Kidney Transplant Recipients And Caregivers Call For Individualized Education

When educational materials and transplantation information are not delivered gradually and repeatedly, pediatric patients and their caregivers experience overwhelm and unpreparedness during the kidney transplant process, according to new research.1

To mitigate these problems, study investigators emphasize the need for age-appropriate, emotionally sensitive content for pediatric patients and the individualized and differentiated delivery of information between caregiver and patient to inform post-transplantation recovery.1

“The purpose of this study was to conduct an exploration of the educational needs during the pediatric process by interviewing patients who have received a kidney transplant as a child as well as with caregivers,” wrote study investigator Holly Mansell, PhD, an associate professor in the College of Pharmacy and Nutrition at the University of Saskatchewan, and colleagues. “Our objectives were to characterize the transplant experiences of the participants and to learn about their educational requirements before and after a pediatric kidney transplant.”1

Approved by the Behavioral and Ethics Review Board of the University of Saskatchewan, Mansell and colleagues identified patients and caregivers through the pediatric and adult kidney transplant programs. These participants were approached by their regular healthcare provider. Patients who were < 18 years of age had their caregiver informed and were offered the opportunity to participate jointly or individually. To preserve patient confidentiality, their care team was not informed of study participation status.1

Once enrolled, investigators contacted patients and caregivers with detailed study information packages. They were scheduled for a recorded telephone or video interview at least 48 hours after giving informed consent.1

After an extensive review of 5 databases for the literature on pediatric transplant education2, the study investigators designed the questions and interview approach in collaboration with a patient partner. They included questions designed to explore participants' lived experiences, determine which information was perceived to be important throughout the stages of the transplant process, assess satisfaction with their educational experience, and tabulate suggested resources/supports for improvement.1

Three overarching content categories were identified in the transcripts, including

• Transplant impacts (social, mental health, physical, lifestyle, returning to normal, and new life perspective).
• Transplant expectations (transplant as a cure and unexpected experiences).
• The need for support throughout the transplant process (practical support, mental health support, healthcare support, support through shared-lived experience, and challenges related to finding a community).1

The qualitative descriptive study included a total of 23 individuals, of which 13 were caregivers, 20-60 years of age, and 10 were patients, 13-42 years of age, who had received a kidney transplant as a child.1

Upon completion of the interviews, investigators reported transplantation's profound impact on patients and caregivers alike, including social, mental health, physical, lifestyle, and the new life perspective. The social impacts included peer and familial isolation and a sense of “missing out” caused by lifestyle restrictions.1

According to investigators, some patients and caregivers embarked on their journey believing kidney transplantation would cure all ailments and life would go back to normal, unaware kidney transplant was not a cure for their kidney disease. Additionally, some caregivers explained they were unprepared for wait times, the numerous hospital visits required during pre-transplant evaluation, and the reality of post-transplant care.1

Participants described to investigators how support networks allowed them to focus on the transplant while alleviating the demands of daily tasks. For the most part, any form of practical, mental health, healthcare, and shared lived experience support was valued from the patient and caregiver perspective.1

While patients and caregivers divulged shared overlapping educational priorities to investigators, such as the desire for clear expectations and accessible formats, their needs differentiated in important ways. Caregivers often sought comprehensive, proactive information to manage care and anticipate complications, preferring structured resources like binders and verbal explanations.1

In contrast, patients, particularly younger ones, benefited more from simplified, emotionally sensitive education tailored to their developmental stage, often delivered through visual or interactive formats, such as story books, illustrative “road maps”, and media such as animated videos.1

To investigators, caregivers disclosed their role as information filters, and in turn, patients shared they relied on caregivers for the interpretation of information. According to investigators, these differences highlight the importance of designing age-appropriate and role-specific transplant education to ensure patients and caregivers are adequately supported.1

“As healthcare providers, we should strive to provide personalized and holistic education to facilitate expectations and prepare patients and caregivers for the journey that lies ahead,” investigators concluded. “The participants’ call for enhanced social support throughout the transplant process should not be ignored. The insights gathered from the study will help inform the development of educational resources for pediatric patients and caregivers.”1

References

1. Ruhl M, Burghall A, Groot B, et al. Characterizing the Experiences and Educational Needs of Patients and Caregivers During the Kidney Transplant Process. Canadian Journal of Kidney Health and Disease. 2025;12. doi:https://doi.org/10.1177/20543581251399080

2. Burghall A, Ruhl M, Rosaasen N, et al. A scoping review of pediatric transplant education. Pediatric Transplantation. 2023;27(7). doi:https://doi.org/10.1111/petr.14578