous among people earning over £40,000 (Dutton and Blank,

2013). Similarly, the difference between those who have no qualifications and all

other groups is striking, with only 40% of people with no qualifications being

online (this increases to 84% among people holding basic qualifications).

The OxIS includes questions about reasons for giving up the Internet or

not using it. Reasons for not using it include costs, skills, difficulties getting

access and lack of interest. However, among people who have given up use of the

Internet, the main reason is lack of interest, which is cited by 96 per cent of

retired ex-users. However, 67 per cent of retired people also cite that it is ‘not for

people of my age.’ Although Dutton and Blank (2013) argued that this is

analogous to a lack of interest, this seems more like a sense of exclusion than a

33

choice, which is an aspect that will be explored in more detail in the following

chapter in relation to social capital.

Differentiation in how the Internet is usedAs noted above, research has moved beyond explorations of the differentiation of

access to the Internet into explorations of how use of the Internet may be

differentiated among those with access. Since the turn of the millennium, there

has been discussion of how, as access increases, use of the Internet may become

socially differentiated. This is often termed ‘digital inequality.’ For example, in a

much-cited and influential paper, DiMaggio and colleagues (2004) laid out a

compelling argument for the development of differentiated access to the Internet

among users. In this argument they drew upon pre-Internet conceptions relating

to the social reproduction of existing inequalities: Bourdieu’s concept of cultural

capital (Bourdieu and Passeron, 1977), as well as the “knowledge gap”

hypothesis (Tichenor et al., 1970), where people of higher socioeconomic status

can adopt new technologies earlier and, due to having higher education, can use

new information from a range of sources more effectively. DiMaggio and

colleagues (2004) highlighted five areas of inequality: technical apparatus,

autonomy of use (which is related to ease of access aspects, such as location and

monitoring of use), skill in using the Internet, availability of social support from

more experienced users and variation in the purposes for which it is used. A

similar argument was made by Hargittai (2008), who cited Bourdieu (1973) as

an influence. She suggested that this greater ability to utilise the Internet would

lead to the accrual of different forms of capital (financial, social, human and

cultural), increasing existing inequalities. Hargittai (2008, p.943) also provided

an interesting counter to the current discussions about digital inequality versus

digital choice, arguing that “[w]hile it may be that some people opt out of ICT use

based on an informed understanding of all that the Internet has to offer, much

more likely is that people do not realize the many necessities and benefits of

digital media.”

A number of studies have supported aspects of differentiation within

DiMaggio and colleagues’ (2004) initial framework. In a review of surveys of

American users from 2000 to 2008, Schradie (2011) provided a good overview

34

of the multiple factors discussed in the literature that describe differences in

how one uses the Internet. These include equipment, quality of online

experience, frequency of use, location of use and cultural aspects related to class.

More recent studies have investigated the links between social stratification and

the level of digital skills. One example was a test carried out under experimental

conditions by van Deursen and van Dijk (2010). This explored the social

differentiation of skills related to using the Internet and finding information.

They tested ‘operational’ skills (operating a web browser, using search engines

and using Internet-based forms), ‘formal’ skills (navigating through hyperlinks,

not becoming disorientated when navigating within and between sites), and

content-related skills, which related to finding information and using the

Internet in a goal-oriented way. They found that older people did not perform as

well on tasks related to operational and formal Internet skills but did not differ

in content-related skills. They also found that more educated people, with easier

access to the Internet, had higher levels of all skills. However, they found no

differences related to socioeconomic status or availability of specialist social

support with online skills. It is possible that these differences were related to the

type of software available in the lab, or to the task design, but they are

interesting in terms of attempts to explain the mechanisms that might influence

the quality of use.

In the UK, a number of aspects of OxIS data support some of the

contentions of DiMaggio and colleagues (2004) and Hargittai (2008). Firstly,

those who use multiple devices to access the Internet use it in qualitatively

different ways from others (Dutton and Blank, 2013). The OxIS identify such

people as ‘next generation users’ (NGUs), defined by their use of a mobile phone

plus two other devices to access the Internet (from a choice of tablets, readers or

three or more computers) (Dutton and Blank, 2013). They argued that this kind

of access makes the use of the Internet “more central to the life and work” of

such individuals (Dutton and Blank, 2013). They are of interest here both

because they use the Internet more for information seeking and for producing

content and because 90 per cent of next generation users earn more than

£40,000 per year, with the gap between users widening over time. So while ‘next

generation use’ is increasing dramatically (it moved from 47% in 2011 to 67% in

35

2013), so are the gaps between those who access the Internet in this way and

those who do so in a less fluid way. This suggests the potential for an online

inequality in terms of greater ‘everyday’ or ‘meshed’ use that can be traced back

to inequalities that are likely to relate to ability to afford to buy multiple devices.

Secondly, certain aspects of online skills and experience are related to

economic position and occupation. For instance, the length of time someone has

used the Internet and has had access at home is about three years higher among

those who earn £30,000 than among those who earn less than £12,500 per year.

Similarly there were strong relationships between use of the Internet at work,

and occupation (Dutton and Blank, 2013), meaning that for some occupations,

use of the Internet is something that can be developed as part of one’s job, while

for others, this can only happen in other spheres. The relationship between

occupation and Internet use was broadly related to occupation, with higher

ranked occupations, requiring more education and experience associated with

greater use of the Internet at work. However there was a slight anomaly among

health professionals and people working in culture, media and sports, who were

less likely to use the Internet at work than others closer to them on this scale.

Thirdly, self-rated ability to use the Internet is much lower among retired

people (49%) than among the general population as a whole (74%), perhaps

reflecting the later adoption of use of the Internet among this group (Dutton and

Blank, 2013).

Fourthly, the use of the kinds of mediums used in peer online support was

socially differentiated. Use of social networks, posting on a message board,

participating in chat rooms, and reading and writing blogs were all found to

increase with income and reduce with age (Dutton and Blank, 2013).

However, this perspective has not been without its critics. Halford and

Savage (2010) argued that Hargittai (2008) still positioned the Internet as a

‘neutral good’ and only explored how structure influenced its use in a

deterministic way. They argue for a more nuanced understanding of the links

between structural inequalities and Internet use. This is supported by Helsper's

(2008) findings, which established positive links between social disadvantage

(based on an index including health, employment, income and education) and

digital disadvantage (access, quality of access, attitudes towards the Internet and

36

activities undertaken online). However, there were exceptions to these findings,

meaning that some socially excluded groups could overcome digital exclusion.

Age and having children appeared to be a factor in engagement among these

groups, with some of those ‘unexpectedly engaged’ younger, with children at

home, and some of those ‘unexpectedly disengaged’ older and without children

at home. In fact, it could be argued that Dutton and Blank’s (2013) findings

support this idea, in that the structural differences described above do not

represent 100 per cent of users in each demographic category and they instead

presented a model of the ‘Cultures of the Internet’, which were derived from a

multivariate analysis of various attitudes to using the Internet (Dutton & Blank,

2013). This created four attitudinal continuums on which respondents varied:

seeing the Internet as an enjoyable escape, as creating efficiency and saving time,

as facilitating social contact, and as creating problems. These were used to create

five different styles of interacting, although there is overlap between them – from

those high on the first three aspects, who are generally positive about multiple

uses of the Internet (e-Mersives), through to Adigitals, who see the Internet as

mostly problematic. These styles of interacting tended to reflect “tendencies for

different cultures to be associated with particular social and demographic

characteristics, but they are far from deterministic” (Dutton and Blank, 2013, p.

7). Nonetheless, they do have some relationship with structural differences, most

notably age differences, where e-Mersives are mostly aged under 24 while

Adigitals tend to be over 45.

Helsper (2012, p. 415) recently argued that ‘there is almost no theoretical

work regarding the factors that make digital engagement successful in improving

people’s everyday lives’. Similarly, Halford and Savage (2010, p. 937) have

argued that attempts to analyse the connections between digital and social

inequalities are “limited, even restrictive”. However I believe that it is possible to

acknowledge both structural inequalities and also the ability to transcend these,

as suggested by the evidence in this section. As I will argue in Chapter 3, these

nuances can be accommodated by using Bourdieu’s concept of habitus

(Bourdieu, 1984). This is often misinterpreted as being overly deterministic, but

it allows for some social movement (within constraints) where power and

37

valuable convertible assets are determined by social context, or field, rather than

being set by education or income (Bourdieu, 1998).

The next section explores what is known about the social differentiation

of the use of online information and support in relation to health and caring

practices.

2.2.2 The social differentiation of online information and support seeking

in caring and health practices

There is still relatively little information available about the social differentiation

of the use of online support and information, and particularly the use of online

peer support, in wider health and caring practices. This section presents some of

the strongest evidence in these fields, but as will be seen, the research is limited

and differs across generic information and peer support sources.

Health and information seeking online: evidence of differentiated use and benefitsThe OxIS data provides some fairly compelling evidence of structural differences

in both health information seeking online and the ability to accrue benefits from

these activities, which are broadly supportive of the idea of the reproduction of

existing inequalities through digital inequality. Use of the Internet for health

information was relatively high – perhaps even a commonplace or ‘everyday’ use

for some people, with sixty-nine per cent of Internet users having ever searched

for health information online in 2013, down marginally from 71 per cent in 2011.

Nearly twice as many next generation users (NGUs) agreed the Internet was an

essential source of information (41%) when compared to first generation users

(24%) and non and ex-users (1%), although it is hard to establish whether this

belief drives use or vice versa. In terms of accruing unequal benefits online, 47

per cent of NGUs found information to improve their health, while only 30 per

cent of first generation users and 10 per cent of ex-users had. Similarly, those in

higher education were more able to realise benefits online such as saving money,

finding out about an event, finding information to improve health and finding a

job, which Dutton and Blank (2013) argued supported the concept of the

‘knowledge gap’ outlined above.

38

Social differentiation of use of the Internet for information among carersCurrently, little is known about the use of the Internet among carers, neither in

terms of access to the Internet nor use of the Internet for information or support

related to caring. The best study of Internet use among carers is now ten years

old (reported in Blackburn and Read, 2005; Blackburn et al., 2005; and Read and

Blackburn, 2005). This was based on a survey of 3014 carers who were recruited

from three county databases and a national charity database. It should be noted

that this survey had a low response rate (40%), with male carers and carers

younger than 30 years old likely to be underrepresented when data was

compared with national statistics on carers. However, given the difficulties of

identifying carers in the wider population, and the constraints on participation

among this group, this is a reasonable source of information, although it may not

be possible to generalise to all carers in the UK. Findings were that similar

demographic differences in overall Internet use were present in this sample as in

the rest of the population when compared with contemporary Office for National

Statistics data (ONS, 2003, cited by Blackburn et al., 2005). Fifty per cent of

respondents had ever used the Internet and there was lower use of the Internet

among carers aged over 55, women, people not in paid employment and carers,

people living in accommodation they did not own and – in a new finding –

parents providing care for more than 20 hours per week.

Among Internet users, Blackburn and Read (2005) reported that 72 per

cent of parents who had ever used the Internet in their sample had used it to get

‘direct information related to caring’. However, this contradicts findings

reported in Read and Blackburn (2005), which claimed that 52 per cent of carers

had used the Internet to gain this kind of information. Different base figures are

quoted, so it is difficult to assess which is the accurate figure and it was not

possible to establish how the 52 per cent figure was calculated. Barriers to using

the Internet included lack of time to go online to find information and to develop

digital skills, reflecting some of the inequalities outlined above. In the same

study, among carers given trial access to a PC with some training and support in

using it, some parents noted a preference for using the telephone, which was felt

to be less impersonal.

39

Porter and Edirippulige (2007) carried out a large online survey on

parents’ use of online information to support caring for children diagnosed with

hearing loss in Australia. Their focus, similar to mine here, was on social

patterning and how this related to usage. This survey suffered from serious

limitations in coverage of this sample group, again related to the lack of a central

sampling frame. Letters were sent to 229 gatekeeper organisations and service

providers who offer services to deaf children and their families and information

was posted on five websites. They sent reminder letters to only 47 organisations

and not to other organisations due to costs. 166 parents completed their survey.

They found that parents with a university level education more frequently used

the Internet when seeking information. Interestingly, increasing level of

education was found to be associated with increased numbers stating that online

information had ‘a major influence on their decision making’. They found that

there was little difference between use every day or use every few months, but

that 23 per cent of people with university degrees were more likely to use the

Internet several times a week or a month compared with other groups.

The remaining study that referred to potential social differentiation

among parent-carers has been qualitative, so it is not possible to generalise at all

from this data. Nevertheless, it provides evidence to support the above findings

and is indicative of a potential digital inequality. In Skinner and Schaffer's (2006)

qualitative study of parents of children with suspected genetic disorders, 83 of

the hundred families had used the Internet in relation to their child’s diagnosis,

with fewer from lower income and lower education families having done so.

These findings, though limited, appear to reflect similar social

differentiation of use of both the Internet and of the Internet for caring (or

health) purposes, as found in the general population.

Social differentiation of online peer support sites and groupsIn a recent scoping review, Paterson and colleagues (2013) were unable to locate

information about the social differentiation of the use of online social support

among parents of children with chronic illnesses and disabilities. This

information is certainly scarce and the remaining studies described in this

40

section are methodologically limited, so cannot be generalised to a wider

(admittedly hidden) population and are somewhat contradictory.

Blackburn and Read (2005, p.510) found that among carers who used the

Internet, 36 per cent used it for ‘making direct contact with relevant

organisations or individuals in similar circumstances.’ However, this conflates

contact with carers by email with the use of online groups. It does not give any

idea of how many carers read messages posted by other carers without making

direct contact, or even of how many parents are contacting carers rather than

organisations. No information was given about the social differentiation of these

parents.

Porter and Edirippulige (2007) found that parents with a university

education were significantly more likely to participate in online support groups,

but information about the perceived utility of these groups was not given.

Leonard and colleagues (2004) surveyed users of RettNet, an email

listserv for parents of people with Rett syndrome and others with an interest in

the syndrome. This research explored use by parents only. It was limited in that

it focused only on current users of this listserv, who may have differed from ex-

users and parents who used other forms of information and support.

Nonetheless, it provided a picture, though now dated, of current and probably

regular users of this source. RettNet is run by the IRSF, a US organisation, so the

majority of the 119 respondents were US-born, with only two respondents born

in the UK. Although respondents had varying levels of education, over half held a

degree and among those working, the majority were professionals. This suggests

that, as in Porter and Edirippulige's (2007) findings, use was relatively high

among professional groups and those with higher education qualifications.

However, Leonard and colleagues (2004) found hours spent on RettNet

were not related to the age of respondent or family member with Rett syndrome,

education, work status, availability of assistance, adequacy of existing emotional

support or child’s functioning level. Respondents who were not in employment,

living in rural areas, who joined for emotional support or friendship or to share

feelings were significantly more likely to spend longer on RettNet. Part-time

workers, salespeople, paraprofessionals and those not employed rated its value

significantly higher than professionals, managers and clerical workers,

41

suggesting a (slightly unclear, but present) relationship between social status

and perceived value – suggesting that this source was valued less by

professionals than by other groups. The rated utility of information on the group

was also high among younger parents (this approached significance), while those

who had joined to befriend other relatives or for emotional support were

significantly more likely (p< .05) to find it helpful. This suggests a greater

relevance for parents who may lack alternative sources of peer support.

These findings, though limited, presented an interesting picture. On the

one hand they suggested that more educated parents and professionals used

online peer support than other groups (as they do with more generic

information online and the Internet). However, on the other hand they suggested

that older parents in professional, clerical or management roles valued the group

less than other parents. It not possible to establish from this data whether this

relates to the quality of information on this particular email list or to sources of

online peer support overall, a distinction that is discussed in greater detail in the

following section, which attempts to piece together what is known about online

information and support seeking in everyday health and caring practices.

2.3 The role of online peer support and information in modern caring

practices: the current state of the research

At the beginning of the chapter I outlined some of the possible benefits of the use

of online support and information for parents of people with rare syndromes. Yet

it is argued in this section that our understanding of the role of online support

and information in the lives of this group remains fragmented, both

methodologically and theoretically. Research is summarised in terms of key

themes in the literature that have the potential to shed light on the role of online

support and information in everyday caring and health practices and how these

might be socially differentiated. This section concludes with a summary of the

limitations of this body of research and the final section of this chapter outlines

how this thesis aims to provide a more coherent and less fragmented picture.

42

2.3.1 The role of online lay information in everyday caring practices

A number of studies have summarised the kinds of lay health information

exchanged in online peer support forums for parents of people with rare

syndromes and disabilities, but these have often been methodologically limited.

Studies of posts on online peer support forums have shown that a range

of topics are discussed on such forums, including making sense of diagnosis and

what it means for prognosis, medical issues, child development, treatment,

specialist equipment, services, policies, professionals, discrimination, stress,

upcoming events, useful resources, and personal stories about experiences

(Huws et al., 2001; Jones and Lewis, 2001). Posters also appear to collaborate to

solve problems relating to everyday support and report a reduced sense of

isolation (Huws et al., 2001). However, assuming these benefit all parents – or

even all parents who use the Internet - is a form of technological determinism

(after Henwood et al., 2003). Such observations cannot tell us whether such

benefits are socially differentiated, experienced in the same way by parents who

read but do not post or whether they have any impact on wider caring practices.

Research that explores the use of particular boards or groups (through

surveys or qualitative interviews) are similarly limited in terms of understanding

the role of online peer support among all potential beneficiaries. Where these

have been carried out they have – unsurprisingly - tended to find high levels of

satisfaction with online support (Baum, 2004). Benefits include problem-focused

support, emotional support, practical ideas (Baum, 2004), getting information,

sharing experiences, venting emotions (Han and Belcher, 2001) a sense of being

understood, feeling less isolated, being reassured that one’s feelings are normal,

and support in making decisions (Baum, 2004; Han and Belcher, 2001).

However, this kind of research has also highlighted the importance of particular

kinds of information traded in such groups. For example, in their study of the

RettNet email listserv group, Leonard and colleagues' (2004) respondents

highlighted the particular importance of information about medication (84%),

Rett syndrome research (79%), equipment (72.3%), symptoms of Rett syndrome

(71.4%), physiotherapy, occupational therapy and speech therapy (68.9%),

feeding and nutrition (66.4%), genetic issues (64.7%), school (62.2%) and

emotional support (62.2%). Sixty-nine per cent of respondents with children of

43

school age indicated that RettNet helped them deal better with their child’s

educational needs (particularly regarding relevant legislation). Eighty-three per

cent reported that they felt the information was accurate. Seventy-one per cent

noted that medical and practical information gleaned was of equal value.

Disadvantages included the time involved (58%), repetition of topics (30.3%),

misinformation (27.7%) and being offended (17.7%). Those who rated RettNet

less favourably noted that it lacked relevance to people outside the US, the

number of emails was excessive and subjects discussed were limited. As

highlighted above, this particular source was read by more educated parents and

those in professional occupations (at least among survey respondents), but was

rated as most useful by non-professionals, younger parents and those who joined

to befriend other parents. This may indicate that parents with access to

alternative sources of information or support found this particular board less

useful. However, this cannot be confirmed without more in-depth information

about these factors.

Overall, studies that have focused on the views of current users of

particular forums (either by observing posts or surveying or interviewing users)

reflect the views of the ‘converted’, rather than the wider views and practices of

carers who have stopped using such sites or are unable or choose not to use

them. They also cannot tell us how the use of such sources meshes with other

sources of support and information.

A handful of studies have explored the benefits of online information and

support among wider caring populations. These have used qualitative research

methods, mainly focusing on interviews and are summarised below. These are

among the most valuable sources of information about the use of online peer

support among parents of people with rare syndromes, but, as will be argued

below, this body of research still has limitations.

Lowe and colleagues (2009) analysed secondary accounts of interviews

about pregnancy and antenatal screening. However as the interview did not

specifically enquire about Internet use, this may not have captured the full range

of women’s online experiences. Their findings supported many of the suspected

potential benefits of the Internet for parents of children with rare syndromes

described above, particularly that the Internet provided access to additional

44

information that went beyond what was offered by health professionals and in

traditional sources of information, such as pregnancy books and resources.

Similarly, Lowe and colleagues’ (2009) interviewees reported that reading about

other parents’ experiences helped them feel less alone and helped them to judge

their own emotional reactions, although this could have a positive or negative

impact.

Skinner and Schaffer’s (2006) and Schaffer and colleagues' (2007) papers

were based on a wider ethnographic study of how parents of children suspected

of having a genetic syndrome used, sought and interpreted information in their

wider caring practices. Their data was based on the experiences of 100 of the

106 families they had recruited, who had used the Internet either directly or by

proxy. Parents combined use of both scientific information and lay health

information, with lay health information conceptualised by Schaffer and

colleagues (2007) as a form of ‘case history’, to make sense of the meaning of the

diagnosis in their child’s own life. In echoes of the findings related to

understanding prognosis in online observation studies (Huws et al., 2001; Jones

and Lewis, 2001) this involved trying to establish whether one’s child was likely

to be a typical or milder case and to learn everyday strategies for managing their

child’s development and health and overcoming challenges, for instance in

behaviour management. Parents of children with rare syndromes, who reported

that prognosis information from health professionals was inadequate, were

particularly likely to seek this information (Skinner and Schaffer, 2006). These

‘online case histories’ were also used as ways of assessing the likely benefits of

new and experimental treatments and to decide when to fight for a particular

treatment that had been denied. Lowe and colleagues (2009) reported similar

findings, with the Internet used to explore the meaning of diagnosis in relation to

potential treatments and medical decisions. This use of online lay experience is

redolent of a form of ‘apomediation’ described by Eysenbach (2008), where

parents’ views are perceived as forms of review, much like consumer ratings,

and as independent of vested interests. This searching out of treatments and

information seen as affecting their child’s prognosis appeared to be very strongly

felt as an obligation, reflecting earlier ideas about the ‘felt obligation’ of

becoming an expert or informed patient (Rose, 2001, cited by Schaffer et al.,

45

2007; Ziebland, 2004). Most recently, Gundersen (2011) presented interview

data about the role of the Internet in adjusting to diagnosis among parents of

people with a rare syndrome. As in other research presented above, parents

initially used the Internet to try to understand the prognosis of the syndrome for

their child, as diagnostic information was limited and rather broad in its scope.

However, Gundersen (2011) also found evidence of some parents actively

seeking information about possible diagnoses with one parent who secured a

particular diagnosis as a result of carrying out her own research.

In Skinner and Schaffer’s research (2006, p. 20), parents reported that

when they were able to “demonstrate scientific literacy at the beginning of a

clinic visit”, following research online, professionals provided more detailed

accounts about conditions and their impact. This recalls Nettleton and

colleagues’ (2004) finding that a shared lexicon improves lay-professional

relationships. Similarly, in Gundersen’s (2011) research, parents’ realisation that

their local health professionals knew little about their child’s syndrome led to

them preparing research ahead of consultations to counterbalance an initial

sense of a lack of power.

Online support was used to explore alternatives to suggested treatment,

with views sought from researchers, other clinicians and peers. This information

was then used to support discussions with clinicians. For example, some parents

reported that they had gained experimental treatment due to research presented

by other parents as part of online advocacy networks (Skinner and Schaffer,

2006).

There were hints of differentiation in how parents used the Internet in

both studies, but these were not explicitly examined in relation to social

differences or mechanisms. Skinner and Schaffer (2006) noted that most parents

used the Internet as a supplementary source of information alongside support

from health professionals, but that the Internet became a primary resource for

parents who reported having inadequate information, having not had their

concerns taken seriously. These included how parents used online information

to gain power in medical negotiations and to assess the credibility of online

resources. There were differences in what the Internet offered different parents,

from it being an additional resource to it being used to campaign for further

46

research and raise awareness. However, this was only discussed in relation to

the first digital divide, not in differences in how parents used the Internet as

outlined above. Further limitations to this work are: that it was carried out in the

US, where the care and health systems operate in a very different way; that all

parents had children aged under 18, so were likely to be more engaged in using

the Internet; and that online support and information was treated as a single

entity, without exploration of how it might be used differentially across different

sites by different parents.

2.3.2 Relationship of information and support seeking to current need

Schaffer and colleagues (2007) described how parents’ use of the Internet was

led by need, with some parents seeking diagnoses or challenging diagnoses with

their own online research, using it for an intensive period following diagnosis to

understand prognosis, or using it for making decisions about treatment options.

Use appeared to reduce once they felt they had gained sufficient knowledge.

However, about one in ten of the parents continued to stay online to keep

abreast of research and become actively involved in online peer support and

advocacy groups, posting advice and information. These parents, significantly for

this study, tended to be parents of children with the most rare conditions, or

those who searched for alternatives to suggested treatment plans (Skinner and

Schaffer, 2006). This suggests that although there may have been a felt obligation

to be an expert carer, this diminished over time for parents of children with less

rare conditions or who may have had greater trust in their local health

professionals.

2.3.3 Relationship to other sources of information and support

Lowe and colleagues’ (2009) interviewees used a wide range of materials,

including offline resources (such as support from charities, some of which were

discovered online). This suggests the meshing of online and offline sources of

support even in this situation, and the complementarity of online information.

Similarly, Leonard and colleagues (2004) found that users of RettNet had mostly

gained information from the organisation that hosted this email listserv, the IRSA

47

(92%). Seventy-eight per cent used the Internet for support and 68 per cent used

offline forms of information (books, videos and leaflets).

Gundersen’s (2011) interviewees included people who had sought similar

information offline before they had Internet access. The kind of information

sought over time mirrored that sought online in that it changed from being an

intensive search for information about diagnosis and prognosis to being about

treatment and support. Parents actively avoided contact with families with the

same syndrome initially, as this was felt to be too difficult to face soon after the

diagnosis. Gundersen (2011) also found suggestions in the data that the

availability of offline support, through connections with specialist clinics, made

online support contact unnecessary for some parents. In her study, the parents

who made use of online support were the only two parents who had been denied

access to such clinics. However, this research describes the experiences of

parents within the Norwegian setting, where parents of children with rare

syndromes are offered the opportunity through their health centre to use the

services of medical centres specialising in specific rare syndromes. Although a

specific clinic for Rett syndrome exists in the UK, access is not routinely offered

through the NHS.

2.3.4 The reproduction of biomedical narratives and flight from online

peer support sources

Lowe and colleagues (2009) found that parents using the Internet for support

after receiving a genetic diagnosis following antenatal screening did not

challenge biomedical models, but used information from other parents to

support them to understand the diagnosis, feel less isolated and make medical

decisions.

Jones and Lewis (2001) reported that the posts on a support group for

parents of people with Down’s syndrome focused on a number of themes,

including celebration for small achievements and seeing the child before the

disability, which was seen as a counter-narrative to the pathological biomedical

model, although present in offline interactions (e.g. Cunningham, 1996).

Huws and colleagues (2001) noted that some discussions on an

international discussion group about autism included searches for causes of

48

autism and discussions of unconventional cures, although some parents were

sceptical of such claims.

The two papers based on online observation reported the occurrence of

conflicts online between posters, which had precipitated people leaving an

online group (Han and Belcher, 2001; Jones and Lewis, 2001). This is another

aspect of the use of online peer support that could be better understood through

an exploration of how online and offline support interact and an examination of

the interface between individual’s views and the views shared online at a micro

level. This could be particularly important in terms of understanding the

potential of online support groups and forums as places where more subversive

ideas can – or cannot – be exchanged.

2.3.5 Limitations of findings

Most of these studies did not explore the social differentiation of use (Lowe et al.,

2009; Schaffer et al., 2007). Gundersen’s (2011) study was limited in its coverage

of the social differentiation of Internet use among interviewees. She uncritically

presented Hardey’s (1999) assertion, critiqued in the following section, that

access to the Internet “democratises access to health and diagnostic information”

(Gundersen, 2011, p.81). Although there was acknowledgment of differentiation

by education level in preferences for sources of information and suggestions of

variation in information-searching skills (unexplored) this was not examined in

detail, due to the nature of the data gathered (qualitative, with a small sample of

10 parents).

Explorations of the uses of online peer support sites either took a micro

approach, exploring use of one particular site, or treated all online peer support

sites as a single entity. This masks how use of these sites might change over time

and either substitutes one site to stand for all sites or ignores subtle differences

between different sites that might affect use, such as who uses them, the kinds of

narratives they present and the type of information available. Each of these

approaches presents only a partial view of the full role of online support and

information and how it relates to existing sources of support, social

differentiation and the existing expertise of parents.

49

A key issue with these studies is that they explored the use of online

support and information only among parents of children with rare syndromes

and disabilities. As outlined above, use of the Internet and digital skills reduce

with age. Age may also be related to a greater possession of existing expertise

and support. A differential use of online support in wider health practices by

older people is suggested in other sociological health studies, where use was

limited among patients with an average age of 55 (Wyatt et al., 2010), who

preferred to use other sources of support. These differences may be particularly

important in the use of online peer support sites, given the higher use of social

networks overall by younger people (Dutton and Blank, 2013).

Before concluding this section of the chapter, it is important to

acknowledge that there is a large parallel debate about the nature and existence

of ‘virtual communities’ (e.g. Nieckarz, 2005) that is not covered here due to

space constraints. The important distinction to be made is that the approach

taken here is analogous to conceptualisations of sites as potential forms of

‘community support’ that can only become communities if there is regular

interaction, as outlined by Zhao and Elesh (2007). This is a helpful distinction as

it allows differentiation between the kinds of support available to those who

contribute actively to online support spaces and the kinds of support available to

those who read without contributing, which, it is argued here, has been under-

researched. In addition, as outlined above, my aim is to explore the place of

online support and information as part of wider caring practices rather than

focusing on the active, regular use of a single site or group.

50

2.4 Putting it all together: towards a coherent understanding of the

role of online support and information in the caring practices of

parents of people with a rare syndrome

Online support and information has been described as being particularly useful

for parents of people with rare syndromes, whose local health professionals may

lack the specialist information they require. Due to the rareness of the syndrome,

such parents are unlikely to have peers living close to them with whom they can

consult. Some rare syndromes, like Rett syndrome, are associated with high

caring needs resulting from the serious health problems that people with this

diagnosis experience and having a profound disability that severely affects

communication. Such factors are likely to increase the possible isolation of

parents of people with Rett syndrome.

However, as argued in Section 2.1, health and sociological research has

reflected wider, early research into the Internet by tending to present the use of

online information and support as either dangerous - spreading misinformation

and threatening the positions and authority of health professionals - or as

inherently transformative, bringing democracy and resistance to prevailing

power bases and biomedical explanations of illness. It has also been argued that

part of this wider accessibility to information has transformed people into expert

or informed patients, whose new-found expertise will create a more

collaborative method of working while exacting a toll of greater responsibility on

individuals for their own health and the health of their children. However, these

stances have been critiqued as being too technologically deterministic and for

uncritically assuming that all people are willing and able to take up the mantle of

the expert patient. More recently there have been arguments to reconcile these

extreme positions, where patients have been acknowledged to be variable in the

degree to which they embrace empowerment and to use multiple forms of

information and support. However, the initial binary positions are still presented

in much health and some sociological research. Some papers still uncritically

present lists of benefits available online without considering varying levels of

engagement and uptake. Two criticisms of the current theoretical positions

51

remain: firstly the lack of engagement with the everyday aspects of technology;

and secondly the continuing social differentiation of access to and use of the

Internet.

Section 2.2 presented recent findings on this continuing social

differentiation. It outlined theories and factors related to the digital reproduction

of social inequalities, such as experience, skills and use of mobile technologies. It

was argued that structural inequalities should be assessed alongside differences

in use at the micro level. The limited evidence available on the social

differentiation of the use of health and caring information and support online

suggests the existence of corresponding social differentiation in the use of the

Internet, including among carers. However, the relationship between the use of

online peer support and structural inequality is more complex, with greater use

among professionals and more educated groups, but lower benefits experienced

by such groups, although this is based on very limited evidence.

Section 2.3 presented evidence relating to the use of online support and

information in everyday caring practices. These suggested a range of potential

benefits of lay health information in online peer support sites, although most of

this research does not explore the social differentiation of the use of and benefits

experienced by different social groups. Research using current users of specific

online support groups was critiqued for presenting the views of the ‘converted’,

while other research that treated all peer online support sites as essentially the

same was criticised for not taking into account differences between sites, which

may cater to different audiences or offer different kinds of information or

support. While some parents appeared to use information online to challenge

local health decisions, not all did and there were few clues as to the differences

between these parents. Research has suggested that parents’ level of current

need is related to the use of online support. However, while some parents

appeared to feel the need to be expert carers, others did not. Again this was not

explored in terms of social differentiation because the research was qualitative.

There was also evidence of the use of multiple sources of support and

information among some parents, including similar information seeking offline

for parents who had not had online access at the time of their child’s diagnosis.

There was also some suggestion that parents with offline specialist peer support

52

were less likely to engage with online peer support, but this again was anecdotal

as it was observed in a qualitative sample. Finally, the evidence suggests that

biomedical narratives are not challenged in online peer support sites, although

children’s achievements were explored and there were conflicts between

parents that led to some parents claiming to leave the site (in posts), although

the nature of these conflicts were not explored.

Three critical issues were identified with this literature. Firstly, almost all

studies failed to explore how the use of online support and information might be

socially differentiated. Secondly, a micro focus on individual groups or a blurring

of multiple sites presents only a partial view of use and how this interacts with

available sources of information. Finally a focus on parents of children with rare

syndromes is misleading as parents of adults are likely to have differing levels of

expertise, to use the Internet differently and to have access to a range of existing

sources of support and information. The age factor was highlighted as being

particularly important when exploring the benefits of online peer support, as

these mediums tend to be used more by younger people, at least in the general

population.

These issues come from two sources, identified within the discussions

above. Firstly, these studies tend to be methodologically fragmented, either only

exploring posts online, exploring overall trends with little exploration of how

these fit into everyday practices or focusing on everyday use with qualitative

research that cannot explore the relationship with larger structural

differentiation. Secondly, the research is theoretically eclectic and fails to explore

how structural differences may influence and impact upon micro everyday

practices.

In this thesis I attempt to overcome this methodological and theoretical

fragmentation in the following ways. Firstly, methodologically, by exploring the

role of online support and information in a single case study group of parents of

people with a rare syndrome, using a mixed methods approach that considers

both structural differences and micro everyday use of multiple online sites and

groups. Secondly, by using Bourdieu’s concepts of fields, habitus and capitals, I

bring together structural and micro aspects of the use of online support and

information in everyday caring practices, exploring how they interrelate.

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The next chapter describes these concepts, outlines and critiques how

they have been used in existing Internet research and presents the framework

used to explore data in this thesis.

54

Chapter 3. Bourdieu and the use of online support and

information in everyday caring practices

In Chapter 2 I argued that the Internet has become embedded in wider social

practices, including health and caring practices. I proposed that research into the

use of online support and information among parents of people with rare

syndromes – particularly the use of online peer support – is still

methodologically and theoretically fragmented. Although some studies explore

the embeddedness of online support and information sources in everyday caring

practices, the social differentiation of the use of the Internet in caring practices

has been insufficiently explored from a sociological perspective. As I suggested in

the previous chapter, research in this field lacks coherence in exploring how

structural differences in the use of the Internet interrelate with the use of online

caring information and support, particularly online peer support. In this chapter

I outline how I will use Bourdieu’s concepts of capitals, fields and habitus to

explore the use of online support and information among carers of people with a

rare syndrome, Rett syndrome. In section 3.1 I outline how the concept of social

capital has been used to explore the role of online and offline social networks,

highlighting the relative neglect of Bourdieu’s conceptualisation. In section 3.2 I

describe key relevant aspects of Bourdieu’s wider theory that are particularly

pertinent for exploring the links between the social differentiation of Internet

use and its use in everyday caring practices. In section 3.3 I summarise and

critique how Bourdieu’s concepts are beginning to be applied to examinations of

the use of online support and information and provide an argument for how they

will be operationalised in this thesis. Finally, in section 3.4 I describe the

limitations of research into this field to date and present my research questions,

which aim to address these gaps.

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3.1 Social capital online and offline and the neglect of Bourdieu’s

conceptualisation

Field (2008) has argued convincingly that the current significance and

understanding of social capital is based on work undertaken by Bourdieu (1986),

Coleman (1988, 1994) and Putnam (2000, 2002). Although all three authors

concur on the centrality of social ties, they take very different theoretical stances.

Broadly speaking (because a full outline is beyond the scope of this chapter) the

different depictions of social capital can be conceptualised in the following ways.

Coleman (1988, 1994) argued that social capital lies within ties between people

and is a resource that can be drawn upon within a closed community. This

community will be embedded in wider social networks with a high level of trust

and outstanding mutual obligations. Putnam's (1993, 2000, 2002)

conceptualisation of social capital exists at a macro level and is measured

through civic engagement. He argued that social capital develops from horizontal

networks that lead to civic engagement and that it provides ‘public goods’

(benefits), accessible beyond the immediate network. In stark contrast to both,

Bourdieu (1986) argued that social capital disproportionately benefits members

of elite groups, leading to the reproduction of inequalities in society. Perhaps as a

result of these diverse conceptualisations, social capital has become a rather

muddy concept (Ferlander, 2007; Hawe and Shiell, 2000; Woolcock, 2001).

Further research has built upon how social capital connections function

and what they can offer people who are members of social capital networks.

These are outlined here briefly as they are a useful way of exploring the benefits

(or ‘goods’) accessible via social capital networks. Ferlander (2007) has provided

a useful summary of these terms, which are reproduced from her original tables

in Tables 3.1 and 3.2, below.

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Table 3.1 Ties by formality and direction (Ferlander, 2007)

Level of formality and direction

of ties Formal ties Informal ties

Horizontal ties Voluntary associations Family, relatives, friends,

neighbours and colleagues

Vertical ties The church, work hierarchies

and network ties between

citizens and civil servants

Criminal networks, clan

relations and street gangs

Reproduced from Ferlander (2007, Table 1, p.117)

Table 3.2 Ties by strength and diversity (Ferlander, 2007)

Level of strength and diversity Strong ties Weak ties

Bonding (horizontal) ties Close friends or

immediate family with

similar social

characteristics, e.g. social

class or religion

Members with similar

interests or social

characteristics within

voluntary associations

Bridging (horizontal) ties Close friends or

immediate family with

different social

characteristics, e.g. age,

gender or ethnicity

Acquaintances and members

with different social

characteristics within

voluntary associations

Linking (vertical) ties Close work colleagues

with different hierarchical

positions

Distant colleagues with

different hierarchical

positions and ties between

citizens and civil servants.

Reproduced from Ferlander (2007, Table 2, p.118).

57

In Table 3.1, formal ties exist within settings such as voluntary associations.

Informal ties are interactions that happen outside formal settings, although this,

rather puzzlingly, includes colleagues. Horizontal ties are with peers while

vertical ties exist between the levels of a hierarchy (Coleman, 1990 and Putnam,

1993, cited by Ferlander, 2007). In Table 3.2, strong ties are “intimate… with

immediate family and close friends… tend to be multi-stranded and regularly

maintained”. Weak ties are “non-intimate… with acquaintances… tend to be

single-stranded and maintained infrequently” (Ferlander, 2007, p.118).

Bonding and bridging ties are ‘horizontal’. Bridging ties link those with

different characteristics, working as a “sociological WD-40” according to Putnam

(2000, p.23). This can “generate broader identities and reciprocity” (Putnam,

2000, p.23). Granovetter (1973) argued that bridging ties allow social mobility

and increase social cohesion. One of Putnam’s (2000) main concerns is the

supposed decline of bridging capital. By contrast, bonding social capital occurs

within homogenous groups, cementing differences and creating out-groups

(Putnam, 2000). Both bonding and bridging capital can occur within the same

group (Putnam, 2000).

Bourdieu’s (1986) conceptualisation of social capital appears to reflect

bonding ties, between like people that tend to exclude others. Thus in online

forums we might expect to see the clustering together of like individuals to the

mutual benefit of members and exclusion of outsiders. The strength of ties is not

made clear, but it is possible that a range of strong and weak ties could co-occur

within an elite social setting, depending on the level of maintenance of each

connection.

Ferlander (2007, p.116) further suggested that social support is a key

benefit of social capital and outlines four different forms this might take (after

Cohen & Wills, 1985), which are used in this thesis as a way of exploring the

‘goods’ available through online peer support sites. These are: ‘informational

support’ (problem-solving advice and information), ‘instrumental support’

(practical, such as chores or financial aid), ‘emotional support’ (providing

empathy), and ‘companionship’ (spending time with someone). ‘Instrumental

support’ could be seen as partly reflected within the concept of economic capital

and will be conceptualised as such within this thesis. Bourdieu’s (1986)

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description of the benefits of social capital does not give precedence to

‘emotional support’ or to ‘companionship’, although these could be argued to be

part of the work undertaken to maintain and build bonds. The concept of

‘emotional support’ is included here as it is one of the key benefits of online peer

support that was cited in research summarised in the previous chapter, while

companionship will be explored within interview accounts.

Bourdieu’s theory has historically been relatively neglected in terms of

research into offline (Field, 2008) and online activities (Zhao and Elesh, 2007),

despite the evidence of continuing social differentiation of Internet use. This is a

situation that persists today, while Putnam's (1993, 2000, 2002)

conceptualisation has dominated theoretical discussions of the use of both online

and offline networks. The particular appeal of Putnam’s (2000) theory online, as

well as reflecting its wider dominance offline (particularly in the American

literature), may be because Putnam (2000) discussed the potential of the

Internet for providing ‘virtual social capital’ (Putnam, 2000, pp.169-180). He

noted that it was still too early to make definitive predictions about how online

social capital might operate. However, he supported the view, prevalent at the

time, that since online communication (then) lacked visual cues and sometimes

allowed anonymity, that this was “in many respects an egalitarian” platform for

communication that might lead to the flattening of offline hierarchies (Putnam,

2000, p.174). This was similar to the utopian perspective outlined in Chapter 2,

which emphasised democratisation of knowledge. He also noted that the

asynchronous nature of the Internet and this ability to “[liberate] our social ties

from the constraints of time” might become one of its most significant impacts,

while noting the barrier of socially differentiated access (Putnam, 2000, p.174).

However, following research contemporary to his account, he also suggested that

people may become more aggressive online and that this may lead to difficulties

building trust. Citing Galston (1999), Putnam further argued that the

combination of anonymity and fluidity in online interactions might breed ‘drive-

by’ relationships and that “[i]f entry and exit are too easy, commitment,

trustworthiness, and reciprocity will not develop.” (Putnam, 2000, p.177).

Putnam (2000, p.178) also highlighted a working paper by van Alstyne and

Brynjolfsson (1996) that suggested that the Internet fosters the development of

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membership of single-interest groups that are “homogenous, not in demographic

terms, but in terms of interest and outlook” (Putnam, 2000, p.178). Therefore he

also provided some support to the dystopian view that it would damage the

quality of relationships.

Reflecting the muddiness of the use of social capital as a concept in the

wider literature (Field, 2008), there is a body of research purporting to reflect

Putnam’s (2000) views, which lacks this level of nuance. Instead it tends to

position online social capital as an implied or stated threat to offline social

capital, which is given a privileged position, perhaps reflecting wider social

anxieties about technological changes in communication described by Baym

(2009) in Chapter 2. In effect, such research positions these two mediums of

access to social capital as distinct and antagonistic, rather than meshed and

potentially complementary and crosscutting as argued in Chapter 2.

Bourdieu did not describe how social capital (or any aspect of his wider

theory) related to the use of the Internet, but I argue in the following two

sections that his conceptualisation of social capital has great potential for

examining the links between social differentiation of Internet use and the

everyday use of the Internet in wider caring practices.

3.2 Bourdieu’s concepts of capitals, fields and habitus

Bourdieu’s concept of social capital is an integral part of his wider theory of how

different forms of capital combine to enable elite groups to maintain their

supremacy (Bourdieu, 1986). Given the focus here on the embedded nature of

social practices, it seems fitting to describe social capital within the wider

context of Bourdieu’s writing rather than artificially separating it from his wider

work.

The concept of habitus is central to Bourdieu’s work both in terms of how

inequality tends to be perpetuated in the face of social changes like the widening

of educational opportunities. It is particularly useful here as a way of connecting

and exploring how structural differences in the use of the Internet may influence

the everyday use of the Internet in the wider caring practices of parents of

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people with Rett syndrome. Habitus is a ‘disposition’ towards the world that is

influenced by socialisation (Bourdieu, 1998, p.8). Habitus allows an interface

between an individual’s history (personal and collective) and their actions,

which, it is argued, “tend to reproduce” existing social structures (Bourdieu and

Wacquant, 1992, p.123). It is an important theoretical concept because it breaks

down the classical subjective and objective, or micro and macro dichotomies to

explain how social structures such as class derive from existing inequalities and

tend to be perpetuated by processes of both socialisation and wider social

interactions.

This system of dispositions – a present past that tends to perpetuate itself into

the future by reactivation in similarly structured practices, an internal law

through which the law of external necessities, irreducible to immediate

constraints, is constantly exerted – is the principle of the continuity and

regularity which objectivism sees in social practices without being able to

account for it; and also of the regulated transformations that cannot be

explained by the extrinsic, instantaneous determinisms of mechanistic

sociologism or by the purely internal but equally instantaneous determination

of spontaneist subjectivism.

(Bourdieu, 1990, p. 54)

Habitus is not used by actors in a conscious sense, but sets a context within

which certain ways of acting seem natural to the actor (Bourdieu, 1990). A

common criticism that has been used to reject Bourdieu’s approach is the claim

that he does not allow for the agency of social actors (e.g. Halford and Savage,

2010). Yet Bourdieu (1998, p. viii) has argued that agents are “eminently active

and acting”, but act within constraints of which they may not be aware, instead

perceiving ‘illusory freedom’. Additionally, as will be described below, fields,

where struggles to gain symbolic capital (a kind of power) take place, allow for

the challenging of power and the changing of power structures over time.

