Suzanie Adina MAT SAATPart of a PhD thesis 22 September 2014

This PhD thesis at Loughborough University explores the experiences of children whose parent has cancer and their information needs and behaviour to cope with the challenges they faced as dependent children and care-givers.

Information Needs of Children whoseParent has Cancer

A Participatory

Action Research

PARPAR

To demonstrate Participatory Action Research (PAR) used to explore, collect andAIM

analyse data to understand children’sinformation experience including their

perception of cancer and information culture; information needs, information seeking behaviour, barriers and enablers.

The study was conducted based on an extensive literature review and the experiences of ten Malay families; ten breast cancer patients and 22 dependent children.

METHOD

WHAT’S NEWUse of PAR for health and information science research within a Malay culture setting, showcasing its effectiveness in collecting rich qualitative data via participant engagement of cancer patients and their children.

PREMISE

In 2007, it was reported that there were 18,219 new adult cancer cases in Malaysia (Omar and Ibrahim, 2011, p.4-29). About 45,547 children were affected by their parents’ diagnosis.18,219 new adult

cases

45,547 children affected

PREMISE

Cancer diagnosis creates multiple problems for affected families, including major changes in living patterns, roles and relationships (Mat Saat, G. 2012; Somasundaram, 2004; Scott et. al. 2003b).

“If being informed helps people to reduce uncertainties about their health care, why do people seem not to want it and why do they prefer to obtain it from non-institutional or non-professional sources?” (Pettigrew, 1999)

PREMISE

“No study to date has examined the timing, nature, and extent of communication between parents with cancer and their children or studied why parents do or do not talk to their children about such difficult and important issues or inquired about what help parents have received or might have liked.” (Barnes et. al. 2000)

The affects of cancer to children for the Malay ethnic group were not previously documented and the burdenof caregiving and the consequences of a lack of information were greater than anticipated (Mat Saat, A.,2010; Somasundaram, 2004; Scott et. al. 2003b).

THEORTICAL SOLUTION:Knowing information preferences may help in tailoring information and in the amount of information and specific needs (Baker and Pettigrew, 1999).

“People are better able to accept and act on information when presented in a culturally acceptable intervention method” (Hodge, Fredericks and Rodriguez, 1998).

However, “clinicians elicit fewer than half of patients’ concerns and consistently fail to discuss patients’ values, goals of care, and preferences with regard to treatment” (Morrison and Meier, 2004).

PREMISE

THEREFORE: Develop a more participative framework for understanding and facilitating children’s information needs.

Participative Action Research (PAR) is useful to assess, understand and develop solutions that can result in information that is more complete, rich and as accurate as possible in health-related issues (Chevalier and Buckles, 2013; Read, 2012; Cochran et al., 2008; Erick et al., 2008; Viswanathan et al., 2004; Chiu and Wistow, 2002; Waterman et al., 2001; Green et al., 1995 and, Kemmis and McTaggart, 1988).

PREMISE

PAR Methodology Framework Participative Action Research to investigate the Information Needs of Children whose Parent has Cancer

STAGE ONE Preliminary Participant SelectionCriteria:i.Cancer patients who are parentsii.Dependent children of cancer patients aged between 5-18 years old.

Tools: Inquiry to participate form (InqE-v.04 and InqBM-v.02).

Results: 10 families actually participated.

1 STAGE TWO Session OneIntroduce research aims and objectives, research process, ground rules & participatory mechanism.

Tools: i.Scripted introduction to researcherii.‘Participant Information Sheet’iii.‘Participation Consent’ formiv.‘Statement of Confidentiality’ form

Results: 2 contact hours with 32 people.

2 STAGE THREE Session TwoInvestigate experience and information needs; knowledge and experience of “cancer”, information needs, seeking behaviour, preference and problems

Tools: Self report via illustration, written account, narratives and a 15-item questionnaire.

Results: 2 contact hours with 32 people.

