Issue Brief: A Framework for Assessing Family Engagement in Systems Change
Families of children and youth with special health care needs (CYSHCN) have unique perspectives about the complexities of systems of care because they are involved with so many aspects of these systems. As their children’s primary caregivers, families are deeply affected by systems-level issues, such as care fragmentation, which are often a direct result of ineffective or outdated health care policies and practices. Families’ lived experiences make them uniquely qualified to partner in shaping systems-level policies that can improve systems of care for all children, especially CYSHCN. To explore strategies for ensuring, enhancing, and supporting the meaningful engagement of families at the systems level of health care, Family Voices conducted an environmental scan of existing literature and a series of key informant interviews with family leaders and professionals. This issue brief summarizes what was learned from these activities, describing barriers to effective family engagement and identifying four domains and corresponding key criteria that provide a framework for considering how well organizations and agencies are engaging families.
Based on a qualitative analysis of key informant interview responses, Family Voices identified four domains that are important for promoting and ensuring meaningful and sustainable family engagement at the systems level. Each domain – representation, transparency, impact, and commitment – includes proposed key criteria to help organizations support and enhance family engagement activities at the systems level. Organizations can use these criteria as an initial checklist or rephrase the criteria as questions to use in a self-assessment.
Four Domains of Family Engagement in Systems
- Representation: Reflect the diversity of the community; partner with family-led and community-based organizations.
- Transparency: Provide access to relevant knowledge; practice partnership in all parts of the process.
- Impact: Identify what has changed and what the organization or system of care is doing differently because families were involved.
- Commitment: Promote engagement as a core value; establish engagement at all levels, in all systems of care.