Identity resistance, life changes and
care-giving
An exploration of perceived roles and
responsibilities of those supporti...
Carers
Office for National Statistics (ONS) definition:
A person who looks after or gives (unpaid) help
or support to fami...
Background
• 5.78 million unpaid carers in Britain according
to the 2011 census
• 9% of men and 13% of women in England
an...
Background
• Carers are more likely to self-report health as
“not good” – true across ages, gender, region
(Census / ONS /...
Background
• The language around care is problematic
– Identifying as a caregiver is an important step
towards self-care, ...
Study
• 1 year qualitative study investigating the experiences
of adults who care for someone with a vascular
disease in t...
Aims
• What factors influence whether or not those who
regularly assist someone with vascular disease are
identified as ca...
Methods: Data Collection
• Participants (n=20) recruited through
–
–
–
–

carers organisations
vascular disease organisati...
Methods: Topic Guide
Caring
activities

Impact on
carer

Identity

Topics

Support

Impact on
cared-for
person
Methods: Data Analysis
• Data analysed thematically (Braun and
Clarke, 2006)
• Atlas.ti used for data management
• Audio r...
Results: Carers Identity
Confirms existing literature.
• Carer identity is multifaceted and complex
• Often qualified or r...
Results: Carers Identity
• Identity transient / can change
according to circumstances
– Illness can be sudden/unexpected
–...
Results: Carers Identity
“I actually got quite upset about it all,
not that he’d got a transplant, that was
brilliant, but...
Results: Social Comparison
and the ‘Legitimate’ Carer
• Participants compared circumstances
with others
• Struggled to acc...
Results: Social Comparison
and the ‘Legitimate’ Carer
“I sat there and I listened to some of these poor
women that had the...
Results: Connotations of Care
“Carer” seen negatively because of:
1. Depersonalisation – carer becomes
more important than...
Results: Connotations of Care
“Carer” seen negatively because of:
2. Formalisation – Solidifies the role and
pressurises i...
Results: Connotations of Care
“Carer” seen negatively because of:
3. Dependence – Carer identity can
impact the relationsh...
Results: Uptake of Services
• Participants reported worry, stress,
social isolation, guilt, sadness
• Evident need for sup...
Results: Uptake of Services
• Mixed levels of awareness of support; few take it up
– Too busy / no time
– Feel it is not n...
Limitations of Study
• Small study limited to the North West of
England
• Recruitment difficulty
– Despite extensive effor...
Conclusions
• Language of caregiving is contested
and may be a barrier to uptake of
services
• More research needed to bet...
Thanks
• Thank you to the co-authors of the paper: Dr
Caroline Sanders, Dr Sarah Knowles, Dr Sue
Kirk, May Griffiths, Dr T...
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Identity resistance, life changes and care-giving: An exploration of perceived roles and responsibilities of those supporting a family member with vascular disease

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Identity resistance, life changes and care-giving: An exploration of perceived roles and responsibilities of those supporting a family member with vascular disease

Presented to the British Medical Sociology Conference by Dr Ryan Combs
York, United Kingdom, 2013

Published in: Health & Medicine
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Identity resistance, life changes and care-giving: An exploration of perceived roles and responsibilities of those supporting a family member with vascular disease