3

Participative Action Research (PAR) Overview

(Kemmis and McTaggart, 1988)

RESULTS

405 forms distributed205 respondents

72 families

30 families

22 families

10 families

A parent with children between 5 – 18 years oldHad informed their children about cancer diagnosis

Willing to participateWilling for their children to participate

Willing to attend sessions

Can attend sessions

Actually attended sessions

STAGE ONEPreliminary Participant Selection

10 Female Breast Cancer Patients22 male and female children

STAGE TWOSession One x 2-hours

STAGE THREESession Two x 2-hours

STAGE FOURSession Three x 2-hours

STAGE FIVESession Four x 2-hours

STAGE SIXSession Five x 2-hours

10 families

100 contact hours with 32 people

PAR activities

STAGE FOUR Session Three:Assimilate information needs: Compare and analyse results from Session Two to develop common themes and/or issues and prioritising needs.

Tools:Participative discussions and priority lists

Results: 2 contact hours with 32 people.

4 STAGE FIVESession Four:Identify key information needs:Consensus agreement in key information needs

Tools: Participative discussions, priority lists and consensus vote.

Results: 2 contact hours with 32 people.58 issues raised.

5 STAGE SIX Session Five:Assimilate possible solutions: Compare and analyse results from Session Four to find out participants’ strategies in resolving key information needs.

Tools: Participative discussions, strategy list and consensus vote.

Results: 2 contact hours with 32 people.

6

Participative Action Research (PAR) Overview (Kemmis and McTaggart,

1988)

PAR Methodology Framework Participative Action Research to investigate the Information Needs of Children whose Parent has Cancer

RESULTS

Cancer is dangerous and can be deadly

Requires specialist doctors, complex equipment and special ward

Cancer treatment involves chemotherapy, radiotherapy and immunotherapy

Cancer develops from uncontrolled cell growth or mutation

Requires vigilant care and frequent medical check-up

Rest as a precursor to getting better

Tamoxifin causes early menopause Mastectomy causes pain Cancer damages cells

Cancer can spread and damage other parts of the body (metastases)

Chemotherapy causes nausea, vomiting and hair loss

Effects of frequent vomiting

Surgery; mastectomy or lumpectomy and/or other invasive action to save life

Parent’s bodily aches and pains

Effects of bodily aches and pains

STAGE FIVESession Four: 58 Issues Raised and/or Discussed

RESULTS

STAGE FIVESession Four: 58 Issues Raised and/or Discussed

Effects of hair loss Lifestyle Negative behaviors

Sibling Cancer prevention

Effects of early menopause

Attack Empathy Housework Health awareness

Spiritual state Test from God Increase in love

Distribution of chores

Empathy

Emotional state Negative feelings Positive behaviors

Family cohesiveness

Increase in love

History and genetic predisposition

Negative behaviors

Parent with cancer

Types of food Positive behaviors

Unhealthy habits Empathy Health parent

Preparation of food

Parent with cancer

Polluted environment

Negative feelings Self Exercise Health parent

Self Sibling Housework Distribution of chores

Family cohesiveness

RESULTS

STAGE FIVESession Four: 58 Issues Raised and/or Discussed

Types of food God’s role Wordiness as deterrent Type of information

Preparation of food

Parent as information provider

Language barrier Co-developed solution to identified problems

Exercise Doctor as information provider

Attractiveness of information

Accessibility of solutions

Cancer prevention

Other sources of information

Handyness of information

Format of solutions

Health awareness

Availability and willingness of information provider to share information

Self-reported key information needs

Prayer

Access to the Internet, cancer resources center and cancer information

Perception of cancer and self-report of experience

STAGE EIGHTReport:Report findings.

Findings:95 Codes20 themes, 13 organising themes and 6 global themes.

Results:•Consequences of children’s understanding or lack of understanding•List Of Tasks For Children Caregivers•Participant’s Issues: Identification of roles of information, information seeking behaviour, information needs, preferred source of information•Particiapnt’s Suggested Solutions:•Children’s Reactive Information Seeking Behaviour - An Integrated Model

8

Participative Action Research (PAR) Overview (Kemmis and McTaggart,

1988)

STAGE SEVEN Synthesizing participative contributions: Synthesize data to answer research aims and objectives towards development of thesis and recommendations for information provision

Tools: Coding and Thematic analysis.

