"How Long Will This Heart Beat?"-Temporal Experiences of Adults With Congenital Heart Disease: An Interpretative...

Congenital heart disease (CHD) is one of the most prevalent congenital conditions. Over 90% of individuals with CHD now survive into adulthood, yet many experience physical limitations that can lead to a sense of exclusion from social participation. Existing research on adults with CHD highlights a profound sense of otherness and a strong desire for normalization. However, a systematic investigation into the experience of temporality in adults with CHD is currently lacking. Altered experiences of temporality have been documented in individuals with mental disorders and severe physical illnesses, and more recently in patients with heart disease that first manifests in adulthood. In our qualitative study, we included a purposive sample of 14 patients aged 18-29 years. Of these, six participants (four women and two men) were diagnosed with moderate, seven participants (three women and four men) with severe, and one male participant with mild CHD. Phenomenologically semi-structured interviews were conducted and analyzed using interpretative phenomenological analysis. Participants reported that their sense of temporality was altered owing to the serious nature of their heart condition. Their experiences were captured in five key themes: (1) Biographical disruptions led to a changed identity, (2) My life could end unexpectedly, (3) I feel more mature compared to my peers, (4) Temporal flexibility does not exist with CHD, and (5) Finding a balanced relationship with temporality. This study is the first to systematically investigate temporal experiences in adults with CHD. Novel aspects were identified, including the experience of temporal inflexibility and coping strategies for dealing with adverse temporal experiences.