Measuring Family Engagement

Across health, education, and social services, families and professionals agree that meaningful and effective family engagement is essential to quality and effectiveness. Family engagement is a multidimensional, dynamic, relational process that is foundational to positive outcomes and well-being. Key elements of family engagement are active partnerships and joint decision making at various levels across the health care system—direct care, organizational design and governance, and policy making.

The Maternal and Child Health Bureau (MCHB-HRSA-HHS) has long been committed to family-centered care and measurement of family engagement. Patient/family-centered care has been emphasized by the Institute of Medicine reports on health care quality and the Affordable Care Act, as well as home visiting, early care and education, Medicaid, and other programs. In a rapidly changing U.S. health care system, better measurement approaches for family engagement and family-centered care for MCH populations are needed.

The MCH-MRN has a Technical Working Group (TWG) focused on measurement of family engagement and family-centered care, which is currently focused on supporting the efforts of Family Voices to develop and test a new Family Engagement Systems Assessment Tool (FESAT) . K ey steps entailed in Family Voices’ work include: development, pilot testing, validation, and other relevant measurement research steps. CAHMI is supporting this work by leveraging the CAHMI measurement development framework and processes . Once completed, Family Voices will disseminate the FESAT and an accompanying toolkit to state Title V MCH Programs, state Medicaid agencies, professional organizations, hospitals and other health providers, health systems, and families. This MCH-MRN TWG also gives priority to more effective use of existing data and enhanced measurement of family engagement in existing MCH data collection (e.g., NSCH, Title V national outcome and performance measure s-NOM/NPM).

On December 10, 2018, as part of the MCHB-HRSA-HHS Engaging Research Innovations and Challenges (EnRICH) series, CAHMI Director Dr. Christina Bethell participated in a webinar focused on measuring family engagement. For this webinar, Dr. Bethell joined Clarissa Hoover , MPH —a Project Director at Family Voices, advocate for families, and leader in family-centered care at the University of New Mexico Hospital and Health Sciences — for a discussion that highlighted the central role of family engagement at all levels and both the challenges and opportunities for measurement in this area. Trusting relationships, family–centered approaches, and active engagement are key factors that need measurement approaches. 

Dr. Bethell’s presentation provided an overview on defining and measuring family engagement, summarized existing measures available through the MCH-MRN Online Compendium, and described key measurement gaps related to family engagement. For example, over the years, data from the National Survey of Child Health (NSCH) and National Survey of Children with Special Health Care Needs (NS-CSHCN) have pointed to variations across states, settings, and by child and family needs in aspects of family-centered care such as parents feeling like partners, doctors providing needed information, providers making it easy for parents to raise concerns, and providers working with parents to decide on best care and treatment choices. Yet, having data on these factors has not led to measurable improvements in family engagement.

Ms. Hoover presented more details on development of the FESAT, including its framework and four domains for meaningful and sustainable family engagement, which are: commitment, transparency, representation, and impact. She discussed how these efforts focus on family engagement as a strategy for improving health care quality, patient safety, patient/family satisfaction, costs, and outcomes.

If you were unable to attend the webinar, the recording will be available in the near future at: https://mchb.hrsa.gov/research/media-webinar.asp .