evaluating adult home care through methods of observation ·
TRANSCRIPT
Evaluating adult home care through methods of
observation
Monica Leverton (PhD student)
UCL Alzheimer’s Society Independence at Home Centre of Excellence, Division of Psychiatry
Centre of Excellence for Independence at Home
In people with dementia living in their own homes, what factors put them at risk of losing their independence and how can these factors be
managed?
How will we do this?
How can family carers be supported to deliver care and manage behaviour that challenges?
How can home care workers best enable people living with dementia to retain their
independence?
My PhD Background: • In 2015 in the UK, 850,000 people were diagnosed with dementia[1]
- 67% living in own home
• Being able to remain at home is preferred choice for persons living with dementia and family members - Support of paid home care services is essential
• 400,000 people living with dementia require regular support from paid home care services[2]
• Budget cuts of almost 40% have greatly affected the home care sector - high psychological burden[3], feel inadequately trained or supported[4], have low job satisfaction[5]
Objectives
• To explore the nature and organisational culture of home care through an ethnographic approach
• To understand the training, skills and learning needs of home care workers to aid the development of a training programme
• To understand barriers and facilitators to implementing psychosocial interventions delivered through staff training in home care agencies
PhD - Methods
Methods
Systematic review
Interviews Participant
observations
Systematic review
‘A systematic review of observational studies of adult home care’
Monica Leverton1, Alexandra Burton1, Jessica Rees1, Penny Rapaport1, Jill Manthorpe2, Murna Downs3, Jules Beresford-Dent3, Claudia Cooper1
1) University College London 2) King’s College London 3) University of Bradford
Rationale
• NIDUS-Professional design of our participant observations
• Limited previous research to inform our methods, specific to dementia and home care
• How has home care been observed with any care population?
Aims
Research aim 1:
To describe the methodologies that have been used to observe home care practices
Research aim 2:
To explore how observation methods can inform researchers’ understanding of the quality of care delivered
Search strategy
Databases: Pubmed + CINAHL Search terms: ‘Home care services’ ‘Home health care’ ‘Home nursing’ ‘Observation’
Inclusion Exclusion
• Methods of observation
• Focus of observation on home
care worker
• Adult care recipients
• Health professionals (doctors,
nurses, OTs, etc.)
• Family or volunteer carers
• Observations outside of home
Search strategy continued…
Initial search
Title & abstract
screening
Full text screening
850 studies
2 independent raters
84 studies 15 studies
Quality assessment
CASP – Qualitative Checklist Section A (Validity)
1) Was there a clear statement of the aims of the research?
2) Was a qualitative methodology appropriate?
3) Was the research design appropriate to address the aims of the research?
4) Was the recruitment strategy appropriate to the aims of the research?
5) Was the data collected in a way that addressed the research issue?
6) Has the relationship between researcher and participants been adequately
considered?
1 2 3 4 5 6
Casado-Meja & Ruiz-Arias (2016) Y Y Y Y Y Y 6
Cloutier et al. (1999) Y Y Y Y Y N 5
Nielsen & Jørgensen (2016) Y Y Y Y Y N 5
Rabiee & Glendinning (2011) Y Y Y Y Y N 5
Roberts et al. (2015) Y Y Y Y Y N 5
Swedberg et al. (2012) Y Y Y N Y Y 5
Tufte & Dahl (2016) Y Y Y Y Y N 5
Cataldo et al. (2015) Y Y N N Y Y 4
Czuba et al. (2012) Y Y Y N Y N 4
Sundler et al. (2016) Y Y Y N Y N 4
Swedberg et al. (2013) Y Y Y N Y N 4
Glasdam et al. (2013) Y Y N N Y N 3
Kalman & Anderson (2014) Y Y Y N N N 3
Uys (2003) Y Y Y N N N 3
Uys (2002) Y Y N N N N 2
PaperQualitative checklist criteria Total score
(out of 6)
Quality Assessment
Data extraction
Sweden = 4, Denmark = 3, South Africa = 2, Spain = 1, Canada = 1, UK = 2, USA = 1, Zambia = 1
Older people and people with dementia = 8, Chronic illness or disability = 3, HIV/AIDS = 3, Rehabilitation = 1
Results
Research aim 1: To describe the range of methodologies that have been
used to observe adult home, health and social care practices
Observation methods
• ‘Participant observations’ (n = 4)
• ‘Observations’ (n = 2)
• ‘Field Observations’ (n = 8)
• ‘Ethnography’ (n = 1)
• Structured (n = 2)
o Structured tools or time sampling procedures
• Guided (n = 8)
o Semi-structured plan
• Unstructured (n = 5)
o Inductive
Results
Observation methods
Recording data: - During or after visits? - Pen & paper or laptop? - Researcher’s reflective
stance?
Number of researchers, home care workers, client
participants: Greatly varied! - Researchers – 1 to a team - HCWs – 2 to 19 - Clients – 1 to 69
Researcher role: Complete observer or participatory?