  1. 1. Identity resistance, life changes and care-giving An exploration of perceived roles and responsibilities of those supporting a family member with vascular disease Dr Ryan Combs University of Manchester
  2. 2. Carers Office for National Statistics (ONS) definition: A person who looks after or gives (unpaid) help or support to family members, friends, neighbours or others because of long-term physical or mental ill health or disability, or problems related to old age.
  3. 3. Background • 5.78 million unpaid carers in Britain according to the 2011 census • 9% of men and 13% of women in England and Wales are carers Source: Census / ONS 2011
  4. 4. Background • Carers are more likely to self-report health as “not good” – true across ages, gender, region (Census / ONS / Guardian DataBlog, 2011) • Carers and those being cared for may have conflicting needs (Morris, 1994)
  5. 5. Background • The language around care is problematic – Identifying as a caregiver is an important step towards self-care, but there are tensions (O’Connor, 2006) – Not all subscribe to the identity of “carer” or “cared for” (Henderson, 2001) – The term “carer” is ineffective and should be reconsidered (Molyneaux et al, 2011) – Moral construction of “carer” results in vulnerability of care providers (Weicht, 2009)
  6. 6. Study • 1 year qualitative study investigating the experiences of adults who care for someone with a vascular disease in the North West • Heart disease, kidney disease, diabetes, stroke • PPI Origins – idea by May Griffiths, a member of the School for Primary Care PPI group. • Funded by NIHR Flexibility and Sustainability grant
  7. 7. Aims • What factors influence whether or not those who regularly assist someone with vascular disease are identified as carers. • What are the barriers to people identifying themselves as ‘a carer’? • What factors enable or prevent people from accessing formal and informal support, and does adopting a carer identity impact on this?
  8. 8. Methods: Data Collection • Participants (n=20) recruited through – – – – carers organisations vascular disease organisations flyers in public places (university, charity shops) snowballing • In-depth, semi-structured qualitative interviews conducted in person or by phone • Urdu interpreter for three interviews
  9. 9. Methods: Topic Guide Caring activities Impact on carer Identity Topics Support Impact on cared-for person
  10. 10. Methods: Data Analysis • Data analysed thematically (Braun and Clarke, 2006) • Atlas.ti used for data management • Audio recorded and transcribed verbatim • Transcripts coded by single author, subset by co-authors to compare themes
  11. 11. Results: Carers Identity Confirms existing literature. • Carer identity is multifaceted and complex • Often qualified or rejected • Often reframed as “doing one’s duty” “I’m not [a carer], I’m just a family member doing what they should do” (Interview 1)
  12. 12. Results: Carers Identity • Identity transient / can change according to circumstances – Illness can be sudden/unexpected – Health can improve (kidney transplant) – Child becomes adult (diabetes) – Person may pass away (heart disease)
  13. 13. Results: Carers Identity “I actually got quite upset about it all, not that he’d got a transplant, that was brilliant, but I didn’t know what my role was any more… I didn’t know whether I was a carer, or, well, I just didn’t know! And I kept getting it wrong.” –Interview 3
  14. 14. Results: Social Comparison and the ‘Legitimate’ Carer • Participants compared circumstances with others • Struggled to accept legitimacy of own caring activities • Light vs. heavy caring • 35 hour per week Carer’s Allowance threshold
  15. 15. Results: Social Comparison and the ‘Legitimate’ Carer “I sat there and I listened to some of these poor women that had the most horrendous lifestyles because of caring with children with dreadful, dreadful disabilities, and then, you know, the husbands had a stroke… I kept thinking to myself they’re the people who really should be here, because they really are the carers… I felt I didn’t really qualify like they all did.” –Carer 4
  16. 16. Results: Connotations of Care “Carer” seen negatively because of: 1. Depersonalisation – carer becomes more important than other identities “I’ve gone from being partner to carer... I have to be labelled as carer on all of the documentation… that hurts me down to a deep level.” –Carer 15
  17. 17. Results: Connotations of Care “Carer” seen negatively because of: 2. Formalisation – Solidifies the role and pressurises individual “Once you’re labelled you feel you have to live up to that responsibility” –Carer 1
  18. 18. Results: Connotations of Care “Carer” seen negatively because of: 3. Dependence – Carer identity can impact the relationship with the person being cared for “He is such a fiercely independent proud man that he doesn’t want me - I was going to say to be his carer, that’s not correct - he doesn’t want me to feel I have to be his carer.” –Carer 4
  19. 19. Results: Uptake of Services • Participants reported worry, stress, social isolation, guilt, sadness • Evident need for support “I was running around here, there, everyone else was more important than myself. And because I took on the role of taking responsibility all the time, that's what was expected of me, everyone turned to me. So then I became depressed and this cycle was going on for quite a few years.” –Carer 10
  20. 20. Results: Uptake of Services • Mixed levels of awareness of support; few take it up – Too busy / no time – Feel it is not needed – Feel ineligible • However, the following would be helpful – More mental health support/counselling – More medical support/info about condition – More opportunities for social support/relaxation
  21. 21. Limitations of Study • Small study limited to the North West of England • Recruitment difficulty – Despite extensive efforts, response rates were low – Hypothesise competing responsibilities, lack of ‘carer’ identity may play a role – Snowballing was especially helpful in ethnic minority communities
  22. 22. Conclusions • Language of caregiving is contested and may be a barrier to uptake of services • More research needed to better understand how to provide psychosocial support under these conditions • More research to understand how to provide culturally sensitive support
  23. 23. Thanks • Thank you to the co-authors of the paper: Dr Caroline Sanders, Dr Sarah Knowles, Dr Sue Kirk, May Griffiths, Dr Tom Blakeman, and Dr Neesha Patel • Thanks also to GM CLAHRC for funding the study

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