Characterizing the Experiences and Educational Needs of Patients and Caregivers During the Kidney Transplant Process

Kidney transplantation, a life-saving therapy for children with kidney disease, remains challenging to navigate for patients and families.

To elucidate the experiences and educational needs of patients who have received a kidney transplant and their caregivers.

Qualitative descriptive study.

One province in Canada (Saskatchewan).

Patients who received a pediatric kidney transplant, transplant recipients and caregivers.

Semi-structured interviews were conducted via video or by phone and recorded and transcribed verbatim in this qualitative descriptive study. Qualitative content analysis was used to analyze the data. Decontextualization involved an inductive approach, whereby the text was coded and organized into categories and subcategories. Dedoose^® software was used to facilitate this process.

Twenty-three individuals participated, including 13 caregivers (aging in range from 20's to 60's) and 10 patients who had previously received a transplant (aging in range from adolescents to 40's). Three categories emerged from their experiences: (1) the impact of the transplant on the individual (subcategories social, mental health, physical, lifestyle, returning to normal and new life perspective); (2) transplant expectations (transplant as a cure, unexpected experiences); and (3) the need for support throughout the transplant process (practical support, mental health support, healthcare support, support through shared-lived experiences, and challenges related to finding a community). Regarding education, participants identified the need for personalized, age-appropriate education delivered in digestible formats, with clear expectations, timely reinforcement, and emotional support tailored to both patients and caregivers.

Participants were recruited from a single small center in Canada. Patient participants had received their transplant at least 5 years prior to participation in the study and were reflecting on their past experiences.

Feeling prepared for the transplant journey impacts the transplant experience and kidney transplant education can facilitate care and clarify expectations. The insights gathered from the study will help inform the development of educational resources for patients and caregivers.