» What is Family Engagement?
Family engagement is an authentic partnership between professionals and family leaders who reflect the diversity of the communities they represent, working together at the systems level to develop and implement better policies and practices.1
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deeply affected by systems-level issues, such as care fragmentation, which are often a direct result of ineffective or outdated health care policies and practices2 Families’ lived experiences make them uniquely qualified to partner in shaping systems-level policies that can improve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.3,4,5,6,7
» Four Domains of Family Engagement in Systems1
- Reflect the diversity of the community (race, ethnicity, language, income, education level, and geography)
- Partner with family-led and community-based organizations
- Provide access to relevant knowledge
- Practice partnership in all parts of the process
- Identify what has changed and what the organization or system of care is doing differently because families were involved
- Promote engagement as a core value
- Establish engagement at all levels, in all systems of care
Learn more about Family Engagement from the following brief written by Family Voices: A Framework for Assessing Family Engagement in Systems Change
- Hoover C, Paladino MJ, Dworetzky B, Wells N. A Framework for Assessing Family Engagement in Systems Change. Issue Brief. Lucile Packard Foundation for Children’s Health. April 2018.
- Institute of Medicine (US); Stoto MA, Behrens R, Rosemont C, editors. Healthy People 2000: Citizens Chart the Course. Washington (DC): National Academies Press (US); 1990. 7, People with Disabilities. Available from: https://www.ncbi.nlm.nih.gov/books/NBK235783/
- Funchess, M, Spencer, S, & Niarhos, M. (2014). The Evolution: Family-Driven Care as a Practice. National Federation of Families for Children’s Mental Health: Rockville, MD.
- Howrey, BT, Thompson, BL, Borkan, J, Kennedy, LB, Hughes, LS, Johnson, BH, … & Degruy, F. (2015). Partnering with patients, families, and communities. Fam Med, 47(8), 604-11.
- Health Research & Educational Trust. (2015). Partnering to improve quality and safety: A framework for working with patient and family advisors. Chicago, IL: Health Research & Educational Trust. Accessed at www.hpoe.org on January 30, 2017.
- Kuhlthau, KA, Bloom, S, Van Cleave, J, Knapp, AA, Romm, D, Klatka, K, … & Perrin, JM. (2011). Evidence for family-centered care for children with special healthcare needs: a systematic review. Academic pediatrics, 11(2), 136-143.
- Reynolds, MC, Birzer, M, St John, J, Wells, N, Anderson, B, & Walker, DK. (2015). Family Leaders and Workforce Leadership Development. Maternal and child health journal, 19(2), 252.