The lived experiences of adults with congenital heart defects: a qualitative pilot study

Vollständiger Abstract

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Background: The number of adults living with congenital heart defects in the UK is increasing – yet little qualitative research has explored their lived experiences within the context of the NHS. Aim: This study used interpretative phenomenological analysis to explore how adults living with congenital heart defects in the UK make sense of their condition in everyday life. Findings: Three themes were identified: (1) loss and mortality, with participants describing a heightened awareness of death shaped by peer and family bereavement; (2) mental health and congenital heart defects, including emotional strain, feelings of burden and inadequate psychological support; and (3) post-surgical support, marked by inconsistent follow-up, variable access to rehabilitation and gaps in continuity of care. Conclusions: This exploratory study highlights how adults with congenital heart defects may be medically visible but psychosocially overlooked. While services address physical health needs, participants reported unmet psychological and social needs. These findings underscore the importance of proactive psychosocial support across the lifespan and the need for further UK-based research.