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

Forsyth, Faye; Blakeman, Thomas; Burt, Jenni; Chew-Graham, Carolyn A; Hossain, Muhammad; Mant, Jonathan; Sharpley, John; Sowden, Emma; Deaton, Christi

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Authors

Faye Forsyth

Thomas Blakeman

Jenni Burt

Muhammad Hossain

Jonathan Mant

John Sharpley

Emma Sowden

Christi Deaton



Abstract

Aims To investigate how heart failure with preserved ejection fraction (HFpEF), within the context of limited clinical services, impacts patients’ lives. Methods and results Secondary thematic analysis informed by the cumulative complexity model (CCM), of interview transcripts from 77 people diagnosed with HFpEF and their carers. Four themes corresponding to the core concepts of workload, capacity, access, and outcome described in the CCM were generated. Theme 1: Shouldering a heavy workload described the many tasks expected of people living with HFpEF. Theme 2: The multiple threats to capacity described how patients and carers strived to engage with this work, but were often faced with multiple threats such as symptoms and mobility limitations. Deficient illness identity (Theme 3) reflects how HFpEF either was not recognized or was perceived as a more benign form of HF and therefore afforded less importance or priority. These themes contributed to a range of negative physical, social, and psychological outcomes and the perception of loss of control described in Theme 4: Spiraling complexity. Conclusions The constellation of HFpEF, multi-morbidity, and ageing creates many demands that people with HFpEF are expected to manage. Concurrently, the same syndromes threaten their ability to physically enact this work. Patients’ recollections of their interactions with health professionals suggest that there is a widespread misunderstanding of HFpEF, which can prohibit access to care that could potentially reduce or prevent deterioration.

Journal Article Type Article
Acceptance Date Sep 6, 2022
Online Publication Date Sep 8, 2022
Publication Date Jul 19, 2023
Publicly Available Date Mar 29, 2024
Journal European Journal of Cardiovascular Nursing
Print ISSN 1474-5151
Publisher SAGE Publications
Volume 22
Issue 5
Pages 529-536
DOI https://doi.org/10.1093/eurjcn/zvac081
Keywords Advanced and Specialized Nursing, Medical–Surgical Nursing, Cardiology and Cardiovascular Medicine
Publisher URL https://academic.oup.com/eurjcn/advance-article/doi/10.1093/eurjcn/zvac081/6693914

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