By Pooja Deshpande, MPH Student in Maternal, Child, and Family Health, University of North Carolina Gillings School of Global Public Health

Editing support from Dr. Bethany Geldmaker (Virginia Department of Health), Dana Yarbrough (Virginia Commonwealth University, Center for Family Involvement), and Ashley Zuniga (Undergraduate Student at East Carolina University).

“Define and develop recommendations for equitable family engagement across Virginia’s Title V programs and partner agencies.”

This was the goal of the Title V Maternal and Child Health (MCH) summer internship project that Ashley and I were tasked to achieve in 10 short weeks. We began by exploring how Virginia’s Title V programs prioritize family engagement and found programs that considered equitable family engagement foundational to their work and piloted essential tools, such as the Family Voices checklist. As our research progressed, it became clear that the MCH field must emphasize the family voice in all aspects of care and community. It was also important for us to learn more directly from families with children and youth with special health care needs as well as from experts and providers at the national and state level who are invested and experienced in equitable family engagement.

Our Process and Findings from Focus Groups and Interviews

We conducted interviews and focus groups with 10 professionals who represented the American Academy of Pediatrics, the Association of Maternal & Child Health Programs, and Virginia Title V program staff. Among the professional group, we included a family practitioner. Focus groups were also held with 12 parents who are connected to Virginia’s Family to Family Health Information Center. The questions focused on the following topics:

• How do you see programs working toward achieving equitable family engagement?
• What are some barriers and successes that you experience in your programs?

Because we obtained input from three distinct groups of people, we anticipated that they would differ in the responses they have about their experiences with family engagement and the value they place on family voice. Conversely, the different groups reported common themes when talking about the barriers that they have experienced when trying to prioritize family voice. Some caregivers spoke about the desire to be given time to be heard by providers, and some providers spoke about the desire to give more time to families and the structural challenges associated with doing so. All three groups mentioned awareness of health care access barriers, gaps in communication between providers and families, and barriers to emphasizing the value of the family voice. All groups also expressed their understanding of the importance of prioritizing family voice and discussed efforts that they were undertaking to emphasize family voice, both individually and as part of an organization.

When asked what equitable family engagement means to them, parents told us, “it’s about making sure that my voice is heard” and “the best experiences we’ve had are when people respect the fact that we need…more help just to get to a level playing field.” Parents remarked that they had never been asked directly about their experiences with family engagement, although knowledge about the family experience is clearly important.

Professionals at the state and national level referenced upholding a motto “nothing about us, without us” in mind as they worked toward achieving family engagement. These professionals recognized “how important it is to have [the input and feedback from] families from the community that you’re serving as part of the work that you’re doing from the beginning.” It became clear to us that family engagement was valued by all professionals and caregivers that we spoke to.

Recommendations

The interviews and focus groups yielded the following recommendations to support Virginia Title V programs and effectively center family engagement:

• Draft a definition of equitable family engagement and the framework for achieving it
• Identify evidence-based strategies to increase the family voice
• Address implicit bias
• Develop state contract language and performance measures for family engagement.

Our definition of equitable family engagement is as follows:

Equitable engagement with families can be best summed up by the motto, “nothing about us, without us,” which honors family wisdom and experiences by centering the family voice in all aspects of care and community. This requires that the family’s perspective is included from the onset at all levels of care systems through shared responsibility and decision-making. And, that we adjust our approach based on each family’s experiences and needs. It is essential that families are treated in the same manner, regardless of available resources, socioeconomic status, race, ethnicity and all other factors. Equitably engaging with families requires communicating through the preferred information channels of the family, connecting families to other families for support, and fostering a trusting relationship that provides families with every opportunity to voice their thoughts and concerns and make their own decisions.

Conclusion

We continue to work with the Virginia Family to Family Health Information Center and the  Department of Health and plan to pilot-test a measurement tool for family engagement with local health districts and Title V funding recipients. Becoming aware of the need to increase family engagement is the first step, and everyone we spoke to is ready to act (if they aren’t acting already). As future leaders in public health, we will continue asking questions that have not been asked before. We learned the value of emphasizing equitable family engagement and voice, and we developed the knowledge, skills, and language to emphasize the importance of this engagement and advocate for it in our work going forward. We saw firsthand that centering the family voice has system-wide impacts and benefits in bringing professionals, providers, and families together. “Nothing about us, without us” is a motto that will guide us as we continue our public health journey.