Family Engagement in Systems Level Research for Children and Youth with Special Health Care Needs a Scoping Review

Family engagement is a priority for improving health care systems for children and youth with special health care needs (CYSHCN). The science of family engagement is evolving, and better understanding of the current state of research could promote improved implementation. This scoping review aimed to summarize the literature on family engagement in systems-level research for families of CYSHCN, specifically focusing on definitions/descriptions of engagement, engagement measurement, and whether and how measures correlated with outcomes.

This scoping review followed the JBI Manual for Evidence Synthesis and PRISMA-ScR guidelines. We searched MEDLINE, Embase, Web of Science and Cochrane CENTRAL, and ClinicalTrials.gov to identify studies involving family engagement in systems-level research for CYSHCN. Abstracts and selected articles were screened and family engagement-related data were extracted for included articles.

From 2123 unique articles, 403 received full text review, and 50 articles met the inclusion criteria. The number of included articles grew over time from 1 prior to 2000 to 27 after 2020. Family members, predominantly parents and caregivers, were involved in various research roles, with most studies having families involved in many aspects of the project. Specific roles included participation in study design, intervention delivery, implementation, and dissemination. Few studies (3) used formal measures of engagement limiting our ability to describe how engagement changed systems of care.

Descriptions of family engagement are varied and very few studies use measures of engagement. As the literature grows, future studies should focus on standardized and transparent reporting about engagement, including using tools to measure engagement. This review was registered on Open Science Forum at https://doi.org/10.17605/OSF.IO/Q6CN3.