7

PAR Methodology Framework Participative Action Research to investigate the Information Needs of Children whose Parent has Cancer

RESULTSSTAGE SEVENCoding and Thematic analysis

STAGE EIGHT•Consequences of children’s understanding or lack of understanding•List Of Tasks For Children Caregivers•Participant’s Issues: Identification of roles of information, information seeking behaviour, information needs, preferred source of information•Participant’s Suggested Solutions•Children’s Reactive Information Seeking Behaviour - An Integrated Model

Access to information Alien thing Alone Anger Assimilation of

informationAttitude to information

Automatic assistance

Bald Being Active Book Cancer in the family Cells Chemotherapy Chores

Cleaning Comic Cooking Damage Death Depressed Disgust

Disheartened Divorce Exercise Experience Faith Fear Food

Fruits Frustrated God’s test Good deeds Hair loss Hate Health knowledge

Hospital stay Illustration Immediacy Information culture

Information problem Ironing Language

Less fat Less preservatives Less salt Love Massaging Menopause Menses

Monitoring health

Negative emotion Non fast food Non fried food Other health

practices Pain Palliative care

Pity Pollution Polygamy Poor school performance Prayer Prior knowledge Reactions

Reality drama Resentment Rest Role of doctor Role of father Role of mother Role of prayer

Role of sibling Role of to self Sadness Second-hand smoke Self-check Separation

anxietySources of

information

Spread Still love parent Stress Suggested solution Surgery Thanks to God Treatment

process

Type of information Uncaring Uncommunicative Uncooperative Vegetables Video Vomiting

What faith can do Willpower Wordiness Worry

STAGE SEVENList of 95 Codes (in alphabetical order)

STAGE SEVENThematic Analysis: Development of global themes

THEMES ORGANISING THEMES GLOBAL THEMES

1. A type of possibly deadly illness, sickness or disease Medical Inference 1. Children made sense of cancer through their experience, observations and beliefs.2. Requires hospitalisation, special medication and long

treatment process

3. Physical side effects of cancer and cancer treatment State of Parent Being Sick*4. Effects of side effects*5. Non physical side effects of cancer and cancer treatment6. Medically proven cause Causes*7. Perceived cause

8. Negative psychological impact Psychological impact to children

2. Lack of information resulted in children not knowing and/or being unprepared for cancer’s impact on their lives.*9. Positive psychological impact

10. Changes to roles of family members Changes to family dynamics 3. Cancer changed familial dynamics.

11. Familial responsibilities Changes to family processes* 12. Problems in the family

13. Changes to diet Lifestyle changes 4. Cancer changed lifestyle.

* 14. Changes to health behaviour Changes to health practices

* 15. Religious fervour Increased religious attention

16. Types of information provider Information sources 5. Children had limited access to information.

17. Problems in accessing information Information problems 6. Children reacted to a health-based situation or stimuli and required topic-based information to make sense of their situation and to guide their adult-expected behaviour.

18. Relevancy and readability of information

19. Types of information needs Prioritised information needs

20. Viability of suggested solutions Suggested solutions

STAGE EIGHTConsequences of children’s understanding or lack of understanding

POSITIVE NEGATIVE

Attitudes to information sharing

Open and accessible information Closed and inaccessible information

Outcomes Positive and indicates understanding of cancer

Negative and indicates lack of understanding of cancer

Consequences: Children's reaction to cancer and cancer treatment

• Increase in love, patience and empathy toward parent.

• Increased understanding of the importance of the cancer care continuum.

• Decrease in love, patience and empathy toward parent.

• Decreased understanding of the importance of the cancer care continuum.

Consequences: Children's reaction to changes in familial dynamics

• Understanding new roles and tasks.

• Increase in patience and willingness towards burden of care.

• Does not understand new roles and tasks.

• Decrease in patience and willingness towards burden of care.

Consequences: Children's reaction to changes in lifestyle

• Increase care, knowledge and adherence to changed diet and lifestyle changes.

• Increased observance of religious practices.

• Resent and feel forced to adhere to changed diet and lifestyle changes.

• No indication of negative change towards religious practices.

FINDINGS

LIST OF PARTICIPANT’S ISSUES RAISED AND/OR DISCUSSED

PARTICIPANTS’ ISSUES

LANGUAGE PREFERANCE

Written: Bahasa Malaysia Verbal: Bahasa Malaysia

CANCER SPECIFIC INFORMATION

Definition of Cancer Definition of Disease Types of CancerIs cancer dangerous? Is cancer contagious? Cancer detection

Treatment process flow List of possible side effects of cancer treatment Cancer preventionWhy does cancer take a long time to recover

from? Why does cheomothearpy cause vomitting? Why does cheomothearpy cause hair loss

How to ask parents about cancer? How to tell children about cancer? How to tell children about diagnosis?

