Do chronic heart failure symptoms interact with burden of treatment? Qualitative literature systematic review
Do chronic heart failure symptoms interact with burden of treatment? Qualitative literature systematic review
Objective Explore the interaction between patient experienced symptoms and burden of treatment (BoT) theory in chronic heart failure (CHF). BoT explains how dynamic patient workload (self-care) and their capacity (elements influencing capability), impacts on patients' experience of illness. Design Review of qualitative research studies. Data sources CINAHL, EMBASE, MEDLINE, PsycINFO, Scopus and Web of Science were searched between January 2007 and 2020. Eligibility Criteria Journal articles in English, reporting qualitative studies on lived experience of CHF. Results 35 articles identified related to the lived experience of 720 patients with CHF. Symptoms with physical and emotional characteristics were identified with breathlessness, weakness, despair and anxiety most prevalent. Identifying symptoms' interaction with BoT framework identified three themes: (1) Symptoms appear to infrequently drive patients to engage in self-care (9.2% of codes), (2) symptoms appear to impede (70.5% of codes) and (3) symptoms form barriers to self-care engagement (20.3% of codes). Symptoms increase illness workload, making completing tasks more difficult; simultaneously, symptoms alter a patient's capacity, through a reduction in their individual capabilities and willingness to access external resources (ie, hospitals) often with devasting impact on patients' lives. Conclusions Symptoms appear to be integral in the patient experience of CHF and BoT, predominately acting to impede patients' efforts to engage in self-care. Symptoms alter illness workload, increasing complexity and hardship. Patients' capacity is reduced by symptoms, in what they can do and their willingness to ask for help. Symptoms can lower their perceived self-value and roles within society. Symptoms appear to erode a patient's agency, decreasing self-value and generalised physical deconditioning leading to affective paralysis towards self-care regimens. Together describing a state of overwhelming BoT which is thought to be a contributor to poor engagement in self-care and may provide new insights into the perceived poor adherence to self-care in the CHF population. PROSPERO registration number CRD42017077487.
adult cardiology, cardiomyopathy, heart failure, qualitative research, quality in health care
Austin, Rosalynn, Clara
4bc7fd45-753b-4a78-a9d7-85fce9280c93
Schoonhoven, Lisette
46a2705b-c657-409b-b9da-329d5b1b02de
Clancy, Michael, James
ba1ccac9-6737-4c6d-9d8e-b3da7f3ec0a5
Richardson, Alison
3db30680-aa47-43a5-b54d-62d10ece17b7
Kalra, Paul
c93ca328-55ec-4f24-9bd1-38c75489ac7c
May, Carl
b72849ad-c1b0-41bd-a44b-d170aa78b953
30 July 2021
Austin, Rosalynn, Clara
4bc7fd45-753b-4a78-a9d7-85fce9280c93
Schoonhoven, Lisette
46a2705b-c657-409b-b9da-329d5b1b02de
Clancy, Michael, James
ba1ccac9-6737-4c6d-9d8e-b3da7f3ec0a5
Richardson, Alison
3db30680-aa47-43a5-b54d-62d10ece17b7
Kalra, Paul
c93ca328-55ec-4f24-9bd1-38c75489ac7c
May, Carl
b72849ad-c1b0-41bd-a44b-d170aa78b953
Austin, Rosalynn, Clara, Schoonhoven, Lisette, Clancy, Michael, James, Richardson, Alison, Kalra, Paul and May, Carl
(2021)
Do chronic heart failure symptoms interact with burden of treatment? Qualitative literature systematic review.
BMJ Open, 11 (7), [e047060].
(doi:10.1136/bmjopen-2020-047060).
Abstract
Objective Explore the interaction between patient experienced symptoms and burden of treatment (BoT) theory in chronic heart failure (CHF). BoT explains how dynamic patient workload (self-care) and their capacity (elements influencing capability), impacts on patients' experience of illness. Design Review of qualitative research studies. Data sources CINAHL, EMBASE, MEDLINE, PsycINFO, Scopus and Web of Science were searched between January 2007 and 2020. Eligibility Criteria Journal articles in English, reporting qualitative studies on lived experience of CHF. Results 35 articles identified related to the lived experience of 720 patients with CHF. Symptoms with physical and emotional characteristics were identified with breathlessness, weakness, despair and anxiety most prevalent. Identifying symptoms' interaction with BoT framework identified three themes: (1) Symptoms appear to infrequently drive patients to engage in self-care (9.2% of codes), (2) symptoms appear to impede (70.5% of codes) and (3) symptoms form barriers to self-care engagement (20.3% of codes). Symptoms increase illness workload, making completing tasks more difficult; simultaneously, symptoms alter a patient's capacity, through a reduction in their individual capabilities and willingness to access external resources (ie, hospitals) often with devasting impact on patients' lives. Conclusions Symptoms appear to be integral in the patient experience of CHF and BoT, predominately acting to impede patients' efforts to engage in self-care. Symptoms alter illness workload, increasing complexity and hardship. Patients' capacity is reduced by symptoms, in what they can do and their willingness to ask for help. Symptoms can lower their perceived self-value and roles within society. Symptoms appear to erode a patient's agency, decreasing self-value and generalised physical deconditioning leading to affective paralysis towards self-care regimens. Together describing a state of overwhelming BoT which is thought to be a contributor to poor engagement in self-care and may provide new insights into the perceived poor adherence to self-care in the CHF population. PROSPERO registration number CRD42017077487.
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Accepted/In Press date: 29 June 2021
Published date: 30 July 2021
Additional Information:
Funding This work was completed as a part of a fully funded Clinical Academic Doctoral Fellowship at the University of Southampton, Portsmouth Hospitals University NHS Trust, and the National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) Wessex. This article is independent research funded in part by the NIHR ARC Wessex.
Acknowledgments
Paula Sands (PS), Health Sciences Librarian and Kate Lippiett (KL) for their assistance with the creating and adapting the literature searches used in this review. Patient Research Ambassadors (PRA’s) at Portsmouth Hospitals University NHS Trust for providing PPI in this review (Bill Ware, Anna Ganville-Hearson, Graham Edwards, Noreen Cole, Jane Ward, Tim Coney, Darren Jenkinson). Mr Mark Green (MG), Heart Failure Specialist Nurse, whose clinical expertise assisted in the confirmation of the symptom codes used in this review.
Keywords:
adult cardiology, cardiomyopathy, heart failure, qualitative research, quality in health care
Identifiers
Local EPrints ID: 450149
URI: http://eprints.soton.ac.uk/id/eprint/450149
ISSN: 2044-6055
PURE UUID: 7ff8ac5c-d91f-4613-99a4-d1bd9a532052
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Date deposited: 14 Jul 2021 16:30
Last modified: 27 Mar 2024 02:50
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Author:
Rosalynn, Clara Austin
Author:
Michael, James Clancy
Author:
Paul Kalra
Author:
Carl May
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