Poster Presentations
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15:30 - 17:00
Acceptance and identity change: an interpretative phenomenological analysis of carers‘ experiences in ME/chronic fatigue syndrome
S. Catchpole1, G. Garip1
1University of Derby Online Learning, United Kingdom
Background: Myalgic encephalopathy (ME) or chronic fatigue syndrome (CFS) is a debilitating chronic condition and many people rely heavily on family members for care. Few qualitative studies have explored the wellbeing of informal carers in ME/CFS; this study aimed to explore family carers‘ experiences and how caring may affect their quality of life.
Methods: The study had a qualitative design using interpretative phenomenological analysis. One-to-one semi-structured interviews were held by phone or Skype with 7 carers (4 men) recruited from ME/CFS support organisations in England (aged 34–62 [x = 51.9; SD = 9.95]; mean caring time 8.5 years [SD = 8.46]).
Findings: Five superordinate themes were established: relations with others; identity change; uncertainty as a stressor; ways of coping; and experiences of information and support seeking. Caring in ME/CFS disrupted multiple areas of carers‘ lives including self-identity and relationships. Navigating shifting roles was stressful, leaving carers little spare time and restricting social contact. It also forced some spouses to re-evaluate their relationships. Scepticism from others about ME/CFS reduced carers‘ social support, leaving some feeling isolated. Acceptance was reported as important for coping, and accepting role and identity changes helped some carers achieve positive growth within spousal relationships.
Discussion: Carers had unmet needs for support that could inform interventions to improve their wellbeing. Acknowledging their care burden and including carers in family-based interventions could help healthcare professionals address carers‘ needs. More research is needed to explore factors enabling carer acceptance, including of the relational changes experienced by spousal carers.
