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Qualitative interviews results from heart failure survey respondents on the interaction between symptoms and burden of self-care work

Qualitative interviews results from heart failure survey respondents on the interaction between symptoms and burden of self-care work
Qualitative interviews results from heart failure survey respondents on the interaction between symptoms and burden of self-care work

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 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.

burden of treatment, chronic heart failure, mixed methods, qualitative research, self-care, symptoms
0962-1067
Austin, Rosalynn Clara
4bc7fd45-753b-4a78-a9d7-85fce9280c93
Schoonhoven, Lisette
46a2705b-c657-409b-b9da-329d5b1b02de
Richardson, Alison
3db30680-aa47-43a5-b54d-62d10ece17b7
Kalra, Paul R.
7a4ef3d4-0168-4e03-83c4-4769c62805f4
May, Carl R.
ef3787f2-f6cf-4e96-954a-4012f6879c89
Austin, Rosalynn Clara
4bc7fd45-753b-4a78-a9d7-85fce9280c93
Schoonhoven, Lisette
46a2705b-c657-409b-b9da-329d5b1b02de
Richardson, Alison
3db30680-aa47-43a5-b54d-62d10ece17b7
Kalra, Paul R.
7a4ef3d4-0168-4e03-83c4-4769c62805f4
May, Carl R.
ef3787f2-f6cf-4e96-954a-4012f6879c89

Austin, Rosalynn Clara, Schoonhoven, Lisette, Richardson, Alison, Kalra, Paul R. and May, Carl R. (2022) Qualitative interviews results from heart failure survey respondents on the interaction between symptoms and burden of self-care work. Journal of Clinical Nursing. (doi:10.1111/jocn.16484).

Record type: 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 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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Accepted/In Press date: 28 July 2022
e-pub ahead of print date: 9 August 2022
Additional Information: 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: 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.
Keywords: burden of treatment, chronic heart failure, mixed methods, qualitative research, self-care, symptoms

Identifiers

Local EPrints ID: 470481
URI: http://eprints.soton.ac.uk/id/eprint/470481
ISSN: 0962-1067
PURE UUID: 2dcb298f-38fb-48cb-ac3d-9d6ac786c114
ORCID for Rosalynn Clara Austin: ORCID iD orcid.org/0000-0001-8274-4836
ORCID for Lisette Schoonhoven: ORCID iD orcid.org/0000-0002-7129-3766
ORCID for Alison Richardson: ORCID iD orcid.org/0000-0003-3127-5755

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Date deposited: 11 Oct 2022 16:49
Last modified: 12 Oct 2022 01:52

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Contributors

Author: Rosalynn Clara Austin ORCID iD
Author: Paul R. Kalra
Author: Carl R. May

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