FORMAT

Interaction with ill parent Interaction with healthy parent Interaction with attending doctorInteraction with other children in a similar

situation Interaction with counselors at cancer centers Talks at school

Comic book with problem-solving setting Reference book with many pictorial references Easy-to-read guide book

Dramatised story of a family with cancer Dramatised problem solving situationReality television of coping with cancer

in the familyMagazine article Newspaper article

CHILDREN’S CONCERNS

How to care for a cancer patient List of possible ways to help parent with cancer List of possible changes to familial roles

How to take care of self How to take care of younger siblings How to talk to parents about the parents’ cancer experience?

Assurance of continuation of care and love towards the child

How to talk to parents about what made the parent upset

How to talk to parents about what made the child upset

How children can show their caretowards the ill parent Why are household chores unequal Why girls have to do more caregiving tasks

Why is father less helpful / less supportive? How to approach ill parent when the ill parent looks bad/disgusting/not normal How to not be scolded often

Why is ill parent emotional? How to make ill parent to be less emotional How to calm ill parent when ill parent is angry or upset

FINDINGS

LIST OF PARTICIPANT’S ISSUES RAISED AND/OR DISCUSSED

PARTICIPANTS’ SUGGESTED SOLUTIONS

LANGUAGE PREFERANCE

Written: Bahasa Malaysia Verbal: Bahasa Malaysia

TOPICS: CHILDREN’S CONCERNS

Easy to follow guide on how to care for a cancer patient

Easy to follow guide on how children may help parent with cancer

Explain list of possible changes to familial roles

Easy to follow guide on how to take care of self

Easy to follow guide on how to take care of younger siblings

Easy to follow guide on how to talk to parents about the parents’ cancer

experience?

Easy to follow guide on how to get assurance of continuation of care and

love towards the child

Guide for parents’ expectation of children’s’ abilities as a caregiver

Guide for parents to be aware of children’s needs

TOPICS: CANCER SPECIFIC INFORMATION

Explain how is cancer dangerous Explain treatment process flow Explain why side effects happen

Explain why ill parent may get emotional

Explain how children can cope with side effects

INFORMATION MEDIUM

Interaction with ill parent Interaction with healthy parent Interaction with attending doctor

Interaction with other children in a similar situation

Interaction with counselorsat cancer centers

Talks at school

Comic book with problem-solving setting

Pictorial reference book with easy to understand explanations about cancer Easy-to-read guide book

LIST OF TASKS FOR CHILDREN CAREGIVERS

TASKS ELDEST FEMALE CHILD

OTHERFEMALE

CHILDREN

MALE CHILDREN

A. Household chores      Preparing food for the family ✓ ✓  Purchasing food for the family ✓   ✓Setting a meal for the family ✓ ✓  Clearing and cleaning up after a meal ✓ ✓  Cleaning the house ✓ ✓ ✓Laundry ✓ ✓ ✓Minor house repairs     ✓Moving furniture to make way for wheel chair or providingsupport posts for parent to move inside the house

✓ ✓ ✓

B. Caregiver tasks      Accompanying parent to the hospital or clinic ✓ ✓ ✓Accompanying parent for a hospital stay ✓    Accompanying parent to sleep in a more comfortable areain the house

✓    

Helping parent to change clothes ✓    Helping parent to move around in the house ✓ ✓ ✓Feeding parent and monitoring nutritional intake ✓    Monitoring consumption of medication ✓    Identifying health issue(s) and providing solution(s) ✓    Relieving bodily aches and pains ✓ ✓ ✓Cleanliness of “sick” room ✓    Management of parent’s nausea ✓ ✓  

LIST OF TASKS FOR CHILDREN CAREGIVERS

TASKS ELDEST FEMALE CHILD

OTHERFEMALE

CHILDREN

MALE CHILDREN

Holding up parent and providing containers when parent wastoo ill to vomit in the bathroom

