Can There Be Resilience Without Understanding? Exploring Resilience in Myalgic Encephalomyelitis Unpaid Carers in the UK

My undergraduate research project investigated how family members of those suffering from ME/CFS can adapt and gain resilience throughout their experiences as unpaid carers. I wanted to explore this area as the experiences of unpaid ME/CFS carers are significantly under-researched, in addition to highlighting their unique experiences of caring due to the complexity of ME/CFS. The focus on resilience allows for the identification of resources that ME/CFS carers use at individual, community and societal levels, giving us a better understanding of what works for them. The resilience focus also allows resources that are absent to be identified, helping to guide and influence future support and policy for ME/CFS carers. I hope to have the opportunity to expand on this project and explore the experiences of those impacted by ME/CFS at a larger scale in an effort to highlight that ME/CFS impacts much more than just individuals suffering from it.

Abstract

Myalgic encephalomyelitis (ME) is a chronic, complex, debilitating neurological disease that is estimated to affect 26,500 (0.4%) people in the United Kingdom (UK) (Bretherick et al., 2023). Previous research has shown that unpaid carers can be resilient in their role as caregivers. However, little is known about the resilience of unpaid caregivers of people living with ME (PLWME). This study aims to build on previous research on the resilience of caregivers while expanding it to this new population, using the ecological resilience framework (Windle and Bennett, 2011) to identify factors that facilitate or hinder resilience in unpaid caregivers of PLWME. This study consisted of a purposive sample of 7 carers from the United Kingdom, conducting qualitative interviews that were analysed using a constructivist grounded theory approach (Charmaz, 2003). The findings of this study showed that PLWME unpaid caregivers drew on numerous resources at the individual, community and societal levels to facilitate their resilience. These resources included psychological attributes that helped them adapt and accept, support from friends and family and acknowledgement from society. However, at both community and societal levels, a lack of knowledge of ME and caring hindered the effectiveness of these resilience resources. Overall, this study is the foundation for further studies on the exploration of resilience in PLWME unpaid caregivers, in addition to helping inform social and healthcare professionals and policymakers about the experiences of these caregivers