title: Personal identity and the role of 'carer' among relatives and friends of people with multiple sclerosis.
abstract: Informal caregiving continues to be a crucial part of health and social care provision in the developed world, but the processes by which the identity of informal caregiver is conferred, or assumed, remain unclear. In this article we draw on data from a qualitative research study which examined the experiences of family members and friends of people with multiple sclerosis (pwMS) to explore how they interpret the label 'carer'. We conducted narrative interviews with forty people throughout the United Kingdom between June 2011 and January 2012. Participants were spouses, partners, parents, children, siblings or friends of people who have had multiple sclerosis between 6 months and fifty years. We carried out thematic analysis of the interviews, informed by identity theory. Identity theory illuminated variation in peoples' perceptions of themselves as carers, suggesting that self-identification with the role and label of carer is nuanced, shifting and variable. We propose a taxonomy of caring activity including emotional support, personal care, physical care, household tasks, advocacy and activism and describe four categories, with fluid and overlapping boundaries, in which the identity of carer was apparently embraced, enforced, absorbed or rejected. Variability and fluidity in self-identification as a carer are related to apparent expectations about whether one should assume a caring role. Those who were caring from the more tangential (and less taken for granted) relationship of sibling or ex-partner were among those who apparently embraced the role. Those who were expected to assume the caring role (typically spouses) were not always comfortable with doing so. It may be difficult to gain acknowledgement from family members and others that they occupy the role of carer if people resist the label as a bureaucratisation of their personal relationships.
authors.affiliation: Health Experiences Research Group, Dept. of Primary Care Health Sciences, University of Oxford, 23-38 Hythe Bridge Street, Oxford OX1 2ET, United Kingdom. Electronic address: nic.hughes@phc.ox.ac.uk.
authors.forename: Nic
authors.initials: N
authors.lastname: Hughes
authors.forename: Louise
authors.initials: L
authors.lastname: Locock
authors.forename: Sue
authors.initials: S
authors.lastname: Ziebland
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D005190:Family / Q000523:psychology*; D005260:Female; D033062:Friends / Q000523:psychology*; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000628:therapy*; D033262:Narration; D036301:Qualitative Research; D012380:Role; D012649:Self Concept; D006113:United Kingdom; D055815:Young Adult
keywords: Caregiver; Carer; Identity; Informal care; Multiple sclerosis; Narrative; Qualitative research; UK
references.citation: Health Soc Care Community. 2003 May;11(3):242-52
references.pmid: 12823429
references.citation: Gerontologist. 1992 Oct;32(5):656-64
references.pmid: 1427278
references.citation: Disabil Rehabil. 2012;34(3):247-56
references.pmid: 22087569
references.citation: Psychol Health. 2011 Jan;26(1):113-27
references.pmid: 20204981
references.citation: BMJ. 2006 Mar 4;332(7540):525-7
references.pmid: 16513709
references.citation: Gerontologist. 2007 Aug;47(4):516-27
references.pmid: 17766672
references.citation: Br J Nurs. 2010 Feb 25-Mar 10;19(4):214-9
references.pmid: 20220670
references.citation: Res Nurs Health. 1990 Dec;13(6):375-84
references.pmid: 2270302
references.citation: Gerontologist. 1992 Oct;32(5):607-17
references.pmid: 1427272
references.citation: Annu Rev Med. 2002;53:285-302
references.pmid: 11818475
references.citation: J Adv Nurs. 1997 Sep;26(3):623-30
references.pmid: 9378886
references.citation: Health Soc Care Community. 2001 Nov;9(6):464-75
references.pmid: 11846826
references.citation: J Nurs Scholarsh. 2003;35(1):21-5
references.pmid: 12701522
references.citation: Health Soc Care Community. 2012 Mar;20(2):128-36
references.pmid: 21771142
references.citation: Soc Sci Med. 2011 Sep;73(6):904-11
references.pmid: 21306812
references.citation: J Adv Nurs. 2003 Feb;41(4):323-31
references.pmid: 12581097
references.citation: Palliat Med. 2011 Mar;25(2):177-82
references.pmid: 20952448
references.citation: Nurs Res. 2007 Nov-Dec;56(6):425-33
references.pmid: 18004189
references.citation: Disabil Rehabil. 2010;32(3):196-206
references.pmid: 20001825
references.citation: J Gerontol. 1983 May;38(3):344-8
references.pmid: 6841931