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 learner level of training. 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 or developmental disabilities. Despite this, there is no summary of how children with medical complexities or developmental disabilities or their families/caregivers have been included in medical education for medical students, residents, and fellows. In order 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 children with medical complexity or developmental disabilities, their families, and their caregivers in medical education and the level of engagement of people with lived experience in the process.

Methods:

To complete the proposed scoping review, MEDLINE, Scopus, PsycINFO, ERIC, Academic Search Premier, and Google Scholar will be searched for studies investigating patient and caregiver involvement in medical education related to children with medical complexity or developmental disabilities. Data will be extracted from studies that meet the inclusion criteria. Studies involving continuing professional development or patients that are not children with medical complexity or developmental disabilities will be 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. Data will also be extracted to examine the level of engagement in medical education of children with medical complexity or developmental disabilities, their families, or their caregivers.

Results:

Descriptive analysis will be performed to identify the findings from the included sources pertaining to the research objective. Findings will be presented in tables, diagrams, or matrices to demonstrate how lived experience has been incorporated into the six steps of curriculum development and characterize the level of engagement of people with lived experience in this process.

Conclusions:

Results from this scoping review may identify areas of improvement for medical education, especially pertaining to the care of children with medical complexity and developmental disabilities. The findings could contribute to the development of medical school curricula that lead to improved patient outcomes.