Bourdieu argued that cultural and social capital are disguised forms of

economic capital. (Bourdieu, 1986). Economic capital is anything that is

“immediately and directly convertible into money and may be institutionalised in

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the form of property rights” (Bourdieu, 1986, p. 16). The concept of cultural

capital was created as a way to explain the unequal educational achievement of

children from different social classes (Bourdieu, 1986). Cultural capital can be

‘embodied’, representing knowledge and dispositions gained primarily through

socialisation, can include objects, including machines, or can be institutionalised,

such as through educational qualifications, which privilege some forms of

learning over others. It is acquired, often unconsciously, through the family and

as it is disguised is often perceived by others as competence and is converted

into symbolic capital as a form of authority (Bourdieu, 1986). Higher economic

capital can be converted into greater cultural capital through a number of means,

not only through paying for education and equipment, but also the availability of

greater free time to acquire additional cultural capital due to an elongated period

before offspring need to be financially independent. Linguistic capital is a type of

cultural capital that relates to the competency of language use by an individual,

gained through education or upbringing (Bourdieu and Wacquant, 1992). Some

social spaces require a high level of linguistic capital that effectively excludes

those who do not possess commensurate competence (Bourdieu and Wacquant,

1992). Support forums relating to rare syndromes and disabilities, which can

share complex medical and genetic information, might therefore exclude parents

without the requisite level of linguistic – or indeed cultural capital acquired

through education. For instance, parents who hold qualifications involving some

level of research expertise will possess a type of cultural capital that allows them

to make sense of primary resources, such as some research papers.

Social capital is “the aggregate of the actual or potential resources which

are linked to possession of a durable network of more or less institutionalized

relationships of mutual acquaintance and recognition – or in other words, to

membership in a group” (Bourdieu, 1986, p.21). These function as connections

that allow people to “obtain very unequal profits from virtually equivalent

(economic or cultural) capital, depending on… [how much] they can mobilize by

proxy the capital of a group” (Bourdieu, 1986, p.256). Therefore those with the

most connections to people with the highest stocks of desired economic, cultural

or symbolic power benefit the most. It is therefore in the interests of those who

have high stocks of social or other capital to limit their association with others

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who do not possess commensurate volumes of relevant capital(s) or who do not

have links to others who possess them (Bourdieu, 1986). Access to useful social

capital is therefore limited to other members of a wider elite group who are

connected through “mutual acquaintance and recognition” (Bourdieu and

Wacquant, 1992, p.119). Such groups can “[bring] together, in a seemingly

fortuitous way, individuals as homogenous as possible” (Bourdieu, 1986, p.250),

for instance in certain social settings.

Access to groups and to their social capital is managed in a number of

ways that are not deliberately employed but reflect the preferred social

behaviours of that group. Manners, which include ‘bearing and pronunciation’,

can indicate that one belongs to a group (Bourdieu and Wacquant, 1992).

Reciprocity is important for building and maintaining social capital, with

continual exchanges demonstrating that one fits into the group. These exchanges

also have the effect of reproducing the group. There is a pressure to reciprocate,

with “durable obligations subjectively felt” (Bourdieu, 1986, p. 52). A

plenipotentiary who has the mandate to speak for all members, can expel

members who are seen to discredit the group (Bourdieu, 1986). This concept

presents a number of interesting possibilities for exploring the use of online peer

support forums. As discussed in the previous chapter, there is evidence that

social networking sites and other mediums used to gain peer support (discussion

boards, chat rooms, Facebook) are socially differentiated, with greater use by

younger and wealthier individuals (Dutton and Blank, 2013). This may both

influence who is welcomed and supported within such groups (or expelled by

the plenipotentiary, a role that could be played by a group administrator) and

who does and does not benefit from membership of such groups. It will be

remembered from Chapter 2 that there was some limited evidence that an online

support group was considered as less useful among professional and older

parents (Leonard et al., 2004), and that about two thirds of retired ex-users of

the Internet argued that it was ‘not for people of my age.’ Using Bourdieu’s

(1986) conceptualisation of social capital, these findings could be seen as

examples of how certain online spaces may offer limited ‘goods’ to older parents.

This could explain why younger parents rated RettNet as more beneficial than

older parents (Leonard et al., 2004), given that they were more likely to be new

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parents and to have a relatively low base of knowledge related to caring for a

child with Rett syndrome.

Bourdieu (1998) describes how levels of different capitals influence how

individuals are situated within a theoretical ‘social space’. In Distinction

(Bourdieu, 1984) this is represented by a quadrant, with total capital (combining

cultural and economic capital) on the vertical axis and the combination of levels

of economic and cultural capital represented within four quadrants (for instance,

low economic capital and high cultural capital). One’s position in this social space

is thus defined by the “two principles of differentiation… economic capital and

cultural capital” (Bourdieu, 1998, p. 6). Onto this social space can be mapped

different practices across choices made in terms of music, sport, food and

politics. Their relation to particular classes and positions in the social space is

peculiar to a particular time and place and can change. The important aspect is

that they serve as a way of distinguishing oneself from others who hold a

different social position. The closer one is to someone else here, the greater

affinity they will feel. One’s position in this social space is thus influenced by a

combination of one’s social position (class, which is relational) and one’s

dispositions (habitus), which are expressed (distinguished) through one’s

preferred practices:

To each class of positions there corresponds a class of habitus (or tastes)

produced by the social conditioning associated with the corresponding

condition and, through the mediation of the habitus and its generative

capability, a systematic set of goods and properties, which are united by an

affinity of style

(Bourdieu, 1998, pp. 7–8)

The way (and whether) somebody uses the Internet, their use of particular

sites and their use of devices might all be conceptualised as forms of practice that

distinguish them from others, while partly reflecting structural differences. An

important aspect of practices is expressed through taste (aesthetic, political and

so on), which Bourdieu argued is related to cultural and economic capital, but

which also has a generational element (Bourdieu, 1984). Thus, Dutton and

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Blank’s (2013) ‘Cultures of the Internet’ types could be conceptualised as

examples of clusters of online practices that tend to distinguish, for example,

younger from older users of the Internet.

Each form of capital can be converted into other forms of capital. For example,

social capital requires time, as does cultural capital, and both are more available

to those who have greater economic capital and can pay others to perform

services for them. Learning to use equipment that will save time also requires an

initial investment in time to learn and maybe to purchase equipment, which can

also be made possible through having a certain level of economic capital. Having

greater cultural capital also allows more yield from time (Bourdieu, 1986). As

will be discussed in the following section, this has been connected to differences

in the use of the Internet in terms of the development of skills and use of

different technologies.

Capital is deployed within different ‘fields’, which are areas of social activity

that can be seen as analogous to a game, where there is a struggle to gain

symbolic capital and there are ‘goods’ of value to the participant in the game

(Bourdieu and Wacquant, 1992). However this competition is not always

dependent on the conscious use of strategies (Bourdieu, 1993). In Bourdieu and

Wacquant (1992), Bourdieu argues that in any field there is a dominant habitus,

and a match between an individual’s habitus and the kinds of capital revered and

held in this field helps a player to gain a high status or ‘symbolic capital’. In each

field (and subfield), the importance of the forms of capital varies and can change

over time. There are rules that are not made explicit in the same way as in a true

game. The competition between players in this field produce what is at stake

within this field. By participating, players demonstrate that they have doxa

(belief) in the game, accepting that it is legitimate and worth the investment of

their time and efforts (this is known as ‘illusio’). The way that players are able to

operate depends on their position in the group. Participants ‘jockey’ for position

by using and converting different forms of capital to gain advantage – i.e. to gain

‘symbolic capital’. However, players can also change the rules of the game if they

can discredit the kinds of capital possessed by their opponents. Again Bourdieu

emphasises the role of (constrained) agency, where agents are ‘bearers of

capitals’ with “a propensity to orient themselves actively either toward the

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preservation of the distribution of capital or toward the subversion of this

distribution.” (Bourdieu and Wacquant, 1992, p.108) – players may challenge the

rules or play within them. In The Field of Cultural Production, Bourdieu (1993, p.

162) defines a field as “a separate social universe having its own laws of

functioning independent of those of politics and the economy”. Each field has “its

specific relations of force, its dominants and its dominated… [and is] endowed

with particular institutions and obeying specific laws” (Bourdieu, 1993, p. 163).

A field is a social structure that, like habitus, is created by specific social

conditions. Modern notions can become so widely accepted – becoming

“constitutive of our cultural universe” that they are seen as ‘a given’ and used to

interpret events outside the society that produced these notions (Bourdieu,

1993, p. 162). For example, historians of art and literature applying definitions of

‘the writer’ and ‘the artist’ retrospectively, which may not fit the practices of the

time studied (Bourdieu, 1993, p. 162). These perceptions are so insidious that it

is difficult to imagine a society where these things are not a given, but it is

misleading to use modern yardsticks to judge past cultures. Each field within a

particular socio-historical context has particular forms of struggle for symbolic

capital. For instance, in the case of a writer in the literary field, these are related

to whether one can be identified as a writer or not.

Fields can be considered to exist “at different levels of aggregation”(Bourdieu

and Wacquant, 1992, p.104). For example, the literary field can be divided into

subfields such as the novel or the theatre, universities into departments, or the

housing market into house builders or construction firms. Each of these subfields

“has its own logic, rules and regularities” and each move from a wider field into a

subfield is “a genuine qualitative leap” (Bourdieu and Wacquant, 1992, p.104), so

while they are connected to the wider field, they can be seen to function as

separate entities. As will be discussed in the next section, there is some debate in

Internet research about whether or not the Internet should be considered to be a

field or a subfield.

Symbolic capital, which is “commonly called prestige, reputation, fame… is the

form assumed by… [the] different forms of capital when they are perceived and

recognised as legitimate” within a certain field (Bourdieu, 1991, p. 230), and will

66

result in acquiring the goods that are available as a result of succeeding in this

field.

This thesis builds upon McKeever and Miller's (2004) research, which is

instructive in terms of how Bourdieu’s work can be used to explore wider caring

practices. They used Bourdieu’s work (Bourdieu and Wacquant, 1992b;

Bourdieu, 1977, 1978, 1984, 1986, 1990, 1995) to explore how parents gained

symbolic capital for their children with profound and severe physical and

learning disabilities within the medical field (McKeever and Miller, 2004). They

found that some parents were able to ‘jockey’ for position within the medical

field by borrowing the capital of more powerful others (e.g. other health

professionals) in order to improve their and their child’s position. This research

adds to McKeever and Miller’s (2004) work by exploring the role of online

support within these wider caring practices and struggles for symbolic power. As

will be recalled from Chapter 2, two pieces of research suggested that, through

showing ‘scientific literacy’ and reading information gained online, parents were

able to increase their power in the medical field (Gundersen, 2011; Skinner and

Schaffer, 2006).

3.3 Bourdieu online

There is a tendency for some researchers to cite Bourdieu in passing, usually in

relation to social capital, with no further exploration of how much his particular

conceptualisation of social capital fits their data (e.g. van den Hooff et al., 2004).

However, a number of papers in recent years have made serious attempts to

integrate Bourdieu’s concepts into a framework to explore use of the Internet or

online peer support. These studies have been critiqued below in relation to how

they have operationalised Bourdieu’s concepts of capitals, habitus and fields.

Some extensions to this work are suggested, which link the conceptualisations

used here to the literature discussed in Chapter 2.

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3.3.1 Reframing social differentiation online: the role of Bourdieu’s capitals

A set of papers have used Bourdieu’s capitals to try to account for how online

and wider social inequality might reproduce one another. However these papers

are limited in their use of Bourdieu’s concepts, either theoretically or

empirically. As I argue in this section, I believe the wider concepts outlined above

can be combined to provide a more coherent theoretical and methodological

approach to exploring social differentiation in this research.

As outlined in Chapter 2, some commentators have linked Bourdieu’s capitals

with digital inequality. This research is recapped here, with a little more detail

about their use of Bourdieu’s work. DiMaggio and colleagues (2004) noted that

conceptualisations of inequalities online could be understood in terms of access

to cultural capital (Bourdieu and Passeron, 1977), the development of cultural

distinction among those with fewer economic resources (Bourdieu, 1984) and

the concept of ‘overselection’ in making early adopters unrepresentative

(Bourdieu and Passeron, 1977). They suggested that this, along with the

“knowledge gap” hypothesis (Tichenor et al., 1970), could explain inequalities in

terms of technical apparatus, autonomy of use (ease of access), online skills and

support from experienced users (social capital). Hargittai (2008) noted the

potential of using Bourdieu's (1973) conceptualisation of cultural capital as a

way of interpreting the link between parental education and the ‘Internet savvy’

of young people found in an earlier piece of research (Hargittai, 2007). However

this was not developed explicitly in later papers, although the influence of this

concept is clear. For instance, in Hargittai and Hinnant (2008) and Zillien and

Hargittai (2009) it was found that people from higher socioeconomic

backgrounds used the Internet more for what they termed ‘capital-building

activities’, including accessing information about saving money and improving

health. Although there is not an explicit link with Bourdieu’s capitals, this

remains an interesting interpretation, which could be considered to reflect the

economic, cultural and social capital gains made through online connections by

different groups of parents. This work therefore informs the use of capitals in

this research.

Zhao and Elesh (2007) argued that Bourdieu’s (1986) concepts of social,

cultural and economic capitals (with an emphasis on social capital) provide the

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best framework for exploring inequalities in access to social capital online. They

suggested that Bourdieu’s (1986) description of social capital as something

available to homogenous groups (linked to the concept of bonding ties here)

provides an accurate conceptualisation of the social stratification of the Internet.

They also suggested that the ability to convert one form of capital into another

can help more privileged groups to gain greater benefits from the Internet.

However, like the other papers cited here, they failed to explore the wider

potential of Bourdieu’s work (particularly the role of habitus and fields) in

understanding the role of capitals in the use of the Internet.

Drawing on digital inequality data, Helsper (2008) argued that capitals

should be used as a way to conceptualise exclusion, although the model used was

based on later conceptualisations of Bourdieu’s (1986) work, which add

additional capitals (political, civic and personal) to his framework. These ideas

were further developed in a communications paper that attempted to bring

together a number of interdisciplinary concepts (Helsper, 2012). Here she

proposed a model that depicted a two-way relationship between digital and

more general social exclusion. This drew on the work of Wellman and colleagues

(2002), which suggested that online and offline life and connections were

integrated. Helsper’s (2008) description of social resources referred to the social

capital theories of Coleman (1990) and Putnam (1995) but not to Bourdieu’s

conceptualisation. Her adoption of a definition of cultural capital as ‘the shared

norms that guide behaviour within a group’ (Durieux, 2003, summarised by

Helsper, 2008, p.20) seems closer to Bourdieu’s conceptualisation of habitus and

although Bourdieu’s concept of fields is alluded to, its operationalisation (into

economic, social, cultural and personal) actually appears closer to his concept of

capitals. Therefore it lacked specificity because while it used some aspects of

Bourdieu’s capitals, it neglected or misinterpreted others and integrated

elements of different – and I believe, irreconcilable - conceptualisations and

approaches. The key relevance of this paper is therefore in how it suggested that

cultural and economic capital and social connections can accrue across online

and offline settings. As such, it relates to a later discussion about the Internet

being a subfield of wider offline fields, although this idea is not explored in

Helsper’s (2008, 2012) papers.

69

North and colleagues (2008) used case studies to argue that cultural capital

gained through socialisation influenced the tastes and habitus of teenagers in

terms of how they used the Internet. This account was instructive in this

research as it drew more broadly on Bourdieu’s concepts of habitus and tastes to

explore how the Internet is used as a practice in everyday life.

A number of writers have discussed the possible merits of Bourdieu’s concept

of technical capital in conceptualising online skills (Brock et al., 2010; Gilbert,

2010; Halford and Savage, 2010; Zhang, 2010). This was described in The Social

Structures of the Economy (Bourdieu, 2002) in relation to skilled manual labour

(for example, building skills). However I disagree with these writers that it is

necessary to use this concept. Firstly, it refers to a form of cultural capital that is

specific to technical, non-academic skills, such as building (Bourdieu, 2002). I

believe it can therefore offer little in analysing the unequal social differentiation

of online skills, which are related to a different set of skills, different forms of

cultural capital and proliferate among wealthier groups. Secondly, as I argue in

the final section of this chapter, these variations can be explained adequately

through the concepts outlined in the previous section, specifically habitus,

economic, cultural and social capital and their conversion into goods and

symbolic capital in different fields.

There are a number of limitations in terms of how the concepts of social,

cultural and economic capital are operationalised in these studies. Some of these

papers are theoretical and do not include empirical attempts to assess the

theories put forward. As outlined above, some misinterpret Bourdieu’s concepts

or muddy them with conflicting theories. Finally, in most cases the concept of

capitals is used in isolation, without making reference to other useful concepts

such as habitus and fields. As demonstrated in section 3.2, Bourdieu’s concepts of

capitals are integral to his wider theory, with the implications of his social capital

concept (Bourdieu, 1986) markedly different from those proposed by Coleman

(1988, 1994) and Putnam (1993, 2000, 2002).

However, there is also great potential in these studies for how the

concepts of cultural, economic and social capital might be used to draw together

the disparate explanations of social digital divides into a single coherent

framework. For example, the purchasing of devices that allow easier and more

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frequent access to online support spaces for ‘next generation users’ (Dutton and

Blank, 2013) could be conceptualised as a Bourdieusian conversion of economic

capital, via cultural capital, into social capital. Similarly, the digital skills

described by van Deursen and van Dijk (2010) (summarised in Chapter 2) could

be interpreted as forms of cultural capital acquired by professional groups that

increase the availability of total social capital resources available to them. The

ability to free up time by the use of economic capital (Bourdieu, 1986) may also

mean wealthier groups can spend longer building social capital online and

learning new skills in using digital technologies. All of these advantages, if

explored at both a micro and macro level, could provide explanations for how the

use of different forms of online support and information may confer wider

advantages on some groups over others. Possession of cultural capital, in the

form of education, may help to explain why the use of online support and

information appears to provide greater benefits to more educated people, as

discussed in Chapter 2. Among carers this could include the ability to read and

assess some primary research independently. This ability to explore these

primary sources may make the use of online peer support sites less valuable.,

which may explain Leonard and colleagues (2004) findings about the lower

value ascribed to an online support group by professional and older parents. The

possession of particular ‘goods’ in the form of knowledge and expertise, and the

age makeup of online support groups may influence the use of such groups by

older parents in particular, who are also likely to have less developed Internet

skills than younger groups (Dutton and Blank, 2013).

A key difficulty, which is not discussed in detail in the studies mentioned

above, is how to understand the nature of online peer support sites in relation to

social capital. As noted in the previous chapter, following Zhao and Elesh (2007),

a distinction is made in this thesis between the benefits available to people who

post on forums and those who read forums without contributing. Zhao and Elesh

(2007) also argued that online support spaces may comprise professional or

other homogenous groupings or require evidence of one’s legitimate

membership in such a group through an administrator. However, this may be

more difficult to establish among parents of people with Rett syndrome and

parent gatekeepers of Facebook Groups may not have the time to verify whether

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somebody fits within the membership criteria outlined in the Group description.

Bourdieu’s (1986) concept of social capital therefore needs developing when

exploring the kinds of capitals needed to gain useful ‘goods’ in an online peer

support site or group. Drawing upon the previous section, such goods might

include evidence about treatment to take to one’s doctor to gain greater symbolic

power in negotiations, a strategy to deal with everyday caring difficulties or

information about a grant for house adaptations.

In the case of parents who are members of a group but do not post, the

goods available will be restricted to what is being discussed within a group or

site, or what is searchable, in mediums where this is possible. It will effectively

be the same as finding information on static websites (and therefore analogous

to finding information from offline sources too). Although it would be possible, if

one can physically access the online support space, to gain useful information

(informational support), it is not clear how emotional support or companionship

support expressed between contributing parents might help those who do not

actively contribute to a forum. It is conceivable that isolated parents who are

caring for a daughter or son with the same rare syndrome might draw some kind

of reassurance from reading the accounts of other parents who are in similar

circumstances and facing the same difficulties, although the quality of this sense

of support may well be different.

However, there are ways that information might be restricted for those

who do not post. Firstly, reading posts on any kind of site (or indeed any kind of

information, online or offline) may be limited to those possessing a certain level

of linguistic capital. Sites of interest to parents of people with Rett syndrome are

likely to contain at least some technical jargon (relating to genetics, medical

terminology or specialist treatments or resources). Secondly, as noted by Zhao

and Elesh (2007), there may be some control over membership and sanctions for

not participating, particularly where there are large groups with bounded

membership that is visible to all members (for example, in a private Facebook

Group, where membership has to be granted and all other members can see who

else is part of the group and potentially not contributing). However, as noted

above, this may not be policed when groups are run by parents rather than

professionals, due to a lack of time. Thirdly, lack of knowledge with regard to

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understanding how to use a forum (or low online skills) or a lack of time to learn

that cannot be freed up by the use of economic capital may provide another

barrier that might lead people to read without contributing.

For parents who post, there is the possibility of asking other members of

the group for specific advice. However, for those posting within a group, there

may be symbolic struggles to prove oneself a worthy member of the group, a

need to meet certain obligations (perhaps relating to making exchanges of useful

information) and the possibility of becoming involved in a symbolic struggle.

Each form of social capital described above has built-in sanctions against people

acquiring the benefits of social capital without contributing to the group through

building a reputation, being a visible member of an activity or through exchange.

However, this is difficult to police online, particularly in public sites and groups

that can be viewed without a membership requirement and even in large

membership-only groups with shifting active membership. This problem is likely

to increase with the growing ability to monitor sites through RSS feeds accessed

through third-party software or applications.

Wasko and Faraj's (2005) research on why people chose to post on a

technical support forum when they knew others could ‘freeload’ is enlightening

here because it showed that people would post if they felt it improved their

professional reputation, if they felt they had something worthwhile to contribute

and if they were central players in the active network of contributors and had

connections to many others in that network. This is consistent with the idea of

‘community support’ as outlined above in Zhao and Elesh’s (2007) research,

where the central, active group may experience some form of ‘community’ but

where those who do not contribute can experience some form of freely available

community support. However, this is problematic in terms of Bourdieu’s

conceptualisation of social capital, because it means that people with lower

levels of important capitals in the online subfield will be able to benefit from

others’ expertise, rather than it being used to benefit only those who hold

commensurate capitals or useful ‘goods’.

3.3.2 Habitus and use of the Internet

Robinson (2009) used habitus and Bourdieu’s concept of skholè to explore

socially differentiated uses of the Internet among teenagers at an American

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school. Skholè refers to the ability to ‘play seriously’ among French academics in

terms of spending time reflecting upon ideas that others cannot due to time

constraints (Bourdieu, 1998). Robinson (2009) used this to explain the

difference between the use of the Internet between teenagers with low quality

and limited access (task-oriented: “a taste for the necessary”) and those with

high, easy access (less targeted: “playing seriously”). In test of use of search

engines to find particular information, the less task-oriented students performed

more successful and sophisticated searches, cross-referencing multiple sources

and running several searches at once. She connected this theoretically to

conversions of economic capital into higher quality access and time to spend

developing relevant cultural capital, which I believe make the same point in a

more economical way without needing to draw from Bourdieu’s wider theory in

relation to academia. These ideas were further developed in Robinson (2011)

where although she made no further explicit reference to Bourdieu’s work, it is

clearly influential in concepts such as ‘information capital’. As with the Helsper

(2012) paper outlined earlier, Robinson (2011) also acknowledged the

embeddedness of the Internet in wider practices, this time by acknowledging the

range of available online and offline sources of information used by her

participants.

Lewis (2006) compared the use of the Internet for health by students and

by teenagers using a charity for people who are homeless or in need of support.

She demonstrated that while both groups used the Internet to seek health

information, their approaches to health related to wider social experiences

where health ‘choices’ were framed by a different set of social and cultural

experiences. This reflected differences in perceptions of certain behaviours such

as smoking and perceptions of control over health, where a more fatalistic

approach was taken by the less privileged teenagers. She argued convincingly

that this reflects ‘health habitus’, which calls into question the universality of the

reflexive, individually responsible individual described by Beck (1992). This

approach, although not explicitly discussed in Chapter 2, has informed notions of

the ‘informed’ or ‘expert’ patient described there and connects to Giddens’

(1991) work on patients as ‘reflexive consumers’ (Lewis, 2006). Lewis (2006)

suggested that the reflexive individual described by Beck (1992) may more

74

accurately reflect the bourgeois or middle class experience. This recalls the

findings of Henwood and colleagues (2003) discussed in Chapter 2, where

women seeking advice on hormone replacement therapy (HRT) varied in their

willingness to research information online and found it difficult to challenge

health professionals when they did find contradictory information. This is

suggestive of a possible age-related difference in ‘health habitus’ where lay-

professional relationships were concerned, although there may be

socioeconomic differences in information seeking that were not explored.

Hale (2013) used a secondary data analysis of a health survey to explore

the connections between socioeconomic groups, Internet access quality, and

online and offline health behaviours. He used Bourdieu's (1990) concept of

habitus to explore how differentiated use of the Internet and health behaviours

linked to ‘online health behaviour’, a broad category bringing together rather

disparate aspects of use of the Internet for health (to buy medicines or vitamins

online, to take part in online peer support, to use the Internet or email to contact

a doctor, to track diet or exercise, to keep abreast of personal health information,

such as test results). He found links between offline and online health

behaviours, suggesting an overarching habitus in relation to health and that a

higher level of education was associated with more online health behaviours.

Wealthier people scored more highly on a composite measure combining

confidence in finding health information (offline) and trust in using online health

information. Although the measure for online health behaviours was a little

broad and data was gathered before the greater use of ‘next generation’ mobile

devices, this hints at the possibility of a connection between online and offline

practices in information and health that influence the use of the Internet for

health information.

Meyen and colleagues (2010) used qualitative interviews to explore how

aspects of habitus were reflected in use of the Internet overall and how the

Internet was used to build or maintain cultural capital (which they described as

knowledge, particularly relating to one’s career) and social capital. They created

a typology that took into account these aspects as well as demographic

characteristics. They found that age was related to online habitus through

‘Internet socialisation’, reflecting whether people had grown up using the

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Internet. They also argued that professional groups, or those striving for such

positions, tended to use the Internet more to develop supportive cultural and

social capital. However, although they argued convincingly that qualitative

research is required to explore how use of the Internet reflects wider habitus,

the use of qualitative research alone limits the strength and applicability of their

conclusions relating to social position.

This research demonstrates the utility of habitus as a concept to capture

how online health and caring practices may reflect wider habitus in information

seeking and health practices. It also provides a way of conceptualising how, at a

micro level, use of the Internet is used differentially both for different purposes

and in terms of the use of technology and frequency of use. These papers also

demonstrate how it is possible to explore habitus both from quantitative and

qualitative perspectives, using attitudinal measures and interview data

respectively. As will be argued below, I believe an exploration of habitus and its

links to wider structural inequalities can only be achieved through using a mixed

methods approach, which combines the benefits of both approaches taken in the

studies cited above.

3.3.3 Meshing the online and offline: conceptualising online sites and

groups as subfields

Bourdieu did not specifically tackle the use of the Internet in his writing. This

means that he did not explore the status of the Internet in relation to fields.

Although the Internet has recently been conceptualised as a field, within the

rather specific example of meme production (see Julien, 2014), the approach

taken here is consistent with Sterne's (2003) argument that the treatment of

technology should reflect Bourdieu’s use of the camera and television within his

work “[a]s part of the habitus, [where] technologies and their techniques

become ways of experiencing and negotiating fields” (Sterne, 2003, p.385).

Sterne (2003) argued that technology, including the Internet, should not be seen

as separate from society, but as part of society. Treating the Internet as a subfield

is thus consistent with the findings reported so far, which have emphasised the

mundane, everyday use of the Internet as part of everyday practices (e.g.

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Haythornthwaite and Wellman, 2002; Hine, 2015) and suggested that the use of

online support and information should be understood within wider health,

caring and social practices.

In line with this argument, a number of researchers have conceptualised

online support spaces and sites as subfields that operate within wider social

fields. Smith and Stewart (2012) explored the wider bodybuilding field through

posts on the subfield of an online muscle enhancement forum, providing a

detailed description of the power hierarchies and currencies of influence used

within them. They outlined examples of the use of economic capital (ability to

buy machines and drugs to achieve symbolic capital), field-specific cultural

capital (knowledge about steroids, training methods and willingness to go to

extremes), and social capital (regular posting and support for each other’s

efforts) as ways of improving one’s social position within the subfield. A key

limitation of the above study is that they focused solely on online posts. This

does not allow a systematic exploration of how the possession of existing offline

capital can influence support available in different online support spaces for

different people. Those who are effectively excluded from accessing or

participating in some online spaces by not having the appropriate capital or

habitus are not represented in such research.

Finally, an understanding of how narratives relate to fields can help to

conceptualise the role of habitus in distinguishing different online subfields. In

their research on blogs about Black womanhood, Brock and colleagues (2010)

highlighted how blog comments allowed people to challenge and perhaps

influence privileged narratives. This could be conceptualised as a symbolic

capital struggle within an online subfield, where the boundaries of accepted

discourse and therefore ‘rules of the game’ in that subfield, are challenged. Frank

(2014) argued that the dominant illness narrative used in a medical subfield

reflects the dominant habitus in the wider field. Thus narratives used in certain

online support spaces may suggest the influence of a particular offline field, for

example in the use of biomedical narratives within an online support forum, as

found in Lowe and colleagues (2009). Through this such narratives could

provide a clue to the habitus of this subfield, whether parents’ own habitus fits or

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does not fit with this particular habitus and how this impacts on use of this

particular site or group.

Taken together, these studies suggest three conceptual approaches to

exploring the use of online peer support sites in wider caring practices. Firstly, it

is possible to conceptualise the conflicts that occur on online support forums as

examples of struggles for symbolic power. Secondly that it is possible to assess

individual habitus fit with an online subfield through the perceived narratives on

that subfield. Thirdly, that it is possible to explore how online subfields relate to

offline subfields, such as charities, medicine and genetics, through the ‘goods’

and voices represented there.

3.4 Reframing the use of online support and information in the

everyday caring practices of parents of people with Rett syndrome

This final section highlights the gaps in the literature that I aimed to address in

this thesis and concludes with my four research questions. The following

chapters describe how the research was carried out and present the results in

the light of the literature discussed in these preliminary chapters.

Throughout this and the previous chapter, a number of limitations and

gaps were identified in the literature. These are summarised next in order to

provide a context for the contribution of this thesis and to frame the use of

Bourdieu’s theory to provide a coherent approach that addresses these

limitations.

As argued in Chapter 2, research into the use of online support and

information among parents of people with rare syndromes remains

methodologically and theoretically fragmented. This is particularly true with

regard to the role of online peer support, the social differentiation of this form of

online lay support and its use among older parents. This is partly due to the use

of either quantitative or qualitative research approaches, which can only provide

a partial picture of either social differentiation or micro practices. This research

is also limited in that it tends either to conflate all forms of online peer support

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together or to focus on use of a single forum, neither of which can provide an

illuminating view of use of multiple online sources within wider caring practices.

As a result research into this field is theoretically limited in exploring the

interplay between structural differences in the use of the Internet and the use of

online information and support in everyday caring practices, particularly the role

of online peer support. Research into rare syndromes has tended to look at less

rare syndromes where parents will already hold knowledge (e.g. Down’s

syndrome) or a range of rare syndromes that are likely to differ in terms of care

needs.

This chapter has explored the use – and neglect – of Bourdieu’s concepts

of social, cultural and economic capital, habitus and fields in Internet research.

This use has also been rather fragmented, with the employment of only one or

two concepts and few studies that attempt to use these concepts in a more

integrated way, as outlined in the previous section. The use of these concepts is

very rare in research into the use of health practices. As far as I am aware no

research has used these concepts – either singly or together - to explore the role

of online information and support in the everyday caring practices of people

with rare syndromes or disabilities.

This research employed a mixed method approach to explore the role of

online support and information in the wider caring practices of parents of adults

and children with Rett syndrome. The research questions were as follows.

1. Are younger, wealthier and more educated parents of people with Rett

syndrome more likely to use online support and information than others?

2. Are different platforms for online peer support socially differentiated so

that like parents of people with Rett syndrome are brought together ‘in a

seemingly fortuitous way’?7

3. How does an individual’s habitus and possession of different forms of

relevant cultural and social capital affect their use of caring-related online

support and information?

7 After Bourdieu (1986, p.22).

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4. How does the use of online peer support sites influence wider caring

practices? Is there any evidence of differentiation of benefits by age,

income or education?

The next chapter outlines how these research questions were approached,

describing research design and analysis procedures.

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Chapter 4. Methodology

As I argued in the previous two chapters, research into the role of online support

and information in the everyday caring practices of people with a rare syndrome

is methodologically and theoretically fragmented. This fragmentation broadly

reflects wider theoretical and epistemological orientations that tend either to

prioritise the importance of macro, structural differences and downgrade micro

explorations of everyday interactions or vice versa. This can only provide a

partial picture, which is limited in exploring how online information and support

are used in everyday caring practices while acknowledging the likely social

differentiation of online and wider practices. In Chapter 3, I proposed a new way

of researching this problem, which has three key components, described in detail

in this chapter. Firstly, I focused on a case study group of parents of people with

a particular rare syndrome (Rett syndrome, described in Chapter 1). Secondly, I

used Bourdieu’s concepts of social, cultural and economic capital, habitus and

fields and subfields to explore how structural differentiation interacts with micro

processes. Thirdly, as described in this chapter, I used both qualitative and

quantitative methods in a mixed methods approach.

Section 4.1 of this chapter describes and justifies the overall research

design and use of a mixed methodology to explore the research questions

presented at the end of Chapter 3. Section 4.2 describes the survey element of

this research, beginning with the hypotheses to be tested, describing the

development of the survey and choice of measures, piloting, recruitment and

nature of the sample drawn. Section 4.3 describes the qualitative element, which

included both interviews and use of records detailing visits to online peer

support sites and groups. This section includes description of the research tools

used, and recruitment and key characteristics of the interviewee sample. Section

4.4 describes how quantitative and qualitative data was analysed and combined.

The chapter ends with a summary of how this approach was able to yield new

insights into the role of online support and information among carers of people

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diagnosed with a rare syndrome. These insights are presented in the remainder

of chapters in this thesis.

4.1 Research design

As stated above, my aim was to explore whether there was social differentiation

in the use of online support and information and how this related to wider caring

practices. I was particularly interested in how the use of online support and

information might be differentiated in terms of income, education and age. In

other words, I was interested in the links between agency and structure, as

outlined in Bourdieu’s concepts of social, cultural and economic capital, habitus

and fields.

In deciding how to approach this research, I was informed by Bourdieu’s

own attitude towards methodology, in that he argued for using the methods best

suited to addressing the research questions at hand (Bourdieu & Wacquant,

1992). Bourdieu has used a range of different approaches, which broadly divide

into quantitative and ethnographic approaches (Fries, 2009). These reflect his

own position of “constructivist structuralism”, which relates to his arguments

about the “dialogic interplay of objective and subjective social factors” (Fries,

2009, p. 330), a stance I summarised in Chapter 3.

Harrits (2011) argued that Bourdieu’s ‘praxeological knowledge’

approach deals with the double hermeneutics problem of the social sciences

(after Giddens, 1993) where two perspectives coexist: that of the observer and

that of the social actor (Harrits, 2011). This means that “social analysis must be

done both from outside and from within, or as Bourdieu argued, that explaining

and understanding are one” (Harrits, 2011, pp. 160-1). Harrits (2011)

recommended the use of statistical analyses to explore structure alongside

interpretive interviews to explore meaning and experience. She argued that

findings from these two perspectives do not need to mirror one another as in

more traditional triangulation methods used within mixed methodology (Harrits,

2011). This is because Bourdieu’s view, summarised in Chapter 3, is that social

agents may not perceive these structural constraints. Nonetheless Bourdieu

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argued that socialisation informs actors’ practice and leads to a certain amount

of reproduction of these structural differences.

As argued above, it is not possible to explore the interplay between the

social differentiation of the use of online support and information in everyday

caring practices without using both quantitative and qualitative data within the

same case study group of parents. In taking this approach I am also following

Fries (2009), who used social, cultural and economic capital, habitus and fields to

frame his own research. His aim was to answer an analogous question to my

own, which was, “How do objective social structural conditions such as social

class, gender, ethnicity, and education provide the objective context for the

subjective decision to use complementary/alternative medical practices” (Fries,

2009, p. 338). He argued for the use of a sequential mixed method design (after

Tashakkori & Teddlie, 1998), which began by mapping out structural differences

with a survey and ended with an exploration of habitus through individual

accounts. This approach is clearly relevant to the research presented in this

thesis, where my aim is to explore how the objective social structural conditions

of age, income and education provide the objective context for the subjective

decision to use online support and information in one’s wider caring practices.

As will be recalled in Chapter 3, I outlined four research questions, which

are summarised in Table 4.1. These involved the exploration of macro structure,

micro interactions and the possible habitus and capital related processes that

link them together. In Table 4.1 I have included details of the method used to

explore each question, which involves mixing methods across and within

questions.

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Table 4.1 Research questions, relationship to Bourdieu’s concepts and

methods used

Research question Bourdieu’s concepts Method

1. Are younger, wealthier

and more educated parents

of people with Rett

syndrome more likely to use

online support and

information than others?

Cultural capital (as measured by qualification

held)

Economic capital (as measured by household

income)

Differentiated generational practices (as

measured by age)

Survey

2. Are different platforms

for online peer support

socially differentiated so

that parents of people with

Rett syndrome are brought

together ‘in a seemingly

fortuitous way’?

Cultural capital (as measured by qualification

held)

Economic capital (as measured by household

income)

Differentiated generational practices (as

measured by age)

Sense of affinity of people sharing similar

practices and background (in interview

accounts)

Survey

and

interview

3. How does an individual’s

habitus and possession of

different forms of relevant

cultural and social capital

affect their use of caring-

related online support and

information?

Relevant capitals and ‘goods’ available in

different subfields online (e.g. knowledge,

advice).

Habitus (own relevant practices and tastes)

Habitus (as above, perceived in online

subfield)

Use of other sources of social capital.

Interview

4. How does the use of

online peer support sites

influence wider caring

practices? Is there any

evidence of differentiation

of benefits by age, income or

education?

Cultural capital (as measured by qualification

held)

Economic capital (as measured by household

income)

Differentiated generational practices (as

measured by age)

Relevant capitals and ‘goods’ gained in

different subfields online (e.g. knowledge,

advice, increasing economic capital).

Habitus (relevant practices and tastes in the

use of online information and support and in

wider caring work).

Survey

and

interview

84

There were two stages of research. Stage 1 aimed to test the social patterning of

online peer support use and comprised a survey of parents of people with a

diagnosis of Rett syndrome living in the UK. Stage 2 explored in depth how

online peer support meshed with wider information seeking strategies and social

capital resources and what constrained and limited participation in specific

online subfields.

As can be seen in Table 4.1, the Stage 1 survey explored aspects cutting

across three of the research questions. These were the social differentiation of

online support and information, particular platforms for peer support and

resulting benefits. The Stage 2 interview explored how an individual’s habitus

and possession of relevant forms of cultural and social capital affected their use

of online information and peer support and their use of this information and

advice in their wider caring practices. This stage also involved filling out a record

of recent visits to online peer support sites and, if available, use of a computer,

smartphone or tablet to check details, which were used as aide memoires during

the interview. The following sections give further details about how these stages

were implemented, the research tools used, process of research, samples drawn

and analysis methods used.

A third stage, exploring online interactions, was originally proposed and

approved by the University of Surrey Ethics Committee (see Appendix 2 for

approval letter). This aimed to triangulate findings from the other two stages

through exploring the use of language, dominant discourses and social

sanctioning in two public peer support sites and groups used by interviewees.

Anonymised covert observations were to be made as requests to observe may

have prevented or deterred parents from posting on these sites and groups

during fieldwork. However, the only public sites ever used by interviewees were

charities’ Facebook pages on which little, if any, peer support was given. This

was an interesting and unexpected finding, which is discussed in more detail in

Chapter 7 in relation to the greater symbolic capital held by organisations as

compared to parents within these online subfields. In addition my developing

research relationships with parents and gatekeepers and increasing

transparency in sharing my results introduced a risk of deterring parents from

using such sites in the future if covert observations were carried out alongside

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this more open method of engagement. As a result, I decided that carrying out

observations on public sites would yield no useful additional data and raise

ethical difficulties. Instead I retained my focus on parents’ accounts of relevant

practices in relation to the use of online support and information. I was able to

verify descriptions of online practices in an informal way while looking up links

provided in online support use records (see the beginning of section 4.3 for

details) or during interviews, when sites were often browsed to aid discussion.

4.2 Stage 1: Quantitative survey of parents of people with Rett

syndrome

Following the rationale described above, Stage 1 aimed to map out the structural

differences in parents’ use of the Internet and online support and information

related to caring for someone with Rett syndrome. In particular, this involved

exploring differentiation by age, income and education, as outlined in the first

research question. Respondents to the survey also provided a sampling frame for

recruitment into Stage 2, as described in the next section. A survey was chosen as

an appropriate method for making planned comparisons between groups

(Sapsford, 2007, p. 10), in this case age, income and education groups. As the

survey used mostly quantitative questions this allowed the construction and

comparison of statistical descriptors of this population (Groves et al., 2004),

facilitating comparisons between these groups of interest.

4.2.1 Hypotheses and exploratory analyses

As described in Table 4.1 above, the survey addressed research questions one

and two and part of question four. A set of hypotheses was created, which are

listed in Table 4.2 alongside the relevant research question. These hypotheses

were based on the literature reviewed in Chapter 2. However, it is important to

note some of the ambiguities and gaps within the literature and the reasoning

behind how these hypotheses were created and why some could not be created.

Hypotheses relating to the social differentiation of the use of the Internet overall,

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its use for caring information and the use of online peer support are based on the

strongest evidence described in Chapter 2, although it is somewhat limited in

places. Preliminary findings suggest that there is social differentiation of the use

of the Internet for health information, with younger, wealthier and more

educated people more likely to use it in this way. However, with regard to the

use of online peer support, the evidence is less clear and what is known is based

on a single study of a single forum (Leonard et al., 2004). This study found that

although there was greater use among more educated and professional parents,

the utility and benefits of the group were rated lower by parents working in

clerical, professional and management posts and older parents. Posting

behaviour is another grey area. Oxford Internet Survey (OxIS) data shows a

greater level of posting across different online platforms by younger people and

people with higher incomes. However, given the lower amount of time spent on

RettNet by professional, clerical and managerial groups and older parents

(Leonard et al., 2004), it is possible that this does not hold true for posting on

online peer support sites.

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Table 4.2 Hypotheses to be tested in Stage 1

Research question Hypotheses

1. Are younger, wealthier and

more educated parents of

people with Rett syndrome

more likely to use online

support and information than

others?

a. Internet use will be significantly positively related to income

and education and significantly negatively related to age.

b. Among Internet users, use of the Internet for information and

advice related to Rett syndrome will be significantly positively

related to income and education and significantly negatively

related to age.

c. Among Internet users, younger, wealthier and more educated

parents will be significantly more likely to have ever visited an

online peer support site.

An exploratory analysis will be undertaken to explore whether

age, income or education are related to ever having posted on an

online peer support site.

2. Are different platforms for

online peer support socially

differentiated so that parents

of people with Rett syndrome

are brought together ‘in a

seemingly fortuitous way’?

An exploratory analysis will be undertaken to explore the role of

education, income and age in use of different peer support

platforms.

4. How does the use of online

peer support sites influence

wider caring practices? Is

there any evidence of

differentiation of benefits by

age, income or education?

a. Among users of online support, younger parents and

those who do not work in a professional, clerical or

management role will be more likely to report benefits

of use.

An exploratory analysis will be undertaken to explore whether

income or education are related to the benefits of using online

peer support.

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4.2.2 Design of the survey

The full survey questionnaire is available in Appendix 3. An introductory page

included key information about participation including an outline of the

research, estimated time required to complete the survey and how data and

anonymity would be protected. Parents were asked to choose one person to fill

out the survey per household. This was to ensure that each respondent provided

information about the caring practices of a single household8. The questions

were divided into five sections:

the first asked about sources of support and use of the Internet;

the second and third were for current Internet users and ex-users

respectively, and covered use of online support groups, social capital

benefits and (for ex-users) reasons for stopping use;

the fourth section was for people who had never used the Internet and

covered intention to use, reasons for not using and views on potential

benefits of use, including caring advice and support;

the final section covered key demographic details and included an

interview request for current online support site users.

As outlined in the first section of this chapter, I aimed to establish

whether there were structural differences in the use of the Internet, online

support and information and online peer support groups. My choice of measures

was based on the evidence of social differentiation of online support and

information use presented in Chapter 2 and the arguments about the role of

economic and cultural capital in understanding differentiation of the Internet in

Chapter 3. I was also informed by Bourdieu’s use of structural measures in

Distinction (Bourdieu, 1984), where he combined household income, education

and occupation to explore socio-occupational class differences and as part of his

operationalisation of cultural and economic capital. As discussed in the final

section, the numbers of respondents to my survey were too low to carry out

complex comparisons across combined categories; so single categorical variables

8 Although this may have led to completion by the parent who was more active online (see later data about Internet use), this would still have provided more information about the impact of online support and information within wider caring practices as they related to someone with Rett syndrome within one household.

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were used instead. Therefore household income was used as a proxy for

economic capital and education as a proxy for cultural capital. Occupation was

used as a reflection of socio-occupational class only where there was an

indication that occupation rather than education or income was likely to

differentiate use. This also reflects a pragmatic decision based upon the high

number of parents in this sample who were full-time or part-time carers, some of

whom had given up high-status occupations in order to care full-time. In

addition, some parents’ part-time roles were likely to reflect fit with caring

duties, rather than reflecting class background. Therefore education was seen as

a more fitting way of exploring class affiliation in a way that was more analogous

to Bourdieu’s (1984) conception.

I operationalised social capital sources by asking parents about their

views and use of specific forms of alternative sources of caring-related

information and support: local health professionals, telephone support from an

organisation, local group support and online support.

