Integrating Lived Experience Into Medical Education Related to Children With Medical Complexity or Developmental Disabilities: Protocol for a Scoping Review.

Abstract

Background: Involving people with lived experience in medical education can benefit them, their caregivers, and medical students, and may particularly impact medical education about children requiring comprehensive, individualized, multidisciplinary care, including those with medical complexity or developmental disabilities. Yet, there is no summary of how children with medical complexity or developmental disabilities, or their families or caregivers have been included in medical education for medical students, residents, and fellows. To advance the effective inclusion of lived experience in medical education related to this patient population, a synthesis of existing literature is needed.

Objective: This scoping review aims to identify and synthesize the literature on including the lived experiences of children with medical complexity or developmental disabilities and their caregivers in medical education, where in the curricular development process they are involved, and the level of engagement of people with lived experience in the process.

Methods: To complete the scoping review, MEDLINE, Scopus, PsycINFO, ERIC, Academic Search Premier, and Google Scholar were searched for studies investigating patient and caregiver involvement in medical education related to children with medical complexity or developmental disabilities. Studies involving continuing professional development or patients who are not children with medical complexity or developmental disabilities were excluded. Data will be extracted to identify the stage of curriculum development in which lived experience is included based on Kern's 6-step approach, and to examine the level of engagement in medical education of children with medical complexity or developmental disabilities, their families, or their caregivers. Data from the scoping review will be presented in tables, diagrams, or matrices to demonstrate how lived experience caring for children with medical complexity or children with developmental disabilities has been included in the 6 steps of curriculum development and to characterize the level of engagement of people with lived experience in this process. Descriptive analysis will be performed to identify the findings from the included sources pertaining to the research objective.

Results: Database searches were completed on April 19, 2024. In total, 4382 unique articles were identified and screened against the eligibility criteria in July 2024, resulting in 30 articles being included in the scoping review. Data extraction began in July 2024.

Conclusions: Our results will identify areas of improvement for medical education pertaining to the care of children with medical complexity or developmental disabilities. The findings will support and contribute to the development of medical school curricula surrounding care for children with medical complexity and children with developmental disabilities that incorporate people with lived experience in crucial roles during curriculum development. These partnerships with people with lived experience will promote more patient- and family-centered physicians, leading to better care of children with medical complexity and children with developmental disabilities.

International registered report identifier (irrid): DERR1-10.2196/64911.