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Personal identity and the role of ‘carer’ among relatives and friends of people with multiple sclerosis

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  • Hughes, Nic
  • Locock, Louise
  • Ziebland, Sue

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.

Suggested Citation

  • Hughes, Nic & Locock, Louise & Ziebland, Sue, 2013. "Personal identity and the role of ‘carer’ among relatives and friends of people with multiple sclerosis," Social Science & Medicine, Elsevier, vol. 96(C), pages 78-85.
  • Handle: RePEc:eee:socmed:v:96:y:2013:i:c:p:78-85
    DOI: 10.1016/j.socscimed.2013.07.023
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    References listed on IDEAS

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    1. R. Henrion, 2005. "Book Review," Mathematical Methods of Operations Research, Springer;Gesellschaft für Operations Research (GOR);Nederlands Genootschap voor Besliskunde (NGB), vol. 61(2), pages 345-346, June.
    2. Olson, Rebecca Eileen, 2011. "Managing hope, denial or temporal anomie? Informal cancer carers' accounts of spouses' cancer diagnoses," Social Science & Medicine, Elsevier, vol. 73(6), pages 904-911, September.
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    Cited by:

    1. Leane, Máire, 2019. "Siblings caring for siblings with Intellectual Disabilities: Naming and negotiating emotional tensions," Social Science & Medicine, Elsevier, vol. 230(C), pages 264-270.
    2. Urwin, Sean & Lau, Yiu-Shing & Grande, Gunn & Sutton, Matt, 2021. "The extent and predictors of discrepancy between provider and recipient reports of informal caregiving," Social Science & Medicine, Elsevier, vol. 277(C).
    3. Farnaz Rahmani & Hossein Ebrahimi & Naeimeh Seyedfatemi & Hossein Namdar Areshtanab & Fatemeh Ranjbar & Bill Whitehead, 2018. "Trapped like a butterfly in a spider's web: Experiences of female spousal caregivers in the care of husbands with severe mental illness," Journal of Clinical Nursing, John Wiley & Sons, vol. 27(7-8), pages 1507-1518, April.

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