Illness perceptions of people living with chronic heart failure and limited community disease management

AimTo explore the cognitive representations and emotional responses to living with chronic heart failure of people receiving limited community disease management.BackgroundIndividuals living with heart failure face self-care and emotional challenges due to the overwhelming nature of adapting to lifestyle changes, particularly in subtropical areas.DesignQualitative descriptive. We applied Leventhal's Common Sense Model of Self-Regulation as the framework for interviews and analyses.MethodsTwenty patients with chronic heart failure were interviewed during a hospital admission for exacerbation of their condition in a tertiary hospital in Thailand.ResultsAnalysis 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.ConclusionChronically 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 CareLeventhal'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.ImpactThe 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 MethodThe Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline was used to explicitly and comprehensively report our qualitative research.Patient or Public ContributionPatients contributed to the conduct of the study by participating in the data collection via face-to-face interviews.