‘Keeping the plates spinning’: a qualitative study of the complexity, barriers and facilitators to caregiving in Heart Failure with preserved Ejection Fraction (HFpEF)

Abstract

Background Heart failure with preserved ejection fraction (HFpEF) accounts for 50% of all heart failure cases yet remains poorly understood, diagnosed and managed, which adds complexity to the carer role. No study to date has investigated the experiences of informal carers of people with HFpEF. Aims: The aim of this study was to explore the role and experiences of informal carers ofpeople with HFpEF. Methods: A qualitative study using semi-structured interviews involving carers alone, patients alone or carer/patient dyads. The interviews were part of a larger programme of research in HFpEF. Participants were recruited from three regions of England. Interviews were recorded, transcribed verbatim and analysed thematically. Results: Twenty-two interviews were conducted with 38 participants, 17 were informal carers. Three inter-related themes were identified: Theme 1, the complex nature of informalcaregiving (‘spinning plates’); Theme 2, the barriers to caregiving (‘the spinningfalters’); Theme 3, the facilitators of caregiving (‘keeping the plates spinning’). Conclusions: Informal carers play an important role in supporting people with HFpEF. The experience of caregiving in HFpEF is similar to that described for Heart Failure with reduced Ejection Fraction (HFrEF), but complicated by challenges of limited information and support specific to HFpEF, and high burden of multimorbidity. Healthcare providers should assess the needs of informal carers as part of patient care in HFpEF. Carers and patients would benefit from improved information and coordinated management of HFpEF and multimorbidities. Helping carers ‘keep the plates spinning’ will require innovative approaches and coordination across the care continuum. PoweredNIHR School for Primary Care Research, Addenbrooke's Charitable Trus