Understanding the self-management experiences of people with heart failure with preserved ejection fraction (HFpEF), their caregivers, and the health care professionals who support them: A qualitative meta-study

Abstract

Aims: To understand the self-management experiences of people with heart failure with preserved ejection fraction (HFpEF), their caregivers and the health care professionals (HCPs) who support them. Methods: A systematic review of qualitative and mixed methods literature, published to July 2023. 4560 abstracts describing patients, caregivers, and HCPs experiences of self-management strategies for HFpEF were identified and screened. Of the 349 full texts identified we included seven papers from three data sources (in 47 patients, 81 caregivers, 129 HCPs) in our final dataset. Key theories, methods and results were extracted, reviewed and synthesised using meta-study techniques. Results: We identified that HFpEF is difficult for HCPs to diagnose and difficult for patients and their caregivers to understand. Patients and caregivers can struggle to access support, which can lead to a ‘cycle of decline’ over time in patients’ outcomes /quality of life. However, self-management can be optimised with adequate support, when the burdens of understanding HFpEF and self-management are acknowledged, when personalised goals are set, and feedback is provided to optimise individualised self-management. Conclusion: The limited capacity of HCPs to support HFpEF patients and caregivers to develop effective self-management understanding and practice can lead to disempowerment and loss of control. Tailored interventions are required to maximise HCP enablement of patients and their caregivers to develop flexible and sustainable self-management strategies. Future research must specify and evaluate the skillset that HCPs require to provide individualised care that is tailored to the holistic needs of people self-managing HFpEF within the local care context.