‘Keeping the plates spinning’: a qualitative study of the complexity, barriers, and facilitators to caregiving in heart failure with preserved ejection fraction

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.

Caregivers' Contributions to Heart Failure Self-care

“…Table 4 shows the specific self-care maintenance activities that informal caregivers perform including support for medication (n = 42/58, 72%), diet and fluid maintenance (n = 29/58, 50%), and medical appointments (n = 19/58, 33%). Although many reported caregiver activities followed evidence-based self-care recommendations (eg, reducing salt, encouraging physical activity, and medication adherence), “nagging” activities were also reported 38,50,62 . Caregivers reported that patient perceptions of encouragement as nagging had a negative impact, suggesting that caregivers need additional skill training on how to motivate their care partners and support in carrying this out (eg, autonomy supportive communication) 77 .…”

“…Two thousand one hundred fifty-four research reports were identified, of which 64 met criteria (Figure Although many reported caregiver activities followed evidence-based self-care recommendations (eg, reducing salt, encouraging physical activity, and medication adherence), "nagging" activities were also reported. 38,50,62 Caregivers reported that patient perceptions of encouragement as nagging had a negative impact, suggesting that caregivers need additional skill training on how to motivate their care partners and support in carrying this out (eg, autonomy supportive communication). 77 Caregivers also reported providing health maintenance behaviors (eg, activities of daily living [ADLs]), which do not appear in self-care maintenance activities 7 such as "providing personal care such as toileting, dressing, bathing" and "basic self-care activities" 29,32,64,78 In keeping with the 2015 synthesis, caregivers' activities continued to fall into the 2 categories of "hands-on" and "hands-off" activities.…”

“…42,61,62 After 2016, vigilance remained, but tracking and monitoring emerged as a more prevalently described activity from 2017 to 2019, with key features including symptom monitoring strategies and education support. 25,50,70 From 2020 onward, a clear trend emerged toward greater publication of articles that reported data on caregiver-provider communication strategies. Involvement of caregivers in existing patient-facing symptom monitoring and tracking strategies was introduced (ie, in-home monitoring), and when combined with telehealth, an emphasis on communication trended upward.…”

Cumulative complexity: a qualitative analysis of patients’ experiences of living with heart failure with preserved ejection fraction

“…Findings are reported in line with the COREQ checklist (consolidated criteria for reporting qualitative research) (21). Anonymized transcripts from interviews (n=62) conducted with individuals with HFpEF (n=61, denoted a 'P') and their informal carers (n=16, denoted as 'C'), collected as part of two previous studies (7,18) were collated (Figure 1). 17/NE/0199).…”

“…To our knowledge, there are only four reports (7,8,17,18) and two patient letters (19,20) qualitatively exploring HFpEF. Whilst these studies provide some insight, description of the lived experience was not their intent.…”