Time observing: - Number of hours, number of days or visits, number of
recordings, over x months/years? - Pre-determined or until saturation? Clients availability? - Outside the home (hospital, clinic appointments, staff
meetings, travel)
*Not always reported
Validation: Evaluated authenticity of findings (n = 2) 1) Impact of the researchers’
perspective 2) Impact of the researchers’
presence
Triangulating findings:
• Observations only (n = 2)
• Interviews • Focus groups • Audio-
recording staff meetings Quantitative:
4/15 papers - How much time spent? - How often or how long?
Qualitative narrative synthesis of findings
Research Aim 2: How have observation methods added to the researchers understanding of the
quality of care delivered?
Results
Theme 1 The impact of
care delivery and organisational
factors
Theme 2 Observing
relationships and communications
Theme 3 People and places
behind closed doors
The impact of care delivery and organisational factors
The role of time ‘’The client has finished his dialysis and suddenly remembers he had forgotten
to fold swabs… [Home care worker] says he should have thought of that earlier… instead of talking. There is no time for folding swabs now; he has to
take his shower”
“The [home care workers] rarely checked their watches or mentioned how much time they had for the visit and instead took time to listen to the client in
spite of tight schedules”
“When one patient only wanted experienced staff to shower her, a novice HC assistant came in on her day off to learn the procedure”
Theme 1
Organisational context
“Calling [the office] when in need of help on a Friday evening, one [home care worker] experienced that nobody answered in spite of the fact that she had
been told to use this number, even on evenings and weekends.”
“The observations showed differences in the way the recording was done in different sites and between different workers within sites… In most cases what was recorded did not include the right information to enable the next worker to
build on the progress being made by the service users”
The impact of care delivery and organisational factors:
Theme 1
Observing relationships and communications
“In almost all households visited, the [home care workers] were welcome friends, who talked, joked and became part of the family life”
“After a while the [home care worker] wants [Client] to eat by herself, and after ensuring that she is managing she leaves. [Client] says very little, but calls the
[home care worker] sweetie several times”
“The lady [client] never called her [home care worker] by her name. She referred to her as ‘this’”
Theme 2
Non-verbal
‘’As we drove into the yard… a middle-aged woman came running to us from the road. It was the mother of the client. … As she reached us, she was crying
with relief that we had arrived so timeously”
“ ‘Come here darling.’ The [home care worker] touches the patient gently and turns her towards herself. The other [home care worker] continues with the
washing procedure”
Observing relationships and communications
Theme 2
People and places behind closed doors
Capturing all voices
“When we got there, the mother was just sitting in front of the house… with no
energy to do anything except the most basic movements”
“For some older adults with chronic pain, opportunities to socialise… or leave the home and interact with others were very limited. For these individuals, the
home visit provided personal contact that would otherwise be missing from their lives”
Theme 3
People and places behind closed doors
Theme 3
The home environment
“The bathroom was extremely narrow. She tried to cheer the man up by making
small talk as she helped him to the small bathroom, and when crossing the threshold, an awkward pose was struck. “Now we have to do a dance”, the care
worker said laughing, twisting the man on to the toilet”
“The wife tells that the client has not always been able to get a bath because of the design of the bathroom that meant bad physical working positions for the
care staff”
People and places behind closed doors
The home environment Adaptations – ‘converting a home to a workplace’
“The bath had to be refurnished if the client were to get a bath again. / The client’s wife stands up against some of the iterations because any physical
alteration in the home is a visible sign of their abnormal situation”
“ ‘Everyone gets to decide except me’, one patient said when the [home care workers] decided where to place the furniture in her own apartment”
Theme 3
Conclusions
• Unique benefits of using methods of observation to observe home care – relationships and interactions
- rich and meaningful data
• Well suited to exploring care for people with dementia?
• Considerations for future researchers – structure, role of researcher and reflective stance, collecting and reporting field notes, etc.
Next steps
Methods
Systematic review
Interviews Participant
observations
Thematic analysis of 32 interviews: o Developing coding framework
– Feb/March o Searching for
themes
Submitted to journal: Health & Social Care in
the Community o Await peer review
On-going: o 3 observers o 6 sites o 7 completed
observations, 7 ongoing, 4 to commence
o Est. total sample = 19 HCWs, 18 clients
o ~ 4 visits per client
Thank you
References
[1] Alzheimer’s Society with YouGov (June 2014). Most people want to stay at home if diagnosed with
dementia but less than half know how. [Online] Available at:
http://www.alzheimers.org.uk/site/scripts/press_article.php?pressReleaseID=1138.
[2] Alzheimer’s Society & Marie Curie Cancer Care. (2014). Living and dying with dementia in England:
Barriers to care. London: Alzheimer’s Society and Marie Curie Cancer Care. Retrieved from
www2.mariecurie.org.uk/Documents/policy/Dementia-report.pdf.
[3] Devlin, M., & McIlfatrick, S. (2010). Providing palliative and end-of-life care in the community: the role
of the home-care worker. International journal of palliative nursing, 16(4), 195-203.
[4] Gleason, H. P., & Coyle, C. E. (2016). Mental and behavioral health conditions among older adults:
implications for the home care workforce. Aging & mental health, 20(8), 848-855.
[5] Chou, Y.-C., Fu, L.-y., Kröger, T., & Ru-Yan, C. (2011). Job satisfaction and quality of life among home
care workers: a comparison of home care workers who are and who are not informal carers. International
psychogeriatrics, 23(5), 814-825.