How do symptoms of chronic heart failure influence the burden of treatment experienced by patients?

Abstract

Chronic heart failure (CHF) is a syndrome of increasing prevalence with invasive symptoms which persist despite optimal medical treatments. Responsibility for CHF management is passed to patients through the assignment of self-care regimens. It is often claimed that patients with CHF fail at self-care engagement and non-adherence is cited as the reason for re-admissions, poor quality of life, and clinical outcomes. Poor engagement in self-care is a possible indication of the overwhelming burden of treatment (BoT). When workload (tasks patients must do to live with and manage their illness) outweighs capacity (internal capabilities and external resources which enable them to do the work) patients become overwhelmed. The role of symptoms on BoT has not been investigated. Presented in this thesis are six papers, four were accepted for publication, one was submitted for consideration, and the final one will be submitted after the fifth is accepted. Together they identify, describe, and explain the role of CHF symptoms on BoT. The thesis is underpinned by a pragmatic abductive approach utilizing mixed methods. The empirical research is grounded on BoT theory to examine the over-arching research question: How do symptoms of chronic heart failure influence the burden of treatment experienced by patients? Beginning with an editorial that describes how the major theories of BoT and self-care were brought together to inform the research question. A protocol paper describes the overall design of the empirical research. A qualitative evidence synthesis examines 35 qualitative articles for symptoms interaction with BoT. Next, the results of a cross-sectional survey of patients with CHF (n=333) who completed 3 questionnaires capturing symptoms and BoT are presented. Followed by findings from a sub-sample of survey participants (n=32) who participated in semi-structured interviews to explore the proposed relationship of symptoms with BoT. Finally, a CHF specific BoT theory was developed by integrating all research findings and is presented in a final paper. The body of research has identified how symptoms of CHF interact with BoT and identified that other factors (illness pathology and identity, task value and performance, and available support structures) alter the relationship between symptoms and BoT. This results in situations where patients may report low burden, despite living lives ruled by the management of CHF. The collective findings from the research have informed a CHF specific BoT theory. The theory offers an alternative way of viewing CHF patients’ engagement with self-care and an alternative way of considering patients with CHF clinically. Incorporating the theory into clinical practice could result in the creation of a minimally disruptive model of care.

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Identifiers

ORCID for Rosalynn Clara Austin: orcid.org/0000-0001-8274-4836

ORCID for Alison Richardson: orcid.org/0000-0003-3127-5755

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