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

Abstract

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.

A struggle to survive: The experience of awaiting pediatric heart transplantation

“…These pretransplant emotions and experiences have been echoed in the findings of Adams et al. , Lawrence and Fricker , Serrano‐Ikkos et al. , and Wray and Radley‐Smith , as well as in the qualitative literature exploring the perceptions of adolescents with congenital heart disease .…”

Elucidating the nature of transformation in the adolescent transplant patient: Time to move from knowledge to action

“…The transformation is not a purely dichotomous one as Adams et al. purport in this month's article. We know that adolescence is a period rife with complex milestones, developmental changes, adjustment, battles for autonomy, increased risk for body dissatisfaction and body image challenges and a changing sense of self .…”

“…This month, Adams et al. explore the transformative nature of the adolescent transplant experience. To truly understand the nature of transformation in the adolescent transplant recipient, it must first be clarified what it means when we refer to the experience as transformative.…”

“…While the depiction by Adams et al. of the heart transplant experience in adolescents being transformative is not novel, by delving further into the perspectives of the adolescent and their parents, they are able to elucidate some useful insights into their lived experience. The authors describe some established themes of life after transplantation in a small and rather homogenous sample of adolescent transplant recipients, with minimal post‐transplant complications.…”

“…This month, in their article “Restriction and dependence to autonomy and freedom: Transformation in adolescent heart transplant recipients,” Adams et al. strive to explore the transformative nature of transplant for adolescents and their parents by investigating how the experience of heart transplantation interacts with the developmental transition of adolescence in a qualitative study of five adolescent–parent dyads. While the goal of authentic understanding of the lived experience in adolescence is sought, the context and perspective of a wider and more heterogeneous population of adolescent heart transplant recipients will be required to move the field forward.…”