Appendix 4 summarises details of the measures used in each section. In

order to make meaningful comparisons with Oxford Internet Survey (OxIS) data

collected during my survey fieldwork period I sought and secured permission to

use Internet use and demographic questions from the latest OxIS questionnaire

(G. Blank, personal communication, May 17, 2012). However it should be noted

that the OxIS is interviewer-led, while my survey required self-completion.

Where possible, I have followed the wording of the 2013 OxIS questionnaire.

However I sometimes made minor changes to make questions more appropriate

for self-completion9. Where new questions were created they used the same

anchoring terms, categories and terminology used in the OxIS questions where

possible and relevant. This included use of demographic measures of age,

income, occupation and education used by OxIS in order to facilitate

comparisons with wider Internet use findings.

9 The biggest wording change was from the OxIS interviewer asking ‘Do you yourself personally use the Internet at home, work, school, college or elsewhere or have you used the Internet anywhere in the past’, followed by a prompt about ever having used the Internet, I split this into two questions and reduced the words to support recall and understanding of the question. The question used in my survey was, ‘Do you currently use the Internet on any device (at home, work, school, college or elsewhere)?’

90

In order to measure the benefits of online sources of support I was guided

by Ferlander’s (2007) descriptions of four kinds of social support that can be

accessed through social capital resources described in Chapter 3. I adapted

relevant items from Williams' (2006) Internet Social Capital Scale (ISCS) that

related to Ferlander’s (2007) definitions of informational, emotional and

instrumental support (see Appendix 4).

4.2.3 Pilot phase

I attended a Rett UK Regional Day and talked to interested parents about my

research and planned survey. Five parents agreed to pilot my survey. Three

parents and my external supervisor gave feedback on the full draft of the survey,

providing some minor wording improvements, which were incorporated into the

final survey. Additional online support sites were added to the survey as a result

of suggestions. Parents suggested that the ideal time for a survey was 10

minutes, with a maximum of 15 minutes.

I asked five friends to time themselves completing the longest path through

the survey. This took them up to 10 minutes to complete. The expected time to

complete the survey was listed as between 10 and 15 minutes on the survey to

take account of the additional time needed for parents to remember details

required to answer certain questions.

4.2.4 Structure of final survey

All respondents were routed through the survey depending on their answers to

filter questions. This was through written directions in the paper version or

automatically in the online version. The survey was created using Survey

Monkey’s online software ( www.surveymonkey.com ) Select package, which

allows rerouting from irrelevant questions. The online survey was adapted to

create a paper version based on a PDF (Appendix 3), in order to “keep the

essential survey conditions as similar as possible across modes [of data

collection]” (Groves et al., 2004, p.164). Paper questionnaires were printed as A5

booklets. The question about recruitment channel was excluded from the paper

survey as all paper surveys were sent out with letters to Rett UK members (see

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below)10. The question about current Internet access was excluded from the

online survey as online completion demonstrated current access.

4.2.5 Reaching parents of people with Rett syndrome

My focus was on UK-resident parents11 of living people with Rett syndrome. I

aimed to recruit 250 parents. As with many groups of carers or people with a

specific condition or syndrome, there was no central database listing people with

a diagnosis of Rett syndrome. At grant proposal stage I had negotiated

permission to recruit a random sample of parents from the British Isles Rett

Syndrome Survey (BIRSS), a research database that contained 930 family

contacts. However, when I met with the Cardiff University staff managing this

database to finalise arrangements, they informed me that only 300 contact

records were known to be current and that the majority of referrals came from

Rett UK’s membership database. We therefore agreed that a different sampling

frame would be more appropriate for this research.

As described in Chapter 1, Rett UK (established in 1985) was the only UK

charity completely focused on providing support for parents. Rett UK have a

large database of members (1200 households at the time of my fieldwork),

including parents of people with Rett syndrome. As noted in Chapter 1, the only

other Rett-specific UK charities (Rett Syndrome Research Trust and Cure Rett)

were relatively new, having been established in 2009 and 2012 respectively

(Rett Syndrome Research Trust, n.d., Cure Rett, n.d.) and neither offered

membership at the time of the survey.

Rett UK’s database of members is updated every two or three years.

However membership required a subscription fee until 2011, meaning there was

a risk it would slightly underrepresent less wealthy parents. Rett UK gave

permission for me to send a letter to their ‘family’ members and details of the

two mailings I sent to Rett UK members are described in Appendix 5. This

includes a description of the letter sent to members (Appendix 6). As will be seen

below, I added additional channels of recruitment in order to reduce any biases 10 Had any further surveys been requested through the other channels, a note would have been written on the survey to allow coding of this channel. However, none were.11 This included foster parents

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of completely relying on this database as a sampling frame. However, the nature

of the available sampling frames meant it was not possible to carry out a

randomised sampling approach. Given my intention to compare groups across

multi-level variables (e.g. household income by use of specific support spaces)

any attempt to draw a simple random or stratified random sample from the Rett

UK membership risked drawing too few responses for the kinds of analyses

planned12. This would potentially be worsened given the likely low response

rates among carers (for instance, 40% among carers in Blackburn and Read,

2005). There was no way of creating a larger sampling frame of eligible parents

as not every source contained sufficient demographic detail. Finally, as some

channels were public (e.g. public online groups) it was not possible to estimate

their reach to eligible parents.

I instead decided to recruit as many people as possible and then try to

establish how much my sample was representative of eligible members of Rett

UK, who provided the largest potential pool (and number of respondents) in this

sample. As outlined above, Rett UK’s membership database is the most complete

sampling frame and therefore the closest there is to a UK-wide estimate of

demographic makeup of this group and certainly of the main sample population

from which I was recruiting. In order to assess any sample biases I compared the

demographic profile of survey results with an anonymised version of Rett UK’s

database (see Appendix 5 for details of how I created this database). As I needed

to reach as diverse a group as possible to aid diverse recruitment into Stage 2, I

carried out additional recruitment through online support sites. It was likely that

there was a group of parents who were not accessible through these channels,

which all required some form of engagement with charities, email newsletters or

online support groups. This potentially introduced a bias towards parents who

may be (or have been) more actively seeking information. Therefore articles

about my research were also included in Rett UK’s newsletter, which is posted

out to all members and then posted online at a later date. This increased the

potential pool of parents via contacts with professional carers, friends and

relatives of parents who were not affiliated with any charitable body or reading

12 Sapsford (2007) suggests that there should be at least 20 people per cell in each comparison

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online support groups. A copy of my initial recruitment article can be found in

Appendix 7, which included key study information provided through other

channels. I added reminders about the research within subsequent articles in the

newsletter. Despite these efforts, I acknowledge the possible impact of a likely

bias toward parents actively (or previously actively) involved in information-

seeking in my interpretation of findings in Chapters 5-8.

To maximise recruitment through all channels I provided surveys in

online and paper formats and gave interviewees a choice of a range of modes of

interviews. The use of three different mediums (letters, newsletter article and

online postings) necessitated different approaches to recruitment, which are

described in more detail in Appendix 5.

I initially collected survey data between the middle of November 2012

and 21st December 2012. However, as I had only received 140 responses by this

date, I reopened data collection after I had received ethical approval for my

second mailing (see Appendix 8). This second period ran from 22nd March 2013

until July 2013. The second mailing went out to 577 people on 22nd March 2013.

Details are given in Appendix 5 and the follow-up letter (Appendix 9) and a form

aiming to assess reasons for non-response and eligibility in the sample

(Appendix 10) are also described there. Reminders were also sent out in Rett

UK’s newsletter and in the online sites and groups as before.

Non-parental family members or bereaved parents completed some

surveys sent out in the first mailing. In discussions with Debbie Main, my

external supervisor at Rett UK, it transpired that this database included the full

range of familial relations, not just parents. Appendix 5 gives full details of how I

managed the second mailing to avoid these difficulties.

During data entry of paper surveys, I noticed a number of misprints.

These had occurred during conversion from my PDF questionnaire into the

printing software used by the printers. Misprints were mostly minor, preserving

the legibility of the questions (boxes replaced the hash tags in questions about

Twitter, the ampersand in ‘Yorkshire & the Humber’, the ‘2’ in ‘NVQ 1 or 2’ and

the é of ‘Internet Café). Unfortunately two misprints compromised the legibility

of two questions. In the question on part-time working hours a box replaced the

‘2’ in ‘Working part-time 8-29 hours per week’, but the full-time hours being

94

listed as 30 hours a week or more provided helpful context. The most

unfortunate printing error was in the household income question, which made

the first three income categories (up to £30,000 per year) illegible in paper

surveys. This meant that only online surveys and paper surveys that had been

sent out and returned during the second mailing collected details of household

income under £30,000 (74 online surveys, 15 paper surveys with accurate data

in the under £30,000 per year groupings, n = 89, 46.8% of all surveys). In some

of the paper questionnaires containing the misprint one of the lower categories

had been ticked and sometimes cases respondents had written in a salary band

range that could be related to existing boundaries.

Paper surveys were therefore coded using any of the categories over

£30,000 that had been ticked, as “under £30,000” or into one of the lower

categories if enough additional information had been given. Respondents

earning over £30,000 were able to indicate their earning band across both

survey formats, meaning that accurate household income data was available for

all respondents earning over £30,000 (n=92). In total, accurate, full data was

available about household income for 78.6% of the sample. The number of

people who indicated that they earned £12,500 or less was very low (n=7) and

all had completed the online survey. If, as found in the OxIS, far fewer people in

this category used the Internet than in other groups (58% as compared to 88%

and over in other groups: Dutton and Blank, 2013), one would expect a

disproportionate number of respondents earning under £12,500 per year to fill

out the paper survey, the majority of which were misprinted. Therefore, the

‘Under £30,000’ group may include – and disguise - a large group of people

earning under £12,500 per year.

Thirty two parents requested a new survey. New surveys sent out

corrected printing errors found in the original survey. Fifty new eligible

responses were received in the second survey data collection period: two new

paper surveys, 20 old paper versions of surveys and 28 further online surveys.

After ineligible and incomplete online responses13 had been excluded,

there were 190 complete, eligible survey responses. Checks for duplicate

13 It was stipulated in the online survey information that if parents wished to withdraw from the survey they could stop at any point, so incomplete surveys were withdrawn.

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responses were run in SPSS and none were identified. It was difficult to calculate

a definitive response rate, so a maximum sampling frame number of 607 was

calculated by subtracting 12 ineligible parents identified from the second mailing

from the final sampling frame size of 619. The minimum response rate based on

letter returns from this maximum sampling frame was 26%, but given the

possibility of over-inclusion - for example of unidentified family members plus

parents of children who do not have a formal diagnosis or who have not

informed Rett UK that they have been bereaved - it may well be much higher.

There were 71 responses to the second mailing questions about non-

response, including 58 from eligible parents. This represented only a small

fraction (14%) of returns from non-responding parents who were sent a letter

through Rett UK, so is not representative of the whole set of non-respondents.

Nonetheless, it provided illuminating data, especially from a group that were

unwilling to engage in the research and might otherwise have been

unrepresented. The next section outlines the characteristics of the survey

sample.

4.2.6 Characteristics of survey sample

Table 4.3 shows proportion of recruitment by channel. A large majority (83%)

were recruited through letters sent to named Rett UK members. Those recruited

online were from a range of online channels: Rett UK’s Facebook Page (13), other

Rett-specific Facebook pages and groups (six), Twitter (three) and a PMLD

Network email (one). Although respondents were given a choice of survey mode

at recruitment, they most often responded in the mode in which they were

approached. Sixty-four per cent of parents who were sent a letter with a paper

survey responded in that mode, while all parents recruited through all other

channels completed an online survey, none requesting a paper survey. Overall,

61% of respondents returned a paper rather than an online survey, reflecting the

greater number recruited through letter.

Table 4.3 Recruitment channels for survey respondents

Method of recruitment n % of sample

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Letter to named Rett UK member(s) 158 83.2%

Rett UK newsletter only 4 2.1%

Online 23 12.1%

Through a friend or relative 1 0.5%

Not given 4 2.1%

This section highlights salient characteristics of the survey sample and describes

what can be gleaned about non-response biases.

Rett UK data was summarised for households asked to complete the

survey in the second mailing (see Appendix 5 for details). This included data

about 619 households. The available data depended on the membership form

used. Less data was collected from more recent records. Table 4.4 presents

demographic data available on Rett UK’s database, which is compared with the

sample data. This represents data available on individuals listed either as a

couple or as a single member (n= 977). Some comparisons were difficult to make

due to missing data – most notably age data, which was only available for just

under half of relevant members and gender information, which was not always

available. Nearly a quarter of data on ethnicity was missing, making this

comparison less meaningful.

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Table 4.4 Comparison of individual data from Rett UK database with sample

demographic data

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Rett UK sample Survey respondents

n % n %

Member or respondent age

23-34 15 1.5% 15 7.9%

35-44 95 9.7% 47 24.7%

45-54 148 15.1% 50 26.3%

55-64 95 9.7% 49 25.8%

65+ 70 7.2% 24 12.6%

Not known 554 56.7% 5 2.6%

Ethnicity

White 724 74.1% 179 94.2%

Ethnic minority 27 2.8% 7 3.7%

Not known 226 23.1% 4 2.1%

Gender

Female 224 36.2% 163 86.0%

Male 37 6.0% 21 11.0%

Couple (not specified) 357 57.7% n/a n/a

Missing 1 0.2% 6 3.0%

Occupational group

Managers, Directors & Senior Officials 29 3.0% 7 3.7%

Professional Occupations 119 12.2% 30 15.8%

Associated Professional & Technical Occupations 50 5.1% 11 5.8%

Administrative & Secretarial Occupations 46 4.7% 11 5.8%

Skilled Trades Occupations 55 5.6% 1 0.5%

Caring, Leisure & Other Service Occupations 44 4.5% 14 7.4%

Sales & Customer Service Occupations 10 1.0% 2 1.1%

Process, Plant & Machine Operatives 16 1.6% 0 0.00%

Elementary Occupations 13 1.3% 2 1.1%

Carer 177 18.1% 70 36.8%

Retired 46 4.7% 33 17.4%

Missing (not taken, given or not enough information) 371 32.8% 9 4.7%

The sample drawn appears to have under-represented men and ethnic

minorities but represented a range of occupations, although over a third of

survey respondents were full-time carers, a higher proportion than in the Rett

UK database. Some of these differences may have been due to the instruction to

choose one person to complete the survey, where female respondents may be

more active in seeking out health information. Nonetheless, as stated earlier, this

may have meant data was collected about the person more likely to be using

online support to inform household caring practices, potentially giving a more

accurate reflection of its influence within a household. Survey respondents were

aged between 23 and 89, with the majority of respondents aged between their

30s and 70s. There was a low proportion of parents aged over 65, but this was a

greater proportion than those found in the Rett UK database. Due to missing data

on age in the Rett UK database, it is hard to assess whether there are fewer older

carers on the database overall, but a smaller number in this age group may partly

reflect the higher rate of sudden mortality among people with Rett syndrome

than in the general population (see Chapter 1).

Table 4.5 compares household-level data available on the Rett UK

database and in the survey sample group. There was more information available

on the age of children of members with Rett syndrome (calculated from year of

birth) than on the parents’ ages, although there was missing data for 104

children. There appears to be a slightly higher representation of parents of

younger children in the sample, although of course missing data might mask

higher levels of membership among parents of younger children.

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Table 4.5 Household information comparison between Rett UK members

and survey respondents

Rett UK sample Survey respondents

n % n %

Age of child with Rett syndrome

Pre-school age (0-4 years old) 6 1.0% 13 6.8%

Primary school age (5-10 years old) 63 10.2% 34 17.9%

Secondary school age (11-16 years old) 116 18.7% 44 23.2%

Post-school age (17-25 years old) 139 22.5% 37 19.5%

Aged 26-38 years old 132 21.3% 42 22.1%

Aged 39+ years old 59 9.5% 15 7.9%

Not known 104 16.8% 5 2.6%

Region of UK

Scotland 22 3.6% 8 4.2%

North West 66 10.7% 24 12.6%

South West 55 8.9% 24 12.6%

Wales 18 2.9% 7 3.7%

South East 95 15.3% 46 24.2%

Greater London 82 13.2% n/a n/a

London n/a n/a 17 8.9%

East of England 22 3.6% 8 4.2%

East Midlands 40 6.5% 20 10.5%

West Midlands 67 10.8% 13 6.8%

Yorkshire & the Humber 55 8.9% 11 5.8%

North East 19 3.1% 8 4.2%

Northern Ireland 14 2.3% n/a n/a

Not known 64 10.3% 4 2.1%

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In terms of regional representation, survey respondents represent most

of the range of areas covered by members, excepting Northern Ireland, which

was left off the list of areas in the survey in error (although nobody added this

information to the additional information box at the end). Where region could

not be ascertained from address information, this was noted as ‘not known’, but

only 10% of records had this problem. Given the overlaps between categories of

the South East and London in the survey and Greater London in the membership

database, the percentages were not very different from one another overall,

suggesting reasonable representation of members by area. Not shown in Table

4.5 is the proportion of households with two children with Rett syndrome, which

was about equivalent, with nine among Rett UK members (1.5%) and two among

survey respondents (1.1%). Similarly, seven children of members of Rett UK had

male children with Rett syndrome (1%) compared with one in the survey sample

(0.5%).

Overall then, data in the sample was reasonably reflective of the diversity

of members of Rett UK in terms of geographical area covered and occupational

group, although there was a higher representation of retired people and carers in

the survey sample. Women were probably over-represented in the survey

sample. It was possible that younger parents of younger children and people

identifying as having a ‘White’ ethnicity were more highly represented in the

sample than among members although it was difficult to judge differences due to

missing data. However, it appears that younger parents were reached through

the addition of online recruitment, which added another 22 respondents (12% of

the sample) not reached through other media. Parents recruited solely through

an online source were significantly younger on average (41 years old, ranging

from 23 to 60 years old) than those recruited through at least one non-online

source (average 52 years old, ranging from 29 to 89 years old)14 and doubled the

number of respondents in this age group from seven to 15.

14 A chi-square comparison of age groups was significant, 2 (4) = 28.30 p< .001, with a significant and moderate association between age and recruitment mode (Cramer’s V score of .393, p <.001). The significance derived mostly from the much higher percentage of the 23-34 year-old age group (p< .001) that were reached only online (34%) compared with the sample average of 8.2 per cent.

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Appendix 11 includes further information about sample respondents that

was not available from Rett UK membership records. It was most common for

children to have received their diagnosis when aged under four (59.9%) or

between five and 11 years old (21.4%). Seventy two per cent of respondents’

offspring with Rett syndrome lived in the respondent’s household all of the time.

The majority of respondents had some form of higher education (43.2%),

although just fewer than a third had reached basic or secondary education and

9% had no qualifications. It was difficult to assess the household income of

respondents due to the printing error, but about one third earned under

£30,000, with a spread of household earnings across the full range of categories

from under £12,500 per year to £80,000 or more.

Internet use among survey respondents was very high (91.6%) compared

with the current UK rate of 78% (Dutton and Blank, 2013). As this is not a

randomised sample, it is not possible to conclude whether or not use of the

Internet overall is higher among this group of carers than in any other group or

whether this reflected a self-selection bias. However, in data from the non-

response form, a third of those choosing not to participate cited a lack of interest

in the topic because they did not use the Internet, suggesting a slight self-

selection bias. Nonetheless as the main focus of this thesis is on understanding

the differential role of online support and information in everyday caring

practices among current Internet users, this sample still allows for a thorough

exploration of the research questions posed in the previous chapter.

4.3 Stage 2: Qualitative interviews

As outlined in Table 4.1, interviews were used to explore the micro processes

involved in the use of online peer support and information, in particular in

answering research questions two to four. Thus interviews were used as

described by Fries (2009) as a way of exploring people’s accounts of their own

practices in terms of online and offline support and information seeking, their

dispositions toward the Internet and online information and platforms, and how

they used information in their wider caring practices. As such the aim was to

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uncover relevant forms of habitus through these dispositions and practices.

These were used to try to explore individual agency and how this related to the

constraints of structural differences. Semi-structured qualitative interviews were

chosen because they allowed an in-depth exploration of the complexity of

people’s experiences (Mason, 2002, p. 65) while retaining a topic-based but

flexible structure (Bryman, 2008, p. 438).

As part of the interview preparation, parents were asked to complete

short records of their use of online peer support sites (see Appendix 12). These

included details of the posts they had viewed, the responses to it and whether

they commented or not. The record was available in three formats (paper

questionnaire, Survey Monkey survey designed to be readable on all net devices,

and editable Word document). These records were designed to be used as

elicitation cues rather than sources of data (similar to the use of text messages in

Rettie, 2008), so were destroyed after the interview. This approach was adopted

to avoid the burden of a full diary for parents with high demands on their time,

where the data collected may be of varying quality or may not be collected at all.

Not all parents completed records. Their use was supplemented or replaced by

parents looking up information on the Internet during the interview, an element

introduced by a parent at the first interview and adopted in subsequent

interviews where online access was available.

4.3.1 Recruitment

UK-resident parents who had visited any online support site related to caring for

their child15 with Rett syndrome in the last three years were eligible to

participate.

Recruitment began with the first surveys sent out on 21st November 2012. A

total of 55 parents noted their interest in participating in an interview through

the survey. Six parents were not eligible and I contacted them to thank them for

completing the survey and explain why I was unable to interview them.

Initially each eligible volunteer was emailed to request setting up a time for a

phone call to discuss the next stage of the research or telephoned if they had only

provided a telephone number. In these phone calls I described the interview 15 This included adult children

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process and measures to protect data and anonymity, answered any questions

and tried to build some initial rapport. I sent all parents who still expressed

interest in the research a covering letter or email (Appendix 13), a paper or

electronic copy of the Information Sheet (Appendix 14) and the consent form

(Appendix 15). Whenever I received a completed consent form I contacted

parents to make final interview arrangements.

Some parents, although initially interested and in some cases returning

consent forms, changed their minds about participating when we were trying to

set an interview date and in one case a parent texted to cancel an interview the

evening before it was due to happen.

I faced ethical challenges at various points in the recruitment process. One

parent had consented but had not come back to me to confirm a date for the

interview. Another parent had agreed to participate in an email interview but did

not respond to the opening email in the interview. On contacting both I

discovered that their children with Rett syndrome were in intensive care.

Another parent told me on a follow-up call that her mother had just died, but that

I could ring her after the funeral. In all of these cases I decided the most ethical

course of action was to remove any sense of obligation to participate by asking

parents to contact me if they wished to continue with the research. None of these

parents came back to me.

After following up all parents who had indicated interest through the survey I

made some direct appeals for interviewees in the Rett UK newsletter and the

online forums where parents were recruited for the survey, linking to details

posted on my research website, which was based on recruitment information

sent in the letter to Rett UK members (Appendix 6). As a result of this I gained

consent from two further parents to participate in the research (via Twitter and

through a family member) and both also agreed to complete surveys.

Twenty parents began interviews with me and nineteen completed them (see

below for further detail). Thirteen were Rett UK members, four were recruited

online, one heard about the research through a friend and one did not share how

they had been recruited. I carried out one joint interview as the husband of the

main interviewee stayed and participated, although he contributed less than the

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primary interviewee. Less is known about this interviewee, as he had not filled

out a survey.

4.3.2 Mode of interview

Prospective interviewees were advised that interviews were expected to take

between one and a half and two hours. For those who agreed, a choice was

initially given between three synchronous modes: face-to-face, Skype or

telephone interviews. Where synchronous interviews were not viable, email

interviews were offered. As email interviews are asynchronous they can be

completed in short episodes when convenient (Opdenakker, 2006). By offering

these to parents I hoped to avoid excluding parents with the most caring

responsibilities or with competing demands from both work and home.

However, I stressed that the material of a synchronous interview would still

need to be covered. A preference-based selection of mode was used to avoid

generating researcher-centric biases between modes, for example providing

face-to-face interviews to those within a local travel radius.

When an interview date or start date (for email interviews) was agreed

interviewees were asked to fill out records with two or three examples of carers’

online support sites and groups they had visited in that time.

Where interviews were carried out in private residences, I left a sealed

envelope with the address with my husband. I arranged to call him by a certain

time and he was to open the envelope only if he was unable to contact me by

then or I did not return home. On returning home I destroyed these details. I

made private reflexive audio notes as soon as possible after each interview,

usually immediately afterwards in my car.

Where records of online support site use had been completed, these were

used as elicitation cues when talking about specific sites during the interview.

Parents were also encouraged to look up details of posts they had read or sites

and groups they used if a computer or smartphone were available for this

purpose. Where records were used, in some cases parents kept possession of the

records, describing their contents to me, which allowed them an additional level

of confidentiality and control over the interview process. In practice, all parents

used either records, notes or real-time checking of sites and groups as elicitation

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cues during the interview. The use of records or of real-time browsing produced

different kinds of reflections. Parents using their own notes would talk more

about their own experiences of browsing and what they had found useful or

interesting, while parents browsing online would discuss their impressions of

the sites, which were sometimes sites they had not browsed for some time. In

both cases, personal experiences and attitudes to regularly used sites were

elicited and analysis focused on the key areas outlined above in terms of their

own practices and dispositions. At the completion or termination of each

interview parents were given a sheet including my contact details and a range of

support services (Appendix 16).

4.3.3 Interview schedule

The interview schedule (see Appendix 17) covered interviewees’ general use of

the Internet and their experiences of having visited different support sites.

Following Fries (2009), the questions were designed to find out about the detail

of practices as part of a reflexive sociological approach, focusing on descriptions

of practices and their taken-for-granted dispositions (i.e. habitus) towards the

Internet, information and support seeking and wider caring practices.

For each site they used regularly they were asked about the regularity and

frequency of use, reasons for posting or not, perceived norms of the site (to

explore perceived site habitus) their similarity to other users and users’ views

(to assess ‘affinity’ and shared habitus), types of advice sought and found,

reactions to conflicts, the use and utility of advice gained online, information-

seeking strategies across sites and offline sources and the benefits and

limitations of online support. This schedule was used flexibly, with topics

covered in the order they arose in the interview.

4.3.4 Sample

I had aimed to recruit a range of parents who used online support sites in

different ways and who could shed light on the demographic trends found in

Stage 1. Given the difficulties of securing participation outlined above, my sample

was essentially a convenience sample, comprised of all parents who had agreed

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to and been able to complete my interview. However, possibly due to the survey

sampling through a range of mediums, there was still a good variation in use of

the Internet, age of parent and child with Rett syndrome, time since diagnosis,

household earnings and geographical location. This meant that, as originally

planned, interviewees were able to give a broad picture of their use of the

Internet, which could give some insight into the demographic patterns of use

outlined in the results section, particularly as these related to age and time since

diagnosis.

Table 4.6 provides key demographic data about interviewees. All but four

of the interviewees were female and all but two were White (of British origin).

Although 13 interviewees had spent their whole lives living in the UK, six had

spent some time living elsewhere, sometimes living abroad for a few years, while

one person had moved to the UK from South Africa in adulthood and one did not

share information about their background. It should be noted that one parent

was from the United Arab Emirates (and had only spent one year in the UK

completing a Masters qualification). This did not become clear until the

interview had been arranged but the interview was completed because it shed

light on an interesting and little-researched phenomenon – the use of UK support

sites by parents living abroad. In terms of UK geographical regions, there was a

reasonable spread across many parts of England, but no one from Scotland,

Wales, the North East or the Midlands was interviewed. Interviewees lived

across a range of urban and rural settings.

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Table 4.6 Demographic details of interviewees by mode of interview chosen

Face-to-face (n=9)

Telephone (n=5)

VolP16 (n=3)

Email (n=3) Total

GenderFemale 8 5 2 1 16

Male 1 0 1 2 4

Age 0

23-34 0 1 0 0 1

35-44 4 1 1 3 9

45-54 1 3 2 0 6

55-64 3 0 0 0 3

Region resident

North West 0 3 0 1 4

South West 2 0 0 0 2

South East 3 1 1 2 7

London 2 0 0 0 2

East of England 0 1 0 0 1

Yorkshire & the Humber 2 0 1 0 3

(United Arab Emirates) 0 0 1 0 1

Occupational status

Working full-time 1 4 2 1 8

Working part-time 3 0 1 1 5

Unemployed 0 0 0 1 1

Doing housework, looking after children or other persons 4 1 0 0 5

Occupational groups

Managers, Directors & Senior Officials 0 2 2 1 5

Professional Occupations 3 1 0 1 5

Associate Professional & Technical Occupations 2 1 0 0 3

Caring, Leisure & Other Service Occupations 0 0 1 0 1

16 Voice over Internet Protocol (VoIP) interviews included Skype and Google Hangout interviews.

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Interviewees tended to be from a narrower range of occupations than the

survey respondents and to be more qualified and earn more. However, there was

still some variation in the whole group. The majority of interviewees (15) had

received some form of higher education qualification. Just over half of the

interviewees worked either full- or part-time, while five were full-time carers.

The majority of currently employed interviewees had occupations ranked in the

three top hierarchies in the Office for National Statistic’s Standard Occupational

Classification 2010 (Management, Professional and Associate Professional and

Technical Occupations), with one interviewee working in a service occupation.

The highest earning person in the household most often had a job from one of

these top three hierarchies, although in three households nobody held a job. The

household income of interviewees ranged between £12,500-20,000 per year to

£80,000 or over, but nearly half of interviewees came from households bringing

in over £70,000 per year.

The first interview took place on 14th February 2013 and the final (email)

interview was completed on 21st May 2014 (this overlapped with survey data

analysis). The length of synchronous interviews ranged from 70 minutes to a

four-and-a-half hour-long interview, which is discussed further below. The

completed asynchronous email interviews took between a month and a half to

eight months17 to complete, with between 47 and 71 emails exchanged (counting

emails from both parties).

Table 4.6 also summarises demographic differences among interviewees by

mode chosen. Just under half of interviews (including the joint interview) were

undertaken face-to-face, with the rest carried out over the phone (five), over

Skype or Google Hangout online call (three) and email (three). All but one of the

interviews (an email interview) were completed. After a long email silence and a

few attempts to contact this interviewee via email, they informed me that they

had had a nervous breakdown. Although this individual was initially keen to

continue the interview in a different mode, we ultimately agreed it would be

better to terminate the interview after a period of suspension and they gave

permission for me to analyse the partial interview. It is notable that all email

17 At a rate of about two emails a week. Some of these were reminder emails from me.

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interviews took place among people in the 35-44 year old age bracket. Efforts to

avoid a face-to-face interview bias in the South East were successful. However,

none of the interviews in the North West were carried out in person. In part this

was due to parents’ solicitousness in selecting what they thought would be

‘easier’ for me, despite my efforts to reassure them it was not problematic for me

to travel, perhaps compounded by some parents’ concerns about ‘not being of

much help’. The interview I carried out in Yorkshire and the Humber was carried

out while I was up in Manchester for a conference and it is possible the parents

may not have agreed to my travelling up for this interview if it had been solely

for the interview.

Appendix 18 provides details of interviewees’ children with Rett syndrome

and relevant details of interviewees’ Internet use for caring-related purposes. All

interviewees had one child with Rett syndrome. The majority of children were of

school age (n=15). Ten children lived at home all of the time, one part of the time

and eight lived elsewhere. The youngest child was three and the eldest was 28.

All children had received their diagnosis of Rett syndrome before the age of 11,

with nearly half receiving it at the age of two. Children had received their

diagnoses between 17 years and under a year ago, with over half having received

a diagnosis in the nine years prior to the interviews.

Almost all of the interviewees had been using the Internet for at least six years

and all rated their ability to use it as good or excellent, the highest categories.

The majority of parents had read carers’ groups or sites within the last month.

Most interviewees agreed or strongly agreed that reading such sites was

beneficial in terms of reducing a sense of isolation or solving problems, although

one parent was neutral about these benefits. Sixteen of the parents interviewed

said they had posted at some point in a carers’ group or site and most had done

so within the last month.

4.3.5 Reflection on the interview process

In one sense, I occupied the position of an outsider in my interviews, as I am not

a parent of someone with Rett syndrome and have no children of my own. Nearly

all parents asked me why I had chosen to focus on parents of people with Rett

syndrome, perhaps seeking to ascertain whether I had a personal or family

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connection. Only one interviewee asked me whether I had any children and

when I said I did not, she provided a detailed reflection on what it was like to

receive criticism of her parenting approach, rather than assuming a shared

understanding.

On the other hand, my experience of having worked with carers and

people with profound physical and learning disabilities gave me some insight

into the caring dilemmas and shared experiences of carers of children with

physical and learning disabilities. This meant that interviews could proceed

smoothly with a shared knowledge of specialist therapies, medication and

complex health problems. I also shared with all parents a familiarity with the

Internet and experience of using social media (Facebook, including closed groups

and Twitter) and some specific groups and forums (Carers UK online forum and

the PMLD Network emails). I have also read and posted on some unrelated

online peer support forums personally, which has given me a useful perspective

on the experience of being a site or group ‘user’ seeking support, information and

understanding from other people in a similar situation.

These considerations aside, rapport could vary for a number of reasons. I

noticed I generally had an easier rapport with parents closer to my own age (36

during fieldwork), noticing fewer pauses before they answered questions and a

greater volunteering of information. The rapport was fastest and strongest with

women who also had a similar level of education. I noticed that parents aged

over 50 disclosed less information about their emotional experiences or

difficulties faced, although they were initially more forthcoming in their accounts

about the negative aspects of sites.

My most challenging interview was one that lasted for four and a half

hours. Given that the expected interview length given in the information was up

to two hours, I regularly checked with the interviewee that they were happy to

continue. This interviewee drew upon detailed anecdotes to illustrate key points,

including the wider experiences of friends and family. This was the only

interview where I found it hard to contain my own emotional reaction to the

events described, which involved alleged medical neglect and the resuscitation

and near loss of her then infant daughter with Rett syndrome. Although I

ensured the key topics were covered and tried to keep the role of online support

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as a key focus, it felt inappropriate to interrupt descriptions of difficult and

traumatic experiences and I was mindful that interviews needed to offer

something in return for the generous sharing of personal and difficult

information.

The mode of interview influenced the process of building rapport before the

interview and reading of emotional responses during the interviews, but did not

affect the ability to build rapport overall. Face-to-face interviews involved a

greater lead-in and rapport-building phase. However I was most aware of time

constraints during face-to-face interviews, possibly as a result of being more

aware of non-verbal cues from interviewees that they were getting restless or

tired, when I would end the interview as soon as possible. Skype and telephone

interviews were started with very little lead-in time as they were often

undertaken in the evening and once at the weekend and the sense of having a

bounded slot of time was intensified. However, I did not notice any mode-specific

differences in level of disclosure, with some (usually younger) parents sharing

difficult and personal experiences with me in every mode.

It was difficult to judge in telephone and impossible to judge in email

interviews when parents were becoming upset. Across all interviews it was hard

to anticipate which questions would raise difficult issues. I did not press

interviewees to talk about very difficult issues (such as postings about

bereavement) if they had not raised them. Two parents cried briefly during the

interviews. In both cases I stopped the interview and allowed the interviewees to

collect themselves before giving them a choice about whether or not to continue.

Both recovered quickly and indicated they were happy to continue.

Email interviews raised a series of specific ethical and procedural dilemmas.

Although I set up an expectation of sending reminders ‘in case my email has got

lost in a busy inbox’, it was difficult to anticipate how long to leave between

reminders and how to pace the interview. When answers to questions

determined the following sets of questions I tended to list ‘(if yes)’ or ‘(if no)’

follow-up questions, which made these sections more like a questionnaire.

Interviewees tended to give brief answers at the beginning of the interview and

it took time to encourage them to be more expansive. As noted above, one email

interview took place over seven months, sometimes with gaps of one or two

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weeks between replies and this was very time-intensive as it required regularly

rereading what had already been discussed. Finally, some interviewees opted to

use their work email accounts even after I raised the possibility that these may

not be entirely private.

Nonetheless, the provision of a range of interview modes enabled me to

maximise the range and number of parents who were able to participate and

gain some useful insight into the role of online support among parents of a

children of a relatively diverse range of ages. This allowed me to explore how

experiences had changed within a wider socio-historical context, as represented

in Figure 1.1, as well as providing particularly useful data in exploring social

differentiation in this sample.

4.4 Summary of the data analysis processes

This section describes how the data was analysed and interpreted, how

limitations were overcome and how mixed method and mixed mode data was

combined.

4.4.1 Analysis and interpretation of quantitative data

As outlined in the first section, following Fries (2009) and Harrits (2011),

quantitative data was analysed in order to explore differentiation in terms of the

use of online support and information within the wider sample group of parents

of people with Rett syndrome. Given the limitations of the sampling process and

the slight biases described above, this could not be used to generalise to the

whole population of people with Rett syndrome, although there were some

similarities with the Rett UK database information in terms of range of

occupations and region of UK. As noted above, there appeared to be a slight over-

representation of carers and of women. Nonetheless, as interviewees were

drawn from this sample, survey data was still suitable to provide a contextual

backdrop against which to explore the role of interviewees’ practices, habitus

and capitals in seeking information and support related to caring for a child with

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Rett syndrome and the relationship to wider caring practices. In this sense

survey data acted like a set of contextual, detailed case studies. As noted in

Chapter 2, little is known about the online practices and social differentiation of

the use of online peer support among a wider group of parents of people with a

rare syndrome, with existing research either exploring users of a specific forum

or being based on qualitative interviews with parents of children with a range of

different syndromes. As argued in Chapters 1 and 2, comparisons across

different rare syndromes would dilute the value of such insights, as they would

include confounding extraneous factors, such as differences in caring

responsibilities and the different socio-historical backgrounds of each syndrome.

The data presented in this thesis is therefore valuable in understanding

the social differentiation and role of online support and information in the

everyday practices of a case study group of parents of people with a specific rare

syndrome, sharing a particular socio-historical context that raises shared caring

dilemmas (as discussed in Chapter 1). Statistical tests were used where possible

to test the hypotheses and strength of relationships because this is preferable to

relying on subjective, perceived magnitude in non-randomised samples

(Sapsford, 2007). I used the program SPSS to carry out all statistical analyses and

summaries of descriptive data reported in this thesis.

In mixing online and offline survey data, it is important to avoid

measurement error, where questions might be answered differently in different

modes (Dillman et al., 2009). Appendix 19 outlines the checks I undertook to

assess the comparability of survey data collected across modes, following best

practice guidance in survey methodology. These checks established that there

were no significant differences among modes that would affect data quality.

The number of survey responses (n=190) limited the complexity of

statistical tests that could be carried out. This had two impacts on the tests

carried out below. Firstly, where variables had multiple categories, this often

needed to be reduced to allow enough expected counts per cell in chi-square

tests. This may have obscured wider patterns in the data and nuances that could

be ascertained in a larger sample. Data relating to reasonable sample sizes per

comparison is reported here; for each statistical result and presentation of

descriptive data reported, a series of tests have been carried out to find the best

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fit for the data. Secondly, it was not possible to run logistic regressions or chi-

square tests with multiple predictive variables. In practice this meant that where

more than one factor influenced how online support was used it was not possible

to disentangle the independent contribution of these factors. In analysing my

quantitative data I therefore followed Fries (2009) in arguing that although

Bourdieu tended to use correspondence analysis (e.g. in Bourdieu, 1984), “other

statistical techniques […] can be used to explore the objective relations within

social space”. While Bourdieu (1984) was able to top up his initial sample for

Distinction with a larger sample to allow for this kind of analysis, this was not

possible in this population, with these sampling frames. However, as argued in

Chapters 5, 6 and 8, these limitations did not adversely affect my ability to

answer the research questions posed in this thesis.

4.4.2 Analysis and interpretation of qualitative data

As with cross-modal quantitative data, there has been some argument about the

comparability of qualitative data collected in different modes with regard to the

research process, building rapport, technical problems and expressing emotion. I

therefore reflected upon these aspects before combining data. VoIP interviews

were very like face-to-face interviews, the only difference being the lack of lead-

in time discussed above and occasional technical problems necessitating the

move (in one case) to a telephone interview. Email interview data differed in that

more people dropped out without informing me first and interviewees could edit

their responses – although there was some evidence of spontaneity in some

email interviews, with long sentences used when discussing emotive topics and

typos left uncorrected. Finally, interviewees were able to use humour and

express emotion across all modes (for instance, using punctuation and emoticons

in email interviews). As noted above, rapport appeared to be affected more by

age differences, although this did not appear to affect the level of disclosure

related to Internet practices.

A themed analysis was used to sort, code and analyse the data, informed

by the procedure detailed in Lofland and colleagues (2006). This method was

chosen because it allowed the combination of pre-existing theoretical coding

with emerging themes. While transcribing interviews I created some initial codes

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and memos about the nature of the data. Once I had imported my transcripts into

NVivo I created some initial codes reflecting key categories noted in this

emergent coding and some reflecting key thematic concerns. This initial coding

included both broad higher-level codes to organise nodes (‘social patterning

mechanisms’, ‘meshing with info-seeking and social capital resources’) and initial

descriptions of ‘constraints and limitations of online forums’ that had emerged

from transcript coding and memoing. I also included a ‘not sure yet’ category for

any other intriguing and potentially useful findings. Where parents talked

specifically about their dispositions toward the Internet, parenting and

information practices and tastes, these were coded under a set of ‘habitus’ codes.

After I had coded each transcript, I created a case study memo to capture each

parent’s account of how their use of online support and information reflected

relevant aspects of their practices and dispositions as well as existing sources of

support, and the role such information and support played in their wider caring

practices. This was done in order to avoid missing the richness of individual

experiences within a themed coding approach, and in particular to understand

the individual contexts within which the seeking of information and support

occurred, which was used to inform findings reported in Chapters 6 and 7.

As I coded my first few manuscripts I became aware of the importance of

differentiating between different sites and sources of information (online and

offline) and changes in the use of these sources over time. I therefore added

codes for each source and when they were considered useful, as well as coding

descriptions of how use had changed over time. My final set of codes were

organised under the following headings, which reflected the interplay between

the use of online and offline sources through habitus, across time and between

social groups. These were: ‘personal habitus, capitals held’, ‘use of knowledge

and connections in caring practices’, ‘fit between personal habitus and subfield

and social capital habitus’ and ‘social capital and subfield resources used’. The

final stage of my analysis involved creating a set of matrix codes to explore the

patterning of different uses and dispositions among parents of different ages,

education and income groups. Following the advice of Lofland and colleagues

(2006) I developed and refined models to explore emerging theories based on

the data.

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4.4.3 Mixing data from different methods

As noted in the first section of this chapter, the intention was to combine data to

explore different aspects of the use of online support and information and how

they may connect to wider structural differences, particularly whether they

reflected the predictions made in the first part of this chapter. This involved

establishing whether the social differentiation predicted in research questions

existed in this dataset and how they impacted on the use of online support and

information, the use of particular platforms for online peer support and the

benefits accrued from such sites. Social differentiation results are presented

within Chapter 5 to provide a context for exploring the micro aspects of use and

how these interplay with these broader structural differences in Chapters 6 and

7. However, although quantitative results are mostly presented within a single

chapter, they are drawn upon in the following chapters to draw together findings

to answer the research questions posed at the end of Chapter 3. However, it is

important to note that the mixing of data was not something that only happened

in the presentation of and reflection on the findings. The processes of analysis

described above overlapped and influenced each other. Therefore, as I was

initially analysing my survey data, I had begun my interviews and the role of age

and expertise in the use of online support sites was becoming clearer. As I wrote

up my qualitative findings and presented my initial work to colleagues, I became

aware of further statistical analyses I could carry out in order to explore

intriguing aspects of my qualitative data. This iterative process was an important

part of the shaping and refining of my thesis over time.

As argued above and in Chapter 2, the recruitment of carers is complicated given

the lack of comprehensive sampling frames. Furthermore, data on the use of

online support and information among carers has tended to be fragmented down

methodological lines, limiting the ability to explore the interplay between social

differentiation of use and everyday practices.

As was to be expected, it was not possible to draw a randomised sample

and the sample drawn may over-represent women and full-time carers.

Nonetheless, my sample does represent a wide range of occupational groups and

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carers from across the UK, as well as a range of age groups. Moreover the survey

data still enabled the qualitative data to be explored within the frame of a wider

group of contextual case studies. This allowed, as planned in the research

questions, an exploration of the interplay between structure and individual

practices of interviewees, who were drawn from the same survey sample. As

such, the findings presented in the following chapters provide an original

contribution to our understanding of the role of online support and information

in the everyday caring practices of parents of people with a rare syndrome.

Chapter 5 explores structural differences hypothesised to exist among

parents of people with a rare syndrome with regard to their use of online

support and information within wider caring practices. This is followed by

Chapter 6, which builds on these insights to explore the micro processes

involved in seeking information and advice over time and in response to other

sources of support, as well as the differential use of online peer support

subfields. Chapter 7 explores struggles for symbolic capital within online

subfields and social differentiation of the use of information gained online in

gaining symbolic capital within wider caring fields. Finally, Chapter 8

summarises how these findings have contributed to the wider literature as

summarised in Chapters 2 and 3.

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Chapter 5. Structural differences in the use of caring-

related online support among survey respondents

As discussed in Chapter 4, given the rare incidence of Rett syndrome and the lack

of a comprehensive sampling frame, it was not possible to draw a randomised

sample. Therefore, as I discussed in the previous chapter, these results reflect

survey respondents’ approaches to online support and information. However

they are still able to provide a context for the use of the Internet in the everyday

caring practices of interviewees that can be used to inform understanding of how

these parents’ social differences may constrain and influence their micro

practices as outlined in the research questions.

Although a set of hypotheses was set out in Chapter 4, a formal testing of

these is not really desirable, as this would suggest generalisability of findings.

Instead the questions underlying these hypotheses as they relate to the wider

research questions about this sample of parents will still be explored, with

reference to the specific structural differences described. As noted in Chapter 4, I

follow Sapsford’s (2007) suggestion to use statistical tests in order to move

beyond subjective impressions of data in a non-randomised sample. Chi-square

comparisons were chosen in preference to more complex statistical analyses, as

discussed in the previous chapter, as they allowed for comparisons within a

relatively small sample. The results presented in this chapter can add to the

existing literature much like qualitative case study work, highlighting potential

future avenues of research, as well as allowing for the exploration of how social

differences might influence micro practices in a case study group, bounded by

this sample.

