*Purpose: Describe the experiences of pediatric patients and their families after kidney transplant. Our qualitative study aimed to understand (1) how these individuals describe and develop a “normal life” after transplant and (2) how this view affects their ability to self-manage.

*Methods: Pediatric kidney transplant recipients and their families were recruited from a pediatric transplant center in the United States. All participants were asked to submit photographs related to when they feel: (1) worried, (2) confident, (3) similar to their peers without kidney disease, and (4) different from their peers without kidney disease. During interviews, participants were asked to share their experiences using the photos as prompts. Interviews were recorded, transcribed and analyzed using an inductive grounded theory approach to identify common themes.

*Results: 10 pediatric kidney transplant recipients, ages 7-21 years, and 9 parents completed the study. All participants described the profound, life changing impact of the kidney transplant, resulting in periods of highs and lows. These changes led to the development of a new facet of their identities, both as individuals (a “kidney kid”) and as a family unit (family/parent of a “kidney kid”). Our analysis identified five tensions that describe and form this new Kidney Identity: (1) exchanging information, (2) managing transitions, (3) building confidence, (4) telling their transplant stories, and (5) normalizing the transplant journey. As patients progressed through their transplant journey, tensions shifted depending on both their actual and perceived clinical status. Positive health outcomes increased feelings of self-confidence and personal security resulting in increased (1) interest and ability to express themselves, (2) willingness to share their story with others, and (3) capacity to build strong peer connections. Positive changes within their Kidney Identity led to improved self-efficacy, autonomy, and self-management, further improving their clinical status. However, as setbacks occurred, individuals regressed in one or more of the five Kidney Identity tensions, with negative consequences.

*Conclusions: After kidney transplant, patients and families develop a new Kidney Identity that positively influences their ability to engage in self-management. In future work, we plan to longitudinally assess and identify an individual’s movement within each of the five Kidney Identity tensions after transplant. We believe this will support self reflection on one’s progress after transplant and help clinicians identify barriers which prevent successful patient and family engagement in their own care. Surfacing these five tensions and making them visible to all stakeholders has the potential to help patients, families, and clinicians ensure successful health outcomes.

« Back to 2021 American Transplant Congress