Pollard Noah, Christensen Leslie, Kloster Heidi, Gerber Danielle, Chödrön Gail
University of Wisconsin School of Medicine and Public Health, Madison, WI, United States.
Ebling Library for the Health Sciences, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States.
JMIR Res Protoc. 2025 Jul 11;14:e64911. doi: 10.2196/64911.
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.
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.
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.
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.
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.
让有实际生活经历的人参与医学教育，对他们自己、他们的照顾者以及医学生都有益处，而且可能对关于需要全面、个性化、多学科护理的儿童（包括那些患有复杂疾病或发育障碍的儿童）的医学教育产生特别影响。然而，目前尚无关于患有复杂疾病或发育障碍的儿童及其家庭或照顾者如何被纳入医学生、住院医师和研究员医学教育的综述。为了推动将实际生活经历有效纳入与这一患者群体相关的医学教育，需要对现有文献进行综合分析。
本范围综述旨在识别和综合有关将患有复杂疾病或发育障碍的儿童及其照顾者的实际生活经历纳入医学教育的文献，他们参与课程开发过程的哪些阶段，以及实际生活经历者在该过程中的参与程度。
为完成范围综述，检索了MEDLINE、Scopus、PsycINFO、ERIC、Academic Search Premier和Google Scholar，以查找调查患者和照顾者参与与患有复杂疾病或发育障碍儿童相关医学教育的研究。排除涉及继续职业发展或并非患有复杂疾病或发育障碍儿童的患者的研究。将提取数据，以根据克恩的六步方法确定纳入实际生活经历的课程开发阶段，并审查患有复杂疾病或发育障碍儿童、其家庭或照顾者在医学教育中的参与程度。范围综述的数据将以表格、图表或矩阵形式呈现，以展示照顾患有复杂疾病儿童或发育障碍儿童的实际生活经历如何被纳入课程开发的六个步骤，并描述实际生活经历者在这一过程中的参与程度。将进行描述性分析，以确定纳入文献中与研究目的相关的结果。
数据库检索于2024年4月19日完成。2024年7月，共识别出4382篇独特文章，并根据纳入标准进行筛选，最终有30篇文章被纳入范围综述。数据提取于2024年7月开始。
我们的结果将确定与患有复杂疾病或发育障碍儿童护理相关的医学教育的改进领域。研究结果将支持并有助于围绕患有复杂疾病儿童和发育障碍儿童护理的医学院课程开发，这些课程在课程开发过程中让有实际生活经历的人发挥关键作用。与有实际生活经历者的这些合作关系将培养出更多以患者和家庭为中心的医生，从而为患有复杂疾病儿童和发育障碍儿童提供更好的护理。
国际注册报告识别号（IRRID）：DERR1-10.2196/64911。
