TY - JOUR
T1 - Do chronic heart failure symptoms interact with burden of treatment?
T2 - Qualitative literature systematic review
AU - Austin, Rosalynn C
AU - Schoonhoven, Lisette
AU - Clancy, Mike
AU - Richardson, Alison
AU - Kalra, Paul R
AU - May, Carl R
N1 - Funding Information:
Contributors RA drafted this paper. RA, LS, and CRM developed the conceptual framework that informed this work. RA designed the review with support and guidance from CRM, LS, and PRK. RA assisted by CRM and LS performed the work of the literature searches. MC assisted in the screening of the articles and CRM and LS acted as the arbiter for any disputes. RA performed the first-line analysis and was guided by CRM, LS, and AR throughout constant comparison analysis. PRA and MG checked line-by-line symptom coding, refined the symptom coding structure and confirmed the results to be representative of their personal patient experiences. CRM, LS, AR and PRK critically reviewed the manuscript for intellectual and clinical content. All authors approved the final version of the paper. RA is the guarantor. 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. Disclaimer The views expressed in this publication are those of the author(s) and not necessarily those of the National Institute for Health Research, NHS or the Department of Health and Social Care.
Publisher Copyright:
© Authors 2021
PY - 2021/7/30
Y1 - 2021/7/30
N2 - 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.
AB - 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.
KW - adult cardiology
KW - cardiomyopathy
KW - heart failure
KW - qualitative research
KW - quality in health care
UR - http://www.scopus.com/inward/record.url?scp=85111772017&partnerID=8YFLogxK
U2 - 10.1136/bmjopen-2020-047060
DO - 10.1136/bmjopen-2020-047060
M3 - Review article
C2 - 34330858
SN - 2044-6055
VL - 11
SP - 1
EP - 13
JO - BMJ Open
JF - BMJ Open
IS - 7
M1 - e047060
ER -