Experiences of South Asian caregivers
of people with a dementia in the UK: A
systematised review
Kate Moore – BTHFT
Better Medicine Better Health
Summary
Aims: Address gaps within the occupational therapy literature &
provide practical recommendations
Methods and Design: Systematic Review - Qualitative philosophy
combined with an approach derived from quantitative research
Results: Five synthesised statements about the experiences of South
Asian carers from thirty two separate studies
Conclusions: The need to move on from singular cultural models to
cultural hybridity, suggestions for research and practice
Why this area?
Occupational therapists regularly work with
carers but little in the literature on carers
from marginalised groups
South Asian people with a dementia set to
be one of the fastest growing populations in
the UK – but shown to seek help later
Existing research shows greater burden for
South Asian carers – systemic inequality &
barriers
My own experience of healthcare with
relatives
Aims and Objectives
To provide a systematised review of previous studies
which have recorded the experiences of South Asian
caregivers with a dementia
Based on the review findings to provide practical
recommendations for occupational therapy services so
that the barriers and problems this population faces
might be addressed
Research Design and Methods
Qualitative - appropriate to address issues of experience, feelings,
and complexity
Systematised review to strengthen the findings of individual
qualitative studies by combining multiple research projects
Systematic search, extract single findings from studies, sort into
categories and then synthesise categories to create statements
Meta aggregation modelled on the Cochrane approach to systematic
review (The Joanna Briggs Institute 2014)
Inclusion and Exclusion Criteria
Research included featured South Asian carers of people with
dementia resident in the UK
All data included had a qualitative element
Included studies were English language only
Studies were published between 1996 and 2016
All studies that did not meet these criteria were excluded
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Initial Search =
2933
Hand Search = 93
Duplicates Removed = 120
Results
Title Abstract Screened = 2906
Full Texts Screened =
157
Critically Appraised = 35
FINAL INCLUDED
TEXTS = 32
Synthesis statement one
Racism and
prejudice at
systemic level (19
findings)
Unmet
needs
(5 findings)
Poor experiences of
services (20
findings)
Culturally
appropriate
services? (26
findings)
Limits of third
sector (7
findings)
Good experiences of
services (10
findings)
Carers experienced racism, and other inequalities,
defined by some as systemic level abuse.
Compounded by a lack of culturally appropriate
services in the statutory or third sector
Synthesis statement two
Cultural norms and tradition
offered as explanatory factors
(18 findings)
Gender roles in relation
to the caring role (11
findings)
Carer experiences of
migration (6 findings)
Family as a locus of
support and conflict
(26 findings)
Religion and religious
practice as a carer (19
findings)
Culture, traditional gender roles, and family hierarchy are
offered as explanations of experiences but, accounts of
migration and religion can challenge assumptions based on
these concepts
Synthesis statement three
Variable levels of
understanding of dementia
(23 findings)
Lack of knowledge of financial
support & other services available
(14 findings)
Variable understandings
of the causes of dementia
(10 findings)
Continuing ‘stigma’ associated
with mental illness, including
dementia (13 findings)
Levels of understanding of dementia in South Asian
communities varied, this related to continuing ‘stigma’
surrounding mental illness
Synthesis statement four
Physical and psychological
impact of caring (23 findings)
Isolation and being a hidden
carer (13 findings)
Carers experienced high levels of physical and mental
strain, exacerbated for some by feelings of isolation
Synthesis statement five
Positive aspects of caring
(8 findings)
Personal motivations for
caring (8 findings)
Resilience and personal
resources (9 findings)
Carers described positive aspects of caring, high levels
of motivation, and substantial resilience
Theoretical implications – culture and
occupational therapy
Ideas of culture are problematic when they are used
simplistically to explain experiences, or health outcomes; this
has been discussed by Hammel and Iwama in the occupational
therapy literature.
“What is pursued through an adherence to an essentialist notion
of culture, with its simplicity and rigidity, is a politics of victim
blaming which constructs minority communities as dangerous to
their own health…their problems are located in their difference;
their salvation is in being more like 'us’.”
Ahmad 1996, p196 see also Hammel 2013 and Iwama 2004
We need different models to understand
The biographical narrative approach (Jutlla & Moreland
2009)
Models of hybridity (Gunaratnam 2014)
The river or Kawa model? (Iwama 2009)
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Implications for research & practice
1.The home can be a site where ethnicity is heightened and
occupational therapy needs to move beyond ethnocentric ideas of
the home environment to enhance this resource.
2.Diagnosis is often later in South Asian patients due to different
patterns of help seeking. Occupational therapists with their dual
training in mental and physical health can help.
3. Advocacy may be a better practice than support groups for which
there is little evidence.
Implications for research & practice cont.
4. Language is a still a barrier for many, good
communication particularly the skilled use of interpreters
should be a competency for all Occupational Therapists.
5. Reports and guidelines should avoid using culture as
an explanatory factor to avoid ‘victim blaming’
6. Research ethics - representational
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Conclusions
Qualitative synthesis can be a means of strengthening the
findings of qualitative research
Challenge to the idea of ‘culture’ in occupational therapy and
healthcare research more broadly
Practical outcomes include: more considered approaches to
home, advocacy for carers rather than support groups, better
training in use of interpreters, focus on encouraging people to
seek help earlier
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Contact: [email protected]
Acknowledgements:
Dr. Nick Pollard & Petra Klompenhower –
Supervisors – Sheffield Hallam University
References
Ahmad, W. I. 1996. The trouble with culture. In D. Kelleher & S. Hillier (Eds.),
Researching cultural differences in health (pp. 190-219). London: Routledge.
Iwama M.K. 2007.Embracing Diversity: Explaining the cultural dimensions of
our occupational therapeutic selves. New Zealand Journal of Occupational
Therapy. 54(2)
Jutlla, K., & Moreland, N. 2009. The personalisation of dementia services and
existential realities: Understanding Sikh carers caring for an older person with
dementia in Wolverhampton. Ethnicity and Inequalities in Health and Social
Care, 2(4), 10-21.
Hammell, K. R. W. 2013. Occupation, well-being, and culture: Theory and
cultural humility. Canadian Journal of Occupational Therapy, 80(4), 224-234.
The Joanna Briggs Institute. 2014. Joanna Briggs Reviewer’s Manual.
Adelaide. The Joanna Briggs Institute.
Gunaratnam, Y. 2014. Morbid mixtures: Hybridity, pain and transnational dying.
Subjectivity, 7(1), 74-91.
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