Patient Educ Couns. 2025 Sep 26;142:109364. doi: 10.1016/j.pec.2025.109364. Online ahead of print.
ABSTRACT
BACKGROUND/OBJECTIVES: Congenital heart disease (CHD) refers to a spectrum of structural abnormalities of the heart at birth. Survival and outcomes have improved due to advances in surgery and post-operative care, resulting in more patients transitioning from paediatric to adult healthcare settings. This study aimed to explore varied experiences of this transition and identify ways to improve processes to enable continuity of care in Australia.
METHODS: Purposive sampling was used to recruit a diverse sample of CHD patients from a larger study. In semi-structured online interviews, adult participants were asked to reflect on their childhood transition experience. Interviews were audio recorded, transcribed and coded using framework analysis.
RESULTS: 4 main themes were identified: i) perceived experience of transition, (ii) impact on family and wider support network, (iii) psychosocial needs of the patient, and (iv) the role of evolving independence. Facilitators of a positive transition experience included education, proactive handover and clear information about what to expect. Barriers included lack of empowerment for patients and lack of empathy and holistic care from clinicians. Family impacts included the changing parental role and need for reassurance for caregivers. Psychosocial needs included support for mental health. Evolving independence and maturity influenced individuals’ ability to manage their transition and ongoing care.
CONCLUSIONS: The findings suggest a need to improve processes and communication, to facilitate a more holistic model of care for CHD patients in Australia. This includes planned coordination of transition, clear information and support for mental health and overall wellbeing of CHD patients and their caregivers.
PRACTICE IMPLICATIONS: Structural changes to improve the chance of successful transition could lead to better long-term health outcomes for individuals with CHD.
PMID:41045646 | DOI:10.1016/j.pec.2025.109364
