Involving Adolescents in Decision-Making in Pediatric Organ Transplantation: A Qualitative Study in Switzerland

In pediatrics, the triadic relationships between the adolescent, parents, and healthcare providers, as well as an adolescent's evolving developmental status, render decision-making unique and challenging. The aim of this study was to explore adolescents' decision-making preferences regarding pediatric organ transplantation.

Semi-structured one-on-one interviews were carried out with 17 patients aged 12-30 years (M = 20, SD = 5) who received organ transplants between the ages of 9 and 20 years (M = 13, SD = 3). The data were qualitatively analyzed via content analysis with a focus on an adolescent's involvement in decision-making.

The participants considered various factors important for their appropriate involvement in decisions. These factors were grouped into three main areas: (1) a participant's role in decision-making, (2) determinants of involvement in decision-making, and (3) expression of the final decision. The most frequently described factors included the adolescent's age, concerns about what was happening to their body, the importance of social support systems, capacity to understand, and time given to adapt.

According to Swiss law, being a minor does not deem adolescents incompetent; hence, adolescents can be legally competent in making medical decisions. Moreover, adolescents are the ones most affected by their illness and their respective treatment. It is therefore crucial to give a voice to them and to center their preferences in decision-making. Our study shows that a range of distinct preferences concerning decision-making and involvement exist among adolescents and, as such, can serve as points of leverage to improve the quality of care for this understudied patient population.