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.

How do carers of people with multiple sclerosis engage with websites containing the personal experiences of other carers and patients?

“…In recognising this role, participants began to engage further with carer accounts, acknowledging the different needs and coping strategies of patients and carers across the timeline of the condition. In this respect our findings reflect recent observations that long-term carers can reach a point at which they come to see themselves as the ones in need of care 31 and suggest that online opportunities to establish an alternative identity (in which they are not so tightly defined in terms of the needs of another) may be welcome.…”

“…The changing nature of the disease has important implications for the ways in which both MS patients and their carers cope with daily stressors 29 , which in turn may impact upon their desire for engagement with online health information 11 . Carers themselves may experience a shifting sense of identity from an initial reluctance to accept the role of carer 30 to recognition that much later on they are also in need of care 31 . This may be reflected in the way they seek out online narratives.…”

Examining the role of patients’ experiences as a resource for choice and decision-making in health care: a creative, interdisciplinary mixed-method study in digital health

“…This may indicate that carers, by the nature of their role, have other priorities or are simply too busy to take part in research studies. It may also reflect the fact that 173 The qualitative interviews suggest that the eligibility criteria were not always applied correctly: some smokers had already given up, while others had no desire to quit. Similarly, participants in the asthma trial did not take part with a motive to improve self-management.…”

Towards improved decision support in the assessment and management of pain for people with dementia in hospital: a systematic meta-review and observational study

“…Indeed 'carer' is not an uncontested label 56 and, in retrospect, we should have consulted the group on this. Towards the end of the project one of the group members pointed out that instead of carer she would prefer 'family supporter (I prefer to call myself that rather than carer)' and, although this was not raised as an issue, her message was a reminder for future patient and public involvement activities with family members of patients with dementia to consult on this at the start of the research process.…”