This chapter begins with three sections that explore three of the research

questions posed at the end of Chapter 3. Section 5.1 investigates the social

differentiation of the use of online support and information in this sample.

Section 5.2 explores the social differentiation of the use of different platforms of

support among respondents. Section 5.3 describes the social differentiation of

benefits gained from online support sites. After that, section 5.4 uses available

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quantitative data to explore some of the possible connections between the social

differentiation and use of the Internet for caring that were made in Chapters 2

and 3. This includes the relevant social differentiation of digital competence,

access and experience, the use of existing sources of support and other factors

related to the age of respondent, a key differentiating factor found in this data.

This chapter closes with a summary of how parents’ position in the wider socio-

historical context of communication and medical changes may influence their use

of online support and information, using relevant statistics to outline key

differences among different age groups. This raises a series of questions that will

be explored in the following chapters, exploring how this social differentiation is

linked to the everyday practices of interviewees drawn from this sample group.

5.1 Social differentiation of the use of online support and information

among survey respondents

In Chapter 3 I summarised arguments that inequality of access to and use of the

Internet could be viewed through a Bourdieusian lens, as a reflection of unequal

economic capital, or economic capital converted into other capitals (social and

cultural). Following the findings in existing research, a set of different aspects

was explored in relation to age, income and education. These were: overall use of

the Internet; seeking online support related to caring for someone with Rett

syndrome; ever having visited an online peer support site; and ever having

posted on an online peer support site.

5.1.1 Social differentiation of the use of the Internet in this sample

As noted in Chapter 4, use of the Internet was high in this sample (91.4%,

n=169). As shown in Table 5.1, below, use reduced with age, a highly significant

difference, 2 (2) = 47.78 p< .001 with a (p <.001) Cramer’s V score of .508,

suggesting that around half of the variance in Internet use could be explained by

age of respondent.

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Table 5.1 Frequencies and percentages of use of the Internet among key

groups.

Internet use

Current user Ex-user Never used Total

Age of respondent n % n % n % n

23-44 years old 62 100.0% 0 0.0% 0 0.0% 62

45-66 years old 97 92.4% 2 1.9% 6 5.7% 105

67-89 years old 10 55.6% 2 11.1% 6 33.3% 18

Annual household income

Under £30,000 58 86.6% 1 1.5% 8 11.9% 67

£30,000 to under £60,000 56 94.9% 2 3.4% 1 1.7% 59

£60,000 and over 33 100.0% 0 0.0% 0 0.0% 33

Education

No higher education

qualification 85 85.9% 4 4.0%

1

0 10.1% 99

Holds higher education

qualification 80 80.0% 0 0.0% 2 2.4% 82

Internet use also increased slightly with household income, which was

significant, 2 (1) = 5.75 p< .05 but with a lower Cramer’s V score of .190 (p <.05),

suggesting low explanatory value. Level of Internet use did not appear to differ

much between people with and without a higher education qualification, but no

chi-squares could be carried out on this data due to low expected cell counts.

Therefore, aside from the much higher prevalence of Internet users in this

sample, the social patterning found in this sample reflected differences by

household income and age found in the Oxford Internet Survey (OxIS: Dutton and

Blank, 2013). This suggests that within this sample, parents’ use of the Internet

may not be very different from that of people in general, a finding that is in

keeping with other surveys on carers’ use of the Internet in terms of age and

suggested by employment status (Blackburn et al., 2005)18.

18 Blackburn and colleagues (2005) did not measure household income.

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The rest of this chapter explores the social differentiation of the use of

online social capital sources as sources of caring-related support.

5.1.2 Social differentiation of the use of generic online support related to

caring in this sample

There are many different sources of information and support related to Rett

syndrome and caring for a child with health and communication difficulties. This

section explores the use of generic online support, which was defined on the

questionnaire as “Online support and advice (related to parenting someone with

Rett syndrome)” that could be “seen on websites, blogs, discussion boards,

Facebook groups, chat rooms or emails from email groups”. As such it was not

exclusive to peer support messages exchanged between parents and could

include support and advice gained from professionals and organisations. Overall,

83.7 per cent of the survey respondents had read this kind of online support

(n=159). This represented 92.3 per cent of current Internet users (n=155) and

75 per cent of ex-users (n=3) but also one person who had never used the

Internet (16.7% of this group). This final finding may either reflect proxy use

through someone else – which was not what I intended to measure here - or may

have been an error in completing the survey. The use of this kind of support was

therefore tested among respondents who had ever used the Internet, to avoid

confounding results with Internet use findings. Ninety two per cent of

respondents who had used the Internet at some point had used generic online

support. It is perhaps not surprising that nearly all respondents who had used

the Internet had at some point looked for support or advice about Rett

syndrome. Table 5.2 presents frequencies and percentages of use among key

groups. There was little difference between use among income groups and chi-

square cell counts were too low to carry out a comparison. Similarly, there

appeared to be little difference between those who did or did not hold a higher

education qualification and this difference was not significant.

Table 5.2 Frequencies and percentages of use of generic online support and

advice among key respondent groups19

19 Calculated among parents who were current Internet users or had ever used

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Ever read generic

online support

and advice

Age of respondent n %

23-44 years old 60 96.8%

45-66 years old 87 90.6%

67-89 years old 9 75%

Annual household income

Under £30,000 52 91.2%

£30,000 to under £60,000 56 98.2%

£60,000 and over 32 97.0%

Education

No higher education qualification 80 92.0%

Holds higher education qualification 73 92.4%

Age of respondent was the only variable significantly related to use of

generic online support, 2 (2) = 6.69 p< .05 but with a low Cramer’s V score

of .198 (p <.05). The significance in this chi-square test was derived from the

higher (25%) than expected level of respondents who had never used generic

online support (8.2% in the whole group) in the 67 to 89-year-old age group,

with little difference between the two younger age groups. However, it should be

noted that this was based on very low numbers not using generic online support

in this group (n=3). Overall then, there was little to differentiate the use of

generic online support within this group, where the vast majority had used it at

least once, although there was a suggestion that this was less popular among

older respondents who had used the Internet (a very small group overall, n=12).

5.1.3 Social differentiation of the use of online peer support in this sample

Online peer support was defined on the questionnaire as “‘shared online support

messages’ posted by other carers. These are messages asking for or giving

support and advice related to caring for someone else. These messages are

the Internet.

123

posted on a website or in an email group so they can be seen by others using it”.

Three aspects of use were explored: ever having visited an online peer support

site; recency of visiting such a site; and ever having posted on such a site.

Seventy-three per cent of respondents who were current users of the

Internet had read an online peer support site at some point. Table 5.3 compares

results in use, recency of use, and posting across the three social groupings of

interest. As suggested by the figures, there were no significant differences in

respondents ever having visited an online peer support site by household

income and education, where percentage of use was similar across categories.

However, age of respondent was significantly and relatively strongly related to

online peer support use, 2 (4) = 32.59 p< .001 with a Cramer’s V score of .434 (p

<.001). As can be seen in Table 5.3, this represented a use by the majority of

current Internet users in the sample aged under 44, use by about two thirds of

those aged between 45 and 66 and a third of those aged 67 and over.

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Table 5.3 Frequencies and percentages of use of online peer support among

key respondent groups.

Use of online peer

support20

Ever read

Read within

last month21 Ever posted22

Age of respondent n % n % n %

23-44 years old 56 90.3% 49 87.5% 49 87.5%

45-66 years old 66 66.7% 39 60% 42 63.6%

67-89 years old 4 33.3% 2 50% 3 75%

Annual household income

Under £30,000 46 78% 35 77.8% 35 76.1%

£30,000 to under £60,000 42 72.4% 30 71.4% 32 76.2%

£60,000 and over 27 81.8% 19 70.4% 18 66.7%

Education

No higher education

qualification 64 71.9% 45 71.4% 49 75.4%

Holds higher education

qualification 59 73.8% 43 72.9% 42 72.4%

Forty-seven per cent of respondents who had ever visited an online peer

support site had done so within the last month, with the remaining responses

being spread more or less evenly among other categories (three to under six

months, six months to under a year, then yearly intervals up to three years and

over three years). Chi-squares were therefore carried out to compare use within

and over a month ago to avoid the problem of low expected cell count. Although

the proportions presented in Table 5.3 suggest more recent use by younger

parents, expected cell counts were too low to carry out a chi-square comparison.

As suggested by the similar levels among all categories within household income

20 Among current Internet users21 Among those who have ever visited an online peer support site22 Among those who have ever visited an online peer support site

125

and education groups, these variables were not significantly associated with

differences in the recency of use of online peer support in this sample.

Finally, among respondents who had ever read an online peer support

site, comparisons were made between those who had ever posted and those who

had not. In total, 125 parents in this sample had ever visited an online peer

support site. Among this group, 75.4 per cent had also ever posted on one

(n=92). Although there was a slightly lower level of posting among the wealthiest

group in Table 5.3, household income was not significantly related to ever having

posted. Level of education also did not significantly differentiate respondents

who posted from those who only read online content. Due to low expected cell

counts, it was not possible to make comparisons across age groups of

respondents or their children. Due to the low numbers in the oldest group, the

percentage of those posting in this group in Table 5.3 may be misleading.

However, as shown in Table 5.3, posting in an online support group appears to

be noticeably differentiated by age, with higher proportions of younger parents

ever having posted in one.

Table 5.4 summarises statistically significant findings reported in this

section, which are used, as argued above, to provide an indication of strength of

relationship within this sample. Age of parent was the strongest differentiator of

the use of the Internet, generic online support and online peer support. Although

comparisons across recency of use and ever having posted could not be carried

out, descriptive statistics suggest a greater recency of use and proportion of

posting within the 23 to 44-year old age group compared with the 45 to 66-year

old age group.

Overall then, findings suggested that use of the Internet for information

and support relating to caring for someone with Rett syndrome was related to

age much more than to income and education in this sample.

126

Table 5.4 Relationships between key variables and use of online support and

information among survey respondents.

Form of social differentiation Income EducationAge of

parent

Current Internet use .190* - .508***

Sources of online social capital ever used

Generic online support ns ns .198*

Online peer support ns ns .434***

Recency of use of online peer support ns ns -

Content creation on relevant sites &

groupsns ns -

‘-‘ depicts comparisons that could not be carried out due to low expected cell counts

ns = non-significant comparisons that could be carried out.

All figures given are Cramer’s V calculations. The highest result for each variable is highlighted

* p< .05, ** p < .01, *** p< .001

5.2 Brought together ‘in a seemingly fortuitous way’? Social

differentiation in the use of online support platforms among

respondents

The sections to date have brought together use of online peer support across a

range of different online platforms. As implied by the title of this section,

Bourdieu (1986) argued that people may ‘seemingly fortuitous[ly]’ find

themselves among a homogenous group in certain social spaces and it was

proposed here that certain online support spaces may be similarly differentiated.

All current users of the Internet were asked to indicate where they had

ever read shared online support messages posted by other carers. Table 5.5

shows the overall percentage of use of each platform as a place where

respondents sought information or support related to caring for their child with

Rett syndrome. It is clear that not all platforms were equally popular, with

127

Facebook Pages or Groups used more than any other platform. There were a

number of popular charitable Pages and parent-led Groups on Facebook and

they featured prominently in interview accounts. The importance of Facebook

Groups as a source of support and information was such that one interviewee,

who had previously chosen not to sign up to Facebook, was considering opening

a caring-specific account as she felt she was missing out on valuable information

and support. Website comments, email groups and blogs had been read for this

purpose by nearly half of all these respondents at some point. Discussion or

message boards had only ever been used by just over a third of these

respondents, while use of chat rooms and Twitter was much lower (18% and

12% respectively).

Table 5.6 presents the frequencies and percentages of use by age, income

and education groups and Table 5.7 presents the results of chi-square analyses

for each comparison. In terms of income and education, there were no significant

differences in use of platform, except in the use of blogs, which was

differentiated by income, 2 (3) = 8.68, p< .05, with a nearly moderate association

shown by a Cramer’s V score of .248 (p< .05). None of the individual cells in the

comparison reached significance, but as shown in Table 5.6, there is evidence of

a linear relationship, with increased use related to increased household income.

It is possible that this may reflect greater converted time available to spend time

reading sites with less of an information-finding focus, as described in Robinson

(2009).

Overall, age of parent has the strongest explanatory power among all

variables tested here. The greatest use of each platform occurred among the

youngest age groups. This did not add anything to the findings reported above,

which had established that there was greater use in (undifferentiated) online

peer support by younger parents.

128

Table 5.5 Percentage of use of each platform for support and information

related to caring for a child with Rett syndrome.

Platform% use among

Internet users

Facebook 59%

Website comments 47%

Email groups 46%

Blogs 43%

Discussion or message boards 36%

Chat rooms 18%

Twitter 12%

However the evidence of wealth-related differentiation is important

because, as will be discussed in Chapter 7, blogs were described by interviewees

as differing from other forms of online support in their ability to provide a

counter-narrative to traditional narratives about mothering children with

serious health problems and disabilities. This means that – as well as younger

parents – wealthier parents may have access to a wider range of narratives than

other groups who only access parental Facebook Groups or organisational Pages

and other kinds of online support detailed below. A notable finding was the lack

of impact of education on all, and household income on almost all, platforms.

Overall then, except for the use of blogs, the use of different platforms is

again most differentiated by age of parent. However, it should be noted that the

numbers of parents aged over 66 included in these comparisons is very low,

meaning that percentages in this group may be misleading. However, this partly

reflects lower use of the Internet in this age group, supporting the key finding

that online support and information are not used much in this group overall.

129

Table 5.6 Use of different platforms by age, income and education

Facebook Website comments Email groups Blogs

Discussion or

message boards Chat rooms Twitter

n % n % n % n % n % n % n %

Age of respondent

23-44 years old 54 87.1% 31 54.4% 34 58.6% 36 62.1% 32 53.3% 19 31.7% 15 25%

45-66 years old 45 46.4% 41 44.6% 38 41.3% 33 34.7% 27 28.4% 10 10.6% 4 4.3%

67-89 years old 2 20% 3 37.5% 3 30% 3 30.0% 1 10% 1 10% 1 10%

Annual household

income

Under £30,000 36 62.1% 26 48.1% 24 44.4% 21 38.2% 19 33.9% 10 18.5% 5 9.4%

£30,000 to under

£60,000 34 60.7% 22 44.9% 24 46.2% 25 47.2% 22 40.7% 9 16.4% 7 13.0%

£60,000 and over 24 72.7% 19 59.4% 19 57.6% 23 69.7% 13 39.4% 10 30.3% 7 21.2%

Education

No higher education

qualification 50 58.8% 36 45% 38 47.5% 32 39.0% 29 34.9% 12 14.6% 7 8.8%

Has higher education

qualification 49 61.3% 37 50.7% 36 47.4% 39 50.6% 31 39.7% 17 21.8% 12 15.4%

130

Table 5.7 Social differentiation of the use of different online platforms by

income, education and age

‘-‘ depicts comparisons that could not be carried out due to low expected cell counts

ns = non-significant comparisons that could be carried out.

All figures given are Cramer’s V calculations. The highest result for each variable is highlighted

* p< .05, ** p < .01, *** p< .001

A key limitation of the data collected is that it can only tell us whether

someone has ever visited one of these kinds of sites, so we cannot tell whether

this is something that has happened recently or in the past. This is something

that will be teased out in the following chapters, which focus on how use is

embedded in everyday practices.

5.3 Unequal profits or unappealing goods? The social differentiation

of the benefits gained from online peer support by survey

respondents

This section explores whether benefits gained from online support sources were

socially differentiated. This includes results of a general rating of the utility of

generic online support as well as the social capital-style benefits of online peer

Form of social differentiation Income EducationAge of

parent

Different online platforms

Facebook ns ns .536***

Website comments ns ns .162*

Email groups ns ns .250*

Blogs .248* ns .278*

Discussion or message boards ns ns .352***

Chat rooms ns ns .274*

Twitter ns ns .393***

131

support. The latter were based on questions reflecting Ferlander’s (2007)

definitions of the kinds of support that online sources of support could feasibly

provide (emotional support, informational support and instrumental support:

see Chapters 3 and 4).

As discussed in Chapter 3, according to Bourdieu’s theory of capitals, we

would expect some groups to be able to leverage greater benefits from groups

where they can both convince others that they ‘belong’ and where those others

possess capitals or other resources they require. This requires having some

knowledge about whether different sources of online support (and particularly

online peer support) can offer benefits that are meaningful and beneficial for

particular groups of parents.

Existing research reviewed in Chapter 2 suggests that generic online

support and peer online support may differ in terms of what they may offer to

particular groups. Thus gaining benefits from health information more widely

appears to be differentiated by education, while the use of online peer support is

more differentiated by age and occupation. This may reflect the differing levels of

useful ‘goods’ available through lay information to certain groups of parents,

particularly those who can gain useful benefits from generic support that may

not come from peers and older parents, who may not have much to gain from

online peer support, particularly if, as in this sample of respondents, the majority

of users are younger and likely to have less relevant information and advice

relating to their older child’s needs. This could explain why Leonard and

colleagues' (2004) study of RettNet subscribers found that younger parents and

non-professional and allied groups rated this group as more beneficial. Younger

parents would be more likely to have younger children and a relatively low base

of knowledge related to caring for a child with Rett syndrome. It is possible that

professional and allied groups were able to make greater use of wider sources of

information, as suggested by differences in income and education in the Oxford

Internet Survey (OxIS). Therefore, in addition to income, education and age,

occupational level was also explored among this sample in terms of benefits

gained from online peer support.

132

5.3.1 Social differentiation of the perceived benefits of generic online support in this sampleThere were low numbers of respondents rating generic online support as ‘not at

all important’, which caused problems with low expected cell counts in chi-

square comparisons. Therefore simplified importance ratings were used to test

these hypotheses. These compared ‘not important’ (combining ratings of ‘not at

all important’ and ‘not so important’) with ‘important to some degree

(combining ‘important’, ‘very important’ and ‘essential’ ratings) among

respondents who had used each source. This does represent a skew toward

positive ratings but, given the low numbers involved, was unavoidable.

Among respondents who had ever used it, 63.2 per cent rated generic

online as important to some degree. This makes this form of support of lower

importance than offline sources of support within the sample as a whole, where

local group support was rated as important by 73 per cent of respondents who

had used it, telephone support as beneficial by 81 per cent of users and support

from local health professionals as important to 90 per cent of respondents who

had used it.

Table 5.8 presents the rated importance of generic online support by

income, education and age groups and Table 5.9 shows results of chi-square

comparisons. There is a slight decrease in the proportion of parents rating

generic online support as important to some degree as income increased, but

this was not significant. Rating by education level was not significant and

proportions were about equal across respondents with and without a higher

education qualification. Age, however, was significantly related to the rating of

generic online support, with younger parents more likely to rate it as important

and a reduced proportion of importance across each older age category.

133

Table 5.8 Rated generic online support as ‘important’, ‘very important’ or

‘essential’ by age, income and education groups

Rated as important

to some degree

Age of respondent n %

23-44 years old 46 78.0%

45-66 years old 48 55.8%

67-89 years old 3 30%

Annual household income

Under £30,000 38 73.1%

£30,000 to under £60,000 36 64.3%

£60,000 and over 18 56.3%

Education

No higher education qualification 50 62.5%

Holds higher education qualification 46 63.9%

Table 5.9 Social differentiation of the use of different online platforms by

income, education and age

IncomeEducatio

n

Age of

parent

Rated importance of generic

online supportns ns .317**

** p< .01

134

These results are interesting in that they do not support the idea that more

educated and wealthier parents may benefit disproportionately from general

online support. However, ‘generic online support’23 may differ from information

gathered online, reflecting advice and support seeking rather than information

seeking. However, the differences in age do support the idea that online support

is a more valuable ‘good’ to younger parents, who may have younger children,

diagnosed more recently, and therefore possess less knowledge about Rett

syndrome than older parents. These relationships are explored in section 5.4.

5.3.2 Social differentiation of the perceived benefits of online peer support in this sampleGiven sample-size-related difficulties with carrying out chi-square tests, the

original variables (five-point Likert scales) were reduced to fewer categories to

aid analysis with a limited sample. The new categories were ‘agree’ ‘neither

agree nor disagree’ and ‘disagree’, with the former and latter categories

subsuming the ‘agree strongly’ and ‘disagree strongly’ categories. However, most

of these comparisons could not be carried out, with a few (non-significant)

exceptions. Therefore new categorisation was used, bringing together negative

and neutral responses and comparing them with positive responses and each

relationship was tested again. Table 5.10 presents the frequencies and

percentages of agreement with the benefits of reading online peer support by

age, income, education and occupation. Table 5.11 presents results depicting the

strength of these relationships.

23 Defined on the survey as, “Online support and advice (related to parenting someone with Rett syndrome)” that could be “seen on websites, blogs, discussion boards, Facebook groups, chat rooms or emails from email groups”.

135

Table 5.10 Benefits experienced from online peer support by age, income,

education and occupation

Agree or strongly agree that

reading about other parents’

experience has made me feel less

alone

Agree or strongly

agree that reading

others’ experiences has

helped me solve

problems

n % n %

Age of respondent

23-44 years old 52 92.9% 42 75%

45-66 years old 51 77.3% 47 72.3%

67-89 years old 3 75% 1 25%

Annual household income

Under £30,000 22 81.5% 15 55.6%

£30,000 to under £60,000 36 85.7% 32 78.0%

£60,000 and over 26 96.3% 19 70.4%

Education

Does not hold a higher education qualification 50 78.1% 49 76.6%

Holds a higher education qualification 54 91.5% 39 67.2%

Occupational group24

Full-time carer 40 80% 36 73.5%

Managers, Directors & Senior Officials 7 100% 4 57.1%

Professional Occupations 21 87.5% 19 79.2%

Associated Professional & Technical

Occupations 9 100% 6 66.7%

Administrative & Secretarial Occupations 5 100% 5 100%

Skilled Trades Occupations 1 100% 1 100%

Caring, Leisure & Other Service Occupations 12 92.3% 9 69.2%

Sales & Customer Service Occupations 1 100% 1 100%

Elementary Occupations 1 100% 0 0%

24 Among parents who were not retired or unemployed

136

Table 5.11 Social differentiation of the benefits of reading online peer support

sites and groups

Househol

d income Education Age Occupation25

Emotional support: reading others'

experiences makes me feel less alone

Agreement, neutral or disagreement - - - -

Agreement versus other categories (neutral

or disagree) ns .185* - -

Informational support: reading others'

experiences helps me to solve problems

Agreement, neutral or disagreement ns - - -

Agreement versus other categories (neutral

or disagree) ns ns - ns

‘-‘ depicts comparisons that could not be carried out due to low expected cell counts

ns = non-significant comparisons that could be carried out.

All figures given are Cramer’s V calculations, described in the text.

* p< .05

** p < .01

Survey respondents who used online peer support were asked how much

they agreed with four statements. The first statement was, ‘Reading about other

parents’ experiences has made me feel less alone’. As will be remembered from

Chapter 3, this emotional support question (after Ferlander, 2007) was added to

take account of other benefits of online peer support that were not adequately

covered by Bourdieu’s concepts of capitals, but were thought to be relevant to

this group. However, as argued in Chapter 3, this variable could also be

considered as a marker of belonging, or being among ‘like others’. This difference

– between people in a similar situation and similar people – is discussed in

Chapter 6, where parents made a distinction over time between these two states,

sometimes making explicit reference to class.

In the sample as a whole there was a high level of agreement (84%) with

this statement, while only 5% disagreed or strongly disagreed. As can be seen

25 Professional, clerical and management roles versus other roles (after Leonard and colleagues’ [2004] findings).

137

from Table 5.10, there were high levels of agreement with this statement across

all categories of variables, the lowest being among the small group of parents

aged 67 and over (75%, n=3) who had ever read an online peer support site.

There were slight variations within variables, most notably in age and education,

where the youngest and most educated parents rated the emotional support

variable higher than the other two groups. Table 5.11 shows that this difference

was only significant in terms of education level, (1) = 4.22 p< .05 with a low

Cramer’s V of .185 (p <.05), reflecting higher agreement among parents with a

higher education qualification, although cells did not reach significance. The age

and occupational comparisons could not be made, and difference by income level

were not significant.

All survey respondents who had ever read online peer support were

asked how much they agreed with the statement: ‘Information and advice in

shared online support messages has helped me to solve problems.’ Seventy-two

per cent agreed or strongly agreed with this statement, with only 6.4 per cent

disagreeing or strongly disagreeing. Tables 5.10 and 5.11 showed that a much

lower percentage of the oldest group agreed with this statement, although this

was based on a single response. As a result, a chi-square comparison was not

possible. While a smaller proportion of parents with household income of under

£30,000 per year agreed that online peer support had helped them solve

problems, this difference was not significant. Occupation was not significantly

related to a stronger level of rated utility, unlike in Leonard and colleagues’

(2004) findings, although the lowest proportion of agreement was among

Managers, Directors and Senior Officials (57.1%).

138

Survey respondents who had communicated with at least one person

exclusively through an online peer support group (65.3% of the sample, n=62)

were asked to rate how much they agreed with a series of statements about the

benefits they had gained from this communication. None of the parents in the

oldest age group, and the sales and customer service occupational group had

communicated solely with another parent exclusively online. Tables 5.12 and

5.13 summarise the responses to these questions by relevant social groupings.

As before, these calculations were based on comparisons between those who

strongly agreed and agreed versus those who were neutral, disagreed or strongly

disagreed. Many of these comparisons could not be carried out due to low counts

in cells, and where they could be carried out, none were significant. Numbers by

occupation were particularly small, making interpretation difficult.

Overall, 65 per cent of this group agreed or strongly agreed that ‘When I

felt lonely, there was at least one person I could talk to’ (emotional support).

There was higher agreement with this statement across the younger age group

as compared to the middle age group, but these differences did not reach

significance. This benefit did not appear to be differentiated by income or

education and was not significant. It was not possible to carry out a chi-square

comparison across occupational groups.

Seventy five per cent of the wider group communicating with some carers

exclusively online agreed that ‘There was at least one person I could turn to for

advice about making very important decisions’ (informational support). The

pattern of findings was similar, with a greater level of agreement among the

youngest age group and little differentiation in income and education. All chi

comparisons could be carried out, but none reached significance.

The greatest level of agreement among this group was with ‘They have

given me information and advice that has helped me to solve problems’

(informational support), where 80.6% of this group agreed or strongly agreed

with this statement. There was less difference between the two age groups on

this question while a greater proportion of the wealthier group agreed with this

statement than other groups. It was only possible to carry out a chi-square

comparison for education, but this found no significant differences between

groups.

139

Agreement with

‘When I felt lonely,

there was at least

one person I could

talk to’

Agreement with ‘There

was at least one person I

could turn to for advice

about making very

important decisions’

Agreement with ‘They

have given me

information and advice

that has helped me to

solve problems’

Agreement with

‘They would help

me fight an

injustice’

n % n % n % n %

Age of respondent

23-44 years old 30 78.9% 28 73.7% 32 84.2% 24 63.2%

45-66 years old 13 56.5% 11 50% 18 75.0% 10 45.5%

67-89 years old n/a n/a n/a n/a n/a n/a n/a n/a

Annual household income

Under £30,000 15 65.2% 15 68.2% 18 78.3% 9 40.9%

£30,000 to under £60,000 19 79.2% 16 66.7% 19 76.0% 16 66.7%

£60,000 and over 6 60% 6 60% 9 90% 6 60%

Education

Does not hold a higher education

qualification 23 69.7% 22 68.8% 28 82.4% 19 59.4%

Holds a higher education qualification 19 70.4% 17 63% 21 77.8% 15 55.6%

Table 5.12 Benefits experienced from contact with another carer on an online support site by age, income and education

140

‘n/a’ No carers had communicated with another carer solely online in this group

141

Agreement with ‘When I felt

lonely, there was at least

one person I could talk to’

Agreement with

‘There was at least

one person I could

turn to for advice

about making very

important decisions’

Agreement with ‘They

have given me

information and advice

that has helped me to

solve problems’

Agreement with ‘They

would help me fight an

injustice’

n % n % n % n %

Table 5.13 Benefits experienced from contact with another carer on an online support site by occupation26

Full-time carer 18 69.2% 18 69.2% 24 88.9% 15 57.7%

Managers, Directors & Senior Officials 2 100% 1 50% 2 100% 2 100%

Professional Occupations 5 55.6% 7 77.8% 7 77.8% 5 55.6%

Associated Professional & Technical

Occupations 6 100% 5 83.3% 5 83.3% 4 66.7%

Administrative & Secretarial Occupations 5 100% 2 40.0% 3 60% 3 60%

Skilled Trades Occupations - - - - - - - -

Caring, Leisure & Other Service

Occupations 6 75% 4 50% 5 62.5% 3 42.9%

Sales & Customer Service Occupations n/a n/a n/a n/a n/a n/a n/a n/a

Elementary Occupations 0 0% - - 0 0% 0 0%

26 Among respondents who were not retired.

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The final statement was, ‘They would help me fight an injustice’ (instrumental

support). Fewer parents (56.7%) within this subgroup agreed or strongly agreed

with this statement overall compared with other statements. A greater

proportion of younger and wealthier parents agreed with this statement. All chi-

square comparisons could be carried out, but none were significant.

The low numbers in this subgroup hampered these final comparisons.

However, in terms of age, this should be interpreted within the wider picture

presented so far within this chapter. A lower proportion of older parents had

ever used the Internet, leaving only small numbers of older parents who were

online and who had ever read online peer support or posted in an online support

group. Finally, of those who had posted, none had communicated with another

carer solely online. This is suggestive of different online practices to younger

parents, which will be explored in the next section.

5.4 Exploring the role of age: time, child’s needs, alternative sources

of support and digital differentiation

Table 5.14 summarises the significant findings reported so far in this chapter. It

is striking that use of online information and support in this sample is most

strongly differentiated by parents’ age, with only minor contributions from

income and education, although it is possible that income differences may have

been obscured by a lack of detail about respondents earning under £30,000 per

year. As will be recalled, this reflects the greater use of online support, across a

range of platforms, and greater benefits reported by younger parents, although

the latter could not be tested significantly. The other significant findings in

income and education suggest relatively weak relationships, except for the

greater use of blogs among wealthier parents, which is of a similar significance

level to the age differentiation. The remainder of this chapter explores a number

of potential explanations for these differences that are suggested by the

literature reviewed in Chapters 2 and 3 and by Bourdieu’s concepts. These are:

differences in digital literacy and Internet access; access to alternative sources of

143

support; age of child and associated information and support needs; and time

since diagnosis. This section therefore begins by testing the relationships

between these variables and parental age. It goes on to compare the relative

strength of these competing explanations for the findings. This chapter ends with

a summary of how age relates to these wider variables as well as socio-historical

and technological changes over time, which will be explored through parents’

own accounts in the following two chapters.

Table 5.14 Social differentiation of online support use within income,

education, age of parent and occupational groupings.

p < .05; ** p < .01; *** p < .001; ns = not significant; ‘-‘ = comparison could not be

carried out.

Form of social differentiation Income Education

Age of

parent Occupation

Current Internet use .190* - .508*** n/a

Sources of online social capital ever used

Generic online support ns ns .198* n/a

Online peer support ns ns .434*** n/a

Recency of use of online peer support ns ns - n/a

Content creation on relevant sites & groups ns ns - n/a

Different online platforms

Facebook ns ns .536*** n/a

Website comments ns ns .162* n/a

Email groups ns ns .250* n/a

Blogs .248* ns .278* n/a

Discussion or message boards ns ns .352*** n/a

Chat rooms ns ns .274* n/a

Twitter ns ns .393*** n/a

Online peer support benefits

Emotional support (from reading) ns .185* - -

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5.4.1 Relationship between age of respondent and key variables of interest

Respondent’s age is related to and may function as a proxy for, a number of other

important variables that were explored in Chapters 2 and 3 in relation to the

social differentiation of the use of the Internet. These include factors likely to

affect possession of social capital, the likelihood of finding worthwhile ‘goods’ in

online support settings and differences in Internet practices. Tables 5.15 and

5.16 summarise these differences by the three main age groups discussed above.

As can be seen in Table 5.16, age of parent was highly positively

correlated with the age of a child with Rett syndrome and time since diagnosis.

Time since diagnosis was also highly positively correlated with child’s age. Both

age of child and time since diagnosis are likely to be associated with differences

in information needs. For instance, information about diagnosis and prognosis

(among the benefits of online support groups identified in Chapter 2) may be

most sought after when a child is suspected of having a developmental problem

or has just received a diagnosis. Time since diagnosis may also be associated

with a greater level of access to different sources of social capital and

information (along with child’s age, when diagnosis is late). Having access to

existing alternative sources of (offline) social capital was identified by

Gundersen (2011) as one possible reason why some parents did not engage with

online peer support.

Although access to social capital was not quantified here, use of two

offline sources of support was measured. Telephone support was significantly

related to age, although the group making the most use of this support were aged

between 46 and 66 years old, so this cannot provide a possible explanation of

why use is much lower in the eldest group. Use of local group support was not

significantly associated with age. However, sources of support and information

can be numerous, and include family, online sources of information that are not

provided by peers and support provided by peers offline. These are explored in

detail in the following chapter through interviewees’ accounts.

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Table 5.15 Descriptive statistics on key variables by age group of respondent

Key differentiating variables

23-44 years

old (n=62)

45-66 years old

(n=105)

67-89 years old

(n=18)

Details of only or elder child with Rett

syndrome

Mean age of child 9 years old 23 years old 40 years old

Range of children's ages 2-18 years old 3-42 years old 16-50 years old

Average age of child at diagnosis 3 years old 6 years old 19 years old

Range of children's ages at diagnosis 1-10 years old 1-28 years old 2-39 years old

Average years since child was diagnosed 5 years ago 16 years ago 21 years ago

Range of years when child was diagnosed 1997-2013 1981-2012 1982-2004

Internet use

% current Internet users 100.0% 92.4% 55.6%

Mean years using Internet 11 years 10 years 12 years

Range of years using Internet 3-20 years 1-25 years 2-30 years

% with mobile access to the Internet 85.2% 51.1% 25.0%

% rate self as 'good' or 'excellent' at using

Internet 90.3% 65.6% 60.0%

Use of sources of social capital

% ever used telephone support 71.0% 89.3% 80.0%

% ever used local group support 77.4% 83.0% 69.2%

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Table 5.16 Strength of relationship between age of respondent and key

variables of interest

Age of respondent

Age of child .88***

Years since diagnosis .78***

Years using the Internet .25*

Mobile access to the Internet .43***

Self-rated ability to use the Internet -.32a***

Use of telephone support .252**

Ever used local group support ns

a. Depicts a correlation coefficient rather than a Cramer’s V calculation

* p< .05, ** p< .01, *** p< .001

Finally, as shown in Chapter 2, Internet use is differentiated by differences in

access, technical ability and time spent online. As demonstrated in Chapter 3,

these relate to digital inequalities that - it has been argued, following Bourdieu -

may contribute to the reproduction of existing social inequalities. As shown in

Table 5.16, age of respondent was significantly related to years using the

Internet, although mean number of years did not appear to vary greatly in Table

5.15. However, this may reflect a tendency, noted among interviewees, of

respondents finding it difficult to recall years of use, often finding they had

underestimated or overestimated once we started discussing Internet use in

terms of their caring history. Age of respondent was strongly significantly related

to having mobile access to the Internet, with mobile access reducing with

respondent’s age group (see Table 5.15). Age of respondent was also negatively

and significantly associated with self-rated ability to use the Internet, indicating

that as parents’ age increased, self-rated ability to use the Internet decreased.

However, Table 5.15 shows that the main difference in high self-rated ability was

between the youngest group and both older groups.

Overall then, age of respondent in this sample is related to factors that the

literature reviewed in Chapters 2 and 3 suggested are related to differential use

147

of the Internet, but may also reflect differences in information needs. These

factors are age of child, years since diagnosis, years using the Internet, mobile

access and self-rated ability to use the Internet. While a potential difference in

access to alternative sources of social capital or support was found (in this case,

telephone support), it did not explain the lower uptake of online resources

among the older group, so interview data will be used to explore this explanation

in more detail. The impact of these factors on the use of the Internet and benefits

gained from online support is briefly explored next in comparison to the impact

of respondent’s age.

5.4.2 Exploring the impact of age-related differences in differential use of

the Internet and differing information needs

Tables 5.17 and 5.18 summarise a series of chi-squares undertaken to explore

the relative influence of the factors identified above as they relate to the research

questions. Due to problems with multicollinearity and the small sample, it was

not advisable to carry out a comparative analysis including all variables (for

instance, a logistic regression) to assess the relative strength of each variable

(Field, 2009). Instead I discuss the relative strength of relationships in providing

a possible explanation for the differentiation of the use of online support and

information in this sample.

For each aspect of online support and information use, the strongest

relationship is highlighted in yellow in Table 5.17. This shows that in all cases,

the time-related variables (age of parent, age of child and years since diagnosis)

provide the greatest explanation for variation in use of the Internet and online

support in this sample. Tables 5.19 and 5.20 provide frequencies of use where

age of child or years since diagnosis provides the strongest differentiation of use

and benefits of online support and information. These tables are referred to in

the following subsections, which summarise the contribution of different factors

to each aspect of use.

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Table 5.17 Social differentiation of use of the Internet and online sources of information and support by key variables

‘-‘ depicts comparisons that could not be carried out due to low expected cell counts

ns = non-significant comparisons that could be carried out.

All figures given are Cramer’s V calculations. The highest result for each variable is highlighted

* p< .05, ** p < .01, *** p< .001

Form of social differentiation Income Education

Age of

parent

Age of

child

Years

since

diagnosis

Years

using

Internet

Mobile

access

Self-

rated

ability to

use

Internet

Current Internet use .190* - .508*** - - n/a n/a n/a

Sources of online social capital ever used

Generic online support ns ns .198* - - - - -

Online peer support ns ns .434*** .457*** .397*** ns .283*** .226**

Recency of use of online peer support ns ns - .232** .375** ns .258** .218*

Content creation on relevant sites &

groups ns ns - - .343** ns ns ns

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Use of the Internet and online sources of support

Table 5.17 shows differences in use of the Internet to find information and

support relating to Rett syndrome. It was not possible to carry out comparisons

over categories of child’s age and years since diagnosis to explore their impact

alongside the impact of respondents’ age on use of the Internet. However, the

strong relationship of age of respondent with Internet use mirrors data cited in

Chapter 2 where use of the Internet reduces with age.

Similarly, it was also not possible to make comparisons over the other

variables into the use of generic online support. However, in terms of the use of

online peer support, these results show that age of child is most important in

differentiating use among respondents. As shown in Table 5.19, this represented

a greater use among parents of school-age children, which dropped in

subsequent adult groupings. Similarly, increased years since diagnosis was

associated with reduction in use, with 91 per cent use in the first nine years,

dropping to 68 per cent and lower in subsequent categories.

Years since diagnosis most strongly differentiated the recency of use of

online peer support sites. This relationship was not linear, with recency of use

increasing among parents of children diagnosed over 20-24 years ago. This could

be explained by the dynamic use of online support in relation to the changing

needs of parents, which is described in interview data analysis in the next

chapter. However, as can be seen in Table 5.20, numbers in this category were

relatively low, so percentage comparisons are somewhat misleading. Age of child

was also significantly differentiating, with fewer parents of older children having

visited an online peer support site within the last month. Other factors

influencing recency of use that may overlap with one another, included having

mobile access, where having access was related to having visited an online peer

support site within the last month. Similarly, lower self-rated ability to use the

Internet was associated with a lower level of recent use.

150

Table 5.18 Social differentiation of use of different online platforms and benefits gained from online support sites and groups

‘-‘

depicts comparisons that could not be carried out due to low expected cell counts; ns = non-significant comparisons that could be carried out.

All figures given are Cramer’s V calculations. The highest result for each variable is highlighted * p< .05, ** p < .01, *** p< .001

Form of social differentiation Income Education

Age of

parent Occupation

Age of

child

Years

since

diagnosis

Years

using

Internet

Mobile

access

Self-rated

ability to use

Internet

Different online platforms

Facebook ns ns .536*** n/a .457*** .460*** ns .343*** .230**

Website comments ns ns .162* n/a .291* ns .18* .182* ns

Email groups ns ns .250* n/a .321** .250* ns .226** .245**

Blogs .248* ns .278* n/a .370*** .336** .28** .25** .178*

Discussion or message boards ns ns .352*** n/a .310** .281** - .313*** .169*

Chat rooms ns ns .274* n/a ns ns ns .234** ns

Twitter ns ns .393*** n/a .246* .219* .27** .297*** -

Benefits gained from online support

Importance of generic online

support ns ns .317** n/a .197* .280** .199* .251** ns

Online peer support benefits

Emotional support (reading) ns .185* - - - .252* ns - -

Informational support (reading) ns ns - ns ns .352** ns ns ns

Someone could talk to if felt alone ns ns ns - .395** ns ns - ns

151

Table 5.19 Frequencies of use by age of child, where age of child is most strongly associated with differentiation

Online peer support use

Ever read relevant website comments

Ever read relevant email groups

Ever read relevant blogs

Someone could talk to if felt alone (carers online only)

n % n % n % n % n %

Preschool age (0-4) 13 100.0% 7 58.3% 3 25.0% 6 54.5% 6 100.0%

Primary school age (5-10) 32 94.1% 15 53.6% 17 58.8% 20 60.6% 19 86.4%

Secondary school age (11-16) 44 100.0% 10 27.0% 28 65.1% 27 62.8% 11 61.1%

Young adulthood (17-25) 32 88.9% 7 33.3% 17 47.2% 10 27.8% 5 50.0%

26-38 years old 31 81.6% 4 23.5% 9 26.5% 8 22.2% 2 40.0%

39-51 years old 7 63.6% 0 0.0% 1 20.0% 1 20.0% n/a n/a‘n/a’ no parents in this category had communicated with another carer solely online.

152

Table 5.20 Frequencies of use by years since diagnosis, where years since

diagnosis are most strongly associated with differentiation

Recency of use of

online peer support

Content creation

on relevant sites

and groups

Emotional

support

(from

reading)

Informational

support (from

reading)

n % n % n % n %

0-4 years 29 90.6% 26 81.3% 31 96.9% 23 71.9%

5-9 years 22 71.0% 28 90.3% 24 77.4% 23 76.7%

10-14 years 16 66.7% 18 72.0% 21 87.5% 18 75.0%

15-19 years 12 66.7% 9 52.9% 15 83.3% 17 94.4%

20-24 years 8 80.0% 6 54.5% 10 90.9% 5 45.5%

25-29 years 2 22.2% 6 66.7% 4 44.4% 3 33.3%

Years since diagnosis most strongly differentiated respondents ever having

posted on an online peer support site. However, as shown in Table 5.20, this was

not a linear relationship, with a slight rise in ever having posted among parents

of children who received a diagnosis between 25 and 29 years ago. Again this

represents a low number of respondents, so percentages are slightly misleading.

However, it is possible this may reflect differences in posting for advice or

offering advice, which is explored in the following chapters. Interestingly, years

using the Internet, having mobile access and self-rated ability to use the Internet

did not distinguish between parents who had or had not ever posted online.

However, this comparison is between respondents who had ever used online

peer support, where competence was generally higher than in the rest of the

sample (see Table 5.17).

Differential use of online platforms for information and support

As can be seen in the tables above, use of different platforms was associated with

multiple variables related to both time and digital competence, suggesting that

both were important in influencing access (although, of course, with possible

overlaps where these variables are related to one another). However, use of

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these different platforms was still most strongly differentiated by age of child or

of respondent. The relationship with age of child was interesting in that there

was the highest proportion of readers of email groups and blogs among parents

of secondary school age children, with higher reading of website comments

among parents of pre-school age. This could reflect a number of changing aspects

of information seeking and available resources over different carers’ lives. This

could include differences in different media available at different times, the

greater accumulation of useful sources of information and the interplay of

changing needs with all of the above. The interview data explored over the next

two chapters explores these interleaving aspects in greater depth.

Those without mobile access to the Internet were significantly less likely

to have ever used each of these platforms. Having a lower ability to use the

Internet was also associated with lower use of Facebook, email groups, blogs and

discussion or message boards. However, it did not differentiate use of chat rooms

nor of website comments. Greater years using the Internet were significantly

associated with greater use of website comments, blogs and Twitter. It was not

possible to carry out comparisons on the impact of mobile use on Twitter or of

years of use on reading discussion or message boards. However, descriptive

results suggested that use of most platforms was differentiated by skill in using

the Internet and ease of access through mobile devices.

Differential benefits gained from online support sources

The rating of the importance of generic online support was most strongly

differentiated by the age of the respondent. However, years since diagnosis - and

to a lesser extent age of child - were also associated with differences in rated

importance. A higher proportion of younger parents, with younger children,

particularly those who had been diagnosed within the last seven years, rated

generic online support as important than other groups did, with rated

importance lowering over time and age of child. It was also interesting to note

that the rated importance of the use of generic online support varies by years

using the Internet and mobile access, which may reflect experience in seeking

information and ease of access, although self-rated ability to use the Internet was

154

not related to this variable, suggesting that finding generic online support is not

something requiring strong technical skills.

By comparison, the benefits experienced from online peer support

sources were not differentiated (or could not be tested) by years using the

Internet, having mobile access or ability to use the Internet. Instead, emotional

support and informational support were most strongly associated with years

since diagnosis. However, as shown in Table 5.20, these were not linear

relationships. Although the lowest proportion reporting experiencing these

benefits were the group with children diagnosed more than 25 years ago, high

proportions of parents of people diagnosed 15 to 19 years ago reported gaining

informational support from online peer support sites, or emotional support

among parents of people diagnosed between 20 to 24 years ago. This may reflect

changes in child’s needs or existing knowledge about Rett syndrome over time

(for instance, the development of greater genetic understanding of the syndrome

in the last 15 years). A sense of not feeling alone when reading online peer

support could cross age groups of interviewees, for reasons explored in more

detail in Chapter 7. In terms of feeling there was someone one could talk to if one

felt alone (emotional support measure for parents interacting with some carers

exclusively online), this was only differentiated by age of child, with a higher

proportion of parents of younger children more likely to agree. All other

relationships were not significant, and a comparison by occupational groups

could not be carried out.