✓ ✓  

Supporting parent to go to the toilet ✓ ✓  Changing the bed ✓    Preparing clothes ✓ ✓  Collecting parent’s hair ✓    Cutting parent’s nails ✓    Being with the parent in free time ✓ ✓  Listening to parent’s complaints ✓ ✓  Praying for the parent to get better ✓ ✓ ✓Remembering or taking down notes on doctors’ instruction or advice

✓    

Coordinating parental care among siblings ✓  Ensuring parent is presentable to receive visitors ✓ ✓  C. Other tasks      Monitoring siblings’ homework ✓    Taking care of ill siblings ✓    Entertain and provide for guests ✓    Management of new familial diet ✓    Management of new lifestyle changes ✓    

TOTAL NUMBER OF TASKS 35 17 9

STAGE EIGHTCHILDREN’S REACTIVE

INFORMATION SEEKING BEHAVIOUR

-AN INTEGRATED MODEL

Explains the observed relationship between children participants’ reaction to a health

situation and the subsequent processes

they undergo to resolve their state of

information need.

CONCLUSIONSPAR was useful in obtaining rich data about 10 Malay cancer patients and their 22 dependent children. PAR helped to identify that: • Cancer seemed to affect parenting abilities.

• Participants’ challenging experiences seemed to convey that a lack of culturally relevant and age-appropriate information and the shift in caregiving responsibilities to dependent children necessitated a more assessable, supportive and sensitive information system.

CONCLUSIONS• Children’s understanding of cancer seemed to be influenced

by their experiences and observations, many of which resulted in misconceptions about cancer, its causes, treatment and preventative measures.

• It seemed that children participant’s reaction to a health situation triggered their information behaviour.

• Children seemed to have more dimensions of concern and their cancer experience highlighted the myriad challenges they faced.

CONCLUSIONS• The burden of caregiving and the consequences of a lack of

information were greater than anticipated.

• Children’s experiences identified that a lack of children-centric information about the affect of cancer to them and, parental expectations in the face of illness necessitated a more assessable, attractive and sensitive information system.

• A synthesis of the data contributed to the development of a “Children’s Reactive Information Seeking Behaviour – An Integrated Model” was developed to explain the observed relationship between children participants’ reaction to a health situation and the subsequent processes they undergo to resolve their state of information need.

Barnes et. al. 2000Barnes, J., Kroll, L., Burke, O., Lee, J., Jones, A. and Stein, A. (2000) Qualitative Interview between parents and children about maternal breast cancer. BMJ. [Internet] 2000;321;479-482 Available from: <http//www.bmj.com > [Accessed 2 September 2005].

Baker and Pettigrew, 1999Baker, L. M. and Pettigrew, K. E. (1999) Theories for practitioners: Two frameworks for studying consumer health information-seeking behaviour. Bulletin of the Medical Library Association. [Internet] October; 87(4), pp. 444-450. Available from: < http://www.pubmedcentral.nih.gov/piorender.fegu?arbid=226619&action-stream&blobtype=pdf.> [Accessed 12 December 2004].

Chevalier and Buckles, 2013Chevalier, J. M. and Buckles, D. J. (2013) Participatory Action Research: Theory and Methods for Engaged Inquiry. New York: NY: Routledge.

Chiu and Wistow, 2002Chiu, L.F. and Wistow, G. (2002) Improving Access to Cancer Information for Doncaster Residents. [Internet]. Doncaster, Nuffield Institute for Health. Available from:< http://www.nuffield.leeds.ac.uk/downloads/cancer_info.pdf > [Accessed 1 December 2004].

Cochran et al., 2008Cochran PA, Marshall CA, Garcia-Downing C, Kendall E, Cook D, McCubbin L (2008) Indigenous ways of knowing: implications for participatory research and community. Am J Public Health 2008; 98(1): 22–7.

Erick et al., 2008Erick W, Mooney-Somers J, Akee A, Maher L. Resilience to blood borne and sexually transmitted infections: the development of a participatory action research project with young Aboriginal and Torres Strait Islander people in Townsville. Aboriginal and Islander Health Worker Journal 2008; 32(6): 5–8.

