Development process for pediatric kidney transplant education targeted at kidney transplant candidates and their family members across Canada
Julie Strong1, Valerie Langlois3, Lorraine Hamiwka4, Chia Wei Teoh5, Michelle Ruhl6, Aviva Goldberg7, Elizabeth Dale5, Holly Mansell8, Astrid De Souza9, Tom D. Blydt-Hansen2, Jenny Wichart10, Manuel Escoto11, Corinne Johnson12.
1Transplant Manitoba-Pediatric Kidney Program, Winnipeg Children's Hospital, Winnipeg, MB, Canada; 2 Multi-organ Transplant Program, BC Children's Hospital, Vancouver, BC, Canada; 3Division of Pediatric Nephrology, The Montreal Children's Hospital, Montreal, QC, Canada; 4Pediatric Nephrology , Alberta Children's Hospital, Calgary, AB, Canada; 5Pediatric Nephrology, The Hospital for Sick Children, Toronto, ON, Canada; 6Pediatric Transplant and Nephrology, Jim Pattison Children's Hospital, Saskatoon, SK, Canada; 7Department of Pediatrics & Child Health Nephrology, Winnipeg Children's Hospital, Winnipeg, MB, Canada; 8College of Pharmacy and Nutrition, University of Saskatchewan, Saskatoon, SK, Canada; 9ACSM Clinical Exercise Physiologist, Children's Heart Centre, BC Children's Hospital, Vancouver, BC, Canada; 10Pharmacy Clinical Practice Leader, Nephrology and Ambulatory Pediatrics Alberta Health Services, Alberta Children’s Hospital, Calgary, AB, Canada; 11Patient, Family, Donor Partnerships & Education Manager, Canadian Donation and Transplantation Research Program, Edmonton, AB, Canada; 12Special education Canada, Learning Support/Grade 8 FI teachers Interlake School Division, Winnipeg, MB, Canada
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).
