Carer Research Trends in the UK: A Critical Analysis
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W
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Context
Aims and methods
Research paradigms
-
Caring in the UK: ‘Gathering and Evaluating
-
Caring in the UK: ‘Conceptualising and Theorising’
Generating Knowledge about Carers and Caring:
Is Research Fit for Purpose?
Conclusions
C
O
N
T
E
X
T
ESRC carers seminars (Oct 2012-Sept 2013)
much has been written about caring in the UK over
the past 30 years
limited critical analysis of the evidence base
critical interpretive synthesis of the nature of carer
related research
conducted between July and October 2013
timely: carers are growing in number but are also
the subject of a range of policy initiatives across the
UK
start the debate and discussion about the carer
evidence base!
A
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M
S
A
N
D
M
E
T
H
O
D
S
A
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M
S
explore how knowledge about carers has been
generated and developed since 1995
synthesise the key dimensions of the carers
research paradigm
critique the relationship of research and/or theory to
our understanding of carers and caregiving in
contemporary Britain
M
E
T
H
O
D
S
- multi-stage review
- publications selected in terms of their relevance to:
review /evaluation of research or evidence relating to carers
review, development or analysis of theoretical knowledge about
care and carers
review, development or analysis of conceptual knowledge about
care and carers
review or analysis of knowledge generation relating to care and
carers
- publications excluded:
work published before 1995 and any work that was non-
peer reviewed.
not written in English
- although UK publications were prioritised, seminal work
from North America and Australia were included
R
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numbers of carers
who they care for
age profile of carers
tasks they undertake
hours spent caring
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carers’ health
capacity to remain in work
quality of life
finances
beneficial effects
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Increased policy recognition means that there is
greater focus on carers’ rights BUT many carers
are still profoundly disadvantaged by caring e.g.
carers routinely overlooked and feel unsupported,
powerless and marginalised
only 6% of
all
carers in England ever receive an
assessment of need
service effectiveness
personal budgets
R
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’
-
Conceptualising Carers
- Theorising Caring
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‘carer’ is still a contested concept - inconsistency in
the usage and confused meaning
analysis of conceptual models employed by
services and policy makers suggest ongoing
conceptual confusion e.g.
- co-production
- self-directed care
- carers as members of the ‘care workforce’
carers’ experiences are shaped not only by their
personal responses to caring but also by a myriad
of situational and structural factors
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Theoretical analyses of caring have separately
and
collectively
extended understanding of caring as an activity:
- care as a “homogenous activity” based on the “provision
of instrumental support, and ....as one person ‘doing care
to’ another” (Ray
et al.
2009 p.116)(1980s)
- feminist perspectives and the gendered nature of care
relational aspects of care (1990s)
- ‘nested dependencies’ (Kittay 1999)
- the ‘ethic of care’(Tronto 1993, 1997 )
-
relationality and power within caring relationships
“power in caring relationships is constantly (re)created and
(re)negotiated through interaction” and is therefore “fluid,
complex, and constantly shifting”
(Dominelli & Gollins 1997
p.412)
.
