Keeping the plates spinning: a qualitative study of the multifaceted role of caregiving in HFpEF

Abstract

Funding Acknowledgements Type of funding sources: Public grant(s) – National budget only. Main funding source(s): National Institutes of Health Research School for Primary Care Research OnBehalf Optimise HFpEF Background Heart failure with preserved ejection fraction (HFpEF) accounts for 50% of all heart failure cases yet remains poorly understood, diagnosed and managed, which can add complexity to the caregiver role. No study to date has explicitly investigated the experiences of informal caregivers of people with HFpEF. Objective The aim of this study was to explore and understand the role and experiences of informal caregivers of people with HFpEF. Methods and design A qualitative study using semi-structured interviews involving caregivers alone, patients alone or caregiver/patient dyads. The interviews were performed as part of a larger programme of research in HFpEF. Participants were recruited from three regions of England. Interviews were transcribed verbatim and analysed thematically. Results 22 interviews were conducted with a total of 38 participants, 17 of which were informal caregivers. Three inter-related themes were identified: (1) ‘spinning plates’ - the multifaceted nature of informal caregiving: household manager, health manager and motivator; (2) ‘the spinning falters’- the barriers to caregiving: lack of HFpEF awareness, information and support, the burden of multimorbidity, caregiver stress and the caregiver’s health status; (3) ‘keeping the plates spinning’- the facilitators of caregiving: being informed, being appreciated, having a champion (a health care professional that is key to managing the patient’s HFpEF), and engaging a wider support network. Conclusions Informal caregivers play an important role in supporting people with HFpEF. The experience of caregiving to people with HFpEF is similar to HFrEF, but complicated by challenges of poor HFpEF information and support, and the burden of multimorbidity. Healthcare providers should assess the needs of informal caregivers as part of patient care in HFpEF. Caregivers and patients would both benefit from improved information and management of HFpEF and associated multi-morbidities. Helping caregivers ‘keep the plates spinning’ will require innovative approaches and coordination across the care continuum.