‘Keeping the plates spinning’: a qualitative study of the complexity, barriers, and facilitators to caregiving in heart failure with preserved ejection fraction
Clare R Pearson, Faye Forsyth, Eva Khair, Emma Sowden, Susana Borja Boluda, Christi Deaton, Optimise HFpEF Investigators, Mollika Chakravorty, S Wills Maclachlan, E. A. Kane, Jessica Odone, Natasha Thorley, Susana Borja-Boluda, Ian Wellwood, Emma Sowden, Thomas Blakeman, Carolyn Chew‐Graham, Muhammad Hossain, John Sharpley, B Gordon, Joanna Taffe, Aaron Long, Affan Aziz, Hannah Swayze, Heather Rutter, Chris Schramm, Sine MacDonald, Helena Papworth, Julie Smith, Craig D. S. T. Needs, David Cronk, Chris Newark, D. W. Blake, Alistair Brown, Amman Basuita, Emma L. Gayton, Victoria Glover, Robin Fox, Jonathan Crawshaw, Helen Ashdown, Christine A’Court, Rachael Ayerst, Basilio Hernandez-Diaz, Kyle Knox, Nick Wooding, Shamila Wanninayake, Christopher Keast, Adam Jones, Kate Brown, G.H. Matthew, Nick Thomas, Sharon Dixon, Elisabetta Angeleri-Rand
Abstract
AIMS: 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. The aim of this study was to explore the role and experiences of informal carers of people with HFpEF. METHODS AND RESULTS: 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. Twenty-two interviews were conducted with 38 participants, 17 were informal carers. Three inter-related themes were identified: Theme 1, the complex nature of informal caregiving ('spinning plates'); Theme 2, the barriers to caregiving ('the spinning falters'); and 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, but complicated by challenges of limited information and support specific to HFpEF, and high burden of multi-morbidity. 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 co-ordinated management of HFpEF and multi-morbidities. Helping carers 'keep the plates spinning' will require innovative approaches and co-ordination across the care continuum.