"When I had my transplant, I became normal.": Adolescent perspectives on life after kidney transplantation

This study aimed to explore experiences and perspectives of adolescent kidney transplant recipients following kidney transplantation. We conducted 22 in-depth, face-to-face interviews with adolescent kidney transplant recipients (aged 12-19 yr) from five Australian pediatric transplant units. We analyzed the interview transcripts for descriptive and analytical themes. The overarching theme was achieving a sense of normality. Having the same opportunities and potential to achieve as other adolescents facilitated better adjustment, well-being and positive development after transplant. Five facilitators and five barriers to achieving a sense of normality were identified. The facilitators were developing their own identity, peer acceptance, making medications routine, freedom and energy, and support structures. The barriers included identity crisis, peer rejection, aversion to medications, lifestyle limitations, and fear and uncertainty. The adolescents felt more knowledge was needed on the technical, medical, and experiential aspects of transplantation and on pertinent issues such as alcohol, drugs, and substance use. Adolescent kidney transplant recipients value normality and have specific information needs about the effect of kidney transplantation on their physical appearance and the tolerance of drugs and alcohol. Novel approaches are needed to foster self-confidence and sense of normality and to provide comprehensive information on the patient journey following kidney transplantation.