5.5 Interpreting the structural constraints on the use of online

support and information among survey respondents

This chapter set out to provide a context for understanding the use of the

Internet in the everyday caring practices of interviewees. As such, it outlined

how social differences among survey respondents were associated with

differential use of the Internet and online support, and differences in benefits

gleaned from these sources. As noted in this chapter and the end of Chapter 4,

the relatively small sample, due to the rare nature of Rett syndrome and lack of a

155

comprehensive sampling frame, limited the kinds of analyses that could be

carried out. Nonetheless, the data presented here provides an original

contribution to existing data on the use of the Internet for support and

information among parents of people with a rare syndrome. As noted in Chapter

2, existing quantitative data has either tended to explore use of the Internet

among groups of carers of people with very different needs and length of time

spent caring, or to focus on users of a specific forum. This research instead

provides a snapshot of the use of the Internet among a large case study group of

parents of people with Rett syndrome. As noted in Chapter 4, this sample is likely

to under-represent men and over-represent Internet users and full-time carers.

However, as also argued in that chapter, this may more accurately reflect how

online support is used to inform the caring practices within a household.

However, it does for the first time allow for the exploration of how structural

differences in use among a wider pool of parents of people with a rare syndrome

may constrain or influence the everyday uses of the Internet at a micro level. As

such, this research can address the key criticisms of the literature outlined in

Chapters 2 and 3, by presenting a coherent exploration of how structural

differences interact with everyday caring and information-seeking practices

among a case study group of parents of people with a rare syndrome. By

exploring both aspects in a single piece of research, with parents drawn from the

same sample group, it is possible to build a picture of how practices are related

to structural differences without being deterministic or ignoring the impact of

wider differences in how the Internet is used.

The picture presented by the data here shows that among survey

respondents, use of the Internet was similarly socially patterned as in the

general population, with greater use among wealthier and younger groups27. The

use of generic sources of online support and advice was high within the sample,

with 83.7 per cent having ever used it. However, a striking difference emerged

between these findings and digital inequalities data in the wider population and

among carers, as summarised in Chapter 2. This was the low impact of income

and education on the use of online information and support. It is possible, in

terms of impact, that this may reflect the high proportion of carers within this

27 The impact of education could not be explored due to low cell counts.

156

sample but this still serves to demonstrate that among this group of respondents,

different contextual forces are at play.

As noted in Chapter 2, data on the use of online peer support is limited

and, like the data here, cannot be used to generalise to a wider population of

carers or of people with a rare syndrome. The data collected on carers

(summarised in Chapter 2) has suggested that higher education and occupational

status group is associated with greater use among these parents. However, this

was not the case among this group of respondents, where use was highest among

younger parents and parents of school age children, variables that were highly

correlated. Years since diagnosis were also related to use, but not in a clearly

linear way, with high use among parents of children diagnosed 20 to 24 years

ago. As explored in Chapter 6, some parents of children diagnosed a number of

years ago were using online peer support sites as a way of keeping informed

about recent research advances and it is argued in that chapter, as within this

whole thesis, that differential use of the Internet needs to be considered within

the wider social, technical and research changes within which they occur.

Similarly, while the recency of use of online peer support sites did not reflect a

linear relationship with years since diagnosis, it was associated with lower use

among older parents. This may reflect differences in Internet practices among

older parents and the use of different sources of support, while also reflecting

the existence of a group of parents of children diagnosed many years ago who

are seeking up-to-date information on advances in research and potential

treatment. These apparently conflicting influences on use are interesting because

they reflect the situation of individual parents seeking information and providing

care within the influence of a wider set of intersecting and constraining

structural forces. This supports current findings that use of the Internet within

wider caring practices cannot be deterministically predicted by a single

demographic element, reflecting current approaches to ‘cultures’ of the Internet

(Dutton and Blank, 2013) rather than structurally deterministic categories. It

also appears to offer some initial support for Bourdieu’s (1998) argument for the

potential for agency and choice within wider constraints, which can be

challenged through engagement with fields (Bourdieu and Wacquant, 1992),

157

although the analysis of interview data will explore this in further detail in the

following chapters.

Use of all kinds of online platforms was differentiated by age, with greater

use of all kinds by younger parents. This was mirrored in findings related to the

age of the child with Rett syndrome and, to a lesser extent, to years since

diagnosis. Differentiated aspects of Internet use (years used, mobile access and

technical competence) also influenced use of these platforms, with greater

competence and easier access particularly associated with greater use.

As noted above, time variables (age of parent, age of child and time since

diagnosis) were highly correlated and were associated with differential use of

the Internet but their relative impact could not be differentiated through

statistical analysis due to the small sample. Nonetheless - as argued in more

detail in Chapter 6 - there is a value to exploring how these factors concurrently

shape everyday practices and reflect a wider socio-historical context in the micro

actions of individuals.

An interesting finding was that blog use was greater among wealthier

parents. As will be argued in Chapter 7, this is significant as blogs were

considered as qualitatively different in terms of narratives, and conflict related to

parenting practices.

Finally, benefits gained from online support were mostly not

differentiated by income or education, which runs counter to OxIS findings in

information seeking in health more generally (Dutton and Blank, 2013).

However, as noted above, this may partly reflect differences between

information seeking and the seeking of advice or support, where more educated

parents may value independent information seeking over advice and support

seeking. This was an aspect of use that emerged in interviews and is discussed in

Chapter 6, with parents drawing a distinction between primary and secondary

information seeking. The exception to this finding was that gaining emotional

support online was associated with holding a higher education qualification. This

was a puzzling finding that is explored in more detail in Chapter 7. The impact of

years since diagnosis on benefits - where a greater proportion of parents of

children more recently diagnosed report informational and emotional support

benefits - does reflect to a certain degree the findings of Leonard and colleagues

158

(2004), who found that younger parents reported greater benefits. Similarly,

significantly more parents of younger children reported finding online support

sites useful as places to speak to somebody if they felt alone. This could reflect

both the relative lack of existing sources of support and the propensity for

parents of younger children to avoid meeting older children with rare

syndromes suggested in Gundersen’s (2011) research, an aspect also explored in

Chapter 6. It was not possible to explore the impact of age of respondent on all

benefits, but descriptive findings suggest (after Bourdieu, 1986) the greater

value of the ‘goods’ available online to parents of children with a recent

diagnosis, whose level of expertise is likely to be low. This is explored in the

context of individual experiences of caring for a child with Rett syndrome in the

following chapter, which emphasises the importance of taking into account the

knowledge and expertise built up over time by parents, which is not adequately

captured by the research reviewed in Chapter 2.

Data on ever having posted on an online peer support site bears further

exploration in the following chapters as this does not distinguish between

posting for advice and offering advice, nor does it differentiate between having

posted many years ago and more recently. The finding that differences in access

to the Internet, self-rated ability and years of use were not related to ever having

posted may be related to the higher level of competence, years of use and mobile

access among those who do access all and particular forms of online peer

support.

In summary, despite the limitations of this dataset, it is valuable in

providing a backdrop for interpreting the use of online support and information

in wider caring practices. The practices of parents explored in Chapters 6 and 7

are interpreted using the knowledge that age of parent, age of child, years since

diagnosis, use of mobile access, experience and online skill are likely to structure

use in ways that may not always be apparent to interviewees. By combining

these two forms of data within a single case study group I am able to explore the

complex and dynamic interplay between these structuring contexts and

individual practices. Chapter 6 explores the use of online support and

information in the context of capitals, habitus and the socio-historical context

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within which they occur. Chapter 7 explores how the use of online support may

both reproduce and challenge wider structural relationships.

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Chapter 6. The contingent use of online support and

information: the role of habitus, social and cultural

capital, expertise and needs

The interview data presented in this chapter and Chapter 7 explore how the

structural differences identified in Chapter 5 relate to differences in the use of

online support and information in the wider caring practices of interviewees.

This chapter explores the qualitative aspects of research questions two and

three. This involved exploring the interplay between one’s own needs, practices,

possession of cultural and social capital and habitus and the ‘goods’, practices

and habitus perceived to exist in specific online subfields. The range of ages of

interviewees and their children allowed an interesting cross-comparison of

support and information needs at different life stages in a caring ‘career’ against

a background of wider social, research and technological changes. As argued

throughout this and the next chapter, parents’ use of online peer support sources

was not static and fixed, but dynamic and responsive, influenced by their

changing needs, the resources available to them and their accrual of relevant

expertise and support sources.

The first section of this chapter describes the interaction between the

changing information and support needs of parents, the accrual of relevant

‘goods’ and sources of support and the contextual nature of the kinds of

information and support available across online and offline sources. The second

section narrows the focus to the differential use of online subfields of support

and information. This involves an exploration of the role of habitus in

differentiating between online subfields and alternative sources of support and

teases out suggestions of the role of cultural capital in the choice between the use

of peer and alternative sources of online information. This chapter closes with a

summary of how this data has added to our understanding of the interplay

between structural and micro aspects of online peer support use in wider caring

practices.

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6.1 Online information and support seeking in context: the dynamic

nature of needs, expertise, support and biographical disruption over

time

I have argued so far that a full understanding of the use of online support and

information needs to take account of both structural differences in use and the

interplay between individual habitus, capitals and everyday practices. As noted

in the previous chapter, parents drew upon a range of online and offline sources

to gain relevant information and support and use was largely differentiated by a

combination of time-related variables (age of parent, age of child and time since

diagnosis).

However data from a survey carried out at a single point in time is unable

to tease out how parents’ age, the age of their child and the time since diagnosis

might structure their experiences over time, their need for information and their

engagement with online sources of support and information. The interview data

was instructive in this respect because it combined data from parents aged from

32 to 58, with children aged from 3 to 28, who had received their child’s

diagnosis from within that year to 17 years ago.

In the retrospective accounts of older parents and the contemporary

accounts of younger parents, some key themes emerged in terms of similar kinds

of information and support ‘goods’ sought at different stages in a child’s life and a

carer’s ‘career’. These similar needs were embedded within dynamic and

differing contexts, with changes in both the nature of knowledge and of mediums

of support that reflected developments in the wider fields of medicine, research

and technology, as described in Chapter 1. Finally, these accounts allowed for an

assessment of how parents’ expertise grew over time with each new set of needs,

making the ‘goods’ available on some online sources of support largely

redundant, particularly when they appeared to be dominated by younger

parents with less relevant expertise or ‘goods’ to offer.

This section presents these findings in terms of how caring-related

expertise and access to relevant social capital changes and accrues over time.

Figure 6.1 outlines - in an illustrative and simplified form - the processes of

accruing relevant ‘goods’ and identifying useful social capital networks drawn

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from interviewees’ account. Each of the four parallel processes (care needs of

child, biographical/illness narrative, possession of relevant expertise/ ‘goods’

sought, and social capital resources) represents a continuum, with illustrative

examples given based on interview analysis.

The changes in these parallel processes will be described below, but it is

important to note three key points now. Firstly, that there is a change in terms of

the information and support needed over time. Secondly, that these dynamic

processes also happen within a dynamic context, with changing content of the

available expertise within wider fields and changing modes of communication

and social capital resources. This model is also therefore suggestive of the

experiences of parents who did not have the Internet to draw upon at the time of

their child’s diagnosis, or who had limited access. Finally, the model is, to a

certain extent, an idealised version of interviewees’ accounts, which involved

times of withdrawing from contact with peers, and renewed senses of

biographical disruption with new health problems.

The variation within the experiences of interviewees is described below.

However it should be noted that the interviewees who participated were those

who felt able to participate and are unlikely to reflect the full range of

experiences of all parents of people with Rett syndrome, for instance among

parents whose caring and work demands made participation impossible.

However, the model has strengths in that it illustrates the dynamic aspects of

carers’ experiences, the agency behind interviewees’ attempts to make sense of

and address a series of unpredictable health crises, and allows for the accrual of

expertise and networks over time and within the context of wider changes in

society relating to technology, research and communication.

The findings depicted in Figure 6.1 are discussed below in relation to the

age of the person with Rett syndrome, rather than in terms of the processes. This

is to demonstrate the interrelated nature of the parallel changes in all four

processes over time.

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Figure 6.1 Amassing expertise and social capital and repairing biographical disruption – parents’ changing needs over time

164

6.1.1 Early childhood

Although some interviewees had had some contact with people with

disabilities, either within their own families or as part of their work, none had

any knowledge of Rett syndrome when suspicions developed about their

child’s health and development or when a diagnosis was given (sometimes

many years later). Mirroring Schaffer and colleagues’ (2007) findings, for

some interviewees, this period of uncertainty before the diagnosis was spent

researching the possible explanations for their child’s puzzling loss of skills,

with the identification of Rett syndrome as a possible cause.

However for other parents, the diagnosis or period of waiting for test

results was the first time Rett syndrome was raised as a possible clinical

diagnosis. This meant that for the majority of interviewees at or prior to

diagnosis there was a lack of understanding of Rett syndrome and often,

broader disability and related health problems, twinned with a lack of pre-

existing connections to relevant social capital resources. Additionally, as with

the ‘classical’ progression of Rett syndrome, most interviewees’ children had

also been born without any obvious health problems, although this

experience varied from family to family. For parents of older children, when

diagnosis sometimes occurred later, this could involve two points of

diagnosis, with Rett syndrome diagnosed later in their caring career.

Interviewees’ accounts of the information and advice provided at

diagnosis varied, and accounts tended to support suggestions by some

commentators that local health professionals may lack up to date information

relating to rare syndromes (Gundersen, 2011; Zaidman-Zait and Jamieson,

2007). For some parents the initial health input could be limited or could

involve the communication of distressing, out-dated information.

our paediatrican had very helpfully told us she would be dead before

she was eighteen

[Interviewee #118, mother in her 30s of a 4-year old girl with Rett

syndrome, diagnosed a year ago]

Some interviewees described how the information and support offered by

health practitioners felt inadequate, for example simply naming the diagnosis

over the phone or suggesting parents look it up on the Internet.

[My daughter’s] community paed refused for a long time to actually

voice her opinion on what she thought was wrong with [my daughter],

kept saying delayed development!!!28 When me and her Dad refused to

leave her office until she told us what she “thought” it was, she then

said that she thought it was Rett Syndrome which of course meant

nothing to us.  She then said she had sent a blood sample from [my

daughter] to GOSH for testing (no permission from us to do this!) and

that in the meantime we should go home and look up RS on the

internet!!! […] We had no support at all and no further contact with

the CP.  A few days later we took [my daughter] to her GP for a chesty

cough and asked did she have the test results. The GP, shocked that no

one has called us, said yes and promptly burst into tears after telling

us yes [my daughter] had RS.  Still no further support […]

[Interviewee #194, mother in her 40s of a 12-year-old girl with Rett

syndrome, diagnosed 8 years ago]

All interviewees described a period of time when they felt a need to seek

additional information about Rett syndrome. For some interviewees the

distressing nature of the initial information they had gleaned from health

professionals or initial online searches meant they delayed this process.

However, when information seeking began, interviewees’ accounts showed a

link between this need for information and attempts to comprehend what the

diagnosis meant for them, their child and their family. This could be an

uncertain and potentially overwhelming process, given the variability of

health problems and severity of disability within the diagnosis of Rett

syndrome. For a number of interviewees there followed a very intensive

28 This excerpt was from an email interview, punctuation left as in original email transcript.

166

period of information searching online or from other known sources and a

seeking out of any sources that might provide any broad advice and

information, which again echoes Schaffer and colleagues (2007) descriptions

of an intensive period of use of the Internet to understand the meaning of the

prognosis for one’s child. In this research older parents described a similar

reaction and how this was achieved before they had access to the Internet.

This also suggests that the greater availability of information online is not

necessarily the cause of this kind of information seeking among parents of

people with rare syndromes.

but I, you know, I I wanted to read about everything […] and at that

point, you had to kind of get copies of things that had been […] o-

produced, so I had to, I got lots of copies of the papers from the Rett

Syndrome Association and that kind of thing […] the Rett Syndrome

Association at that time, which was the key place for information,

really, there were, sort of contact families and things, so I remember

ringing […] and having conversations on the phone, you know, that

was really how people did it […] so you’d have a conversation on the

phone and you’d ring another parent and you’d talk for three hours

about, you know, whatever it was […] and certainly I spent a s’, you

know, a certain amount of time talking to people on the phone at that

time […] and would have, you know, online, if it had been there

[Interviewee #77, mother in her 50s of a 19-year-old woman with Rett

syndrome, diagnosed 17 years ago]

Due to the array of information available, much of this information

searching involved scanning through sources for anything that might be

relevant in the future as well as what was relevant now. This was suggestive

of the ‘expert’ or ‘informed’ patient role described in health research more

widely (Bury, 1997; Nettleton, 2004b; Ziebland, 2004) and reflecting

Giddens’ (1991) work on patients as ‘reflexive consumers’ and is termed

‘expert carer’ work in the context of this thesis.

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my husband saw an article, which he then reposted, which is this one,

um, about some research that the Rett Syndrome Research Trust are

funding […] and then I […] had a look, and listened to the interview. So

I'll use it for that, for staying on top of what's happening with research

or that sort of thing.

[Interviewee #118, mother in her 30s of a 4-year old girl with Rett

syndrome, diagnosed a year ago]

During early childhood this could also include unearthing and seeking

practical advice about adapted parenting strategies, for example, toilet

training and communication or finding out about specialist equipment (for

example to support drinking and communication, appropriate travel cots and

prams).

As noted in Figure 6.1, interviewees tended to have few existing sources of

relevant social capital, particularly with regard to Rett syndrome. Some

interviewees were given information, the details of Rett UK, put in touch with

other ‘Rett parents’ or were referred to (or insisted on being referred to) Rett

specialists for further information. However, for other parents, no pointers to

social capital resources were given and they had to find their own sources of

potential support and information.

Um, when [my daughter] was first diagnosed, um, we weren’t given

any details as such, we were just sort of told just to go and find our

way [JH: Mm-hm] so um, I first contacted um, the American Rett

people […] I didn’t even realise there was one in the UK [JH: Ok, yeah

s’] So it was them that really I was in touch with first

[Interviewee #30, mother in her 30s of a 12-year-old girl with Rett

syndrome, diagnosed 9 years ago]

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It is difficult to find parents with Retts nearby. The parents we were

informed about live about 45 miles away.

[Interviewee #84, father in his 30s of a 3-year-old girl with Rett

syndrome, diagnosed during the past year]

The sources of support used varied, reflecting the sources of known

information available to the interviewee at the time of diagnosis, as

represented in Figure 6.1. Significantly, this did not reflect a complete move

from offline to online sources among younger parents, but more of a choosing

among available, known sources. For instance, in all completed interviews

where children had been diagnosed during the current ‘Participatory age’ of

the Internet, interviewees spontaneously named at least one attempt to gain

information or support from an offline source. Where parents of younger

children had chosen to and been able to access a local group for parents of

people with Rett syndrome, they found contact with parents of older children

reassuring.

the first time we went to [a local Rett UK group] it was an evening one

and […] it was just the parents and [my daughter] wasn’t that long..

diagnosed and um… what we got from that was [..] it was just a really

nice, social, relaxed evening and we were just like, ‘these people have

gone through this and they’ve come out and they’re ok,’ and they still

go on holiday and they still have a life, they go to work, they have fun,

they take their kids out on days out.. life goes on, and for us as an,

when she was so newly diagnosed, that was, cos we uu- you can’t

envisage what how much our life was gonna change and n what it was

gonna be like and so, and we still can’t, but, to have met these families

with a- all the older children to have come through what we’ve come

through and life goes on and you can see that you know they’re like,

‘oh yeah, we went sk- skiing and – we actually didn’t ski because she

can’t walk, but we put her in a sledge and she went down it, you know

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and and it was just like oh ok, actually life can be manageable, it’s ok,

you know and that was amazing

[Interviewee #193, mother in her 30s of a 4-year-old girl with Rett

syndrome, diagnosed 2 years ago]

However, some available forms of support involved face-to-face

contact with other parents and their children with Rett syndrome, for

instance Rett UK’s family events. For some interviewees with young children

it could be challenging to meet older children with Rett syndrome at this

early stage of biographical disruption.

Um and I remember back in those days meeting a family with an older

child and in hindsight it was a mistake. [JH: Right.] I needed to meet

some people with children my own age. [JH: Mm. And why why was

why did you feel it was a mistake?] Because you just focus on what

that child can’t do. [JH: OK.] And you know you think that that’s your

child’s future. [JH: OK.] You don’t focus on what the child or the

parents or the person can do. [JH: Yeah] Your instinct is to focus on

what they’re not doing at that age. [JH: Yeah.] And when your child’s

18 months old, you don’t really need to know that.

[Interviewee #25, mother in her 40s of an 8-year-old-girl with Rett

syndrome, diagnosed six years ago]

This meant that for some parents, such potential sources of peer

support offline were avoided at this stage.

Um, we've, because we're members of Rett UK, we've been invited to

the family days, which we haven't gone to. And part of the reason we

haven't gone, is because... I feel like... such a tangible reminder of our

future is quite hard for us to deal with? [JH: Ok, yeah.] Um, like we

took [my daughter] to the Rett clinic in Guys and St Thomas in London

170

and weeee.... er, we really wanted her to go, we wanted the specialists

to see her […] but obviously in the waiting room there's a lot of little

girls in wheelchairs with feeding tubes. And my little girl is walking

around, perhaps not very well and she can't talk and she can't use her

hands. But she's not in a wheelchair with a feeding tube and that was

really hard.

[Interviewee #118, mother in her 30s of a 4-year old girl with Rett

syndrome, diagnosed a year ago]

This was a similar finding to Gundersen (2011), whose interviewees

found it too difficult to face other children with the same rare syndrome, but

they also found meeting other parents of children with the same diagnosis in

the early stages difficult, which not all parents in my sample reported.

However, even at this early stage, some of the same parents were

already building networks of parents they felt they could call upon for advice.

Um... a-a- I have - in the last sort of six months or so, built up more of a... a

-a - not a support group, because I don't know anybody very well but - set

of contacts of people that I could probably contact [JH: Yeah] Um, I've got

telephone numbers for people living in the area whose daughters have

Rett syndrome and that kind of thing, so I feel more like I could call

somebody if I had a specific question.

[Interviewee #118, mother in her 30s of a 4-year old girl with Rett

syndrome, diagnosed a year ago]

About half of interviewees’ first contact with online peer support sources

came through recommendations from offline, existing sources of social

capital, such as work (within disability services), a health professional,

parents of people with Rett syndrome or a Rett syndrome charity. The

remainder accessed these sources through online searches. Interviewees and

survey respondents were often unaware of the full range of online sites and

171

groups offering peer support. One parent, whose child had recently been

diagnosed, had only just discovered the Facebook Pages of two charities,

which tended to have an organisational focus rather than offer peer

support29.

To be honest, I've never used a parents’ forum. Not because I have

anything against them particularly, but I've just never come across

one.

[Interviewee #84, father in his 30s of a 3-year-old girl with Rett

syndrome, diagnosed during the past year]

In summary then, for interviewees the period of time around receiving a

diagnosis of a disability or of Rett syndrome was marked by a lack of relevant

expertise and the initial experience of meaning making from an often striking

biographical disruption. As argued above, at this stage interviewees sought

new sources of available social capital and often embarked upon an intensive

search for information as part of trying to make sense of the diagnosis and

what it meant for them and their child, echoing existing qualitative findings

(Schaffer et al., 2007). However, as noted in Chapter 2, the majority of

findings relating to the use of the Internet and peer support among parents of

people with rare syndromes excludes parents of adults. As my sample

included parents of older children and adults, it was able to shed new light on

how information seeking practices changed over time and in response to

changing needs.

6.1.2 School-age to early adulthood

Interviewees discussed how the age of their child was often associated with

facing particular health needs, although individual health experiences could

vary widely overall. This meant that some parents of children of similar ages

could be looking for information about particular types of health problems.

29 This aspect of Facebook Pages is discussed in greater detail in Chapter 7.

172

like I say, they’re they’re all similar ages to [my daughter] so we’re all

kind of going through the same, the girls are going through the same

stages so like onset of seizures, gastrostomies, scoliosis, starting

schools, communication strategies, they’re all kind of like going

through the same stages

[Interviewee #193, mother in her 30s of a 4-year-old girl with Rett

syndrome, diagnosed 2 years ago]

As children got older, the number of new health problems tended to reduce

slightly, although again there was a great deal of variation. For some parents,

this meant that online information seeking narrowed to focus on information

about any new health problems as and when they arose.

I think what’s happened for us, things have changed with [my

daughter] and so I’ve trawled some of the sites perhaps I haven’t been

on for a while to get more updated information, cos we’ve never had

to worry about epilepsy, so I’ve never particularly looked at that for

her condition but she might now have it, so that’s why I’ve been

trawling things I’ve looked at before specifically for that

[Interviewee #28, mother in her 50s of a 12-year-old girl with Rett

syndrome, diagnosed 8 years ago]

The work of understanding the meaning of the diagnosis and trying to gain

information about likely prognosis continued for some parents in

information seeking about similarities among girls with the same genetic

mutation.

but also there’s other people on there, um on [a particular site] that have

been able to understand some of the mutations that the girls have got, so

that was quite nice, um, a couple of months ago, people were posting on

their girls’ different mutations so it’s nice to see who’s got what mutation

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and how the girls, are similar [JH: Oh ok. That’s that’s interesting, so did

did you find something relevant to to you and [your daughter] on there?]

Yeah I mean I found a couple of girls that um had the same mutation and

at the same time found that they looked very similar [JH: Oh really?] Kind

of like people with Down’s Syndrome look similar [JH: Yeah] it’s really

peculiar to see some of the girls with Rett’s that have various similarities

and you know have gone down the same path as, you know, developed

epilepsy, scoliosis, you know [but] none of them develop, developed sleep

apnoea…

[Interviewee #30, mother in her 30s of a 12-year-old girl with Rett

syndrome, diagnosed 9 years ago]

Parents’ use of online forums and other sources at this age-stage tended to

focus upon interpreting new symptoms and behaviour, discussing and

weighing up of different treatment options and on the daily management of

health conditions. Examples included: the benefits and disadvantages of

different drug combinations for treating epilepsy; the management of

scoliosis and reality of spinal surgery; and the benefits of dietary changes. As

such, they reflected the kinds of discussions described in research based on

the analysis of posts on online forums for disabled children discussed in

Chapter 2 (Huws et al., 2001; Jones & Lewis, 2001). However, the use of

interviews here allowed an exploration of how these uses fitted into the

wider context of parents’ lives and their children’s needs. Parents also

continued to seek and use advice about relevant daily caring strategies and

equipment for older children (for example communication aids, wheelchairs,

splints, bibs and sleep systems30).

the daily struggles are sometimes harder than the larger medical ones,

daily challenges of eating, sleeping, crying, screeching, so its the daily

challenges and ideas/solutions to this is what is covered.

30 Sleep systems are supportive structures that aim to improve or maintain reasonable posture for children with spinal problems.

174

[Interviewee #194, mother in her 40s of a 12-year-old girl with Rett

syndrome, diagnosed 8 years ago]

Parents at this stage still used a ‘horizon scanning’ approach as ‘expert carers’

keeping abreast of recent developments and therapies that might benefit

their child, thus maintaining a certain broad focus in their information

searching by scanning through preferred sources of information.

[JH: What is it that you go to these groups for, or look out for, or find

most interesting on these pages? (Lists popular sites used)] Same

answer for all 3, info on events, developments in the RS world, reading

about family experiences, photos. When you have a child with RS, you

want to know you have a lot of areas covered! 

[Interviewee #194, mother in her 40s of a 12-year-old girl with Rett

syndrome, diagnosed 8 years ago]

This description is particularly evocative of the felt imperative to remain

informed that was described by Ziebland (2004) and quoted in Chapter 2.

For interviewees with slightly older children with Rett syndrome,

particularly those who had experienced greater health problems earlier in

their childhood, the likelihood of facing novel health problems had decreased

markedly.

but I also think that my child is old enough and established enough

that there isn’t actually anything else Rett-wise that’s gonna kick that

we haven’t already got, you know, she’s not gonna start breathing

dysfunctions or having seizures or spinal curvatures or you know,

swallowing issues, or or hyperventilation or or we we’ve already got

all those things, there isn’t anything else coming, it, there there isn’t

any more regressions to come

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[Interviewee #174, mother in her 40s of a 14-year-old young woman

with Rett syndrome, formally diagnosed eight years ago although

mother realised 12 years ago]

This narrowing of information searching could also be related to a

change in approach, a move from understanding Rett syndrome as a whole

and its meaning for the family to a more practical, targeted approach.

the symptoms are the same all over the world, but I prefer the support

and, what I can get to help us […] which obviously is, is a localised

thing so it didn’t, you know the worldwide things just really didn’t um,

interest me, as much. In the beginning they did because you’re after

every bit of information you can get, but now I don’t need that […] I

think you get to the point where you could read every medical

symptom in the world but it’s not actually gonna change anything. [My

daughter’s] still [my daughter] and I can read every email under the

sun, it won’t actually make her any better, um, what will make her,

have an easier life is if I can find out, is there anywhere local that does

riding for the disabled, or or that side of things I found, more helpful

[Interviewee #75, mother in her 40s of a 14-year-old girl with Rett

syndrome, diagnosed 10 years ago].

A number of parents of schoolchildren talked about moving away from the

initial ‘shock’ period, where emotions were higher, but of still experiencing

some feelings of grief that were less foregrounded.

And I think erm particularly, when recently we’ve had a few families

who’ve just got a new diagnosis and they’ve got particularly young

children, sometimes it does bring back the emotions. Cos our daughter

was quite young when she was diagnosed and it’s the emotions are

still there in the background and it can bring it back to the surface

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which is not really probably always a bad thing either. [JH: OK. What

what’s positive about that then?] Um well to be honest sometimes I

think if you try and hide grief, that’s all you’re doing. Um it’ll it’ll never

go away and sometimes it will come to the surface and I think it’s how

you deal with it. And accept that it probably always will be there as

long as it’s not always at the forefront and it’s not constantly there.

Short episodes, to me, are normal […] and if you’re empathising with

somebody else.

[Interviewee #25, mother in her 40s of an 8-year-old-girl with Rett

syndrome, diagnosed six years ago]

For one interviewee it was a case of ‘keeping going’ – against a fear of not

coping with everything the diagnosis entailed.

I’m very much generalising here, um there’s two distinct groups. Those

who are driven to making their lives the best they possibly can for the

disabled children and those who’ve just - and I totally understand this -

have just had enough and have given up. [JH: Yeah] and can’t cope and are

just ground down by the system, by the child, by everything, by the lack of

support, and my heart goes out to them but I can’t be one of them. I can’t, I

can't ever let myself go there. I can see how you can get there, my dread is

to get there, er and sometimes I keep going too much because my fear is

that if I stop I’ll just collapse and will be one of them [laughs]

[Interviewee #86, mother in her 40s of a 13-year-old girl with Rett

syndrome, diagnosed 11 years ago]

Interviewees with school-age children continued to build wider relevant

social capital networks (including online and offline contacts) and to

establish a set of trusted, reliable contacts. This could involve a period of

active social capital building, making connections with as many other ‘Rett

parents’ or useful organisations or people as possible, then a narrowing

177

down to parents or organisations that could offer more in terms of relevant

information, online and offline.

I think over the years – I guess things have changed for us […] I used a

lot of things when she was smaller [JH: Yeah]. I think trying to glean

information or – different things, but once she started at school and

we had our diagnosis, things changed greatly u-u-and then I then

homed in more on, say Rett UK because my specifics I could get from

them and I’ve only perhaps used Carers or Contact a Family for more

work-related things than anything else I think really.

[Interviewee #28, mother in her 50s of a 12-year-old girl with Rett

syndrome, diagnosed 8 years ago]

Through, just through Facebook, um, you get sent Friend requests

from people who know other Rett people and [JH: Oh ok] and that’s

how it, how it went on and in the beginning of Facebook I accepted

requests from everybody um because it was always, hey you’ve got to

have as many friends as you can [laughs] [JH: (laughs) yeah] and

[laughs] um I have got rid of lots, I had lots and lots of American,

mums um, which I’ve got rid of a majority now, only the ones I’ve only

kept, are the ones who I have some form of contact with and their

systems and the way their benefits run and their their medical aid are

completely different to us, so we really don’t have anything to discuss

that’s in common with with us at all, other than the symptoms [JH:

Yeah] Um, but yeah sometime, you know, the same, you might see the

same names keep cropping up on other people’s posts and you you’ll

send Friend requests and, yeah I’m a lot more picky [laughing] these

days

[Interviewee #75, mother in her 40s of a 14-year-old girl with Rett

syndrome, diagnosed 10 years ago].

178

Among this group were parents who had not received a diagnosis during the

‘Participatory age’. For some of these parents, the reliance on certain media

tended to ‘stick’ along with the use of particular sources. This was also

related to a certain form of ‘digital taste’, which is explored in section 6.2.5.

I sometimes just feel I need to speak to someone actually, you know, a

conversation rather than… I know it is a conversation by the group,

but I, I don’t know, perhaps it’s old habits die you - uh – whatever that

saying is um just because in the early days when we were first using

Rett UK, they didn’t have a Facebook page and there was no Twitter

and all of that and so you just had to pick up the phone and I guess

that’s, so for me I’m a bit of a creature of habit I suppose

[Interviewee #28, mother in her 50s of a 12-year-old girl with Rett

syndrome, diagnosed 8 years ago]

For some parents of slightly younger children, this could involve taking

offline some relationships formed online or into a private online

correspondence31. This could involve some element of establishing similar

taste or parenting practices – a theme that is picked up in greater detail in

section 6.2.5 on the role of habitus in choice of online subfield.

one of the things I, you know, yeah wanted to get across in this was

that.. online support, has been great but actually it then morphs into

friendships with a few people, which is sort of where I am now […] I

now have identified, the people that, you know, I, that I get on very

well with and now, we don’t do it on forums, you know, we text, or we

email or we meet up[…] so yes, it very much hasn’t stayed online

[Interviewee #76, mother in her 40s of a 5-year-old girl with Rett

syndrome, diagnosed 3 years ago].

31 Such as private messaging on Facebook, which cannot be seen by other users outside the conversation.

179

The impact of changes in the Internet was obvious in this group, who had

used some of the earlier forms of support, such as email groups. Some of

these parents found existing support sources were ‘migrating’ to Facebook

and other kinds of groups were closing due to lack of use or concerns about

security and they followed these sources to their new platforms.

6.1.3 Adulthood

The health needs of interviewees’ children plateaued in adulthood. However

this may reflect the parents who were available to participate, who may have

had healthier children. Nonetheless, among interviewees, there were few

novel health issues to navigate.

the other thing, is that that we don’t need as much of of what that was

now anymore because we’re kind of in a place where, [my daughter’s]

older and it’s easier to to know what you need, there’s just not so

many needs really […] they’re more social needs more than medical

needs now

[Interviewee #132, mother in her 50s of a 28-year old woman with

Rett syndrome, diagnosed 17 years ago]

Interviewees with adult children had far fewer information needs than

parents of pre-school and school-age children. This was partly due to a much

higher stockpile of relevant knowledge. Parents of adult children talked in

interviews about providing information to parents of younger children

through various mediums and having less need for information and support

themselves.

I tend to have been there, done that a bit, you know so so therefore I’m

the font of knowledge rather than looking for the knowledge now

you know? So um you know it’s it’s so there’s uh less need to find out

about things actually

180

[Interviewee #132, mother in her 50s of a 28-year old woman with

Rett syndrome, diagnosed 17 years ago]

Most older parents noted that those posting on online support forums

tended have younger children, who were experiencing different issues.

Well, it’s like in Mother and Baby groups, isn’t it? [JH: Yeah, yeah] You

wouldn’t have like the babies, and then you’d have a 10 year old there.

(Laughter) [JH: Yeah.] It’s just a completely different thing, isn’t it? You

know? [JH: Yeah. Yeah] It’s the ages, and everything in common I think.

[Interviewee #133, mother in her 50s of an 18-year-old woman with Rett

syndrome, diagnosed 16 years ago]

This meant that the ‘goods’ that parents of older children could

access in online support sites were limited in terms of information about

caring and health strategies. However, parents of adult children still sought

advice about new equipment (examples included use of iPads and

communication equipment) and kept abreast of new therapies, which was

achieved by parents both online and offline, for instance through Rett UK’s

newsletter. Yet for some parents, adopting newer developments in

communication, such as eye-gaze, was not straightforward with adult

children.

I’m really kind of interested in things like eye-pointing and things like

this, but again you have to see it in context, you know, it’s great, e- eye-

pointing would be great, and if it’s beneficial for [my daughter], that’s

great, but we have spent an awful long time finding communication

systems that work for [my daughter], um, of which, I wouldn’t throw out

the window, now, just for another system, you know so um [rubs hands

together] we’ll wait and see

181

[Interviewee #132, mother in her 50s of a 28-year old woman with Rett

syndrome, diagnosed 17 years ago]

Nonetheless, this group of interviewees were still engaged in expert

carer work. This also reflected Schaffer and colleagues’ (2007) finding that

parents of children with the rarest conditions in her sample continued to stay

abreast of research while other parents tended to reduce this activity over

time. However, it should be remembered that interviewees were recruited

due to their active of use online peer support, so these information-seeking

activities may not reflect all parents of people with Rett syndrome. Expert

carer work involved both scanning for anything that might be useful for their

child and staying appraised of developments in research. Research

breakthroughs were monitored by interviewees with adult children through

online sources, which were perceived to be the best and most up-to-date

sources of such information.

I’m only really keeping an eye on it so that I don’t miss, major

developments. So what would I click into, I’d click into something

where they were talking about a new drug treatment, or they were

talking about some kind of breakthrough, then I would probably go in

and read it. Most of the time I’d just delete it

[Interviewee #77, mother in her 50s of a 19-year-old woman with Rett

syndrome, diagnosed 17 years ago]

Interviewees with older children tended not to be actively building their

social support. For instance, when I asked one parent of an adult child about

seeking advice and support, she made it clear that she had existing, trusted

networks she could now rely upon.

you see, I’ve got a really good support network for my daughter now.

Cos she’s um, she’s partly residential in a residential school with great

182

nursing and really good teaching and excellent care. I’ve got a whole

network of people to share my concerns with there.

[Interviewee #77, mother in her 50s of a 19-year-old woman with Rett

syndrome, diagnosed 17 years ago]

When seeking new connections was mentioned by one interviewee with

an adult child, it was about engaging with others either to offer help or to

participate in fundraising activities, rather than seeking support.

I quite like to do these um fund-raising events and I always find out what

other people are doing. Like last year I discovered quite a few people are

taking part in the 10k run in London. So I decided to join them (laughs).

So that’s quite good to find out what other people are doing and then do it

with them.

[Interviewee #116, mother in her 50s of a 20-year-old woman with Rett

syndrome, diagnosed 17 years ago]

The need for support with coping with the biographical disruption of

having a child with Rett syndrome seemed to be lower among parents of

adult children than among other interviewees. Three interviewees described

having reached a level of ‘acceptance’, but of this also being related to their

current situation with their daughter.

I know people go through different stages at the different stages of

caring. I’ve sort of um come to the third stage of acceptance. I think my

emotional needs and things like that have um sort of quite settled. I

think in the first phase, like it’s you’re in shock and […] I think that’s

the time when you really need to talk to other people to share your

emotions. I think that time has passed for me anyway because my

daughter is now 21. I’ve been her carer for 21 years, so I feel quite

settled. Occasionally I do want to share my feelings, especially as my

183

daughter is getting older. I think I find it easier, well I think I need to

talk to parents of my age really, because they are in a similar situation.

[my daughter] will be leaving college in 2014 and then what do I do

then?

[Interviewee #116, mother in her 50s of a 20-year-old woman with

Rett syndrome, diagnosed 17 years ago]

us, s, who have got older children now don’t have, you know, we’ve

we’ve got the grief, yes but we’ve got the acceptance and the getting

on with it, really and actually it does, Jo, get easier, um you know, once

you’ve accepted that, y-you’ve got this severely disabled, child, um

actually, because they’re not, you know, they’re not regressing like

they are in childhood, it does get easier.

Interviewee #132, mother in her 50s of a 28-year old woman with

Rett syndrome, diagnosed 17 years ago]

This decreased need for support from other parents was something

that carried over into the use of online peer sites for support.

I did feel the need for that, earlier on I felt the need for that when

those things [online peer support groups] weren’t there and I found

other ways to get that so I joined, I joined um contact groups, I was

part of the Rett Syndrome Association, I deliberately went to meet

with other parents, I went every year to a family weekend because I,

once a year I wanted to spend time with, so I did those things, because

that was what, so I obviously, I obviously, you know, would have

benefited from this, you know at that time, it’s just that by the time

this has come, I am less needy in that respect, I suppose.

[Interviewee #77, mother in her 50s of a 19-year-old woman with Rett

syndrome, diagnosed 17 years ago]

184

However, having gone through a stage of seeking support was not

universal in this group. A couple, who were interviewed together told me that

they had never really felt the need to join any kind of support group.

And as [my husband] said, I don’t know whether we’d want to be just

a group of Rett parents with Rett children. [JH: No. Yeah] Um I mean,

you may be able to give each other a bit of support and there may be

times where they say, “Well actually, we went to see this doctor”, or,

“We went to this clinic”, or “We found out that you can like benefits

and things”, but apart from that, I think it might be a bit…of a moan

and an, oh dear. [JH: Yeah, yeah] You know so. [Husband of 133: I

guess one thing is, we don’t feel sorry for ourselves.] No [laughs] [JH:

Mm. Mm.] [Husband of 133: We never have.] No. We’re very positive,

and – [Husband of 133: Don’t want to.] No. […] And I know it must be

hard for some parents, because it does affect people in different ways,

doesn’t it? [Husband of 133: Mm] But, erm, I think because we’ve

always worked as well, so you have to get on with it, don’t you?

[Interviewees #133 and #133-H, parents of an 18-year-old woman

with Rett syndrome, diagnosed 16 years ago].

On the edges of these parents’ accounts were references to other

parents who had not managed to overcome the biographical disruption

involved in having a daughter with Rett syndrome, so the accounts related

here may only reflect the experiences of interviewees who felt able to

participate in my research.

and you’re gonna get some strong mums who... buckle […] the mother

[of a girl with Rett syndrome I know] had got so distressed, she’d run

away, they didn’t see her for five days, they didn’t know where she

was, she couldn’t cope, that’s not a bad mum, that’s not a bad person,

that was someone who cou- - and she still to this day can’t cope, the

185

father can and the rest of the family all mucks in, that mother has

never ever accepted um that child.

[Interviewee #174, mother in her 40s of a 14-year-old young woman

with Rett syndrome, formally diagnosed eight years ago although

mother realised 12 years ago]

Despite some variability in experiences, and the difficulties with recall

associated with retrospective accounts, there were enough common

crosscutting themes across parents’ accounts to be suggestive of a far more

dynamic process than is normally depicted in research about carers’ use of

online support and information. These processes were outlined in Figure 6.1

and show the role of parents’ agency in seeking support and information at

different times, while also accounting for the relevant sources of social

support and expertise accrued over time. This process is suggestive of

Bourdieu’s description of the contingent nature of seeking ‘goods’ of value in

different social capital sources (Bourdieu and Wacquant, 1992).

The next section focuses on how the use of online support subfields

relate to these accrued levels of expertise and social capital and also draws

out aspects of individual habitus that appeared to influence the use of specific

online support subfields.

6.2 The influence of habitus, cultural and social capital on

interviewees’ ‘fit’ with specific online support subfields

This section explores the impact of differing levels of relevant caring

expertise and social capital with regard to their impact on an individual’s use

of specific online peer support subfields. As described in Chapter 2, this is a

much neglected area within current research, which tends to talk about all

online peer support as a single entity or focus on use of a single forum. As

suggested in the previous section, parents’ stockpiles of relevant expertise

186

and connections to trusted social capital resources appeared to develop over

a caring career. Yet interviewees also possessed pertinent cultural capital

that had the potential to differentiate their use of different sources,

specifically having accessed research training in higher education courses

that helped them to interpret primary research papers. In addition,

interviewees also had access to other forms of social capital, which varied in

terms of its appropriateness for certain forms of advice, support and

information. It is therefore argued below that a clear understanding of

differences in engagement with online peer support sources needs to

consider the wider context of existing cultural and social capital rather than

describing the use of online support and information in isolation.

6.2.1 Relationship to existing social capital resources

Clearly all interviewees had had some contact with online peer support

forums, so their accounts did not reflect the views of parents who did not

seek out such sources of support. The existence of an alternative approach

was suggested by the comments of one respondent to the survey, who

rejected the need for any kind of peer support where good family support

was available.

I have a great family network around us and we are not a family in

crisis or need. We are a normal family doing things our way. We all

muck in together and our daughter […] is the most delightful young

lady you could wish to meet.

[Anonymous survey respondent]

For some parents information would be sought online, but support

during difficult times was only sought from friends and family.

[JH: Yeah. Um and so when you need help where what are the sources

of help that you you would tap into?] Um, probably my my family. [JH:

Yeah.] And close friends.

187

[Interviewee #25, mother in her 40s of an 8-year-old-girl with Rett

syndrome, diagnosed six years ago]

However, some parents described how their own family’s reaction to

their daughter’s diagnosis made it difficult for them to provide the support

they wanted, or their understanding was limited.

With family it's more difficult. (Sighs). […] on the one side, on my mother-

in-law's side, they're so caring and they're so lovely toward her, but they

want to pretend it's not happening. [JH: Yeah] So, if we send them stuff,

they don't read it […] On my parent's side [JH: Mm-hm] They're not nearly

as loving or caring [JH: Mm-hm] but they sort of... feel like it's happening

to them [Me: Ok. Yeah.] And then that's not helpful to me because it's not

happening to them, it's happening to us.

