"We do what needs to be done": caregivers' experiences of healthcare and support for people with multiple long-term conditions in the last year of life.

BACKGROUND

Towards the end of life, people with multiple long-term conditions face an array of challenges associated with their growing healthcare needs including unclear illness trajectories and multifaceted uncertainty. Caregivers, most often family or friends, play a key role in providing and coordinating care at the end of life. This study aimed to explore, through the perspective of bereaved caregivers, the experiences of healthcare and support in the last year of life for people with multiple long-term health conditions.

METHODS

Interpretative Phenomenological Analysis was used to analyse semi-structured interviews with 12 bereaved caregivers who had cared for relatives with multiple long-term conditions over the last year of life. Public advisors with lived experience as caregivers were key contributors to this study, aiding in study conceptualisation, design and analysis.

RESULTS

There were five key group experiential themes identified: (i) Multiple conditions mixed in together impacting prognostication, (ii) Dynamic, coordinated care from healthcare services supported caregivers, (iii) Information from various sources helped caregivers make person-centred decisions, (iv) Caregivers had to decide when and where to seek help, with a preference for known, trusted healthcare professionals and (v) Being a caregiver has a changing, persisting impact.

CONCLUSIONS

Bereaved caregivers faced challenges in appraising the multiple conditions that their relative had towards the end of life. This, alongside prior healthcare experiences and information gathered by caregivers, influenced how they accessed healthcare and support for their relative. Empowering caregivers and integrating their experiences into clinical practice will be key to supporting them in providing necessary care for those close to them at the end of their life.