Introduction: The education of kidney transplant candidates and their families is the first step of the transplant process. Education aims to ensure those involved are fully informed about potential benefits, risks and outcomes and are engaged in the transplant workup process. Currently each pediatric kidney transplant program across Canada has its own education materials, which are mostly developed without input from patients or caregivers. The breadth of subjects covered, agreement on content, and quality of material is highly variable. This poster describes the consensus-driven process to develop targeted pan-Canadian education materials for pediatric kidney transplant candidates and their families. Our ultimate goal was to develop simple/discrete resource materials that could be used across Canadian Pediatric Kidney Transplant Centers and would address common basic questions asked by pediatric patients and their families.
Methods: This effort was led by a subgroup of the Canadian Society of Transplant (CST) Pediatric Group. The initial step to development was organization of a committee that included key partners (patient / partners, parents, educational specialists and, industry members). An environmental scan and collection of materials from all Canadian pediatric transplant programs was undertaken. A high-level description of materials was completed in order to understand their depth and breadth. Next, we prioritized questions from clinicians and patients. For each question, we used a consensus process to agree on a single primary objective, key messages (max 5) and agreed facts that are represented in the information. We then developed a pamphlet-based resource that was made immediately accessible as they were completed. Literacy was focused at a grade 6 level, deemed suitable for all age ranges. Feedback from patient partners and parents was obtained and incorporated. These materials will be thereafter accessible to develop into diverse formats (e.g. infographics, patient-narrated videos) that have broader accessibility to different learning needs.
Results: Resource development is in progress and details of process challenges and completed resources will be reported in the poster, with examples provided.
Conclusion: We launched a process to develop a series of pan-Canadian pre-transplant education materials for pediatric transplant candidates and their families. Future work includes: 1) Expanding pamphlets to more diverse formats such as infographics, patient-narrated videos, mobile applications.
2) Language translation to French and other common use languages and,
3) Revision of content suitable for school-aged children, and a version for parents/caregivers/partners- (reflecting how they might support their transplant recipient).