The Heart as a Transplanted Organ: Unspoken Struggles of Personal Identity Among Adolescent Recipients

In adult heart transplant recipients, a transformation of the self has been observed simultaneous to the "emotional integration" of the heart following transplantation. However, the experiences of adolescents following heart transplantation are virtually unexplored within the current literature. Our qualitative findings address this gap and explore struggles with personal identity in adolescent heart transplant recipients. Twenty-seven heart transplant patients (67% female, age range: 12 to 18 years) from a large teaching hospital participated in 1-on-1 interviews, which were transcribed verbatim and coded, using methods of constant comparison within a grounded- theory approach. Emergent themes were identified and refined through team consensus. Many participants identified emotional and psychological concerns regarding accepting foreign hearts as their own. This manifested in a range of experiences such as sadness or guilt regarding the death of the donor. Adolescent participants also pondered the potential acquisition of personal qualities or characteristics of the donor. Many participants speculated extensively about the donor and "longed for" donor information. Findings point to the meaning-making processes that adolescent heart transplant patients endure as they grapple with the presence of a foreign, life-giving organ within their bodies and the potential impact on their psychosocial well-being. This paper encourages health care professionals to initiate discussions before and following transplantation that address adolescents' concept of self and offers recommendations for clinical care.