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A scoping review of pediatric transplant education
Authors:Ashley Burghall  Michelle Ruhl  Nicola Rosaasen  Brianna Groot  Kayla Flood  Keefe Davis  Natasha Minakakis  Jenny Wichart  Holly Mansell
Affiliation:1. College of Pharmacy and Nutrition, University of Saskatchewan, Saskatoon, Saskatchewan, Canada;2. Division of Pediatric Nephrology, Department of Pediatrics, Jim Pattison Children's Hospital, University of Saskatchewan, Saskatoon, Saskatchewan, Canada;3. Saskatchewan Transplant Program, Saskatchewan Health Authority, Saskatoon, Saskatchewan, Canada

Canadian Donation and Transplantation Research Program, Canada;4. Patient and Family Advisor, Saskatoon, Saskatchewan, Canada;5. Canadian Donation and Transplantation Research Program, Canada

Department of Pharmacy, Alberta Health Services, Edmonton, Alberta, Canada

Abstract:

Background

Education is crucial for pediatric patients and caregivers throughout the transplant continuum, yet data are lacking around which interventions are effective and in what circumstances.

Methods

We undertook a scoping review with the objectives of (a) describing the types, effects, and outcomes of patient-focused educational interventions before and after pediatric transplant and (b) understanding the educational experiences of patients and caregivers. Five scientific databases were explored for relevant literature using the JBI methodology. Educational interventions published in English, targeting pediatric solid organ transplant patients (0–25 years) and their caregivers were included. Relevant data from eligible articles (n = 27) were extracted and summarized.

Results

Eighteen articles describing 17 educational interventions were identified for objective A, and nine articles qualitatively assessing patient or parental learning needs were identified for objective B. Most interventions were directed toward teenage patients and their caregivers post kidney transplant, primarily focusing on medication self-management and adherence, or providing general information on transplant using multicomponent delivery formats. Most interventions achieved statistically significant improvements in knowledge (n = 8/9) and patients or caregivers expressed satisfaction with the intervention (n = 7/7) but health-related outcomes such as medication adherence (n = 2/6) or behavior change (n = 1/3) rarely achieved statistically significant results. In objective B, patients and caregivers described the transplant process as overwhelming, but indicated that social supports and education helped them cope. Participants consistently wanted more information than they received.

Conclusion

Caregivers and pediatric patients value transplant education, but high-quality studies are limited. Since education is a fundamental part of the transplant process, future research in this area should be prioritized.
Keywords:caregivers  patient education  pediatrics  scoping review  solid organ transplantation  teaching
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