Exploring the Self-Care Experiences of Adults With Heart Failure in Australia: A Qualitative Study

Heart failure is a complex, progressive syndrome with significant impacts on quality of life and daily functioning. This study aimed to understand the self-care experiences of community-dwelling adults with heart failure in Australia while also portraying the context and impact of these experiences on participants. We focused on patients’ accounts of self-care, irrespective of their alignment with existing definitions or guidelines. A qualitative approach using in-depth interviews was chosen to capture the richness of lived experience. Nine participants with heart failure were recruited through advertisements distributed by community heart support organizations and social media to take part in a one-to-one online or telephone interview. Data were analyzed using reflexive thematic analysis informed by a critical realist perspective. Three themes were developed, offering insight into how participants experienced self-care: “self-care as balancing the visibility and invisibility of living with heart failure,” “self-care as developing understanding and being (mis)understood,” and “self-care as navigating relationships.” This study shows that people with heart failure use self-care in ways that differ from traditional clinical expectations. The findings suggest that current heart failure management approaches may be missing crucial aspects of how people actually live with this condition. Participants were equally concerned with managing their social identity, maintaining family relationships, and integrating self-care into their existing life routines. Effective interventions need to address these broader concerns, not just clinical outcomes.