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

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.

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

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)

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)

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

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?

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

Methods: Topic Guide

Topics

Caring activities

Impact on carer

Impact on cared-for person

Support

Identity

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

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)

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)

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

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

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

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

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

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

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

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

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

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

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