[Interviewee #118, mother in her 30s of a 4-year old girl with Rett

syndrome, diagnosed a year ago]

Although most interviewees had at least some good support from

their family network, there could be limitations – for these interviewees – to

what that support could offer.

Cos it’s, you know, having a child with Rett syndrome is a really lonely

thing, can be a really lonely thing because there’s nobody much around

that you can share that thing with, so you know, you’re often thinking,

well you know, what what what do I do with this, what do I do with that

and where whereas with a normal child, you know, you’d ring your sister

and say, you know d’ was so-and-so like that when they were teething,

you know, you’d have that kind of conversation, you haven’t got a frame

of reference to do that with, so it can be a really lonely thing.

188

[Interviewee #77, mother in her 50s of a 19-year-old woman with Rett

syndrome, diagnosed 17 years ago]

Interviewees also spoke about how, although friends could be very

supportive, it could be difficult for them to understand what it was like to

look after a child with Rett syndrome, or they worried about alienating them.

Yeah, cos yeah, although yeah, some of my friends are lovely and would

do anything for us you can’t actually really talk to them about how you

feel because… they don’t und, they would never understand, I wouldn’t

have ever understood until you’re actually in that situation.

[Interviewee #83, mother in her 30s of a seven-year-old girl with Rett

syndrome, diagnosed 5 years ago].

I think if you... spend a lot of time complaining to your friends then quite

soon you don't have any.

[Interviewee #118, mother in her 30s of a 4-year old girl with Rett

syndrome, diagnosed a year ago]

However, the progression of her child’s health problems meant that one

interviewee identified more with parents of children with severe health

problems or disabilities than with other parents of people with Rett

syndrome. In this case, the young woman with Rett syndrome also had an

unrelated heart condition.

our respite has been hospice, um, right from little, because of her ill

health, um, my my friend down in [another area]’s just lost his boy

with muscular dystrophy at the age of 23. We had more in common

because our children both had health issues than me and say another

Rett girl in this area that’s this big and walking and has just their

189

hands, see, ‘just’, see again, [JH: yeah] ‘just’ lost the use of her hands

and speech because, oh to be back to that!

[Interviewee #174, mother in her 40s of a 14-year-old young woman

with Rett syndrome, formally diagnosed eight years ago although

mother realised 12 years ago]

Some parents with established networks of Rett parent peers

preferred to communicate with those parents privately, rather than through

groups. This could reflect having pre-existing links with those parents or

establishing friendships online that were later taken offline.

but the people in the Rett community that I really want to be in touch

with I’m in touch with them anyway either by email or phone or – I

mean – yes, there are a couple of families it is only via Facebook, but

not necessarily via that [online peer support] group […] I guess unlike

some I’m in an enviable position, I like to think, [JH: Mm-hm] in that,

um, for [my daughter], there was – there were two older girls with

Rett syndrome at her school [JH: Oh, really?] So I’ve always been able

to ask those mums anything although they’ll get – all the girls are

different, you, you know [JH: yeah] and because, um, I suppose also

because of [being involved with the local] support group, and knowing

other families actually I haven’t felt the need to ask the questions and I

know other families around the country that I would probably ring

rather than post something.

[Interviewee #28, mother in her 50s of a 12-year-old girl with Rett

syndrome, diagnosed 8 years ago]

So yeah, so I think that um, there’ve been times where, where that

forum has been very supportive and maybe there are people who still

find it so, um but I I’ve felt like I’d just sort of got to the end of that

particular road, as I say, I had, partly through it, um, had, you know,

190

made e- found my own network my own group, you know I have

some, fantastic Rett friends and, that’s it, you know, they’re my

friends, I’ve, you know, we’ve we we have had lots of online

interactions but we’re now friends offline.

[Interviewee #76, mother in her 40s of a 5-year-old girl with Rett

syndrome, diagnosed 3 years ago].

Even among younger parents, certain trusted sources of both online and

offline information were seen as preferable to online peer support.

I had a friend who said, 'oh you should go and look at Mumsnet' (typing

sound) they've got a Special Needs area... um.. let's see if we can find it...

[…] but you see what I mean? […] see I probably wouldn't look at any of

these things because I would think that... what's Mumsnet going to know

about the DLA that I can't get from Cerebra [local organisation] who are

specialists in it?

[Interviewee #118, mother in her 30s of a 4-year old girl with Rett

syndrome, diagnosed a year ago]

Finally, a number of interviewees talked about overlaps between the

kinds of information within different online peer support groups. This meant

that if parents were already using one particular group, they might not feel

the need to join another one.

I’ve been added to one recently but I’ve I’ve looked at it but it’s not

different to the one that I’m already in so I I don’t really see the point

in [inhales] in being on all of them.

[Interviewee #75, mother in her 40s of a 14-year-old girl with Rett

syndrome, diagnosed 10 years ago].

191

This comparative use of multiple sources of online support is

neglected in the current research, which, as argued in Chapter 2, tends to

reflect the use of online support overall or the use of a single group, rather

than the choices made between alternative online groups.

Together these findings suggest that the use of online peer support

should be considered as part of a wider and shifting constellation of possible

sources of support, which are weighed up for the ‘goods’ they can provide at

a particular time in a parent’s caring career.

6.2.2 Cultural capital and differences in propensity to seek help in peer

support forums

As will be remembered from Chapter 5, education level – a proxy for cultural

capital - was not significantly related to ever having used online peer support.

However, within interviewees’ accounts, the role of online peer support as a

primary source of information appeared to hold a different status depending

on level of qualification held. This emerged from fourteen interviews, where

interviewees described having preferred sources of information when they

needed to research something new related to caring for their daughter with

Rett syndrome. All four interviewees with a basic or secondary level of

education described posting on a forum as a primary source of advice.

I tend to go there first. Um I posted I posted a a post recently [about

puberty] […] and uh, I just wanted some advice and because I have

quite a good rapport with a lot of the parents on in the group, kind of

you know you’re gonna get sensible advice and it’s not all doom and

gloom and people inject some humour into it and it you just feel a little

bit better about it.

[Interviewee #75, mother in her 40s of a 14-year-old girl with Rett

syndrome, diagnosed 10 years ago].

However, while interviewees from all educational groups had posted in

forums asking for advice of various kinds, none of these interviewees

192

described an online peer support site as their primary method of finding out

new information, if they described having a preferred method at all. Five

interviewees with a higher education qualification described how they would

try to research something themselves first before asking a question on a

forum, using a range of strategies including Internet searching, ‘expert carer’

scanning of blogs, contacting known Rett parents offline and, for one parent,

reading journal articles.

Um... I mean I’m quite good at researching anyway, so I probably

would go off and research it myself […] [JH: yeah yeah and so whe-

when you, when’s the point that you would go online into a group and

ask (…) people about something?] Um [JH: or would you tend just to

look at it rather than post?] Some, I mean very occasionally I do [JH:

Mm] I d’ e’ I don’t tend to ask questions.

[Interviewee #83, mother in her 30s of a seven-year-old girl with Rett

syndrome, diagnosed 5 years ago].

For some parents with a higher education qualification, online peer

support sites could be used to narrow down the focus of a search.

I mean you could Google but you’d end up sort of all day with the

amount of stuff that is out there, but whether it’s actually, of any use or

or or whether it’s NHS-funded, things like that obviously so it just

seems to be, it seems to be a helpful way of finding out what is

available [JH: yeah, qua’, more quickly and] yes [JH: access other

parents who know] Yeah. […] I mean sort of can you advise on a

mattress so you know unless, u’ unless you know what you’re looking

for it’s sort of needle in a haystack so it’s all very, help, everyone’s

helpful.

[Interviewee #83, mother in her 30s of a seven-year-old girl with Rett

syndrome, diagnosed 5 years ago].

193

For another interviewee with a higher education qualification this was

combined with scanning sites or groups for information, where the use of

online peer support was seen as a last resort only.

Um, if I’m posting it means that I’ve already read a load of stuff and I can’t

find it anywhere. [JH: OK. Yeah.] It’s my last resort. [JH: OK. Yeah.] Er it

wouldn’t be my first option. [JH: OK] Um, whereas some people probably

can’t be bothered. Um I I just like to know I think, have some knowledge

to base it on before I go in and ask the question. But yes, it would be, it

would be, the bottom of the list to then do a posting. So that’s the

difference for me, the other bit is is scanning for information and at first

um and seeing if I can get that from people who’ve already posted.

[Interviewee #86, mother in her 40s of a 13-year-old girl with Rett

syndrome, diagnosed 11 years ago]

However, even among parents with a higher education qualification, a

lack of specific medical knowledge meant that reading other parents’

explanations of current research on peer support forums was a helpful way

of interpreting it. This suggests a form of bridging social capital at odds with

Bourdieu’s conception of social capital, which provided democratic access to

‘goods’ by any parents using a forum.

I want support and I want knowledge um you know and some people

do an awful lot of research and obviously h-have a brain that can

understand a lot more biology than I can and I appreciate that time

and effort that they take. So that’s what I want out of it […] [JH: Yeah,

OK. So that’s that’s really interesting so you that that there are some

people in the community who will kind of gather up and kind of digest

and present the research.] They haven’t got a medical background, but

194

they seem to be able to search out the information and digest it and

bring it to the community.

[Interviewee #25, mother in her 40s of an 8-year-old-girl with Rett

syndrome, diagnosed six years ago]

However, as described next, very knowledgeable parents were

sometimes circumspect about what they would share online, suggesting that

access to this kind of bridging capital was limited by parents’ willingness to

share ‘goods’ in online support spaces that did not offer them commensurate

rewards, an approach more reflective of Bourdieu’s conceptualisation of the

goods of social capital resources being available only to those with

commensurate cultural capital.

6.2.3 Willingness to share cultural capital in peer support forums

Most interviewees described a willingness to respond to other parents’ posts

asking for support and information, but only if they felt they could add

something new or had relevant experiences to draw upon.

I will just, add some information if somebody’s looking for something,

um, so maybe say, ‘oh, yes my daughter had that problem at that age,

but she hasn’t got it now,’ or, ‘this is what we’ve done for that’, that

sort of thing.

[Interviewee #28, mother of a 12 year old girl with Rett syndrome]

However, for parents who had preferred alternative sources of

support, the investment of time in online forums was seen as having less

benefit than using it as part of an exchange to build social capital in spaces

where they had existing online relationships. For example, one parent who

blogged also only tended to respond to other bloggers’ posts

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[JH: Um, have you ever posted on a forum other than the blogs?] No.

[JH: Mm. What what puts you off from posting is it, you] Time? [JH:

Yeah. Mm-hm. Yeah] I think yeah, I I… I f-fully appreciate it might well

be useful to other families, we say[?], we used this bit of equipment

and it worked really well however this, blah blah blah and the kind, to

have the conversation I’m reading, but, it sounds really selfish now,

there’s nothing in it… for me to do that, then you’re not gonna a get a

response, you’re not forming a relationship with anyone you’re not..

really getting anything off your chest, it’s not talk- – and I just don’t

have time, I w- to do to be that… unfocused on what I’m on the

Internet for really.

[Interviewee #193, mother in her 30s of a 4-year-old girl with Rett

syndrome, diagnosed 2 years ago]

Given the finding that parents blogging and reading blogs were found

to be more wealthy and educated than those who used Facebook groups (as

was the case with this interviewee), this is a particularly interesting finding.

However, as she wrote a publically accessible blog, including searchable

terms, it is arguable that this information is available to others. Yet, as found

in the survey, there was evidence of a greater proportion of blog reading

among wealthier respondents. This meant that this interviewee might only

be sharing her expertise within a group of like peers32. Although this was not

through a deliberate intention to exclude, it did appear to reflect Bourdieu’s

(1986) argument that people tend to find themselves among homogenous

others in certain social spaces, which is explored in more detail in the next

subsection.

32 This could only be definitively confirmed through a randomised survey, but the social differentiation of blogs was suggested by the findings reported in Chapter 5. Parents’ accounts of similar parenting practices in section 6.2.5 below adds further weight to the interpretation made here that blogs were socially differentiated spaces used by a homogenous group of parents.

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The final two sections of this chapter explore how the fit or disparity

between personal taste, practices, and habitus interact with the habitus of

individual online support subfields over time.

6.2.4 Fortuitously brought together?

Bourdieu argues that members of an elite group will tend to find themselves

in social contact through participation in social settings that “[bring]

together, in a seemingly fortuitous way, individuals as homogenous as

possible” (Bourdieu, 1986, p.250). This section begins with a discussion of

what was meant by ‘like’ and ‘unlike’ others from the perspective of

interviewees and how and whether parents were able to identify those who

were ‘like’ them in practices, tastes and therefore social position in online

settings. This was explored in terms of the use of different mediums of online

peer support, where no differences were found, except in the use of blogs,

discussed above.

When asked about whether other parents in an online peer support

forum were ‘like’ them or not, eight interviewees, with children of all ages,

described how other parents of children with Rett syndrome or serious

health problems were similar to them in that they experienced the same

lifeworld. This was seen as distinct from the lifeworld of parents of children

without serious health problems or disabilities. All of the interviewees who

cited this ‘likeness’ had school-age or pre-school age children.

So I’m feeling less isolated knowing that there’s other people who deal

with the same complicated, crazy things that you do

[Interviewee #76, mother in her 40s of a 5-year-old girl with Rett

syndrome, diagnosed 3 years ago].

For one interviewee, this was closely connected to the sense of biographical

disruption and grief discussed earlier, and provided a kind of social

benchmarking for acceptable emotional responses to the diagnosis.

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[JH: And do you find that the this site is a sort of good place to kind of

spend time with other parents um sort of if you’re feeling a bit isolated or

or wanting to kind of socialise with other parents who who are more

understanding of of your situation?] Definitely because I think only other

parents can understand what you’re going through. Your own family can’t

and I think that’s um a common factor. […] Even the specialists can’t

understand it unless they’ve got something similar going on […] and if you

put you know if you if you’re feeling down I personally can’t post

something about when I’m feeling down erm but sometimes it helps to

know that somebody else is going through that and what you’re going

through. [JH: Mm hm] You know, uh u’ a form of grief. [JH: Yeah.] Is

normal.

[Interviewee #25, mother in her 40s of an 8-year-old-girl with Rett

syndrome, diagnosed six years ago]

However it should be noted that this was by no means a unanimously

held view among interviewees with children of this age. It is also notable that

none of the parents of adult children expressed this attitude about other

parents using online peer support sites, a finding that is explored in more

detail in the final section of this chapter.

Answers to more direct questioning about whether other parents had

a similar ‘social background’ were illuminating. Interestingly, in a finding that

recalls some of the early research into the potential of the Internet as socially

levelling, many parents reported finding it difficult – to a certain extent - to

assess the social backgrounds of other parents, even within Facebook groups

where online profiles were visible. This sense of social background could be

missing across a number of different, relevant aspects and the lack of

information could work both ways.

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They wouldn’t know that I I was a single parent by that posting, you

know, so, u’ how would I know other people? Some people have got

their own pictures, some have got pictures of a whole group of Rett

people on a fundraising thing or I’ve got no idea when somebody says,

‘oh, I’ve got an older girl […] ‘but you’ve got no idea when someone

says, ‘my daughter this’’, I said [?] it could be a five year old dealing

with seizures, it could be a fifteen year old, or a twenty year old, I don’t

know whether they’re in the middle of nowhere, stuck, you know,

isolated in family situations with support, cos you know what? Those

forums don’t give you that information, that’s when you realise,

although you think you’re on an open forum where people are

prepared to discuss, no they’re not, they’re doing what I’m doing,

they’re posting when they want to post, when it’s appropriate to post.

Nobody’s got any clue that I’m a single parent

[Interviewee #174, mother in her 40s of a 14-year-old young woman

with Rett syndrome, formally diagnosed eight years ago although

mother realised 12 years ago]

Interviewees found it difficult – perhaps socially inappropriate - to discuss

the impact of social background on their propensity to ‘gel’ with other people.

However, in the following account some interesting points were made about

the difficulty of differentiating between people of different social

backgrounds in an online group setting. However this was ultimately

reframed by the interviewee in terms of ‘having an affinity’, which she argued

was not necessarily related to class, but was strongly suggestive having a

shared habitus, which may not map directly onto socioeconomic background,

but may reflect it to a certain extent (see discussions in Chapter 3).

I don’t, uh- although I would say that perhaps on a face-to-face you

might gel more to a similar – I don’t want to sound snobbish if I say a

similar class or a – [pause] it’s not quite that, I guess you just gel with

certain people don’t you? [JH: Yeah, yeah, yeah.] Um that online you

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might not ch – because you’re not meeting them face to face [JH: Ok,

yeah] you might gel differently [JH: Ok] I suppose is a way of saying it.

[JH: Why, why do you think that is?] I don’t know, is it just we have a

ne- I don’t know, for me I just know I like someone or I don’t like

someone so I would just gravitate to someone who I seem to quite like

if that makes sense. Whereas when you’re perhaps gelling on a, on an

online community it’s slightly different isn’t it [JH: Mm] because you’re

not meeting – you’ve not got the eye contact and the body language,

you’re missing all of that so you might just gel with that person

because you like what they say or um, you, you’re going through a

similar thing but you could meet them face-to-face and think, ‘oh my

God, I don’t like you’ [JH: yeah, yeah] I don’t know [laughs] it’s [JH: and

you won’t – you wouldn’t be able to tell necessarily you think from,

from the online contact things that you might] No, [JH: pick up] no I

don’t think so because I think – when somebody’s talking you pick up

different things – in their voice that you can’t pick up when

somebody’s typing […] [JH: yeah. And in terms of – if people are

similar to you in terms of background, social background and so on, do

you think that’s something you might pick up more face-to-face than

on, than on groups, or do you think it’s something that comes across

on] I don’t know [JH: groups anyway] I don’t think it particularly –

unless they’re baring their souls which we know lots of them do

[laughs] it might not come across on a social networking site, I think

it’s more likely to come across if you’re face-to-face perhaps just. Um,

but – yes, I know a couple of Rett families who I gel with who perhaps

aren’t the same social background or whatever. Uh, I don’t know

[laughs] [JH: But there’s something you feel they’re kind of a kindred

spirit in another way, or] Well, probably, I don’t know, probably uh, I

don’t know really – yes, difficult [JH: it’s difficult to say, some people

you like, some people you] yes, yes, I think it does just come down to

that really and you just gravitate to people that you’ve got an affinity

with in some way.

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[Interviewee #28, mother in her 50s of a 12-year-old girl with Rett

syndrome, diagnosed 8 years ago]

Fifteen interviewees described other users of an online peer support source

differing from them in some way (this was usually in relation to Facebook

Groups, the most used source of online support). This could include aspects

already touched upon, such as age and severity of health problems of a child.

For some parents, access to ‘unlike’ others was a positive advantage, for

example as a source of bridging social capital between less experienced

parents of younger children and parents with older children and more

experience. However there were also aspects of preferences and choices,

which are argued below to be expressions of habitus. These are explored in

the final section of this chapter in terms of how they ‘fitted’ or jarred with

different specific online peer support subfields.

As argued above, over time parents would narrow their social

networks to trusted allies, sometimes including other parents with whom

they felt they had ‘something in common’ or an ‘affinity’. As reported in

Chapter 5, the use of blogs was differentiated by income as well as age. These

findings were reflected in interview results, where wealthier and more

educated parents who wrote or read blogs either did not engage with other

forums or described feeling a particular affinity with bloggers rather than

people posting on other online platforms.

Um, and I quite like her... she's got some lovely pictures and she's got

some favourite quotes and um (long pause, sound of keyboard) I like that

sh- sh- that this is about... (drinking tea) her thoughts and feeling and

experiences and they're, they're very well written. […] [Crying] So I sort of

feel like you can find these kindred spirits. That you don't know each

other (sound of reaching for tissues) but you're kindred anyway.

[Interviewee #118, mother in her 30s of a 4-year old girl with Rett

syndrome, diagnosed a year ago]

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However, these interviewees could also find themselves moving

through a range of online support spaces as they discovered different sources

of support, which may more or less reflect their habitus. There were also

differences in how parents of older children engaged with many online

platforms that – at least among survey respondents – tended to be used

significantly more by younger than by older parents. This relationship was

particularly strong in terms of the differentiation of peer support Facebook

groups. These were popular sources of information and support and to a

certain extent, difficult to avoid entirely if one wished to keep abreast of

current developments and research, which was important to all interviewees.

6.2.5 Fits and misfits between interviewees’ habitus and forms of

habitus expressed on online peer support subfields

This final section explores aspects of habitus fit and misfit between

interviewees and different online peer support sites they had visited. This

was expressed in terms of how or even whether such spaces continued to be

used over the longer term, following initial contact and use. Four areas

emerged from interview data as pertinent when interviewees considered

their fit with an online peer support subfield. These were parenting practices,

digital taste, emotional expression and illness narratives.

Parenting practices

Despite the difficulty of explicitly identifying people’s social backgrounds,

there were aspects of taste and parenting practices that were analogous to

Bourdieu’s conceptualisation of social position within social space in

Distinction (Bourdieu, 1984). One key differentiating factor was

disagreements about parenting practices, which were raised by thirteen

interviewees and mostly related to some Facebook groups, or unspecified

peer support sites. For example, these related to differences in terms of

decisions about a range of topics, including medication, respite, when to take

your child to hospital, whether or not to go ahead with a second pregnancy

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with a foetus diagnosed with Rett syndrome, diet, and the use of dietary

supplements.

there are some families that are on multiple treatments but other

families that’s decided not to give um medication to their children.

Um, and on the [Facebook Group] families have vigorously disagreed

about both both sides of the opinion. Um, you know particularly if

their child is struggling severely with epilepsy. Um and I remember

somebody posting about how they wanted just to enjoy, enjoy what

their child could do and the life that they could have and I really

understood that post. But somebody else, whose child was going

through a a erm a lot of hospital treatment, found it offensive because

their child was really struggling and was really ill.

[Interviewee #25, mother in her 40s of an 8-year-old-girl with Rett

syndrome, diagnosed six years ago]

Only one interviewee described encountering these differences when

reading a blog, which was one of her reasons for providing a counter-

narrative in her own blog. The blog was American and her observations

reflect wider differences between discourses around religion, and children as

‘gifts’ that were also raised by two other interviewees in relation to their

contacts with American Facebook ‘Friends’ with children with Rett

syndrome.

I think, you know, the other reason, of course, that I started the blog,

that I should have said when I did my search for blogs about Rett

syndrome or blogs about children with special needs, I found a heck of

a lot of stuff that was all very sweet and lovely and two-dimensional

and… you know, some of it, there was, you know, it was completely

unobjectionable but I just didn’t find it quite enough and I thought I

wish I knew a bit more about, you know, some of the stuff that’s

difficult, you know, I find life difficult, does anybody else find life

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difficult? [JH: Yeah yeah yeah] Is it just me or does everybody just look

at their child and feel completely blessed to have, you know, such a,

such a gift, you know? [laughs] Um and I, yeah I found it quite isolating

that I, you know, that I felt, to begin with I was struggling, I think, I

hope it comes across on my blog how much I love my daughter but

also that I really struggle with all sort of things um and I just wanted

to kind of give voice to that and also counter – yes, I suppose I was, in

my own little way, even though I didn’t what, you know, whether

anyone would much read it you know I was sort of expressing my own

frustration, I think, really than… there was a lot of stuff out there as

well, particularly emanating from America you know, along the lines

of, you know, God gives special children to special parents, kind of

thing you know and I just wanted to, to bust the myth of parents of

children with special needs being special, I suppose that […] you

know, there’s nothing special about it, you just deal with what you’ve

gotta deal with.

[Interviewee #76, mother in her 40s of a 5-year-old girl with Rett

syndrome, diagnosed 3 years ago].

Of the two interviewees who wrote blogs, only one had

experienced a criticism from another parent about her parenting practices.

Um, I did have a message once from somebody, who’d left, you know,

left a comment left on a blog post, saying, that she thought it was very

sad that I was so negative but there’s been very little of that kind of

thing. I’m amazed really, gi- u- knowing what the online world is like

[…] it wouldn’t have surprised me if I’d had you know people, telling

that you know, I just needed to pull myself together or stop whinging

or you know realise that, you things could be much worse or

whatever, but everyone’s been really polite [laughs]

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[Interviewee #76, mother in her 40s of a 5-year-old girl with Rett

syndrome, diagnosed 3 years ago].

These differences are important because they demonstrate the

different kinds of experiences of online support by wealthier and younger

parents who were significantly more likely to read blogs in the wider sample

of survey respondents. In fact two interviewees in this group had decided

either to withdraw from reading Facebook groups altogether or had never

used them, so were – at least for a while – solely reading blogs, and therefore

experiencing far less exposure to conflicting parenting practices and tastes, at

least within the UK blogosphere.

Digital taste

As noted in Chapter 2, there has been a shift in recent literature from

demographically-deterministic descriptions of use of the Internet to

exploring clusters of attitudes, for instance in the ‘cultures of the Internet’

described by Dutton and Blank (2013). A key differentiating factor among

interviewees seemed to reflect a form of digital taste, expressed through a

preference for either information-based interactions or more emotionally-

based, sociable interactions. The first form of interaction was more likely on

older peer support platforms, such as email groups, which reflected the styles

of interaction used in the pre-participatory web. The second form was more

closely tied to the forms of peer support provided on social media platforms,

such as Facebook. This could therefore lead to habitus mismatches between

platform and digital taste, as these excerpts show.

I get a bit fed up with it if I’m honest [JH: Ok] I get fed up with the

things people post [JH: Do you?] […] You know I don’t need to know

your child’s just – uh – had a spoonful of medicine – I, I, I get – yeah – I

get a bit [Laughs] [JH: Do you find it goes into quite a lot of mundane?]

Well I think some people are just on there constantly [JH: Ok] posting

everything about their life [JH: Yeah] and that isn’t for me [JH: No, no]

If they just used it to ask questions and people answer rather than

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keep posting, oh, you know, ‘my girl’s in hospital again’ [JH: Yeah] I

don’t know really [JH: Yeah] [Sighs] [JH: Yeah, so you’d sort of prefer]

But that’s me [JH:Yeah] D- do you see what I mean [JH: Yeah, of

course] and somebody else might like the fact that they know what

every Rett girl is up to constantly but for me I don’t need that.

[Interviewee #28, mother in her 50s of a 12-year-old girl with Rett

syndrome, diagnosed 8 years ago]

[JH: let’s look then at the, the one the other one that you stopped

using, the [email group], what what happened with those? What’s

what’s your experience been with those?] Um, [sighs] it was a quite

serious and of course you know it is for fact-finding and and I don’t I

just found it quite, automated

[Interviewee #75, mother in her 40s of a 14-year-old girl with Rett

syndrome, diagnosed 10 years ago].

Although older interviewees tended to prefer information-based

communications, some younger parents also expressed a preference for this

kind of interaction too, suggesting a difference in habitus that was not

socially determined, but may partly relate to the wider structural differences

between generations. A related aspect was interviewees’ willingness to share

their feelings, and the links between illness narratives and biographical

disruption, which are discussed in the following subsections.

Emotional expression

Parents differed in terms of what they were prepared to share online,

particularly when they were struggling to cope. This varied along a

continuum from parents for whom this was unthinkable to those who had no

concerns at all about sharing their feelings online. This was interesting

because for both sets of interviewees there was no distinction drawn

between privately accessible and public sites. This may however reflect the

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lack of anonymity available on most of the online sources of peer support

used by this group of parents, particularly Facebook.

For some parents, this involved differences in terms of using online

peer support sites as a place to ‘vent’ or ‘let off steam’ when experiencing

something frustrating, like a problem with a local service.

[JH: Ok. So at the moment, as as it stands and the groups and the sites

that you know, you don’t think there’s anywhere you could kind of go

to let off steam that would be in a kind of private…] Yeah. I would do

that privately. Um, also because I kind of feel weird about doing that

pu- publically. [JH: Yeah] um, [JH: Ok, so it’s something you might not

do even if there were spaces to, to] That’s it. That’s it exactly.

[Interviewee #118, mother in her 30s of a 4-year old girl with Rett

syndrome, diagnosed a year ago]

We did, I think it was on the Rett Shared page actually, we did, we did

have a um, a rant thread [JH: Oh ok, yeah] and it was just one thread

that you could just add your ‘AAAAARGGGH!’ to, if people wanted to

[JH: (laughs)] to just have a moan and no one would comment on it, it

was just you could ‘rrrrrgggh!’ Let off steam on the keypad and that

was your rant thread [laughs], which was quite good

[Interviewee #75, mother in her 40s of a 14-year-old girl with Rett

syndrome, diagnosed 10 years ago].

Differences in propensity to share emotional experiences online

could be related to the strength of ties with people in an online environment

versus those in personal relationships offline.

I mean it’s like anything, you know, you’ve you’ve got friends that you

will, you’ve got work colleagues and you’ll sit and chat about what

happened on the telly last night and where you done, where where did

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you go at the weekend, but you wouldn’t necessarily tell them that, I

don’t know, that you’ve having a nervous breakdown or [laughs] you

know, but your very close friends, you might well tell them that so I

suppose it’s the same as in real life, isn’t it? [JH: Yeah, so they’re,

they’re almost more like colleagues in a way, in terms of the kind of, u’

u’ sort of, [inhales] um, conversations that people expect to have with

each other in those kinds of] Yes. Some of them can be personal about

your child but not so much personal about yourself.

[Interviewee #75, mother in her 40s of a 14-year-old girl with Rett

syndrome, diagnosed 10 years ago].

However for other parents a reluctance to share emotional

experiences online appeared to reflect an overarching emotional habitus that

applied equally online and offline, learned through family socialisation.

I wouldn’t ever particularly say we’re having a rough phase. I, uh, I

don’t know because that’s just me because I feel I have to cope with

my lot in life and not keep telling everybody because again, I suppose

it’s the way I was brought up – not to wear your heart on your sleeve.

If somebody says to you, ‘how are you today?’ you say, ‘oh I’m ok

thank you.’ Because people don’t want to hear you say, ‘oh well

actually, I’ve got this pain here and I’ve got a headache and my thumb

hurts,’ You know, people get fed up with you. So I think I tend to – uh –

always come across as quite cheerful and coping even if I’m not.

[Interviewee #28, mother in her 50s of a 12-year-old girl with Rett

syndrome, diagnosed 8 years ago]

Propensity to express one’s emotions was not related to educational

level among interviewees. However, it bore some relation to age. Although

some parents in each age group described themselves as guarded online, no

parent interviewees in their 50s described themselves as ‘very open’ online

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or willing to expose themselves at all. By contrast, parents in their 30s and

40s occupied a range of positions, from not sharing any emotion at all

through some willingness to risk some exposure online to those who had no

qualms about being very open online.

Emotional expression was also closely related to concerns about

‘scaring’ parents of recently-diagnosed children and the kind of illness

narrative adopted, explored at the end of this section, where some parents

reported not sharing how they felt because they wanted to avoid adding

‘negative’, chaotic posts to online peer support forums.

Illness narratives

As discussed in section 6.1, older interviewees talked about having reached a

point of repair in terms of the biographical disruption experienced with

receiving their daughter’s diagnosis. A key point of fit between individual and

online subfield habitus related to the perceived illness narratives on an

online subfield. Some illness narratives that parents described encountering

on forums were similar to the ‘chaos’ narrative described by Arthur W. Frank

in The Wounded Storyteller.

Chaos is the opposite of restitution: its plot imagines life never getting

better. Stories are chaotic in their absence of narrative order […] are

told as the storyteller experiences life […] The lack of any coherent

sequence is an initial reason why […they] are so hard to hear

(Frank, 1995, p. 97)

In its most extreme form, this involved a series of posts criticising an

organisation’s research into a cure and the length of time it would take, which

were effectively silenced with sanctions applied to the poster, who was

perceived to have broken an unspoken rule meaning sanctions had to be

applied.

he was able to splurge everything. People don’t do that and actually

look at look at everybody’s reaction when he did [JB: Yeah, and what

209

were they?] Block him, I blocked, don’t do this I’ve heard that he’s

spouted off, I’ve blocked him, please ignore his, please du-de-du-deor

is it like my reaction of look, you r’ you know, I empathise with you but

you really shouldn’t be doing it so is that an element of why some

people hold back? [JB: Mm. So you think people are kind of i-in a way

they’re kind of sent to, sent to Coventry and ignored and blocked and,

that kind of thing (?) happens?] They don’t want to hear his point of

view

[Interviewee #174, mother in her 40s of a 14-year-old young woman

with Rett syndrome, formally diagnosed eight years ago although

mother realised 12 years ago]

The above account was a strong illustration how a series of sanctions

were applied to somebody who had posted something considered too chaotic

and too negative by other members. One interviewee reported that other

members of a group had told her they had blocked33 this individual. Although

Facebook argue that someone is not notified that they are blocked, it will

become evident if they ever try to engage with somebody who has blocked

them.

However, a subtler form of chaos narrative could be in the form of what

was described above as helpful to some parents: ‘letting off steam’, ‘ranting’

or ‘venting’, which was like an unresolved story. However, for one

interviewee, reading these kinds of posts led to them reducing or stopping

their visits to the site in question.

I think there’s too much um slanging [laugh] criticism about this and that.

It sounds like people just seem to be moaning a lot. [JH: OK. What what

sorts of of things of that sort of people complaining to to each other or

33 Blocking someone on Facebook involves ‘unfriending’ someone and means they can’t start conversations or see things that you post on your own profile. In addition, people who are blocked cannot tag someone in a picture, invite them to events or groups or add someone as a friend. However, interactions in groups can still be seen. (https://en-gb.facebook.com/help/290450221052800)

210

about situations that they’re in. What sort of thing?] Er, mainly about

health professionals being unsympathetic or the system is very slow and

they have to spend a lot of time waiting in the hospital. Things like that.

[JH: OK. Um so does that does that sort of affect how you use the group, do

you think?] Yes, I think I tend not to go on it because it’s just people

moaning about things rather than actually asking for advice or being

supportive to each other.

[Interviewee #116, mother in her 50s of a 20-year-old woman with Rett

syndrome, diagnosed 17 years ago]

However, for other parents negative comments could include other

parents sharing their feelings with one another, which appears to relate back

to the propensity toward emotional expression online discussed above.

but I think because often people are too bogged down into telling

everyone about their daily life and then people say, ‘oh, poor you, oh,

I’m really sorry, you know, oh, we’ve had that trouble too,’ and then I

think, ‘oh, for goodness sake,’ I think sometimes - that’s what I – that’s

the point I’d like to make, I think sometimes it’s all too negative,

there’s not enough positives on there and I suppose I’m a positive

person so I would rather post something that’s positive than to say,

‘oh, I’m having trouble with [my daughter], she’s having episodes and I

don’t know what they are, can anybody help me?’ [JH: So does that, is

that sort of how you’ll decide to post, part of the decision you make in

terms of what you] I think so [JH: posting (inaudible)] Yes [JH: Yeah.

Post so, it’s sort of, some progress really with this] Yes. Yes [JH: yeah.

Ok.] Because I think ultimately that’s what most people look for -

people want hope

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[Interviewee #28, mother in her 50s of a 12-year-old girl with Rett

syndrome, diagnosed 8 years ago]

This put some parents’ preferences in direct opposition to other

parents’ needs. However one parent noted how initially ‘negative’ posts

about facing a problem could be turned into co-created positive narratives

with input from others. This was like the collaborative problem solving posts

described by Huws and colleagues (2001) in Chapter 2.

I have to say that it’s somewhere you turn to when things, as you say,

are, are going wrong or something new’s cropped up and it’s not

working out, it’s [laughing] rarely somewhere you go when you’re

saying, ‘this has gone really well’ [laughs] [JH: yeah, yeah, ok] That’s a

shame really, cos we we do tend to use it more as a, ‘oh God, I can’t

cope with this anymore,’ but, saying that when, someone may put a

post that’s quite a negative – something that they’re going through

that’s quite negative, if you’ve had that positive experience you can

then reply to them and say, ‘have you tried this, this is brilliant’ um,

you know and impart some more positive advice

[Interviewee #75, mother in her 40s of a 14-year-old girl with Rett

syndrome, diagnosed 10 years ago].

Some interviewees described deliberately posting more positive,

counter-narratives in response to more chaotic or ‘negative’ narratives or a

perception of there being too many ‘negative’ posts overall on a forum. This

involved some creation and co-creation of positive presentation of their

children, which some parents noted were also missing from other sources,

such as charities’ literature. This was like Jones and Lewis’ (2001) findings,

where parents of people with Down’s syndrome posted to celebrate

achievements and to present their children as children first.

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another time when there was something really negative […] I left a a

few posts cos I don’t wanna be seen to be ca’ but I put up […] [a

picture] of my girl having fun and they’d they’d put all the negatives

about their child and I said, um, this is a child that has […] [serious

health problems] now look at the child. That that’s that’s the definition

of her condition [JH: yeah, yeah and this is her] and this is her and you

you know what it was the same positive mums, yeah, aren’t our girls

beautiful when they smile.

[Interviewee #174, mother in her 40s of a 14-year-old young woman

with Rett syndrome, formally diagnosed eight years ago although

mother realised 12 years ago]

As discussed in the next chapter, the positions taken by rival charities

were also reflected in the kinds of illness narratives shared online, and could

become a focus for struggles for symbolic capital expressed through conflict

within some online subfields.

6.3 Interpreting the interplay between micro practices and

structural differences in online information and support seeking

This chapter has explored the differentiated use of online support sites that

was suggested by the survey findings reported in Chapter 5. By exploring

parents’ use of online support and information in context, it has provided a

richer picture of how age of respondent, age of child and time since diagnosis

relate to wider differences in expertise, access to social capital resources,

stages of biographical disruption and the changing care needs of children and

adults with Rett syndrome. This was a crucial finding as it recontextualises

existing literature that discusses digital inequalities in seeking online

information by providing a coherent account of how these multiple aspects of

parents’ lives structure the kinds of support they need. By including parents

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who did not have access to the Internet at the time of their diagnosis, it also

shows how similar kinds of information seeking occurred across a wider and

changing social and technological background, as well as in a changing

research environment. The inclusion of parents’ accounts alongside a survey

has therefore provided a more three-dimensional picture of how support and

information needs are dynamic and changing over time, while also occurring

within a wider and changing social and technological context. In particular,

this suggests that although parents of different ages use online support in

different ways, this reflects accumulation of expertise and social capital

resources, with online resources used in a more targeted way over time,

rather than an impoverished level of use of the Internet, at least among the

parents interviewed here, who were aged up to 58 years old.

The second section explored how the ‘fit’ between online peer support

subfields varied for interviewees who held wider forms of cultural and social

capital and differing habitus. Although the survey found no differences in

ever having used generic online sources of support and advice, there was

some indication of a differentiated use of and prioritisation of different

sources of support. Thus, where preferred sources of information were

discussed, interviewees with the least education were more likely to seek

help in solving a new issue primarily through posting on a peer support

forum, while parents with a higher education qualification were more likely

to seek primary sources of information first. This finding was speculative, but

merits further exploration in future research. Having existing preferred social

capital sources also influenced the use of online peer support subfields. In

deciding between using different online subfields, parents’ tastes and

preferences appeared to guide them. These were indicative of wider habitus

and included differences in parenting practices, digital taste, emotional

expression and the use of different illness narratives, the latter appearing to

reflect the level of biographical disruption experienced by that parent at that

time.

Together these findings suggest that carers’ full quotient of cultural

capital, social capital, and habitus influenced their use of online sources of

support and information. Although there was some evidence that the use of

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online support could provide some bridging capital to parents who did not

possess the same levels of cultural capital, the differentiated use of blogs

described in Chapter 5 and the exclusive use of blogs by some parents to

share expertise suggested there was evidence of the existence of some elite

social spaces online. Taken together with the suggestive findings about

information-seeking strategies, it is possible that parents with greater

education may be able to access more sources of primary information, such

as research, and to access information about caring strategies in an

environment with less conflict, where shared habitus may be reflected in

similar parenting practices and tastes.

The impact of such differences will be explored further in the next

chapter in terms of how online peer support subfields can be sites of struggle

for symbolic power in wider fields and how parents’ possession of valuable

‘goods’ and cultural and social capital influences the symbolic power they can

gain in wider caring fields.

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Chapter 7. ‘Playing the game’ – symbolic capital online

and within wider caring fields

This chapter widens the lens of this research to explore the position of online

support and information seeking as they relate to wider symbolic and

structural power contexts. In section 7.1 I question the depiction of online

peer support sites as inherently democratic by some commentators (see

Chapter 2), using as an example how certain online subfields where peers can

exchange information appear to reflect existing institutional power

structures and broader digital inequalities. The bulk of this chapter explores

the micro aspects of research question 4, specifically whether wealthier,

younger or more educated parents accrued benefits from online support that

were not sufficiently explored by survey results reported in Chapter 5.

Section 7.2 picks up questions raised in Chapters 5 and 6 about whether

parents holding more cultural or economic capital were able to access a

wider range of sources of information online. This section also problematises

the notion of the existence of distinct ‘lay’ and institutional information in

silos online, arguing instead for a greater networked connectivity between

different online spaces. Finally, section 7.3 explores whether benefits gained

online are converted into symbolic power in wider caring fields, and whether

these benefits accrued inequitably. The chapter closes with a summary of the

role of online peer support sites within wider power structures. In Chapter 8

I bring these findings together with the findings described in Chapters 6 and

7 and reflect on what this research can contribute to the wider field

described in Chapters 2 and 3.

7.1 Symbolic power online: why some online support spaces are

more equal than others

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As discussed in Chapter 2, research into the use of online support by parents

of people with rare syndromes has either tended to treat all online peer

support sites as interchangeable or to explore one site to the exclusion of all

others, with only a few exceptions. As part of the exploration of how

individual habitus fits – or does not fit – with online subfield habitus, some

differences in symbolic power on two kinds of site were noted. In the

previous chapter I discussed misfits between online subfields with personal

habitus in terms of parenting practices, digital taste, emotional expression

and illness narratives. This section explores how the unequal distribution of

symbolic capital influenced parents’ use of two online support mediums: the

Facebook ‘Pages’ of organisations and parental blogs. These operated in

subtly different ways, but had similar impacts on the posting decisions

described by interviewees.

When parents discussed attempts to use organisational Facebook Pages

for peer support it was clear that the structure and use of these groups

influenced the ‘goods’ they could access there.

Yeah, yeah I tend to see what comes up in the Timeline. That’s what I

mean, I tend to avoid, like, not not avoid but not see the other messages

that are in there, like other section, whatever it’s called [laughs slightly]

[JH: Yeah, yeah I know what you mean cos there’s some that are sort of,

have got a higher profile haven’t they in there] Yeah [JH: cos I posted on it

myself and you go, ‘ooh, where’s my message gone?’ (laughs)] Yeah, I’ve

just I’ve just got it up, it’s called, ‘Recent posts by others on [Institutional

Facebook Page]’ and you don’t tend to go into that bit

[Interviewee #30, mother in her 30s of a 12-year-old girl with Rett

syndrome, diagnosed 9 years ago]

One parent discussed how when he had posted on one of these pages,

the reaction from peers was disappointing

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I posted about vaccinations. If they were safe for children with Rett's

Syndrome. There was only one response from another subscriber. She

was asking the same question as me […]The main limitation […] I have

found is the lack of feedback from the group on questions and queries

submitted through [the] Facebook [Page].

[Interviewee #84, father in his 30s of a 3-year-old girl with Rett

syndrome, diagnosed during the past year]

This led to this interviewee deciding not to post unless they were

engaging directly with the organisation rather than other parents. Another

interviewee described how she felt constrained in how she posted on a

charity’s Facebook Page. The distinction made between Facebook Groups and

Pages34 below is important because it demonstrates how the structuring of

pages within Facebook is recognised by some users and can encourage or

discourage different kinds of posting behaviours. This relates back to

arguments in Chapter 2 about the importance of considering how the

technology of the Internet may influence interactions online (Halford &

Carrigan, 2014; Kivits, 2013; Seale, 2005).

Um I probably wouldn’t let off steam as much on the [Charity

Facebook Page], sort of if, if I was that down I’d probably ring them

rather than being on their, you know, Facebook page ranting and

raving [JH: Yeah. What what do you think would happen if you did

post that kind of thing on that Page?] Um, probably not a lot but it’s

probably not the place to do it [laughs] [JH: Yeah, sure sure, is is so

that’s something you kind of, picked up from what people post and]

Yeah just things that [the charity] hasn’t necessarily, cos i-it’s not on

their their, it just seems because it’s run by professional – not

34 Facebook Pages are intended as ‘official profiles’ for businesses and brands, while Facebook groups “are the place for small group communication and for people to share their common interests and express their opinion” (https://www.facebook.com/notes/facebook/facebook-tips-whats-the-difference-between-a-facebook-page-and-group/324706977130) They are structured accordingly to foster these different forms of communication.

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professionals but do you know what I mean, it’s not, t’ cos they’re not

run by parents it’s more of a place where it’s a bit more formal [JH: Ok

sure] than it being a place where you can rant and rave [JH: Ok, so it’s

kind of more, more about the kind of practical support than maybe

emotional support in terms.] Yeah, i-it’s um it’s a Page rather than a

group, isn’t it, uh whichever way around it is

[Interviewee #30, mother in her 30s of a 12-year-old girl with Rett

syndrome, diagnosed 9 years ago]

For organisations’ Facebook Pages, responses were effectively limited

to reactions to the posts made by the organisational representative.

In the case of blogs, there were no places to post new topics so parents

could only respond to the blog topic. One interviewee described how this set

up a power imbalance, suggestive of symbolic power, which led to the

organisation or blogger effectively setting the agenda for what would be

discussed. As she describes, these were not places where parents were on an

‘equal footing’, but places where they were expected to react to, rather than

initiate, conversations.

