Qualitative interviews results from heart failure survey respondents on the interaction between symptoms and burden of self-care work
Austin, Rosalynn C; Schoonhoven, Lisette; Richardson, Alison; Kalra, Paul R; May, Carl R
(2023) Journal of Clinical Nursing, volume 32, issue 15-16, pp. 4649 - 4662
(Article)
Abstract
AIMS AND OBJECTIVES: Following a cross-sectional survey, a sub-sample of participants was interviewed to explore the interaction between symptoms and burden of treatment. BACKGROUND: Burden of treatment considers both the work associated with illness and treatment, including self-care work, as well as the individuals' capabilities and resources to engage in
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that work. The recent survey revealed the existence of a complex interaction. DESIGN: Qualitative abductive analysis of semi-structured interviews. METHODS: Adults with heart failure who participated in the survey were purposely sampled and invited to participate in semi-structured interviews. Location and mode of interview varied by participant choice. Excerpts from the verbatim transcripts were assessed for interactions between symptoms and burden of treatment, and when identified these were characterised and explained. We followed COREQ checklist for reporting. The patient research ambassador group was involved from research design to dissemination. RESULTS: Participants (n = 32) consistently discussed how symptoms altered their capability to engage in self-care work. As symptom intensity increased the difficultly of their self-care work increased. A number of intervening factors appeared to influence the relationship between symptoms and burden of treatment. Intervening factors included illness pathology, illness identity, the value of the tasks attempted and available support structures. These factors may change how symptoms and burden of treatment are perceived; a model was constructed to explain and summarise these interactions. CONCLUSIONS: The interaction between symptoms and burden of treatment is complex. Intervening factors-illness identity and pathology, task value and performance, and available support structures-appear to exert a strong influence on the interaction between symptoms and burden of treatment. RELEVANCE TO CLINICAL PRACTICE: These intervening factors present clinicians and researchers with opportunities to develop interventions that might reduce burden of treatment and improve symptoms and quality of life. CLINICAL TRIAL REGISTRATION: SYMPACT was registered with ISRCTN registry: ISRCTN11011943.
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Keywords: burden of treatment, chronic heart failure, mixed methods, qualitative research, self-care, symptoms, General Nursing, Journal Article
ISSN: 0962-1067
Publisher: Wiley-Blackwell
Note: Funding Information: This work was supported 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 supported in part by the NIHR ARC Wessex. CRM's contribution was supported by NIHR ARC North Thames. 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. The Research and Innovation department at Portsmouth Hospitals University NHS Trust granted the researchers funding for the transcription of 60% of the interviews, and the purchase of a Dictaphone used to record the interviews. Funding Information: Thank you to the individuals with heart failure who kindly gave of their time to participate in this phase of SYMPACT. Serena Howe (Principle Investigator) at Portsmouth Hospitals University NHS trust (PHU) and research team members: Amanda Bakes, Claudia Lameirinhas, Joanna Candler, Kerrie Scott, Charlotte Turner, and Anne Withers. Simon Smith (Principle Investigator) at University Hospitals of Southampton NHS foundation trust and research team members: Laura Baldwin, Sarah Hammond, Jake Harvey, Marta Snell, Constance Temple-Brown, and Hannah Yates. Emma McLoughlin (Principle Investigator) at Solent NHS trust and research team members: Lindsey Cooke Natalie Parker, Emma Searle and Sally Shillaker. They all helped to contact and approach participants from Phase I of SYMPACT. The patient research ambassador group at PHU who continue to provide patient and public involvement for SYMPACT. For this phase, group members (Bill Ware, Anna Ganville-Hearson, Graham Edwards, Noreen Cole, Carole Kind, Tim Coney, Chris Stapes and Darren Jenkinson) provided introductions to community support groups, editing patient-facing documents, creating short name of study, informing study logo choice, sense checking conclusions drawn from data and editing the findings communication to participants. Linda Morris and Kirsten Hobday (medical secretaries at PHU) transcribed 60% of the interviews. Funding Information: Professor Alison Richardson is a National Institute for Health Research (NIHR) Senior Investigator. Professors Carl May and Alison Richardson collaborated to develop burden of treatment theory. Dr Rosalynn Austin recieves support from the NIHR ARC Wessex and was funded by an ARC Wessex Internship. Publisher Copyright: © 2022 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.
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