Transition and transfer in congenital heart disease- Experiences and perspectives of young people with CHD and their parents/caregivers

Abstract: Children born today with congenital heart disease (CHD) will most likely live into adulthood and as such need to transition their care from the paediatric cardiac clinic to the adult cardiac clinic. How young people and their parents/caregivers perceive this process of transition is not well understood. Also not well understood are their understanding of the transition process. This literature review of qualitative studies aimed to investigate the experiences of young people with CHD and their parents/caregivers around transition to adult care. Searches were performed in PubMed, Scopus, CINAHL and an EndNote library of transition literature. Four themes and nine sub-themes were found. The results indicated that young people and their parents/caregivers want and need more information about their health, lifestyle factors and the transition process. Trust in the care team was important as was peer-support and peerlearning. Parents had a hard time letting go of responsibility for care, though they understood that the shift in responsibility was a natural and normal part of growing up. Timing of transition was also considered important, with preferences for individualisation of timing according to maturity. Young people and their parents also perceived the young people’s selfmanagement and communication skills were lacking, causing concern for the parents in particular. Young people with CHD and their parents/caregivers need person-centred care during the transition to adult care. A care environment that fosters trust in the care team and supports them to become capable of self-management and with sufficient communication skills to be able to advocate for themselves.