JMIR Publications

ABSTRACT

Background:

Involving people with lived experience (PLE) in medical education, which may occur with varying levels of patient and caregiver involvement, can be beneficial for patients, their caregivers, and medical students. Benefits have been demonstrated across both patient populations and learners. Including PLE may be particularly impactful in medical education related to children who require comprehensive, individualized, and multidisciplinary care, such as children with medical complexity (CMC) or children with developmental disabilities (CDD). Despite this, there is no summary of how CMC, CDD, or their families/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:

The purpose of this scoping review is to identify and synthesize the literature related to including the lived experiences of CMC or CDD, their families, and their caregivers in medical education; where in the curricular development process they are involved; and the level of engagement of PLE 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 CMC or CDD. Studies involving continuing professional development (CPD) or patients that are not CMC or CDD were excluded. Data will be extracted from studies that meet the inclusion criteria to identify the stage of curriculum development in which lived experience is included based on Kern’s 6-step approach. Data will also be extracted to examine the level of engagement in medical education of CMC or CDD, 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 CMC or CDD has been included in the six steps of curriculum development and to characterize the level of engagement of PLE in this process. Descriptive analysis will be performed to identify the findings from the included sources pertaining to the research objective.

Results:

The database searches were completed in April of 2024. 4382 unique articles were identified and screened against the inclusion and exclusion criteria. Screening was completed in July of 2024, resulting in 30 articles being included in the scoping review. Data extraction began in July of 2024.

Conclusions:

Results from this scoping review will identify areas of improvement for medical education pertaining to the care of CMC and CDD. The findings will support and contribute to the development of medical school curricula surrounding care for CMC and CDD that incorporate PLE in crucial roles during curriculum development. This PLE partnership will promote more patient- and family-centered physicians, leading to better care of CMC and CDD.