Psychosocial Contradictions in the Transition to Adulthood for Patients with Congenital Heart Disease - A Qualitative Study.

Abstract

Background: While survival into adulthood among individuals with congenital heart disease (CHD) has markedly improved, the psychosocial challenges accompanying the transition to adult care remain underexplored, particularly in diverse cultural contexts. This study explored the lived experiences and psychosocial contradictions of young adults with CHD in Iran, emphasizing the influence of cultural and systemic factors on this transition.

Materials and methods: A qualitative descriptive approach was used to capture the experiences of 15 individuals aged 16-40 years, who were diagnosed with CHD, along with five family caregivers and six healthcare providers (HCPs). Semi-structured interviews were conducted and analyzed through conventional content analysis to identify key patterns and underlying meanings within the narratives. Data management and systematic coding were facilitated via MAXQDA (version 2020).

Results: Four main themes revealed profound psychosocial contradictions: (1) "Caught between Independence and Fear," describing the struggle between autonomy and anxiety over leaving pediatric care; (2) "Hidden Illness, Visible Self," highlighting the dissonance between outward appearance and internal limitations; (3) "Identity in Question," involving uncertainty in self-perception shaped by chronic illness; and (4) "Navigating an uncertain future," capturing concerns about long-term health, relationships, and life planning.

Conclusions: This study revealed that transitioning to adulthood with CHD is fraught with psychosocial contradictions extending beyond clinical management. Our findings highlight an urgent need for holistic, culturally tailored support systems in Iran that integrate psychosocial well-being with clinical continuity. These insights can empower healthcare providers, families, and policymakers to develop more empathetic and effective transition strategies, including culturally sensitive counseling and improved access to information.