Illness perceptions of people living with chronic heart failure and limited community disease management
Authors: Koontalay Apinya , Botti Mari , Hutchinson Anastasia 
Published: June 2024

Aim

To explore the cognitive representations and emotional responses to living with chronic heart failure of people receiving limited community disease management.

Background

Individuals living with heart failure face self‐care and emotional challenges due to the overwhelming nature of adapting to lifestyle changes, particularly in subtropical areas.

Design

Qualitative descriptive. We applied Leventhal's Common Sense Model of Self‐Regulation as the framework for interviews and analyses.

Methods

Twenty patients with chronic heart failure were interviewed during a hospital admission for exacerbation of their condition in a tertiary hospital in Thailand.

Results

Analysis of the components of Leventhal's model of cognitive representations of illness revealed two themes relating to Illness Identity: (1) lack of knowledge of the diagnosis and how to recognise symptoms of the disease, and (2) recognition of symptoms of an exacerbation of CHF was based on past experience rather than education. These resulted in delays responding to cardiac instability and confusion about the intent of treatment. Participants recognised the chronicity of their disease but experienced it as an unrelenting cycle of relative stability and hospitalisations. Perceived Controllability was low. Two themes were: (1) Low perceived trust in the efficacy of medical treatment and lifestyle changes, and (2) Low perceived trust in their ability to comply with recommended lifestyle changes. The Consequences were significant emotional distress and high burden of disease. The two themes of emotional responses were (1) Frustration and hopelessness with the uncertainty and unpredictability of the disease, and (2) Sense of loss of independence, functional capacity and participation in life's activities.

Conclusion

Chronically ill patients need support to understand their illness and make better treatment and lifestyle decisions. Improving patients' self‐efficacy to manage treatment and symptom fluctuations has the potential to improve their mental well‐being and minimise the impact of their condition on suffering and participation in employment and community.

Implications for the Profession and/or Patient Care

Leventhal's Common Sense Model of Self‐Regulation can be used to examine cognitive and emotional elements of illness perceptions, which link to individuals' ability to make informed decisions about disease management and influence health behaviours. Understanding illness perceptions underpins strategies for enhancing and sustaining self‐management behaviours.

Impact

The study findings accentuate the need to establish long‐term condition support programs in low‐middle income countries where the burden of heart failure is increasing exponentially.

Reporting Method

The Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline was used to explicitly and comprehensively report our qualitative research.

Patient or Public Contribution

Patients contributed to the conduct of the study by participating in the data collection via face‐to‐face interviews.