And I do, I do go and look at them a lot, but I don’t post. But to be fair, I

don’t think that many people are posting [JH: No, I think you’re

probably right] I think that people are commenting, but they’re not…

starting the conversation, um, and I, I was aware that I wasn’t starting

any conversations, it’s now reflecting on it I realise nobody else is

either. Um, that’s quite interesting to me, why nobody’s starting the

conversations, unless it’s the charities making a comment or the

bloggers making a comment they then react to […] But maybe [people

are more likely to post on] a forum more like Mumsnet, where

everybody’s on equal footing because there is a bit of a power

dynamic here, that this is owned by the charity, run by the charity, so

it’s up to them to post. Owned by the blogger, their blog, so it’s up to

them to blog um and everyone else reacts. If there was something that

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had less of that power dynamic, where everybody felt like peers, um, I

would be more inclined to post [JH: Ok. Yeah, that’s a really interesting

point, yeah]. Yeah. Because I do feel like I have things to say, Um, and

I’m intrigued by the fact that I’ve never said them [JH: Yeah] [both

laugh] Yeah. But it occurs to me nobody else is either.

[Interviewee #118, mother in her 30s of a 4-year old girl with Rett

syndrome, diagnosed a year ago]

This is interesting because recent OxIS data suggests that a higher

proportion of wealthier groups write blogs (Dutton & Blank, 2013).

Therefore this greater power for bloggers to set the agenda in discussions on

their sites suggests an undemocratic process at work, and the privileging of

certain voices over others.

A second important factor was the use of broader, non-institutional

online peer support forums (e.g. Facebook Groups) as channels for promoting

specific ideological agendas. It will be recalled from Chapter 1 that there were

two charities that fundraised for a cure for Rett syndrome (one of these also

aimed to provide support) and another charity that focused on providing

support to parents. Parents involved with all three charities, either as

supporters or in more formal roles, were active on different online peer

support groups and contributed to discussions about fundraising. There was

an urgency expressed in some forums about fundraising for a cure and an

anxiety expressed by some parents that funds from cure research might be

diverted to funding for support for parents35. This context is important to

acknowledge as it serves to demonstrate how online peer support forums

acted to a certain extent as subfields to “experienc[e] and negotiate[e] fields”

(Sterne, 2005, p. 385), in this case, wider research and voluntary sector fields.

The disagreements between charities were sometimes expressed in

online support forums in ways that some interviewees described as quite

polarising. The parents I interviewed sometimes had a specific allegiance to a

particular charity, but four interviewees discussed supporting more than one

35 These observations came from interviewees’ accounts, but also from my own informal observations when using groups to post recruitment notices.

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charity. This could be reflected in a certain amount of disconnection between

the more polarised narratives expressed online and the more nuanced views

held by some interviewees privately.

there was a big um, there was a big hoo-ha last year about [two of the

charities], almost like, people were, making out that they were having

a war with each other and it’s just ridiculous, you know, and it was

like, ‘oh, you’re either [one charity] or you’re [the other]’ and I just do

not get involved in any of that, I completely refuse to be drawn either

way

[Interviewee #75, mother in her 40s of a 14-year-old girl with Rett

syndrome, diagnosed 10 years ago].

One interviewee was criticised for sharing a picture of a symbol of

support to one particular charity on an online peer support forum. It is

interesting to observe her account of how after she felt she had been

misrepresented she used distancing tactics, but ultimately decided to

withdraw her post, effectively meaning she had been silenced.

I posted [that] I had um bought [some merchandise from one of the

charities], um, I’d got that bought as a […] present, so I […] put it on

there, you know, showing it off basically and that was, that got lots of

mixed reactions to be honest [laughs] [JH: Really?] I had some people

saying it was um, it was really lovely and then had other people telling

me that they didn’t need [merchandise] to show that they had a child

with Rett syndrome […] they got quite aggressive and abusive actually

[JH: Really?] It really shocked me because we’re all parents dealing

with the same thing but they did get quite sort of, nasty [laughs] […] it

got out of control to be honest because it went back to how the group

was formed [and allegations about how they operate] and it got, like I

say, from this one tiny little post of me showing off [the merchandise]

it got quite out of control […] and it, yeah, it did get quite, I was like,

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‘hang on, I was only showing that, I have nothing to with

[organisation] I’m just posting [a picture of the merchandise I was

given] and that’s it’ […] and then they started getting quite sort of,

about money and stuff and I was like I’ve got nothing to do with [that

organisation] you know, I don’t I don’t know any of that side, […] and

then some of the [people from that organisation] stepped in and and I

think it ended up with about sort of 60 or 70 messages and I just left it

in the end cos I just thought, ‘well, it’s nothing to do with me now’ I

think I removed the picture by the end cos I just thought if, it’s not

worth it over a picture, you know.

[Interviewee not named here to avoid identification]

Overall then, there was a tendency for the habitus of certain online

spaces to reflect the habitus of those with the highest symbolic capital –

which could be held by those who ran the group, or had influence in wider

fields outside the group. This strongly suggests that some sources of online

support are actually inherently undemocratic. Production of content,

although feasible on such sites is actually constrained by existing structural

sources of power and features of the site that privilege certain accounts over

those of other parents. This supports my arguments in Chapter 2 that the

Internet is not an inherently democratic place to share and find information,

and that Bourdieu’s concepts of fields and symbolic capital can explain how

certain groups may gain advantages in this social sphere, as offline.

The next section of this chapter explores whether cultural and social

capital gained online is used to leverage unequal gains within online settings

and within wider caring fields for more privileged groups.

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7.2 Unequal gains? The role of online sources in accruing valuable

‘goods’

This section expands the findings reported in Chapter 5 about accessing

‘goods’ available on online peer support sites. As will be remembered, these

were largely differentiated by time-related variables (age of respondent, age

of child and years since diagnosis), except for emotional support, which was

more often reported by parents holding a higher education qualification.

However, survey responses were limited to questions asking about the use of

online support, and particularly online peer support. This reflected how my

own thinking had been influenced by the wider literature, which often

distinguished between ‘lay’ sources of health information and institutional

sources of health information. However, by listening to interviewees’

accounts it became clear that this distinction was problematic for a number

of reasons, some of which have emerged in discussions so far in this and the

previous chapter.

Firstly, this did not take into account the interrelation between multiple

sources of information and the use of social networking applications as ways

of linking to external sites. In interviews and records of online support

interviewees demonstrated how they used Facebook Groups – and

particularly charities’ Pages – to find links out to scientific sites and research

papers. Secondly, as described in Chapter 6, parents would seek information

across a range of more traditional, information-providing online media

(static websites) and ‘Participatory age’ social networking sites. Finally, some

parents reported having read parents’ summaries of scientific information

posted on peer sites. Therefore, for many parents, online peer support sites

were not necessarily distinct from other kinds of sites and their use fitted

into wider information-seeking strategies. This meant that in order to

understand the role of online peer support sites, I needed to widen my

understanding within interviews to how these fitted within the wider use of

the Internet as a source of information across both peer support sites and

other online contexts. This may explain the lack of convergence between

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survey findings and interview data, where survey data suggests little

existence of benefits accruing unequally to those with higher cultural or

economic capital. As noted in Chapters 5 and 6, this may reflect a difference

between information and support, where, as argued above and in the

previous chapter, parents sought information across peer online support and

static websites, as well as wider offline sources. Also, while the survey

specifically asked about decontextualised benefits accrued online, interview

data was able to shed light on how the use of online support and information

sources were embedded in the use of wider sources of information, both

online and offline.

This section explores two aspects of use that could shed more light on

different practices among parents holding different levels of cultural capital.

Firstly, how linguistic capital influenced the kinds of wider information

sources that were used. Secondly how the ‘goods’ gained online differed by

social group. These are discussed as they relate to quantitative findings

reported in Chapter 5.

7.2.1 The role of linguistic capital in accessing ‘goods’ online

As described in Chapter 3, linguistic capital is an important way of

differentiating oneself from others, and may lead to the effective exclusion of

people without commensurate linguistic capital from certain social settings.

As also argued in Chapter 3, linguistic capital may therefore affect the

accessibility of the range of online information sources available to parents of

people with Rett syndrome, particularly with regard to interpreting relevant

research and treatment developments. As described in Chapter 6, some

parents benefited from the bridging capital of other parents who were able to

synthesise and explain research in an accessible way on forums but were not

able to interrogate primary sources themselves. This section aims to explore

the impact of linguistic capital in the use of online sub-fields and how this

affected parents’ accumulation of ‘goods’ from a range of information

sources.

In all interviews, parents were asked if they had ever encountered

jargon or language they didn’t understand on any online peer support site.

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This information was available for all but three parents – one who had not

completed a full interview, the husband of interviewee #133, who didn’t tend

to use the Internet, and one parent whose answer was ambiguous. Given the

significance of research interpretation among this group of parents,

interviewees’ level of education was mapped against their level of

understanding of different online sources and a suggestive pattern emerged.

Interviewees holding postgraduate qualifications described

encountering sources of information where their linguistic capital was

adequate for reading most sources – certainly online peer support sites – and

was sometimes higher than that used on some sites, which in one case had

put one interviewee off from using a particular site.

Um... i-it's i- i- and q-quite badly written! (laughs) [JH: Mm, yeah] I sound

very pedantic, but a lot of it is quite hard to follow [JH: Yeah] It's got

spelling mistakes.

[Interviewee #118, mother in her 30s of a 4-year old girl with Rett

syndrome, diagnosed a year ago]

No parents in this education grouping described encountering a site

where they felt their linguistic capital was lower than the level of the group,

except for the parent from the UAE, who would need local abbreviations

explained on occasion.

Six parents who held qualifications below a postgraduate level

reported some difficulty with understanding jargon or language on a site.

This included the parent quoted in Chapter 6, who had a higher education

qualification but reported needing to rely on parents’ summaries of medical

research due to her lack of medical knowledge. The information presented on

a single site or group could vary in terms of linguistic complexity. Linguistic

capital was therefore part of the decision to read information posted online

and for one parent with a basic or secondary level of education, this would

influence the kinds of information she read on a particular site:

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if I hear of sort of some treatments that have been happening or you know

tests or trials or something that might be happening I might sort of, pop in

to see if they’re in plain English [laughs] like [?] if I can understand what’s

going on [JH: Yeah and so if they’re not then that tends to, to put you off?]

Yeah.

[Interviewee #30, mother in her 30s of a 12-year-old girl with Rett

syndrome, diagnosed 9 years ago]

Other parents in this group reported finding medical and scientific

jargon hard to understand. This had been accessed through following links to

professional forums, scientific blogs and research journals posted in

charities’ online email groups and pages.

sometimes they’ll, if a new paper’s come out they’ll publish it on the

website, which is great, but sometimes [laughing] I don’t understand a

word of it because it’s all medical jargon and I think, ‘oh,’ and I don’t

understand that

[Interviewee #75, mother in her 40s of a 14-year-old girl with Rett

syndrome, diagnosed 10 years ago].

However, for one parent with this level of education, it was only the names of

medicines that caused her any difficulty

Only time I struggle is when certain drug names are mentioned, we

are lucky [my daughter] isn’t on any serious medication

[Interviewee #194, mother in her 40s of a 12-year-old girl with Rett

syndrome, diagnosed 8 years ago]

Five parents, all of whom held a higher education qualification,

described how they could usually work out what something meant or would

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search online for a definition or ask other users of a site if they didn’t

understand a piece of language. For two parents (one in her 40s and one in

her 50s) this included colloquial acronyms

There might be some LOLs in all this new tech speak that’s the only

other thing probably that some of the colloquial stuff that I have never

come across. But you can normally interpret what the sentence means.

[Interviewee #86, mother in her 40s of a 13-year-old girl with Rett

syndrome, diagnosed 11 years ago]

The ability to look up information on the Internet alongside the use of

such groups and sites was important because it was a benefit of the

asynchronous nature of online sources of social capital, where an initial lack

of linguistic capital did not become a bar to participation as it might in a

synchronous form of communication. However, it is worth noting that none

of the parents with a basic or secondary level of education mentioned using

one of these strategies to ameliorate difficulties with understanding language

or jargon. This could relate to the potential differences in using more than

one source of information hinted at earlier, or to a relative level of confidence

in asking about jargon, which could possibly be related to possessing a

certain level of linguistic capital. This can only be a speculation in relation to

the data presented here, but could be a fruitful area for future research into

the social differentiation of the accessibility of different sources of

information.

It is worth noting that ten parents, spanning different educational

groups, described having no problem understanding the language on at least

some sites or groups that they used, meaning that level of education did not

act as a bar to understanding all the content seen on at least some sites. This

highlights an important limitation with the data presented above. This was

potential underlying differences in the kinds of information sought and read

online by different interviewees. It was therefore difficult to assess how, for

example, some interviewees might fare with more complex information than

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that presented on a particular site, or whether all parents had attempted to

read research articles. However, the differences highlighted above broadly

support the idea that many parents holding higher-level qualifications –

particularly post-graduates - are able to understand a wider range of

information presented on a wide range of sources and appear more likely to

use a range of strategies to interpret unknown jargon.

7.2.2 Accruing online ‘goods’

The uses of online sources for three kinds of advantages are explored next in

terms of how they may be differentiated by education, income and age. These

advantages are knowledge and expertise, economic capital, and emotional

support.

Accessing knowledge and expertise

As argued in the previous chapters, there were some hints that wealthier and

more educated parents may benefit more from the use of some forms of

online support. As found in Chapter 5, the use of blogs was differentiated by

income, with wealthier respondents more likely to have ever read a blog

related to caring for someone with Rett syndrome. In Chapter 6, and as

discussed above, some accounts suggested parents with a higher education

qualification (a proxy for cultural capital) may be more willing to draw upon

a range of primary sources of information without relying upon third party

interpretations, although with some medical topics this could be limited for

some parents in this educational bracket.

This subsection explores some of the wider social capital resources

that different groups of interviewees discussed drawing upon to build their

expertise in relation to caring for their child with Rett syndrome. As noted in

Chapter 6, this was particularly pertinent for older parents, who had accessed

offline resources before online resources were available to them. Data was

restricted to what was contained within the interviews and survey responses,

which may not reflect the full range of sources that interviewees had

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accessed. Survey data summarised in Table 7.1 showed that respondents

used a range of sources of support, both online and offline. Interviewees

mentioned using a range of other sources of information alongside online

support and information. This included books, magazines, telephoning

charities, attending events, reading charities’ newsletters and magazines,

other parents of people with Rett syndrome accessed outside online support

forums, specialist Rett clinics run through Rett UK and specialists at Great

Ormond Street Hospital.

As reported in Chapter 5, 63.2 per cent of people who had ever

used generic online support rated it as important to some degree. This was

lower than the percentage that rated the following sources of support as

important: local health professionals (90%), telephone support (81%), and

local group support (73%). Ninety-three per cent of those who had ever read

online peer support reported that they ‘probably’ or ‘definitely’ intended to

read online peer support again suggesting those who had read it considered

it an important source of support. However this may reflect the interests of

respondents motivated to participate in this research.

Table 7.1 Use of different modes of support by survey respondents

Source of support n %

Local health professional support 172 96.6%

Generic online support36 159 89.3%

Telephone support 150 82.4%

Local group support 142 80.2%

Online peer support37 127 66.8%38

36 Support and advice available from a range of online sources, not restricted to peers37 Support exchanged through peer messages on websites.38 This reflects percentage of all respondents, not just current Internet users. Among Internet users, use of online peer support was 71.3%

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As reported in Chapter 5, 72 per cent of respondents reported that

information and advice shared in online peer support sites had helped them

to solve problems. This was not significantly differentiated by income or

education, but by years since diagnosis, where it was found most useful by

parents whose children had been diagnosed fewer than seven years ago.

In interviews parents described using online support alongside other

sources of information and support, choosing according to the information

they were seeking. All interviewees, except Interviewee #133-H39 described

gaining some knowledge through online peer support. Six parents across all

age, income and education groups described having gained information

through online searches with an additional three having accessed sources of

further information through an online search (two described having done

both). Although parents discussed following links to research presented

online, only one parent mentioned having independent access to journals

(through her postgraduate course) and of using this access to explore

primary sources of research on Rett syndrome around the time of diagnosis.

Interviewees from across income, education and age groups reported

having used online peer support sites to gain certain kinds of information.

This included understanding the meaning of the diagnosis and prognosis or

gaining information to understand and interpret new behaviours and

symptoms. This reflected the use of online support sites as sources of ‘case

histories’ to understand prognosis outlined in the research carried out by

Schaffer and colleagues (2007) and Skinner & Schaffer (2006). Other kinds of

information found in online support groups across demographic groups

included useful caring strategies, information about services (excluding

children’s educational needs) and information about specialist equipment.

Twelve interviewees from a range of demographic groups described using

online peer support sites to keep up to date with new developments (expert

carer work) into therapies and treatments. This included research into a cure

but also promising treatments and information about symptom management.

39 This interviewee did not contribute in detail to a joint interview set up with his wife, but did mention using the Internet very little.

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There appeared to be some social differentiation in terms of

information gleaned online. However, this does not mean that other groups

did not seek them, but may reflect topics parents recalled during the

interview. Peer online support was used to gain medical information by three

parents, all of whom had a household income of over £70,000 and a higher

education qualification. The discussions and information described related to

managing a seizure (what to do in addition to calling an ambulance), deciding

whether a child was ill enough to take her to hospital and tapping into

medical expertise from parents with a medical background. Three

interviewees discussed finding information about special educational needs

online. All had school-age children, had household earnings of over £40,000

per year and held higher education qualifications. Interestingly, two parents

with basic or secondary education and school age children had some contact

with a Speech and Language Therapist in a Facebook Group, suggesting again

the possibility of accessing bridging social capital in Facebook Groups.

There were some differences among the use of different kinds of

support by parents of different ages, particularly those with adult children,

who had not used peer online support for ideas about day-to-day caring,

special educational needs and medical information. In terms of use of medical

information, there was some indication that this may relate to different

‘dispositions’ (habitus) toward peer-professional relationships. Of twelve

interviewees who expressed views about the relative importance of peer and

professional information, seven parents noted that peer expertise should be

considered ‘opinions’ and medical expertise should be trusted instead; three

of these parents were in their 50s or (two with adult children). Additionally

no parents in their 50s or with adult children endorsed views expressed by

some younger parents of younger children as to the relative value or greater

importance of peer information on some medical issues. For some parents of

adult children, this reflected a more ‘natural’ trust in doctors, which this

interviewee put down to age and which may reflect a generational difference

in habitus in relation to attitudes to health professionals.

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[JH: Ok, so if you if you need to know s’ about something in more de-

so, say, epilepsy medication] Yeah [JH: How would you go about

finding out about it initially?] Um… I feel really guilty in saying there’s

been a vague acceptance that what what the Doctor has said b’ g’ is is

ok [JH: Yeah yeah] and I, you know, I criticise u […] we criticise our

mothers [JH: Yeah] for seeing doctors and teachers and clergymen as

as the font all knowledge and you never ever um accept anything they

say, and here’s me saying, ‘oh well actually I just [laughing] accept it!’

[JH laughs] [laughs] so yeah, so that’s bad, isn’t it, you know, I think

that’s an age thing, I do genuinely think that’s an age thing

[Interviewee #132, mother in her 50s of a 28-year old woman with

Rett syndrome, diagnosed 17 years ago]

However, following the findings reported in Chapter 6, it is possible

this may also reflect a greater store of expertise and access to trusted sources

of information, including trusted medical and other professional allies.

The use of peer online support seemed very accessible as it was used

to gain information by parents from across the spectrums of age, education

and income and could provide access to some professional information,

research and links to external sources of information. However it is possible

that the concentration of use in this sample is due to the recruitment and

eligibility criteria of this study, which focused on charities and online peer

support forums, with all interviewees having recently used peer online

support. Therefore these sampling frames may over select parents who are

already actively engaged in seeking information and support. There was a

hint in this data that more educated and wealthier parents in this sample

sought information early to try to establish a diagnosis and seek information

about special educational needs. Nonetheless, two key aspects of this analysis

were supported by other, less tenuous findings. Firstly, the differences in how

more experienced parents use the Internet and other sources for support and

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information, which were described at the beginning of Chapter 6. Secondly,

the use of primary sources of information among more educated parents,

rather than relying upon summaries provided by third parties, also described

in Chapter 6, although there were limits to what some parents with a higher

education could understand in terms of medical research.

Economic capital

Nine interviewees described gaining some actual or potential economic

benefits from online peer support sites. As above in relation to alternative

sources of information, this was dependent upon interviewees raising this

within an interview and parents were not specifically questioned about this

benefit. This means the information presented here may underrepresent the

financial benefits experienced by all interviewees. This included both gaining

‘goods’ in the form of knowledge that had the potential or actually had been

converted into economic capital. This included learning about eligibility for

benefits and reductions to council tax, selling equipment, saving money on

equipment and dietary supplements, access to available funds and grants,

and accessing reports in support of funding for equipment written by

professionals.

Yeah I mean I was I was trying to get travel insurance for [my daughter],

um and two years ago we paid over £400 for her travel insurance and

then someone said to me, ‘oh you you know the Family Fund are now

doing a special deal for families like ours’, um at only £51 [JH: Oh wow] So

you know, that sort of information

[Interviewee #30, mother in her 30s of a 12-year-old girl with Rett

syndrome, diagnosed 9 years ago]

so um, funding for Eye-gaze computers, that’s a big deal, people talk about

that a lot online and.. um, yeah, hearing about, what other people have

been able to… do, so, for example, um, yeah th- there’s b- there was some

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sharing of um Speech and Language Therapy reports that were written in

support of funding for an eye-gaze computer that kind of thing

[Interviewee #76, mother in her 40s of a 5-year-old girl with Rett

syndrome, diagnosed 3 years ago].

These parents spanned the income groups and were represented in each

educational group. However only one of the five parents of adult children

mentioned having ever used an online peer support site to gain economic

capital.

When the type of benefit and whether it was a potential or actual

economic gain was explored, some interesting patterns emerged. For parents

on incomes below £30,000, two parents received an actual benefit (reduction

in council tax and reduction on the cost of a small needed item). Parents with

household incomes above £30,000 per year had increased their economic

capital through selling old equipment in an online peer support group, and

had accessed information about potential benefits (Disability Living

Allowance) that might be useful in the future, seen Speech and Language

Therapy Reports used to argue for statutory funding for an eye-gaze

computer, found out about and gained statutory funding to build a bedroom

extension and found a much reduced price for fish oil tablets, used regularly.

Although it is difficult to quantify how much each group benefitted from

online information, it appears that parents earning more money had received

greater lump sum benefits (e.g. the cost of building an extension) through

information gained online. However, there were parents within the lowest

household income group who discussed the benefits and statutory support

they were already claiming – so this may reflect a lack of prior knowledge

rather than differences in ability to gain the larger amounts of economic

capital available. For instance, one interviewee told me how the council had

paid for all the adaptations to her house and additional care for her daughter,

which enabled her to care for her daughter full-time.

In terms of educational differences, little emerged in terms of actual

benefits, with parents across the board gaining actual economic benefits of

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different kinds, although these did appear to reflect larger economic capital

gains for more educated parents.

Among parents of adult children and parents in their 50s, no actual

economic benefits were discussed in relation to information gained in online

peer support forums and only one potential benefit (Disability Living

Allowance) was mentioned as having been identified online. This may relate

to parents already having a stockpile of relevant expertise and having

potentially already having benefitted from such cost savings with information

from other sources.

There was therefore some suggestion – though speculative – that

wealthier, younger and more educated parents may be benefitting

disproportionately from economic capital gained through online sources.

This is an area worthy of further research as it may contribute to widening

inequalities between these groups. It is interesting that most interviewees

were accessing similar sites - except one parent who exclusively read blogs –

yet it was these groups that appeared most able to convert this expertise into

economic capital. This suggests that availability of information is not the key

factor here, but how this is used in wider fields.

Emotional and companionship support

As noted in Chapter 2, Ferlander’s (2007) notion of emotional support was

used here to describe the benefits of support gained online that could not be

captured in terms of Bourdieu’s capital benefits. In the survey, 84 per cent of

respondents who had used online support described that reading about other

parents’ experiences in online support sites made them feel less alone.

Fourteen interviewees also noted gaining this benefit from online peer

support. This was described in terms of not feeling alone and could apply to

reading an account from another parent as well as to interactions. This was

connected to the accounts described in Chapter 6 about parents of people

with Rett syndrome describing how they felt they were living in a different

lifeworld from other parents. These parents described feeling understood

and feeling less isolated as a result of reading about other parents’

experiences.

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It feels like genuine experience somebody's having. And because it's so

similar to your experience, um, it... (pause) makes you feel... less alone.

[Interviewee #118, mother in her 30s of a 4-year old girl with Rett

syndrome, diagnosed a year ago]

As soon as I was invited to join the group (by another Rett Mum), the

support was there pretty instantly.  As soon as I commented on something

or posted something the replies were always very supportive, welcoming,

warm and understanding.

[Interviewee #194, mother in her 40s of a 12-year-old girl with Rett

syndrome, diagnosed 8 years ago]

As noted in Chapter 5, experiencing this benefit was differentiated by

years since diagnosis, although as may be remembered, this was not in a

linear way. Among interviewees, two of the four parents of preschoolers, all

but one of the parents of school-age children and about two of the five

parents of adult children had experienced this benefit from online peer

support. These differences related to the reduced access to online peer

support for one of the preschooler’s parents, who was in the earlier stages of

building social capital. However, for the other parent it was an aspect that did

not emerge in her account, which focused far more on practical aspects of

support. For older parents, emotional support from any source was not

mentioned in the interview and may therefore relate to the reduced need for

support and navigation of the emotional aspects of the diagnosis related to

biographical disruption among older parents or a reduced propensity to seek

support overall as discussed in Chapter 6. It might also be related to the

stated perception of three of the five interviewees with adult children that

online forums were used mainly by parents of children, not adults, which was

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also supported by data among survey respondents, although this cannot be

used to generalise to all users of online support.

For the parents of adult children who did find emotional support

online, this benefit could be situation-specific. For one parent, who generally

did not seek support from other parents, a link to an American blog written

by a parent of a child of a similar age struck a chord.

this is by a parent […] her daughter, her 22-year-old daughter has got

Rett. And I read it, and I thought, “She lists things that I felt with [my

daughter]”, erm, and sort of, you know, she’s downstairs and she’s got the

baby monitor on, for her 22-year-old daughter, who is upstairs in her

bedroom watching telly. Erm, but then, what else she said, she was the

same as [my daughter] with her like, walking and everything, um and

then it’s her thoughts, and I thought, you know, this has gone through my

mind as well, that um don’t let anything happen to me because I’ve got to

be there to care for her, and don’t dare let her die young, because I can’t

bear to lose her, but don’t let her outlive me either, [Husband of 133: Mm]

because who’ll take care of her. So it really is, and I mean, [Husband of

133: Yeah] […] So, I don’t very often print things out, but I – as I started

reading it I thought, “That is”, you know, “It feels like me”.

[Interviewee #133 and husband, parents of an 18-year-old woman with

Rett syndrome, diagnosed 16 years ago]

For the other parent of an adult child this was a case of benefitting

from emotional support retrospectively, of being reassured that the way she

felt when her daughter was younger was ‘normal’:

[JH: have you ever found it helpful just to read about other parents’

experiences on it or or not really?] Yes. Yes, I think reading other peoples’

experience is always helpful because it’s it’s you feel less alone, even now

even after being a carer for 20-something years you still feel oh god all

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those feelings I had eighteen years ago, it wasn’t just me then, yes, feeling

guilty not looking after [my daughter] not doing something for her, mm.

[JH: Yeah. That’s really interesting. So it’s it’s it’s not so much how you feel

now but it’s sort of looking back and and comparing yourself to how you

felt then?] Yes.

[Interviewee #116, mother in her 50s with an adult daughter with Rett

syndrome, diagnosed 17 years ago].

As reported in Chapter 5, significantly more parents who held higher

education qualifications experienced feeling less alone when reading about

other parents’ experiences. There was no evidence in interviews to shed light

on this intriguing finding, with interviewees from across different

educational groups all reporting this benefit. It is possible that this may relate

to reading blogs where one’s parenting practices are supported, but this was

not possible to ascertain from this data.

All interviewees were asked about experiencing Ferlander’s notion of

‘companionship’ – “spending social time with others, i.e. leisure time”

(Ferlander, 2007) - as a form of support in online peer support sites. For

other parents this existed outside the group, because they had met up with

some of the parents who used the forum, but here the focus was on

companionship experienced purely online. This was relatively rare and

tended to take the form of wider conversation not focused on Rett syndrome.

Only five interviewees reported experiencing this benefit online.

[JH: And what is that you that you particularly like about it?] Um, well

sometimes it’s just the silly bantering about [laughs] anything, about

the weather, about about anything really.

[Interviewee #116, mother of a 20-year old woman with Rett

syndrome, diagnosed 17 years ago]

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so she posted some more recent photos, saying how much she’s grown

up and I just got I commented, cos actually [?] they were gorgeous, she

was so pretty and I just went, ‘I love her hair,’ it was completely

irrelevant, nothing to do with Rett’s at all

[Interviewee #193, mother of a four-year-old girl with Rett syndrome,

diagnosed 2 years ago]

Interviewees from across income, education and age groups (although

predominantly those aged in their 30s and 40s with school-age children)

reported having experienced a companionship benefit from visiting an online

support group or site.

7.3 ‘What do I know, I’m just a mother’: converting online ‘goods’

into symbolic power in wider caring fields

This section explores social differentiation in how capitals gained online are

converted into symbolic capital in wider caring fields. As noted in Chapter 2,

parents faced a number of challenges within wider fields including medicine,

education and social care. These included gaining a diagnosis from medical

professionals and access to other ‘goods’ and resources in these fields, such

as access to certain kinds of treatments and therapies. A vivid example of the

less powerful position held, even by parents with greater initial cultural

capital through education, was given in the following account by a parent

who held a Masters qualification in a Psychology-related topic.

When [my daughter], before she had her diagnosis... was going

through a regression... I... was told that she was Autistic, most likely

[JH: Mm-hm] Which I did not believe [JH: yeah] Um... I like to think I

know enough about... er Autism or you know - psychological things

generally [JH: Mm-hm] and I'm her mum [JH: Yeah] But... eh - when I

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said I didn't think it was Autism, basically what I was told was, um,

yeah, we're not sure it's Autism either, it could be one of a hundred

things. We're investigating Autism because we think that's what it is

[inhales] but it's not clear, um, particularly because she made really

great eye contact and she's very loving, which is typical of Rett girls.

Um, but ultimately that I - what do I know, I'm just a mother and, not

only that, that mothers compensate, that they see what they want to

see, not the reality, so, for example, I... said ‘she's losing words, she's

losing words, she's losing words’ and I was told, 'she's not losing

words... she never had those words, you think you heard them because

mothers want to hear words, she was babbling, you heard words you

wanted to hear, and that's good', I was told, ‘because we'll do that

because when we - think we've heard a word we act as if we've heard

the word, the child learns to say it again, it becomes a word’, but that,

be-c- that - I had - never heard those words so [my daughter] had

never lost them. [Inhales] None of which I agreed with (laughs) [JH:

No (laughs) of course not.] Er-hum, but I was uncertain - and very

anxious, so, I started to read for myself and I read a lot. [JH: Yeah]

about Autism.

[Interviewee #118, mother in her 30s of a 4-year old girl with Rett

syndrome, diagnosed a year ago]

This section explores how parents used or ‘borrowed’ (after McKeever &

Miller, 2004) ‘goods’ gained online in order to gain the symbolic power

necessary to access additional support and equipment within wider caring

fields.

Interviewee #118, quoted above, was very active in gathering

information that she could use as ‘ammunition’. As noted above, this was like

the ‘borrowed’ capital described by McKeever & Miller (2004), only the

expertise borrowed was from other, more experienced parents, not

professionals.

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But then also other people's experiences even if they're not relevant

now, ok [?] [JH: Yeah]. I read a really long chain of comments, um on

the blog I mentioned where... one of the little girls had - cos they had

the feeding tube and the button that's in their tummy had fallen out

[JH: OK] and they had been told by the Nurse that that never happens,

they didn't need a spare [JH: Right] And in the middle of the night it

did happen [JH: Yeah] and it was a crisis [JH: Yeah] And then there was

a lot of comment on how it had happened to other people [JH: OK] and

I sort of - although that's not relevant to us at the minute [JH: Yeah] I

filed it away in my head [JH: Yeah] that when a Nurse helpfully tells

me [JH: Yeah] that we don't need a spare and I don't know – need

[JH:Yeah] to learn how to... sort it out, I can say, no, no [JH: Yeah] I

know that lots of parents have had this problem and you must teach

me this.

[Interviewee #118, mother in her 30s of a 4-year old girl with Rett

syndrome, diagnosed a year ago]

One important function of the online peer support groups was of what

parents termed ‘moral support’ in deciding when to engage in a symbolic

capital struggle in a wider field. One parent described how support online

had given her ‘the strength’ to challenge a local decision to exclude her

daughter from horse riding.

my daughter’s ridden since she was about three. [JH: Yeah.]

Infrequently, but this school, because she’s got seizures, is refusing

riding lessons. [JH: Yup.] And I st-. I know I need to deal with that with

her epilepsy consultant, erm, but I did vent. I went on[line] and

vented. [JH: Yeah.] Er, because one of the parents is a is a you know is

a she has horses with a daughter with a disability. So she knows what

the issues are. She knows what the health and safety controls are, and

the risk assessments. And it helps that, you know, other people

support you. [JH: Yeah.] That you’re not wrong for realising that their

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decision is wrong. [JH: Yeah, yeah.] And I think on that was on [two of

the peer support sites], I think at round about the same time, some

child they [inaudible] to take them to riding lessons because they had

seizures. So there’s along along the same lines and it happened at the

same time. [JH: Mm.] So, I think we all vented together. [JH: Yeah, yeah.

OK.] And I think sometimes when you you’re told ‘no’, by a body or a

community, the easiest thing to do is just to say ‘fine, OK’ and back off.

And I think if you get the support from other parents, so [?] no they’re

not always right, again, parents aren’t always right but, um I think

sometimes you need some moral um support to say ‘you need to fight

that one’ [JH: Yeah, so it sort of helps you to choose your battles, in a

way?] Yeah, yeah. [JH: Yeah. OK.] And again, you know, parents aren’t

always right. Um, but if you get the moral support or you get the

knowledge from other families who’ve gone through it, it does give

you, you know, the strength to carry on.

[Interviewee #25, mother in her 40s of an 8-year-old-girl with Rett

syndrome, diagnosed six years ago]

For this parent, who lived in the United Arab Emirates, but used

European and American sites, parental support helped him to feel supported

to make radical dietary changes in the face of medical skepticism.

So we took our daughter and, er, it was telling doctors, “Doctors, my

daughter had a big traditional meal rich of wheat, does that mean

something?’ [JH: Yeah.] Doctors, they take the medicine, the the blood

sample, they make the test and they come with negative answer and I

do feel, I do, I do found the, do find er two respondents, saying, “don’t

listen to those stupid doctors.” [JH: Right.] “Fee- uh listen to your gut.”

[JH: Yeah, yeah.] And, and I do believe in this. [JH: Yeah.] And er, erm,

just after that I stopped giving her wheat derivatives or bread, cake,

macaroni, spaghetti, everything stopped. [JH: Yeah.] Okay. Er, no

seizures… [JH: Wow.] …for two months…[JH: Great.] …for two months

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and then came back, [JH: Oh] the seizures came back. [JH: Yeah.] And

er the doctor say, “See, seizures have come back, so are you happy that

seizures have come to prove your po- your, your argument.” I just said

“No, but you were saying that those uh stupid websites, that was the

[inaudible] they used. Stupid website groups that are talking about

this subject um and now you know, doctors, they think, it’s very

difficult to change the mind of a doctor. [JH: Yeah, yeah.] You know,

because he used to study things scientifically and he will never

understand something, he will never accept something which is not

proven. [JH: Okay, yeah, yeah yeah.] That’s it. So I returned after three

months giving my daughter bread […] And, erm, seizures are the same,

till one day we had, er, traditional meal […] it’s a complete green

wheat. [JH: Right.] […] and uh uh that day my daughter got four major,

er, er seizures. [JH: Yeah.] You know, it is like, those seizures have

been like you have a bulldozer sitting on my daughter, how she was

squeezed and her body is moving, it’s like a bulldozer sitting on it. [JH:

Yeah, yeah.] So I went back to the hospital. We admitted her in the

hospital for, erm, a day and I told the doctor, “She had wheat again and

this happened.” [JH: Yeah.] And the doctor insisted that one as a

rational man I accept the scientific side, that’s my, that’s how I have

been raised. [JH: Yeah.] […] When I go to the site again the parents

agree with me, “Don’t listen to doctors, stop wheat, stop bread, stop

cakes, stop, er, spaghetti, stop everything even don’t give her

hamburger, ‘cause hamburger itself has some wheat in it.” […] And I

stopped everything again, although I did the gluten uh antibodies test

and it came negative. [JH: Mm hm.] I did, er, er, […] we have taken a

sample from her intestine, okay, to test, erm, what do you call it, erm,

er, cyclic disease […] came negative. And when my daughter takes

wheat… [JH: Yeah.] …she gets major seizures […] I don’t personally, I

don’t believe that if I didn’t have that insistence from those parents,

“Don’t give her wheat anymore, don’t listen to those, er, doctors,

telling you no, she has nothing related to gluten,” I would have

continued giving her wheat…

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[Interviewee #141, father in his 40s of a 13-year-old young woman

with Rett syndrome, diagnosed eight years ago]

For more experienced parents, the forums could be used to encourage

other parents to challenge medical decisions and to trust their own instincts.

and that’s where, you know what, as a younger parent with a young

Rett girl [JH: yeah] you don’t know that you can stand up for yourself

and say, ‘No!’ [JH: yeah] ‘I don’t want you to do that’ [JH: yeah yeah] I

put a bit of that out on there, which I suppose is a bit negative, if

you’re not happy with that, that or what’s done [JH: Mm-hm] ask to

see somebody else. [JH: Yeah] refer it back you know, [JH: yeah yeah

yeah] people don’t realise they can do that [JH: yeah] people don’t

realise they can’t [sic] stand up to Doctors […] [JH: so you’ve, having

had those experiences you’re able to say to people on the forum you

don’t have to put up with this, and to trust your your opinion and so

on] Gut instinct! Gut instinct [JH: Yeah. Yeah yeah.] is right you know

that happens with lots of people [JH: Yeah] It’s like they say when

people get mugged [JH: Mm-hm] they they reckon there’s a thirty

second window before you get mugged that actually there’s that fight

or flight or fight [JH: yeah] and do you, you know what you’re gonna

do [JH: Yeah yeah] that person doesn’t look like it’s gonna mug you,

but something tells you that [JH: yeah] something’s not right and I

think it’s the same with girls [JH: yeah yeah] with Rett girls [JH: yeah]

and actually if you watch their body language [JH: yeah] you’ve got a

pretty good idea at what’s right or wrong with Rett girls

[Interviewee #174, mother in her 40s of a 14-year-old young woman

with Rett syndrome, formally diagnosed eight years ago although

mother realised 12 years ago]

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However, not all parents were prepared to challenge medical advice.

As discussed in section 7.2, this could be interpreted as relating to habitus

connected to beliefs around the relative importance of peer and professional

advice or having access to trusted medical support. However, it could also be

due to having a bad experience following peer advice, as in the account

quoted below. This account is interesting in terms of how this interviewee

presents both being willing to take peer advice on medication, but also

presents herself as tending to defer to her doctor’s view – indeed seeking her

doctor’s advice before making this change. As can be seen, this interviewee

was younger than the other parents quoted in section 7.2.

she was telling me that I should take her off one of the tablets that

she’s on [JH: Ooh. Mm.] Which, um with agreeing with the Doctor we

did [JH: Yup] but we took her off it immediately which then caused

withdrawal and she ended up in hospital for a week having

convulsions and [JH: Ooh] getting all shakes so I think she was

withdrawing from the drug [JH: Yeah yeah] and we just took her off

and just changed her over but now we’ve put her back on and I don’t

really talk to this [laughing slightly] other parent anymore [JH: No] but

she’s very sort of this one was very sort of herbal, herbal remedies and

things like that as well and trying to get her daughter off all her drugs

and you know [JH: Mm] […] generally I go along with what the Doctor

tells me and you know if they say this is the one that’s best for her I’ll

give it to her, you know [JH: Yeah] I don’t tend to, then go researching

into all the problems that it could cause, I just sort of [JH: Yeah] give it

to her and go along with it.

[Interviewee #30, mother in her 30s of a 12-year-old girl with Rett

syndrome, diagnosed 9 years ago]

Another helpful aspect of online support groups was having access to wider

knowledge about what had been funded in other authority areas. Two

parents who held higher education qualifications discussed their current

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attempts to use this kind of information to change their child’s situation

within wider caring fields. They differed in terms of household income, one

being a single parent reliant on benefits to care for her daughter, the other

parent earning over £40,000 per year.

hearing, uh, what other people, do, and h-have been able to get or or

whatever that kind of [JH: Yeah] that can be quite empowering [JH:

Yeah] to get a better sense of, you know, what might be available if

only you know what to ask for [JH: Oh ok] all that can help [JH: Yeah]

Um, so yeah, there’s lots of good advice [JH: Ok] about things like that

[JH: Can you think of an example where you saw something that made

you think differently about what what you could, what was available

and] Um, well I gave the example of music therapy, [JH: oh yeah] I

haven’t managed to, I haven’t been successful with it yet, but [JH: Yeah,

yeah] uh, it was very useful to know that there are lots of girls who do

have music therapy on their Statement [JH: Ok, yeah] you [inaudible],

there’s no there’s no intrinsic reason why it shouldn’t be done.

[Interviewee #76, mother in her 40s of a 5-year-old girl with Rett

syndrome, diagnosed 3 years ago].

and someone’s coming to look at eye tech gaze technology with her

[JH: Oh yeah] I was unaware of eye-gaze technology [JH: Ok. and you

found about that through the] Yeah [JH: (the online peer support

group)] Yeah.

[Interviewee #174, mother in her 40s of a 14-year-old young woman

with Rett syndrome, formally diagnosed eight years ago although

mother realised 12 years ago]

As noted above, peer support groups sometimes involved the sharing

of reports that had been used to gain funding for services. This was described

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by the following interviewee as something that online peer support could

offer that institutions (charitable organisations) could not offer

and... um, yeah, hearing about, what other people have been able to…

do, so, for example, um, yeah th- there’s b- there was some sharing of

um Speech and Language Therapy reports [JH: Yeah] that were

written in support of funding [JH: Oh ok] for an eye-gaze computer

[JH: Yeah, yeah] that kind of thing [JH: Ok] So you see, that’s the kind

of thing that’s shared among parents that I just don’t think a [non-

peer, charitable] organisation […] is in a position to help with [JH:

Yeah] you know, we we just do it ourselves and they don’t have, you

know, there’s there’s things they can add [JH: Yeah] but, e-, yeah,

sharing that experience is really [JH: Yeah, yeah] is really good

[Interviewee #76, mother in her 40s of a 5-year-old girl with Rett

syndrome, diagnosed 3 years ago].

In support of this idea, one couple described how they had not been

able to get information about challenging services from a charity.

Because we thought…well, it wasn’t them first of all but they did come

into it, because I thought, “Well, they’re the experts on Rett. […] they

may suddenly come up with all these things like, ‘Oh yeah, we’ve had

other families that have been through this fight and they’ve got what

they wanted’, or you know, something like that, because they’ve gone

about it in this way”, but actually, they didn’t, did they? [JH: Mm.

Okay.] So I gave up on them. [JH: Yeah.] Um because they just said, “Oh

well, you know, it’s very difficult. The economy is this, that and the

other…”[Husband of 133: I think through all this thing we were by

ourselves.] Yeah, we were by ourselves in the end.

[Interviewee #133 and husband, parents of an 18-year-old woman

with Rett syndrome, diagnosed 16 years ago]

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Three parents discussed having gained a tangible benefit in wider caring

fields through information gleaned from online support groups. All three

were parents of children rather than adults with Rett syndrome.

if there's a new - intervention or some therapy or [JH: Yup] something,

then I would want to know about that. [JH: Mm-hm] Um, and that's been

really helpful for me [JH: Yeah] Because, one of the things I've done is, I

managed to get hydrotherapy onto [my daughter’s] statement, which in

[local area] is very rare [JH: Yeah] they don't put hydrotherapy on

statements [JH: Ok] That's their view [JH: Yeah] Um, but I was able to go

in with articles [JH: Yup] That showed that hydrotherapy's really good for

girls with Rett syndrome [JH: Ok] Um and that I really felt it had to be on.

[JH: Yup] Um, and in the end, they er, got tired of me phoning I think [JH:

yeah] [Laughs] and [JH Laughs] put hydrotherapy on her statement

[Interviewee #118, mother in her 30s of a 4-year old girl with Rett

syndrome, diagnosed a year ago]

Um and I think one of the threads was basically about um incontinence

pads. [JH: OK.] Cos I live in an area that was rationing incontinence pads.

[JH: Oh yeah, yeah.] And it was basically through Mumsnet that I realised

that what they were doing wasn’t right. [JH: Yeah.] So we’ve gone through

a long process, appealed and we finally got there.

[Interviewee #25, mother in her 40s of an 8-year-old-girl with Rett

syndrome, diagnosed six years ago]

I wanted to get [my daughter] a Peapod chair [JH: Mm-hm] Um and I had

been looking at it and I said, as- said to people, you know is there any

places I can get funding for this [JH: yeah] um and someone suggested

trying the OT before I went down the route of getting a grant [JH: Mm-

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hm?] because you know it’s a chair that she needs [JH: Yup] um and I

followed their advice and the OT paid for it.

[Interviewee #30, mother in her 30s of a 12-year-old girl with Rett

syndrome, diagnosed 9 years ago]

Overall there was no strong evidence that wealthier or more educated

parents had unequal gains in terms of converting online ‘goods’ into symbolic

capital in wider fields, with parents with basic levels of education and lower

earnings both able to reap the benefits of the information available online.