Green et al., 1995 Green, L.W., George, M.A., Daniel, M., Frankish, C.J., Herbert, C.P., Bowie, W.R. and O’Neill, M. (1995) Study of Participatory Research in Health Promotion: Review and Recommendations for the Development of Participatory Research in Health Promotion. Ottowa: Royal Society of Canada. In Hughes, I. (2008). Action research in healthcare. In P. Reason & H. Bradbury (Eds.), Handbook for Action Research: Participative Inquiry and Practice (pp. 381-393). London: Sage

REFERENCES

Hodge, Fredericks and Rodriguez, 1998Hodge, F. S., Fredericks, L. & Rodriguez, B. (1998) American Indian women’s talking circle: A cervical cancer screening and prevention project. Cancer. [Internet] 78(S7), pp. 1592-1597. Available from: < www3.interscience.wiley.com> [Accessed 7 May 2005].

Kemmis and McTaggart, 1988emmis, S. and McTaggart, R. (Eds) (1988) The action research planner (3 rd ed.) Geelong, Victoria: Deakin University Press.

Morrison and Meier, 2004Morrison, R. S. and Meier, D. E. (2004) Palliative Care. The New England Journal of Medicine. [Internet] The New England Journal of Medicine 2004, 350(25), pp. 2582-2590. Available from: <http:// http://content.nejm.org/> [Accessed 7 November 2004].

Omar and Ibrahim, 2011, p.4-29Omar, Z. A. and Ibrahim, N. S (2011) National Cancer Registry Report 2007, Ministry of Health Malaysia 2011. Available from :< http://www.makna.org.my/PDF/MalaysiaCancerStatistics2007.pdf> > [Accessed 20 July 2013]

Mat Saat, A. 2010Mat Saat, A. (2010). Interview with the author on 5 June 2010. [Discussion about cancer experience among Malay patients].

Mat Saat, G. 2012Mat Saat, G (2012). Interview with the author on 14 September 2012. [Discussion about psychological impact of cancer to adult patients and their dependent children.]

Read, 2012Read, Clancy and Curtin University (2012). Applying a participatory action research model to assess and address community health concerns among tribal communities in Gujarat, Western India: the potential and challenges of participatory approaches. [Doctoral Thesis] [Internet] Centre for International Health. Available from: <http://trove.nla.gov.au/work/175518870?selectedversion=NBD50509503. [Accessed 30 June 2013]

Somasundaram, 2004Somasundaram, S. (2004) Welcome Remarks. [Launch]. Launch of ‘A Parent’s Guide to Children with Cancer’. Kuala Lumpur

REFERENCES

Scott et. al. 2003bScott, J. T., Prictor, M. J., Harmsen, M., Broom, A., Entwistle, Vv, Sowden, A. and Watt I. (2003b) Interventions for improving communication with children and adolescents about a family member's cancer. The Cochrane Database of Systematic Reviews 2003, Issue 4. Art. No.: CD004511. DOI: 10.1002/14651858.CD004511.

Viswanathan et al., 2004Viswanathan, M., Ammerman, A., Eng, E., Gartlehner, G., Lohr, K.N., Griffith, D., et al. (2004a) Community based Participatory Research: Assessing the Evidence. Evidence Report/Technology Assessment No. 99 (No. AHRQ Publication 04-E022-2). Rockville, MD: Agency for HealthcareResearch and Quality. In Hughes, I. (2008). Action research in healthcare. In P. Reason & H. Bradbury (Eds.), Handbook for Action Research: Participative Inquiry and Practice (pp. 381-393). London: Sage.

Waterman et al., 2001Waterman, H., Tillen, D., Dickson, R. and de Koning, K. (2001) ‘Action research: a systematic review and guidance for assessment’, Health Technology Assessment, 5 (23): 1–166. In Hughes, I. (2008). Action research in healthcare. In P. Reason & H. Bradbury (Eds.), Handbook for Action Research: Participative Inquiry and Practice (pp. 381-393). London: Sage.

REFERENCES

MAT SAAT, S. A. (2014) A Participatory Action Research: Information Needs of Children whose Parent has Cancer [Doctoral Thesis] Loughborough University

This PhD thesis at Loughborough University explores the experiences of children whose parent has cancer and their information needs and behaviour to cope with the challenges they faced as dependent children and care-givers.

THANK YOU

Information Needs of Children whose Parent has Cancer