March 11, 2026

New study highlights support and education needs for pediatric transplant families

A recent study highlights the need for stronger support and age-appropriate education for people who received kidney transplants as children—and for their caregivers.  

Kidney transplantation is often the treatment of choice for children with kidney disease. But the process can be complex and require many adjustments for families.

To better understand these experiences, Michelle Ruhl—researcher and director of the pediatric nephrology program at the University of Alberta—and fellow researchers in Saskatchewan interviewed 23 people, including 10 patients (ranging in age from teens to 40s) who had previously received a transplant as a child and 13 caregivers (ranging in age from 20s to 60s). The goal was to learn more about the challenges families face throughout the transplant process. 

Participants described a wide range of impacts, including social, mental health, physical, and lifestyle changes. Some said they were surprised by the number of follow-up medical appointments and the side effects of transplant medications.  

Others expected the transplant to be a “cure” for kidney disease and were unprepared for the ongoing challenges and considerations that can follow surgery, such as managing medications and avoiding infection.  

Many participants also emphasized the need for support to help meet the emotional, practical, and health care needs of patients and caregivers. Education delivered both before and after surgery, to help prepare patients for the transition to post-transplant life, was another key theme. Participants said it was most helpful when information was provided gradually and repeated over time, rather than all at once. 

Caregivers often wanted detailed, proactive information so they could manage care and anticipate possible complications. Patients—especially younger children—benefited more from simpler explanations that were sensitive to their age and stage of development. 

Overall, the findings suggest that personalized education and ongoing support can help children and families feel more prepared for life after a kidney transplant.