Thus access to a wider group of peers online gave some parents the

opportunity to discover when a local decision had been challenged or had not

been applied in another area and provided a space where parental

experience or ‘gut instinct’ could be privileged over medical expertise.

However, picking up a key finding within this research, none of the

parents who described having sought or gained symbolic capital in wider

caring fields had adult children. There were a number of possible reasons for

this difference, which reflect the findings described in Chapter 6. Firstly, one

parent of an adult children described having gained similar benefits from an

offline source: information about seizures at a Rett UK event that led to

gaining a referral to a specialist clinic. This reflects the greater social capital

resources that interviewees with adult children may have drawn upon over

time. Secondly, as noted in the section about similarity to other posters and

reflected in the survey findings, a significantly smaller proportion of parents

of older children and parents of children who had received a diagnosis more

than seven years ago reported experiencing benefits from online support

sites. As noted above and argued in Chapter 6, this reflected parents’

perceptions and survey findings that suggested that online support groups

were used disproportionately by younger parents and the ‘goods’ available

there were largely irrelevant to older parents, save for information about

emerging treatments and research and some new equipment. Thirdly, as

discussed in Chapter 6, the volume of novel difficulties faced may have

reduced, with parents already having in place strategies, equipment and

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support to meet many of their daughter’s needs. Finally, there was some

limited evidence that older parents may be less disposed towards challenging

medical professionals, although this could also be explained by the possibility

of having found helpful professional allies who could advocate for them,

raised in Chapter 6.

7.4 The role of online peer support sites within wider caring fields

and existing power structures

This chapter aimed to explore the position of online peer support sites within

wider power structures in terms of both wider social (and digital)

inequalities and institutional interests within wider caring fields. Section 7.1

presented data that suggested that institutional and elite voices are

privileged in Facebook Pages and parents’ blogs (partly due to the

architecture of these sites) and that even in online peer support sites such as

Facebook Groups, wider symbolic struggles among institutions can be played

out among parents. In this way, some aspects of online peer support among

this group of interviewees can effectively suppress or sideline the voices and

views of less powerful individuals.

Section 7.2 problematised the notion of distinct ‘lay’ and institutional

sources of information online, noting how interviewees and institutions used

online peer support sites to link to communications from wider fields, such as

research. There was some support for the idea raised in Chapter 6 that some

interviewees holding greater cultural and specific kinds of linguistic capital

can access and understand a wider range of primary sources, particularly

research papers. There was also some suggestion that more educated

interviewees used strategies to discover the meaning of unknown jargon that

less educated parents did not. However, without a wider knowledge of the

range of information sources parents had ever accessed, it was difficult to

draw conclusions for the whole interviewee group. Where information

‘goods’ had ever been gained from online sources, many aspects did not

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appear to be socially differentiated among interviewees, suggesting some

democratic sharing of some kinds of information in certain forums (‘case

history’ information, services outside education, specialist equipment, expert

carer work into developments in therapies and research). This included

parents with basic or secondary education accessing professional advice

from Speech and Language Therapists in an online peer support group.

There were a few indications of some possible differentiation in some

areas of expertise. Some interviewees who were also wealthier and more

educated sought medical information and information about special

educational needs online. Parents of adult children did not report having

used online peer support sites for suggestions about daily care, special

educational needs and medical information. This may reflect a combination of

differing needs, a lack of relevant ‘goods’ within groups and differing habitus

with relation to peer-professional relationships. However, these findings

were limited to topics discussed by parents within the interviews, so may not

be exhaustive and cannot be generalised to a wider group of parents or even

survey respondents. In addition, the method of sampling may have over

selected parents who may be more actively involved in information and

support seeking.

There was some suggestion that wealthier, younger and more

educated parents may have gained greater economic capital benefits from the

information found through online support groups, however this cannot

reflect how these benefits may have been gained through other sources of

information offline, or already have been gained before online support was

used. Finally, emotional support and companionship could be experienced

across all groups from online peer support sources, although this was

predominantly experienced by younger parents.

Section 7.3 explored how online ‘goods’ were converted into symbolic

capital in wider caring fields. This shed some light on how online peer

support interactions can influence relationships with professionals. Some

parents described how they ‘borrowed’ other parents’ expertise to challenge

medical decisions, using online discussions as sources of moral support or

evidence for certain approaches. However, not all parents were prepared to

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do so, reflecting earlier discussions about parents’ disposition towards

challenging medics.

There was no compelling evidence in interviewees’ accounts that

wealthier or more educated parents had unequal gains in terms of

successfully converting online capital into symbolic capital in wider caring

fields. Again, none of the parents who discussed using online support ‘goods’

to seek or gain symbolic capital in wider caring fields were parents of adult

children. This may relate to a number of differences in the experiences of

parents of adult children as discussed in this chapter and Chapter 6, or to

having already gained these kinds of benefits through alternative sources or

not recalling these benefits in an interview due to elapsed time since this had

happened.

Chapter 8 closes this thesis by bringing together the findings reported

so far, interpreting how they have addressed the research questions and

assessing the contribution to the literature outlined in Chapters 2 and 3.

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Chapter 8. Towards a more coherent understanding:

the role of online support and information in the

caring practices of parents of people with a rare

syndrome

This chapter draws together the findings of this thesis, assessing how they

have answered each of the research questions and how they contribute to

existing literature on the role of online support and information in the lives of

parents of people with rare syndromes. In this thesis I set out to provide a

more coherent understanding of the role of online support and information

in the lives of parents of people with a rare syndrome. It has been argued that

online information and support could provide particular benefits for this

group due to the lack of expertise among local health professionals and a

likely lack of contact with peers whose children face the same issues.

However, very little research has explored the role of online peer support

within this group.

Existing literature exploring the use of online information and support

among carers of people with rare syndromes is fragmented and has either

focused on mostly qualitative micro processes of the use of online

information and support or mostly quantitative macro studies of the

differentiation of use. In Chapters 3 and 4 I argued that this fragmentation

was related to a theoretical pluralism in the wider field. This reflected wider

epistemological divisions that focused either on the structural inequalities

involved in accessing online support and information or on descriptions of

individual practices. I proposed that Bourdieu’s concepts of social, economic

and cultural capital, fields and habitus might provide a way to explore how

both structure and agency might be involved in the use of online support and

information in everyday caring practices. In particular, I posed four research

questions, which were:

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1. Are younger, wealthier and more educated parents of people with Rett

syndrome more likely to use online support and information than

others?

2. Are different platforms for online peer support socially differentiated

so that parents of people with Rett syndrome are brought together ‘in

a seemingly fortuitous way’?

3. How does an individual’s habitus and possession of different forms of

relevant cultural and social capital affect their use of caring-related

online support and information?

4. How does the use of online peer support sites influence wider caring

practices? Is there any evidence of differentiation of benefits by age,

income or education?

I argued that the best way to explore these questions was with a mixed

method approach, combining survey and interviews to explore use within a

single case study group of parents of people with a specific rare condition:

Rett syndrome.

The following sections summarise my findings in relation to these four

research questions. Within each section I assess the limitations, strengths and

contribution of this work to the wider literature. I conclude this thesis with a

summary of how this work has changed this field and suggestions for further

research.

8.1 The social differentiation of online peer support and

information use

Are younger, wealthier and more educated parents of people with Rett

syndrome more likely to use online support and information than others?

This section assesses the attempt to answer the above research question. In

doing so it draws together the rationale behind exploring the structural

differentiation of the use of online support within a case study group of

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parents of people with Rett syndrome, and describes the contribution to

existing findings.

8.1.1 Assessing structural differentiation among a case study group of parents of people with Rett syndromeFollowing the reasoning of Bourdieu (1984) and the methodological

recommendations of Fries (2009) and Harrits (2011), I began my study by

trying to establish whether there was any evidence of structural

differentiation of the use of the Internet for caring-related information and

support within this group.

Due to the rare nature of Rett syndrome and the lack of a

comprehensive sampling frame, it was not possible to draw a large or a

randomised sample of parents. This meant that my findings could not be

generalised to the wider population of parents of people with Rett syndrome,

but instead served as a large case study group from which interviewees were

drawn.

Comparisons with Rett UK’s membership database, the most up-to-

date sampling frame available, suggested that women and full-time carers

might have been over-represented in my sample. However, these groups may

provide the richest data about how online support and information relates to

household caring practices.

A follow-up question about non-response suggested that at least some

parents who did not use the Internet had not responded due to a lack of

interest in this topic. It is also possible that, due to the available sample

frames used (Rett UK members and online support sites) my sample were

particularly engaged users of information and support. However, my main

focus in this study was on how current users of online support and

information use this within their wider caring practices, so this bias did not

affect my ability to explore this area.

Therefore, as intended I was able to explore the interplay of structural

and micro processes in the use of online information and support within the

wider caring practices of this case study group. As outlined in Chapter 2,

existing research into the use of the Internet by carers is methodologically

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flawed and research into micro-processes tends to be based on relatively

small samples. This research therefore contributes a larger (effectively

qualitative) study to the limited research into the use of the Internet – and

particularly online peer support sites – among parents of people with rare

syndromes.

Moreover, by combining quantitative and qualitative data within the

same wider case study group, this research is novel in presenting a coherent

picture of the uses of online support and information at both a macro and

micro level within the same case study group of carers of people with a

particular rare syndrome. As argued in Chapter 1, this is valuable for two

reasons. Firstly, because it avoids confounding results among carers

providing different kinds of care, for different periods of time to people with

different support needs. Secondly, because Rett syndrome is a good early

example of the repercussions of the Human Genome Project on the use of

information and support available to carers of – and people with – specific

genetic syndromes. This, as noted in Chapter 2, has already changed the

nature of genetic knowledge, available technology and the kinds of online

information and support available (Skinner & Schaffer, 2006).

8.1.2 Interpreting the social differentiation of the use of online support among respondentsInternet users were likely to be overrepresented in my sample, but even so,

Internet use was not ubiquitous and reflected OxIS findings (Dutton & Blank,

2013) in that income and age were strongly related to use. This is an

important finding in that it establishes that even though the Internet provides

great potential for carers, it is not used universally and social differentiation

of use may reflect wider digital inequalities.

The most striking aspect of the survey findings was the low role that

income (economic capital) and education (cultural capital) played in

differentiating the use of online support in caring practices among

respondents. This ran counter to existing research, which suggested that a

greater proportion of professionals used a Rett syndrome-specific online

peer support group (Leonard et al., 2004). However, this research was itself

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limited in its ability to generalise to the general population of parents of

people with Rett syndrome as respondents were recruited through a single

email group. This may have led to the over selection of active, current users

of this specific forum, who may not reflect the wider group that has ever used

any kind of online peer support. One possible reason for the lack of a

relationship with income was a relatively large number of full-time carers in

my sample, even when compared to the sampling frame from Rett UK. These

families would have reduced overall household income compared with the

general population. However, this does not explain the lack of differentiation

by higher education, which was found by both Leonard and colleagues (2004)

and Porter & Edirippulige (2007)40. However, as both these other studies

were not representative of their wider populations either, neither can really

shed light upon wider use.

Instead, the key differentiating factor among respondents was age and

other time-related variables (child’s age and years since diagnosis). As might

be suspected there were high correlations between these three variables as

all ultimately related to time. A significantly larger proportion of younger

parents had ever used generic online support41. Significantly more younger

parents, parents of younger children and of children who received a

diagnosis more recently had ever used online peer support, and significantly

more parents of younger children and those with a more recent diagnosis

had visited an online peer support site within the last month42. Having mobile

access to the Internet and having a higher self-rated ability to use the

Internet were also associated with ever having used generic online support

and online peer support. In line with findings among the general population

(Dutton & Blank, 2013), increased age was highly related to lower use of

mobile access and lower self-rated Internet use ability. This suggested the

possible role of a form of generational digital inequality among older parents

within this sample, arguably related to distinguishing practices (not using

40 Unlike Leonard and colleagues (2005), Porter and Edirippulige (2007) sent a survey to a wider group of parents, although, as noted in Chapter 2, their recruiting method was limited and this work was also not generalisable.41 Comparisons across age of child and years since diagnosis could not be carried out.42 Comparisons by age of parent could not be carried out

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mobile access to the Internet) and possibly fewer opportunities to develop

online skills (although this could not be tested here). As noted in Chapter 5,

due to the small sample and problems of multicollinearity, it was not possible

to test the relative importance of each variable. However it was argued that

artificially disaggregating these influences on the use of the Internet would

provide limited information in understanding how micro processes fitted

within wider structural differentiation. Instead an appreciation of the

intersection of multiple structural influences on the lives of interviewees was

a valuable context within which to explore the use of online support and

information within everyday caring practices.

Chapter 6 presented interviewees’ accounts to explore how these

intersecting variables provided a context for the differentiated use of online

support. These revealed changes over time relating to the changing care

needs of a child with Rett syndrome, parents’ management of the

biographical disruption involved in receiving a diagnosis, accumulation of

relevant expertise and finding and narrowing down social capital resources.

These are all explored under the other sections of this chapter as they relate

variously to possession of habitus and related practices and tastes, and social

capital (see section 8.3) and the differentiation of benefits gained from online

support (see section 8.4). It was not possible to disentangle the relative

impacts of time, age of parent, cohort of parent, age of child and the changing

nature of communication and fields of knowledge and support. However,

interpreting these intersecting influences on parents’ use of online support

was valuable in exploring the necessarily socially and historically situated

nature of parents’ practices. This thesis therefore follows Bourdieu's (1993)

argument that practices can only be properly understood within their specific

socio-historical context.

In conclusion, this first research question could only be answered

among this group of respondents, but provided an informative case study of

the practices of a large group of parents of people with a specific rare

syndrome. Among respondents, younger parents – but also parents of

younger children and children with a more recent diagnosis – were most

likely to have ever used online peer support. Except for economic capital

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differentiation in the use of the Internet, economic and cultural capital did

not affect the use of online support.

Section 8.3 summarises findings that explored how parents’

possession of alternative forms of social capital and relevant ‘goods’ was

related to these forms of age- and time- related differentiation.

8.2 Fortuitously among like others? The social differentiation of

online peer support sites

Are different platforms for online peer support socially differentiated so that

parents of people with Rett syndrome are brought together ‘in a seemingly

fortuitous way’?

On the whole, and in line with Dutton and Blank’s (2013) findings, the use of

all online support platforms was socially differentiated by age of parent and

age of child and - except for website comments - by years since diagnosis.

This followed the pattern outlined above, where use was highest among the

youngest parents, parents of younger children and parents of children who

had received their diagnosis more recently43. However, as before, these

results did not reflect results in the wider population (Dutton & Blank, 2013)

because income did not differentiate use except among blog use, which is

discussed in detail later in this section.

Facebook was the most used platform for online peer support among

current Internet users within the survey sample (59%) and the use of

Facebook Groups and Pages were a prominent feature of interviews, so

deserve particular attention here. Within the survey respondent sample,

older parents were underrepresented44 and interviewees with adult children

43 As noted above, these variables are highly correlated, so these groups are likely to overlap and provide, as argued above, evidence of multiple, interrelated structural constraints within interviewees’ lived experiences.44 46.4% of 45-66 year old respondents and 20% of 67-89 year old respondents used these groups compared to 87.1% of 23-44 year old respondents.

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perceived such groups as predominantly used by parents of children, which

was also reflected in the statistics available on survey respondents45. In

interviewee accounts, parents of adults suggested that this age imbalance

meant Facebook Groups provided no relevant ‘goods’ in terms of parental

advice about daily caring.

Interview accounts described in Chapter 7 suggested that wider

institutional interests were reflected within Facebook sources of peer

support. Firstly, Facebook Pages for charities - although sometimes initially

perceived by interviewees as possible sites to contact peers - were structured

to privilege the views of the organisation over those who visit the page46. This

is a good example of the importance of considering the impact of online

algorithms and technology on the social use of the Internet, as discussed in

Chapter 2 (Halford & Carrigan, 2014; Kivits, 2013; Seale, 2005). Although

parents did not quote Facebook policy, some interviewees became aware the

limitation of Pages through failed attempts to engage with other parents and

an awareness that comments added by visitors to the Page were

automatically given less prominence than posts by the organisation. This

changed how interviewees used these kinds of pages in terms of the language

they used and the questions they asked (those befitting formal

communication with an organisation). Secondly, the ideological approaches

of different charities – in essence, fundraising for parental support or for

‘cure’ or treatment research – were reflected in symbolic struggles within

Facebook Groups. As I argued in Chapter 7, these aspects of Facebook Groups

and Pages showed how wider institutional power structures were

represented and reproduced in an undemocratic way. This ran counter to

‘celebratory’ theories about online support being inherently empowering and

was more supportive of the ‘contingent’ perspective to online support

45 78.0% of survey respondents with children aged under 18 used Facebook while only 37.9% of respondents with adult children did.46 As noted in Chapter 7, Facebook Pages and Groups are designed for different purposes. Facebook Pages are ‘official profiles’ for businesses and brands, while Facebook groups “are the place for small group communication and for people to share their common interests and express their opinion” (https://www.facebook.com/notes/facebook/facebook-tips-whats-the-difference-between-a-facebook-page-and-group/324706977130)

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outlined in Chapter 2 (Nettleton et al., 2005). It also supports the idea of an e-

scape where sites managed by biomedical and commercial interests are

represented alongside ‘lay’ health knowledge (Nettleton, 2004b) – sometimes

in the same online space. Additionally, it adds support to arguments that

online support and at least certain parts of the Internet should be understood

as reflecting subfields of wider fields (Smith & Stewart, 2012; Sterne, 2003)

rather than treating the Internet as a separate field (Julien, 2014).

Interestingly - in a finding that initially appears to reflect some of the

early ‘utopian’ research into the potential for the Internet to be a place of

relative equality – interviewees reported finding it hard to establish

someone’s social background through Facebook group contact. This is a

surprising finding given that Facebook users are not anonymous and share

ostensibly personal information on their profiles. One interviewee described

how a lack of the cues present in someone’s voice – potentially an indicator of

linguistic or cultural capital - was one aspect that was seen as missing in

making this kind of judgement. Another interviewee, who was a single

parent, was aware that nobody online knew this aspect of her background

and she told me she not stated this in any obvious way on her profile or

during her interactions within the group. However, as argued below, aspects

of practice and taste were used to differentiate Facebook contacts with whom

one might have an ‘affinity’, which suggested parents were attuned to

differences in markers in habitus that indicated social position (after

Bourdieu’s conceptualisation in Distinction, 1984).

As noted in the previous section, blogs were the only place where

there was clear social differentiation by income, with greater use by

wealthier survey respondents. There was evidence within the interview data

reported in Chapters 6 and 7 of how this differentiation in blog use affected

parents’ experiences of online peer support. This was reflected in how

interviewees described the ‘likeness’ of others, with one wealthier and more

educated parent describing how she felt a particular affinity with a blogger,

who wrote well and who had quotes on her blog that she liked, which

suggested indications of shared cultural capital and taste, reflecting shared

habitus. Another interviewee who wrote a blog only tended to respond to

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other bloggers’ posts and avoided Facebook because she felt it would not

involve contributing toward the relationships she had built up with other

parents within the blogging community. She instead chose to share

information about useful equipment on her blog. However, if survey and

interview results were any indication, this may mean there was less

likelihood of this information being seen by less privileged parents. This

recalled Bourdieu’s (1986) description of how differentiated forms of social

capital require exchanges that are ‘subjectively felt’ as ‘durable obligations’

(Bourdieu, 1986, p. 52). This did not appear to be driven by a deliberate

attempt to exclude dissimilar others, but was something that happened as a

result of being part of this particular group. This was similar to what

Bourdieu (1986) has argued in relation to the operation of social settings that

bring together homogenous groups of people in a ‘seemingly fortuitous’ way.

While blogs were also ostensibly a place where parents could

exchange messages with one another47, some interviewees’ accounts

suggested that bloggers held greater symbolic power because, through their

posts, they set the agenda for the discussions in the comments below.

Another aspect of this power was reflected in the accounts of the two

bloggers interviewed, who reported very little or no challenges to the content

of their posts, which would touch on aspects of parenting practices48. This

suggests both a possible sharing of habitus with the wealthier, younger

survey respondents who read these blogs and how bloggers’ voices could be

privileged over the views of their peers. Given the wider evidence of blogs

being produced more often by wealthier people (Dutton & Blank, 2013), this

suggests that the views of wealthier parents in the Rett syndrome

blogosphere may be privileged, although this can only be suggested by this

data, which cannot be generalised more widely to the whole population of

parents using these sites and groups.

47 Therefore reflecting my conceptualisation of an ‘online support site’.48 This was in contrast to the existence of conflicts in Facebook Groups about parenting practices, which were described as a relatively more common experience.

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In summary, in relation to the research question posed above, there was

evidence that blogs were socially differentiated and functioned as places

where a disproportionate proportion of wealthier respondents could find

‘like’ others, support one another and share expertise. Additionally, there was

some evidence of some voices and views that reflected institutional

ideologies holding additional symbolic power within Facebook Pages, but

also, to a certain extent, within Facebook Groups, where wider institutional

ideologies and symbolic struggles could be reproduced.

8.3 The role of habitus and cultural and social capital in the use of

online support and information

How does an individual’s habitus and possession of different forms of relevant

cultural and social capital affect their use of caring-related online support and

information?

This question was explored in Chapters 6 and 7, as it relied upon qualitative

data that could shed light on micro practices in information seeking and how

they might relate to parents’ dispositions (habitus), possession of cultural

capital (education) and social capital (alternative sources of support). As I

argued in Chapters 2 and 3, a coherent understanding of the role of online

support needed to take into account parents’ access to alternative sources of

social capital, their possession of cultural capital, and the influence of habitus

on information-seeking, parenting and online practices. These aspects are

explored below in terms of the findings reported in previous chapters and

how they contribute to the existing literature outlined in Chapters 2 and 3.

8.3.1 The influence of alternative social capital resources on the use of

online support

Interviewees reported drawing upon a range of sources of information

alongside online support, and in some cases, before they had access to online

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support. In fact, among survey respondents, a lower proportion had ever

used online peer support (66.8%) than had used local group support

(80.2%), telephone support (82.4%), or generic online support (89.3%).

Other sources of support mentioned in interviews included books,

magazines, telephoning volunteers, attending charity-run events, reading

charities’ newsletters and magazines, talking to other parents of people with

Rett syndrome they knew offline, attending specialist Rett clinics run through

Rett UK and consulting a genetic specialist at Great Ormond Street Hospital.

This interweaving of online and offline sources of support recalls the

arguments presented in Chapter 2 on the importance of understanding the

use of the Internet as part of everyday life, with the underlying dynamics of

communication (in this case, information seeking) being the focus of research

rather than the medium itself (Baym, 2009). In interviews, parents described

using whichever relevant sources of information were available at the time

and their use being driven by level of need. Therefore while many

interviewees described a period of intensive information gathering around

the time of diagnosis, this was carried out using whichever channels of

information were available at the time, both online and offline. As argued in

Chapter 6, parents tended to narrow these sources of social capital to trusted

allies and ‘like’ others over time. Sometimes this meant taking online contacts

made in online support groups offline.

In choosing whether or not to use an online peer support site,

interviewees reported weighing up the alternative sources of support and

information available to them at the time. This was often related to the kinds

of ‘goods’ that were offered by a particular online peer support site in

relation to other sources of information and support, which is explored in

section 8.4. Aspects of habitus fit and misfit, which is explored in section

8.3.3, also influenced use of different sources.

8.3.2 The influence of cultural capital on the use of online support sites

and information

The survey found no significant differences in the use of online peer support

and generic online support among parents of people with different levels of

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education (cultural capital). As will be discussed in section 8.4, there

appeared to be no additional apparent benefits accruing to those holding

more cultural capital. However, as discussed in Chapters 6 and 7, there was

some evidence within the interview data of a differentiated use of available

sources of online information.

Firstly, all interviewees with a basic or secondary level of education

described how they posted on online peer support sites as their primary

source of information when seeking advice, while parents with a higher level

of education reported how they would seek information from other sources

first. However, this was somewhat speculative given that these discussions

were not part of every interview. This would, however, make an interesting

topic for further research. Secondly, parents’ use of online support and

information could be bounded by their understanding of jargon, particularly

within summaries of scientific research. However, more educated parents

reported fewer problems with jargon and used strategies to deal with any

terms with which they were unfamiliar. A limitation of this finding was that

while all parents were asked about jargon on sites and groups, it was not

clear whether all had tried to access scientific papers or not, making

comparisons difficult. Interestingly, one parent who had difficulties

understanding primary research papers reported that other parents would

post digested summaries of this information online. This parent held a higher

education qualification, suggesting that a very specific form of cultural capital

may be needed to interpret medical research. This was at odds with

Bourdieu’s (1986) conceptualisation of social capital offline, representing a

kind of bridging capital rather than an (unintentional) exclusion of people

possessing fewer relevant capitals or goods. However, as noted in section 8.2,

there was also evidence of a parent from a higher economic capital bracket

withholding useful goods from some online peer support settings, preferring

to post them in a blog setting instead, where they may be more likely to be

accessed by more privileged parents.

As noted above, these conclusions were somewhat speculative and

further research is needed to explore these findings in a more systematic

way. For example, a survey could explore the use of different kinds of

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information accessed by education, comparing the use of different sources

accessed online including research papers and popular online peer support

sites.

8.3.3 Indications of the role of habitus in online support site use

As argued in Chapter 3, I reject criticisms of Bourdieu’s concept of habitus as

socially deterministic. My data supported this interpretation, which I argue

below reflects Bourdieu’s (1998) conceptualisation of agency constrained

within wider structural differentiation, but with the ability to challenge the

‘rules of the game’ within fields and to accrue relevant capitals and goods to

gain symbolic capital, as explored in section 8.4.

There were a number of practices, tastes and dispositions described in

the following subsections that were used as markers of whether online

support sites were a good ‘fit’ with an individual’s own dispositions. These

were understood within this research to reflect Bourdieu’s concept of habitus

as a way of distinguishing between other people in different social positions

(Bourdieu, 1998), particularly as interviewees claimed that it was hard to

assess someone’s social background online, even on Facebook.

Some parents discussed how they would befriend some parents of

people with Rett syndrome with whom they had an ‘affinity’. As noted in

Chapter 6, these aspects of interviewees could be difficult, with parents

concerned they appeared snobbish, and quick to point out that they did have

friendships with people from different social backgrounds. As noted in

Chapter 6 and above, it could be difficult for interviewees to assess

traditional markers of background online, so instead parents talked about

having more in common with some people than with others. Following

Bourdieu (1984), interview data was explored in terms of how parents

discussed distinguishing tastes and practices and five key areas emerged.

These were parenting practices, digital taste, emotional expression and

illness narratives (discussed in Chapter 6) and attitudes towards peer versus

professional opinions (discussed in Chapter 7).

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Parenting practices

Interviewees noted that there could be disagreements, particularly on

Facebook groups, about parenting practices. These related to a number of

parenting choices, such as decisions about medication, whether or not to

have respite care for your child, decisions about whether to take a child to

hospital, whether or not to go ahead with a second pregnancy with a foetus

diagnosed as having Rett syndrome, dietary changes and the use of

supplements. These could lead to ‘vigorous’ disagreements. As noted above, it

was rare for the two interviewees who wrote blogs to experience criticism of

their blog posts. Although suggestive, this is an interesting difference,

suggesting that blogs – perhaps through the greater symbolic capital held by

a blogger - are ‘safer’ places for parents to discuss their parenting choices,

sometimes even to present counter-narratives as discussed in Chapter 6. It

may also suggest a shared habitus, demonstrated by shared tastes in

parenting practices. Given the social differentiation of the use of blogs, this is

an area where further research might explore whether blogs are places

where homogenous groups of parents with shared habitus might meet. Both

blog writers expressed their preference for interacting with other parents

through their blogs rather than on Facebook, with one parent having never

used Facebook and the other having chosen to withdraw from Facebook

groups after active participation.

Digital taste

A key differentiating factor that emerged in coding for differences in practices

and tastes was a preference for either more information-based or more

emotionally-based interactions online. The first kind was more likely to be

encountered on older mediums of peer support, such as email groups, and

could be seen to reflect the pre-participatory web style of interaction. By

contrast, the second kind tended to be found on more ‘participatory web’

style social media sharing sites, like Facebook. A key area of habitus fit or

misfit was between the propensity to communicate in one way and the kind

of interactions that tended to happen on different kinds of sites. Older

interviewees tended to prefer information-based communications, but some

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younger parents also expressed this preference. As argued in Chapter 6, this

also appeared to be related to wider habitus differences around emotional

expression and the fit between illness narratives and biographical disruption,

discussed next. This fits within Bourdieu’s (1998) argument that habitus is

not socially determined, but may partly reflect wider structural differences or

inequalities. It also fits with the move away from socially deterministic

narratives of the Internet into discussions of ‘types’ of users that may share

some demographic characteristics (e.g. ‘cultures of the Internet’: Dutton &

Blank, 2013).

Emotional expression

Perhaps due to the range of sites used by this group – where none allowed

anonymity – parents did not make distinctions between privately and

publically accessible sites when talking about posting about their emotions.

Parents’ approaches to sharing their emotions online varied along a

continuum, with parents who would never share anything personal or

emotional online, even on a private site, to those who were very open on any

site. This was partly related to the strength of ties online, where weak,

colleague-like ties inhibited emotional expression and stronger ties allowed

greater disclosure. However for some parents, the choice about whether or

not to share whether one was coping or not was related to broader emotional

habitus, learned through socialisation. It was also linked to concerns about

the kind of illness narrative presented (see below), where such posting could

be seen as ‘negative’, and like a chaos narrative (see below). Propensity to

share ones emotions had some relationship to age, where no interviewee in

their 50s described themselves as willing to ‘expose’ themselves online at all.

Illness narratives

A key point of contention for some interviewees in visiting online support

groups was a misfit between their own views and the illness narratives

produced in that space. Some interviewees discussed the presence of online

narratives that appeared to reflect Frank's (1995) definition of ‘chaos

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narratives’, in that they represented unresolved stories and issues. The most

extreme version of a chaos narrative described by interviewees was one in

direct conflict with the narratives around the possibility of a cure for Rett

syndrome. This was considered by some interviewees as too damaging for

the group and a number of sanctions were reported as having been applied

by different members to discourage posting of this nature. More common

forms of chaos narrative involved ‘ranting’ or ‘venting’, where parents shared

frustrating experiences, or their fears and anxieties about their child or their

child’s symptoms – but without solutions, like an incomplete story. Parents

who had reached a point of repair with biographical disruption, who tended

to have older children, did not have a good habitus fit with these kinds of

narratives, which they described as ‘negative’.

One reaction to these kinds of posts was for interviewees to co-create

more positive narratives to ‘counterbalance’ chaotic narratives. Sometimes

this was offering some relevant advice to solve a problem, but at other times

this involved the posting of alternative perspectives on children with Rett

syndrome, challenging a deficit model of disability and illness and focusing

instead on their child as a child first, or sharing positive experiences their

child had enjoyed. This reflects recent research suggesting that online forums

could be places where positive narratives of closure were co-created (Orgad,

2005), or where parents could share the achievements of their disabled

children (Jones and Lewis, 2001).

Peer versus professional expertise

Parents of adult children did not discuss having gained medical advice from

online peer support sites. This may partly reflect a lower need for medical

information, as outlined in Chapter 6. However, given that parents were

asked about their use of online peer support across their caring career, this

may be due to differences in disposition related to the relative status of peer

and professional opinions. This was an aspect that arose in some interview

accounts, where parents argued that medical expertise should be trusted

over the ‘opinions’ of parents. This was something that emerged in

interviews and was not specifically explored for all parents, but could benefit

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from further research. As with some other aspects of habitus this was a

popular view among older interviewees (expressed by three out of the five

parents in their 50s) but was not restricted to this age group. Nonetheless, no

parent in their 50s endorsed the view expressed by some interviewees that

peer expertise had an equal or greater value than medical expertise.

However, given the earlier findings showing how older parents had often

found a network of trusted professionals, this may instead reflect changing

experiences of medical support over time and greater opportunities to have

found suitable expert, medical support.

I aimed to answer the exploratory question of how an individual’s

habitus and possession of different forms of relevant cultural and social

capital affects their use of caring-related online support and information. In

terms of the impact of alternative social capital resources, this research was

illuminating in that it highlighted how parents’ use of different sources of

support becomes more differentiated over time, while being weighed up

alongside alternatives that are available both online and offline. This was an

important finding because it places the use of online support and information

within the realm of everyday practices, adding to the limited research that

explores the use of online support contexts within a wider set of practices

(e.g. see Baym, 2009), and how sources of online and offline support mesh

and can be complementary (Lowe et al., 2009).

The evidence relating to cultural capital was suggestive, mostly

because it emerged from accounts rather than being explored in all

interviews. Nonetheless, there were some intriguing findings that bear

further exploration in future research. These hinted at the differential use of

primary sources of information, particularly research papers and blogs, as

well as a tendency to research across a number of sources rather than to ask

peers for advice as a primary information-seeking strategy. However, there

was also evidence of parents gaining summaries of this research from other

parents in online support settings, suggesting a form of bridging capital.

Together these findings hint at a differentiated use of information in seeking

understanding about rare genetic syndromes, which requires further

research, for instance a survey exploring use of research papers in online

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searching rather than non-specific ‘information searching’ or use of ‘lay

health’ sites.

The evidence of how tastes, dispositions and practices influenced the

use of online support sites was significant because it provided evidence that

moved beyond social determinism and suggested how parents may identify

other ‘like’ parents with whom to create closer bonds. It was also useful to

identify that illness narratives online may influence parents’ engagement

with certain online spaces. There were some interesting intimations that

digital taste, illness narratives, emotional expression online and attitudes

toward medical advice may partly be connected to differentiation among

generations. These are areas worthy of further exploration in that they

provide ways to extend current conceptualisations of the differential use of

the Internet (as in Dutton and Blank’s ‘cultures of the Internet’, 2013) as a

way of exploring generational differences in use, but without being socially

deterministic. However, without more evidence of the prevalence of these

attitudes among certain age groups (ideally through quantitative data), the

ambiguity around the connection with age is difficult to resolve. Nonetheless,

these findings highlight the importance of understanding how the use of the

Internet relates not only to issues of technical ability but also to preferences

in wider information seeking and caring practices. This supports Kivits’s

(2009) argument that the use of the Internet in health should take into

account everyday media, health and information seeking practices.

8.4 The social differentiation of benefits from online support sites

How does the use of online peer support sites influence wider caring practices?

Is there any evidence of differentiation of benefits by age, income or education?

Chapters 5 and 7 presented quantitative and qualitative data about the

differentiation of benefits accrued from online support sites. These findings

are discussed below in terms of social capital benefits, knowledge and

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expertise ‘goods’, economic capital and symbolic capital in wider caring

fields.

8.4.1 Social capital benefits

Chapter 5 presented the rated importance of generic online support and the

benefits of online peer support, which were based on measures reflecting

Ferlander’s (2007) categories of emotional support, informational support

and instrumental support.

Online generic support was rated as important by 63.2 per cent of

survey respondents who had ever used it. A significantly higher proportion of

younger parents, parents of younger children and parents of children

diagnosed in the last seven years rated it as important when compared to

their peers. Its importance was also related to a greater number of years

using the Internet and having mobile access. This result appears to be in line

with other findings related to age reported in this thesis that suggest that

older parents benefitted less from online information, having already

established a certain level of expertise and trusted social capital sources upon

which to rely for advice and information when it is needed.

Eighty-four per cent of parents agreed that reading others’

experiences made them feel less alone (emotional support). In interviews,

parents described how they felt less isolated knowing that other parents

experienced some of the same difficulties and emotional reactions. This was

most strongly differentiated by time since diagnosis, but not in a linear way,

although the smallest proportion of agreement was among parents whose

child had been diagnosed more than 25 years ago. Interviewees’ accounts

showed that parents of children who had been diagnosed less recently were

still able to gain emotional support benefits, either when reading accounts

written by parents of adult children or as a way of reinterpreting their own

early reactions to their child’s diagnosis. Interestingly, parents with a higher

education qualification were more likely to report experiencing this kind of

emotional support. Interview data did not provide any further clues as to

why this may be, but this is an interesting area worthy of further research.

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A similar question explored agreement with having someone to talk to

online if one felt alone. This was asked of respondents who had

communicated with at least one carer exclusively online. This was only

significantly differentiated by age of child, with a linear relationship where

the younger the child, the higher the proportion agreeing with this statement.

This may partly reflect a lower level of alternative social capital resources

used by younger parents, as found among the interviewees. A comparison

across occupational group could not be carried out on this aspect of online

social capital benefit.

Rarely, parents described feeling a sense of companionship online,

with some conversations that were not direct requests for information and

more chatty. However, most of the time, interviewees reported that forums

were used to provide caring-specific advice, information and support.

These findings partly reflected wider literature, in that younger

parents were more likely to report benefits related to online peer support,

although differences by occupation (after Leonard et al., 2004) either could

not be carried out or were not significant.

8.4.2 Knowledge and expertise ‘goods’

In interview accounts, which covered use of online peer support across a

caring career, parents reported certain benefits across age, education and

income groups. This reflected benefits summarised in the literature cited in

Chapter 2, such as understanding the meaning of the diagnosis and prognosis

and gaining information to understand and interpret new behaviours and

symptoms. This reflected the use of online support sites as sources of ‘case

histories’ to understand prognosis that was described by Schaffer and

colleagues (2007) and Skinner & Schaffer (2006). Parents of adult children

did not report having used online peer support for day-to-day caring advice

and information about special educational needs and medical information.

This may reflect both the level of already-accrued expertise with regard to

caring practices, their children’s age stage and the lower level of novel health

problems experienced by the children of these interviewees. More educated

and wealthier interviewees discussed seeking different forms of knowledge

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from online peer support groups, including information about the daily

management of health issues and advice about aspects of special educational

provision. However, as noted in Chapter 7, these benefits were those

reported by parents within interviews, and it was possible that in

retrospective accounts, some topics were less memorable to parents of older

children than others.

8.4.3 Economic capital

Similarly, it was difficult to assess differences in economic capital gains as

these were not explicitly covered within interviews, but emerged in some

interview accounts in response to questions about receiving practical help or

help to solve a problem. A range of parents across different social groupings

reported having gained information that had or could potentially be

converted into economic capital gains. As described in Chapter 7, there was

some suggestion that younger, wealthier and more educated parents had

gained the largest actual ‘lump sum’ benefits, for example, having an

extension to their house funded. However it was not possible to ascertain

whether some parents had never gained such information online or whether

they already gained this information from an alternative source. This is an

area where further research that explicitly explores the benefits gained by

carers across a range of support sources, both online and offline, would shed

further light on this speculative finding.

8.4.4 Symbolic capital in wider fields

Even parents with high levels of relevant cultural capital (for instance, a

Psychology-related Masters) reported a sense of feeling powerless in initial

medical encounters. An important aspect of online support was therefore the

possibility of ‘borrowing’ cultural capital from more experienced parents to

argue for additional support, or to decide when to challenge a local decision

about services. This was similar to what McKeever & Miller (2004) described

as borrowing symbolic capital in caring fields, only instead of borrowing

capital from a professional when dealing with another professional,

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interviewees described how online peer support allowed them to borrow the

expertise of more experienced parents, or parents who had managed to

challenge a local decision, or were allowed access to a service in another area.

This borrowed capital could be used to support parents’ ‘gut instincts’ in

making medical decisions or in daily management of health problems or

could even include access to professional reports that had been used to argue

for funding for specialist equipment. However, as described in section 8.3.3,

not all parents were prepared to challenge medical advice, which arguably

related to wider differences in habitus regarding judgements of the relative

importance of peer and professional advice, or having access to trusted

medical expertise.

In terms of actual benefits reported, these included gaining additional

support on a statement, challenging a decision to limit services or gaining a

piece of equipment. There was no evidence that wealthier or more educated

parents had disproportionately benefitted from this kind of information, but

no parents of adult children reported gaining such benefits. Again this is

likely to reflect the different needs, greater expertise and lower incidence of

novel issues faced by parents of adult children and perhaps limitations to the

recall of past events in a retrospective account.

8.5 Key contributions to our understanding of the role of online

support and information in modern health and caring practices

As discussed above, I aimed to provide a more coherent account of the role of

online peer support within the wider caring practices of parents of people

with a rare syndrome. In doing so, I hoped to deal with what I argue is the

currently fragmented nature of our understanding of this field. Overall I

believe that this research has provided a valuable contribution to the field

and succeeded in developing a deeper understanding of the links between

structure and agency-based accounts of the use of online peer support among

carers. In this final section I bring this thesis to a close by highlighting what I

believe to be the main contributions to existing research.

275

8.5.1 Meshed practices: the importance of understanding the use of

online peer support in context

I began this thesis by arguing that current research was methodologically and

theoretically fragmented. My research proposed to provide a more coherent

account by using Bourdieu’s concepts of capitals, fields and habitus within a

mixed methodological approach. My aim was to understand the use of online

peer support groups and sites as they exist within an embedded social

context, taking into account the ‘meshing’ of online and offline sources of

support, the e-scaped nature of health and the social differentiation of

Internet use. By researching the use of such sites from the perspective of

potential and actual users within a single case study group, this research has

explored how the social differentiation of different forms of online peer

support within this group relates to everyday information-seeking, online

and caring practices, without being socially deterministic.

The main benefit of using this method has been the ability to bring

together macro social differentiation data and micro data about everyday

practices in order to explore both the wider context and detail of how online

support interactions occur within a wider, and socially structured social

context. This has paid dividends in demonstrating how the use of online

support is used in a dynamic way over a carer’s career for the building of

expertise and valued social capital, depending upon a potential user’s existing

alternative resources, stockpiles of relevant expertise, cultural capital,

habitus, child’s health and state of biographical disruption and preferred

illness narrative.

8.5.2 Questioning digital inequality: the role of expertise and alternative

sources of support

A key contribution to the literature was the ability to interrogate the

apparent digital inequality experienced by older parents of people with rare

syndromes. As discussed in Chapter 2, there have been debates about

whether social differentiation in the use of the Internet should be understood

276

as digital inequality or the result of digital choice. This research presented a

third way by demonstrating how online support and information was used as

one tool among many and should be understood within the context of

existing expertise, sources of support and information needs. Although my

interviewees did not include parents aged over 60, the parents aged in their

50s demonstrated how they were able to use the Internet alongside other

sources of support and information to carry out ‘expert carer’ work. Through

their interview accounts they demonstrated that, rather than being

intimidated by or unfamiliar with online sources of support, they did not

value the goods available, having acquired more expertise and often having

little in common with the younger parents who appeared to be more active in

such online spaces.

8.5.3 The reproduction of symbolic power online

There were some interesting suggestions in the data that the interests of

influential institutions and more socially privileged people were privileged

and reproduced online, both through the unequal symbolic power conferred

by the structure of some online platforms and the kinds of conflicts that were

reproduced in some online support settings. Similarly, the use of blogs

suggested a possible online space where privileged groups could

‘fortuitously’ find similar others, where parenting and other practices were

rarely criticised and expertise could be traded in an ostensibly public, but

actually differentiated social space. These are also areas worthy of further

research.

8.5.3 Troubling the concept of lay health support sites

As described in Chapter 7, I had approached this research with an

expectation of finding online lay support sites that would be distinct from

sites where institutional interests would be represented. This was in part due

to the emphasis on lay health information within the literature and the

anxieties about the credibility of such information when presented alongside

other forms of information. Yet through interviews it became clear that

277

forums that were set up for and by parents were used for wider purposes

than for sharing lay health information and emotional support. They were

also used as a means to exchange different kinds of information, to link to

outside sites related to research and for parents’ own summaries of current

research. This perhaps reflects the particular tasks that the ‘expert carer’ of

someone with a rare genetic syndrome might engage in, as reflected in

Skinner and Schaffer’s (2006) account of parents in online advocacy

networks presenting research that was used to fight for experimental

treatments. It may also reflect the broader use and connectivity of social

networking sites and their use by parents to connect to wider networks of

interested parties, such as researchers, clinicians and charities, and vice

versa. This suggests that traditional concepts such as lay versus other forms

of research need rethinking when discussing (particularly more educated)

parents and patients who can and do develop specialist, expert forms of

knowledge that combine both lay understanding and skills in synthesising

research.

8.5.4 It’s about time: the importance of understanding practices within

a wider socio-historical context

As argued above, this research presented the role of online peer support

among a case study group of parents of people with a rare syndrome, who

had experienced their caring careers during a time of great social and

technological change. It is worth noting that these parents were already

engaged with various sources of support, both online and offline, so may have

been more proactive in seeking information than parents not represented in

this research.

Nonetheless, this research still provided a coherent exploration of the

role of the Internet within the wider social practices of these parents.

Statistically it was not possible to differentiate between the impact of

parents’ age, their child’s age and the time since their child’s diagnosis in

understanding differences in use of the Internet for caring-related purposes.

Even with a larger sample (which is not possible within a small group of

parents of people with a rare syndrome, unless an extremely comprehensive

278

database exists), issues of multicollinearity would prevent teasing out the

relative impact of these variables, which all relate to time. However, by

combining qualitative with quantitative data it was possible to explore how

these intersecting aspects of parents’ lives influenced their use of online

support, and a much richer picture emerged, as described above. It is possible

– and likely – that as the Internet becomes increasingly embedded in

everyday life, and the younger group of parents in this study ages, that use of

the Internet for support and information by parents of people with rare

syndromes will become commonplace.

This research therefore follows Bourdieu (1993) in arguing that it is

important, when exploring practices, to understand them within the social

and historical context in which they occur. This thesis has shed light on how

carers’ use of the Internet reflects their socio-historical position, wider social

practices and the cultural and social capital resources available to them.

However, it has not downplayed parents’ active agency within these

constraints to gain expertise, support and other goods that have the potential

to benefit their children. I therefore believe that this research has succeeded

in bringing together macro and micro data to develop a greater

understanding of the contingent use of online support and information in the

wider caring practices of parents of people with a rare syndrome.

279

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