- caring and care “evolve over time” (Bowlby
et al
. 2010 p.46)
- the spatially situated nature of care (Egdell
2013)
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The growth in research about family care has:
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ensured “that caring is prioritised as a significant
issue for social policy and practice” (Barnes 2006
p.1)
underpinned the development of a highly
organised and politically active carers movement
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there is a reinforcing and powerful link between
the type of research and the nature of knowledge
generated
importance of exploring the dimensions of this
relationship and its implications for understandings of
care and caring within the two distinctive paradigms
identified
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maintained carers inside the purview of government
foregrounded caring as an issue of national
significance
methodologically rigorous and trustworthy
(relatively) easily accessed by a wide audience
capacity to improve support for carers
cost effectiveness dimension
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the evidence base is fragmented and uneven
lack of sustained cross - fertilisation between research
groups or funders
the foci, specific methodology, nature and size of
projects varies considerably
weak additive capacity of studies and duplication
only captures evidence about carers who are visible
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adopts a wide lens of analysis in relationship to care
sees care as multi-dimensional
challenges narrow definitions of carer
roots research in the experiences of families and service
user
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lack of capacity to speak to an economic agenda
limited foothold in applied work
weak link to service and policy development in
health and social care
not easily absorbed into mainstream thinking about
caring
C
O
N
C
L
U
S
I
O
N
S
research is central to extending understanding and
generating knowledge about care and caring and to
improving support for carers
this critical interpretive review of literature about carers,
care and caring shows that two separate research
paradigms with very different perspectives and approaches,
dominate the discourse
despite a considerable investment in carer-related research
many key questions remain, at best, partially answered
future research must build on the strengths of existing
research , and encourage cross fertilisation and tackle its
deficits
need further critical reflection on ‘the state of the art’
to provide a catalyst for future debate, further
analysis, and innovative research
the findings of this critical interpretive review of
literature about carers, care and caring can be used
encourage such debate about the best way forward
for carer-related research in the future
central to meeting the needs of citizens, families
and carers, generate new knowledge, and develop
new paradigms to address one of the most
challenging and complex issues of the 21
st
century
R
E
F
E
R
E
N
C
E
S
Barnes, M. (2006)
Caring and social justice
. Palgrave Macmillan,
Basingstoke.
Barnes, M (2012)
Care in Everyday Life. An ethic of care in practice.
Policy
Press, Bristol
Bowlby, S., McKie, L., Gregory, S. and Macpherson, I. (2010)
Interdependency and care over the life course.
Routledge, Abingdon
Carers UK (2013)
The State of Caring 2013
, London: Carers UK
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Kittay, E. F (1999)
Love's Labor: Essays on Women, Equality, and
Dependency
. Routledge, London
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Tronto, J (1993)
Moral Boundaries: a political argument for an ethic of
care
. Routledge, New York
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Research conducted at De Montfort University explores the evolution of carer research paradigms in the UK since 1995, aiming to critique the relationship between research/theory and our understanding of carers. Through multi-stage reviews and analysis, the study delves into key dimensions of carer research paradigms, synthesizing knowledge and generating insights about carers and caregiving in contemporary Britain.
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WHERE TO NOW FOR CARER RESEARCH? Mary Larkin De Montfort University
OUTLINE Context Aims and methods Research paradigms - Caring in the UK: Gathering and Evaluating - Caring in the UK: Conceptualising and Theorising Generating Knowledge about Carers and Caring: Is Research Fit for Purpose? Conclusions
CONTEXT ESRC carers seminars (Oct 2012-Sept 2013) much has been written about caring in the UK over the past 30 years limited critical analysis of the evidence base critical interpretive synthesis of the nature of carer related research conducted between July and October 2013 timely: carers are growing in number but are also the subject of a range of policy initiatives across the UK start the debate and discussion about the carer evidence base!
AIMS explore how knowledge about carers has been generated and developed since 1995 synthesise the key dimensions of the carers research paradigm critique the relationship of research and/or theory to our understanding of carers and caregiving in contemporary Britain
METHODS - multi-stage review - publications selected in terms of their relevance to: review /evaluation of research or evidence relating to carers review, development or analysis of theoretical knowledge about care and carers review, development or analysis of conceptual knowledge about care and carers review or analysis of knowledge generation relating to care and carers - publications excluded: work published before 1995 and any work that was non- peer reviewed. not written in English - although UK publications were prioritised, seminal work from North America and Australia were included
