Understanding disease and responding to symptoms: heart failure patients’ perspectives on self-care information needs

Abstract

Heart failure is a chronic condition that requires ongoing self-management. Patients need knowledge to understand their diagnosis, manage medications and lifestyle changes, monitor signs and symptoms, and know when to seek help. Nonetheless, there is limited understanding of patients' perspectives and experiences regarding their information needs. This study aimed to explore how patients with heart failure experience and perceive their information needs for self-care and for responding to changes in their health condition. A descriptive qualitative study was conducted at the outpatient cardiac clinic of General Hospital in Surakarta during July–August 2026. Fifteen adults with heart failure, classified as NYHA functional class II–III, were purposively recruited. Data collection and analysis proceeded iteratively, and recruitment continued until subsequent interviews no longer generated substantially new categories or relevant information. Data were collected through face-to-face semi-structured interviews and field notes. Interviews were audio-recorded with participants’ consent and analyzed by identifying meaningful statements, coding, categorizing, and developing subthemes and themes. Five themes emerged: understanding heart failure and its implications, medication management, lifestyle management, monitoring signs and symptoms, and decision-making during symptom worsening. Participants described a range of responses to changes in their condition, from resting and taking medication to seeking family assistance or medical care. The findings suggest that information needs extend beyond understanding the disease to recognizing changes in health status and determining appropriate actions. Heart failure patients need information that supports understanding of disease changes and appropriate decision-making. Patient-centered and continuous nursing education involving family members may support effective self-care.