Family engagement in health care has long been a focus for improving systems of care, particularly for children and youth with special health care needs (CYSHCN), who represent 20 to 25 percent of U.S. children.
Engaging families in systems level health research and decision-making is critical to improving care and policies. Systems level work considers the constellation and delivery of health care. We conducted a scoping review of the literature on family engagement in systems-level research for families of CYSHCN, specifically focusing on the definition/description, measurement, and how engagement changed outcomes.
METHODS
- We conducted a scoping review to determine what tools exist to measure family engagement (FE) in health systems for children and youth with special health care needs and how these measures correlate with other quality of life outcomes.
- The scoping review process explored the following questions:
- How has family engagement been defined (what activities constitute engagement) and subsequently measured in the literature?
In what ways do measures of family engagement predict or correlate with other health system outcomes?
IMPLICATIONS
- Patient and family engagement is gaining traction in healthcare as a means of improving care and patient outcomes.
- Our project focuses on organizational design/governance and policy making at the involvement and partnership levels.
- While an increasing number of papers over time fit our criteria, there is a variety in how family engagement is described in papers, and very few papers use measurement tools.
Families have been meaningfully engaged as co-authors, acknowledged contributors, and appear in roles that advise/impact the whole project, but little is known about the characteristics of the engaged families.
Search Strategy
With a medical librarian, we developed a search strategy that expanded terms in the following categories:
- Chronic disease and special healthcare needs
- Children/pediatric population
- Engagement and collaboration of families, caregivers, etc.
- Systems and networks
We searched Ovid MEDLINE, Embase.com, Web of Science, Cochrane Central Register of Controlled Trials (CENTRAL) via Ovid, and ClinicalTrials.gov.
- We used inclusion and exclusion criteria to refine our search (Pediatric, CYSHCN including specific conditions, family engagement, systems).
- We reviewed references of all articles included in data extraction, which yielded an additional 78 articles. This step helped us ensure thoroughness, especially given the unstandardized nature of reporting in this literature.
TIMELINE
The search was originally executed April 2023 and re-executed in December 2023 to collect any more recent publications.
- Initial Searches (April + December) yielded 2046 articles, 2045 after duplicates were removed.
In progress
- Grey literature search not done due to resource limitations
- Data Extraction
- Articles identified through these processes will work through the process starting at title and abstract level.
- Challenges – engagement not universally reported or described.
PRODUCTS TO DATE
A paper has been published in Academic Pediatrics.
The FE workgroup will propose measures adaptations, if needed, to optimize their value and use. The workgroup may engage in crowdsourcing methods if more input from lived experience partners is needed to refine and understand the meaning of FE.
IMPACT
- Our definition of engagement required active involvement of a family member in the design, implementation, analysis and/or dissemination of the work, with reciprocal relationships between the individual engaged and the researchers.
- Our goal is to compile data about family engagement definitions and processes throughout the literature.
This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UA6MC31101 Children with Special Health Care Needs Research Network. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.