Restriction and dependence to autonomy and freedom: transformation in adolescent heart transplant recipients

The process of heart transplantation poses numerous challenges and adaptive tasks for paediatric patients and their families. Few studies have examined how the experience of transplant interacts with developmental transitions such as adolescence, a period of significant change, and adjustment in itself. We explored adolescent heart transplant recipients' and their parents' experience of transplant from the point at which their heart condition was diagnosed to several months after transplantation. We adopted a developmental focus, to consider how participants negotiated the tasks of adolescence in the context of their transplant experiences. A qualitative approach was used to interview five adolescent-parent dyads, who reported few post-transplant complications, and the data were analysed according to the principles of IPA. Our findings revealed transplant to be a transformative experience, with two themes marking a contrast between pre- and post-transplant states: "Restriction and Dependence" and "Autonomy and Freedom." The themes are considered in relation to adolescent development. We propose that clinicians working with paediatric heart transplant recipients and their families need to consider the particular developmental challenges faced by adolescent patients and view the attainment of developmental milestones alongside physical and psychological markers of successful adjustment.