Illness perception in advanced heart failure: a hermeneutic phenomenological study

Heart failure (HF) is a chronic, progressive condition that profoundly affects patients’ physical functioning and their psychological, social, and existential well-being. Beyond its clinical manifestations, patients continuously interpret and assign meaning to their illness, and these meanings shape how they experience and respond to the challenges of everyday life with heart failure. Understanding illness perception from patients’ perspectives is essential for appreciating how they make sense of heart failure and live with the illness in everyday life. This qualitative study was conducted in 2022 using a hermeneutic phenomenological design guided by van Manen’s methodology. Twelve patients with New York Heart Association (NYHA) class III–IV heart failure (mean age: 45.0 ± 12.3 years) were purposively recruited from the outpatient Heart Failure Clinic of Tehran Heart Center, a tertiary referral cardiovascular center affiliated with Tehran University of Medical Sciences, Tehran, Iran. Data were collected through in-depth semi-structured interviews until meaning saturation was achieved. A total of 22 interviews were conducted, including follow-up interviews when clarification or deeper exploration of participants’ experiences was needed. Data were analyzed using van Manen’s interpretive phenomenological approach. Four main themes were identified: (1) a sense of hope despite hopelessness, (2) living under the shadow of mortality, (3) reinterpreting one’s past through illness, and (4) redefining independence through life-sustaining support. These findings show how participants continuously reconstructed the meaning of living with advanced heart failure through the ongoing negotiation of hope, mortality, reinterpretation of the past, and a changing sense of independence. Illness perception in advanced heart failure is not a static cognitive appraisal but a dynamic process of meaning-making through which patients reconstruct the meanings of hope, mortality, past experiences, and independence while living with a progressive illness. Recognizing these lived meanings may help nurses and other healthcare professionals provide more person-centered care by addressing patients’ emotional, existential, and support needs alongside symptom management.