RESEARCH PARADIGMS 1. Caring in the UK: Gathering and Evaluating 2. Caring in the UK: Conceptualising and Theorising
RESEARCH PARADIGM 1 - CARING IN THE UK: GATHERING AND EVALUATING - Profiling Carers - The Impact of Caring - Support for Carers
CARING IN THE UK: GATHERING AND EVALUATING - PROFILING CARERS numbers of carers who they care for age profile of carers tasks they undertake hours spent caring
CARING IN THE UK: GATHERING AND EVALUATING - THE IMPACT OF CARING carers health capacity to remain in work quality of life finances beneficial effects
CARING IN THE UK: GATHERING AND EVALUATING - SUPPORT FOR CARERS Increased policy recognition means that there is greater focus on carers rights BUT many carers are still profoundly disadvantaged by caring e.g. carers routinely overlooked and feel unsupported, powerless and marginalised only 6% of all carers in England ever receive an assessment of need service effectiveness personal budgets
RESEARCH PARADIGM 2: CARING IN THE UK: CONCEPTUALISING THEORISING AND - Conceptualising Carers - Theorising Caring
CARING IN THE UK: CONCEPTUALISING AND THEORISING - CONCEPTUALISING CARERS carer is still a contested concept - inconsistency in the usage and confused meaning analysis of conceptual models employed by services and policy makers suggest ongoing conceptual confusion e.g. - co-production - self-directed care - carers as members of the care workforce carers experiences are shaped not only by their personal responses to caring but also by a myriad of situational and structural factors
CARING IN THE UK: CONCEPTUALISING AND THEORISING - - THEORISING CARING Theoretical analyses of caring have separately and collectively extended understanding of caring as an activity: - care as a homogenous activity based on the provision of instrumental support, and ....as one person doing care to another (Ray et al. 2009 p.116)(1980s) - feminist perspectives and the gendered nature of care relational aspects of care (1990s) - nested dependencies (Kittay 1999) - the ethic of care (Tronto 1993, 1997 ) - relationality and power within caring relationships power in caring relationships is constantly (re)created and (re)negotiated through interaction and is therefore fluid, complex, and constantly shifting (Dominelli & Gollins 1997 p.412). - caring and care evolve over time (Bowlby et al. 2010 p.46) - the spatially situated nature of care (Egdell 2013)
GENERATING KNOWLEDGE ABOUT CARERS AND CARING: IS RESEARCH FIT FOR PURPOSE? The growth in research about family care has: raised the profile of carers in the public domain ensured that caring is prioritised as a significant issue for social policy and practice (Barnes 2006 p.1) underpinned the development of a highly organised and politically active carers movement extended our understanding of care and caring
RELATIONSHIP BETWEEN THE TYPE OF RESEARCH AND THE NATURE OF KNOWLEDGE there is a reinforcing and powerful link between the type of research and the nature of knowledge generated importance of exploring the dimensions of this relationship and its implications for understandings of care and caring within the two distinctive paradigms identified
GATHERING AND EVALUATING - REFLECTING ON THE EVIDENCE BASE - STRENGTHS maintained carers inside the purview of government foregrounded caring as an issue of national significance methodologically rigorous and trustworthy (relatively) easily accessed by a wide audience capacity to improve support for carers cost effectiveness dimension
GATHERING AND EVALUATING - REFLECTING ON THE EVIDENCE BASE - WEAKNESSES the evidence base is fragmented and uneven lack of sustained cross - fertilisation between research groups or funders the foci, specific methodology, nature and size of projects varies considerably weak additive capacity of studies and duplication only captures evidence about carers who are visible criticised for being conceptually narrow and under- theorised
CONCEPTUALISING AND THEORISING - REFLECTING ON THE EVIDENCE BASE - STRENGTHS adopts a wide lens of analysis in relationship to care sees care as multi-dimensional challenges narrow definitions of carer roots research in the experiences of families and service user
CONCEPTUALISING AND THEORISING - REFLECTING ON THE EVIDENCE BASE - WEAKNESSES lack of capacity to speak to an economic agenda limited foothold in applied work weak link to service and policy development in health and social care not easily absorbed into mainstream thinking about caring
CONCLUSIONS research is central to extending understanding and generating knowledge about care and caring and to improving support for carers this critical interpretive review of literature about carers, care and caring shows that two separate research paradigms with very different perspectives and approaches, dominate the discourse despite a considerable investment in carer-related research many key questions remain, at best, partially answered future research must build on the strengths of existing research , and encourage cross fertilisation and tackle its deficits
need further critical reflection on the state of the art to provide a catalyst for future debate, further analysis, and innovative research the findings of this critical interpretive review of literature about carers, care and caring can be used encourage such debate about the best way forward for carer-related research in the future central to meeting the needs of citizens, families and carers, generate new knowledge, and develop new paradigms to address one of the most challenging and complex issues of the 21stcentury
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