Listening on the Road to Change

About a year ago, I became a runner, embracing the safe and energizing escape from the screen. One day, I passed two men at work on a largely unpopulated stretch of road. I waved and smiled without breaking my pace. As I turned back to the street in front of me, I considered the stark racial contrasts of the experience. Ahmaud Arbery had been killed while jogging just a few months before. As the father to a young Black boy growing up in the United States, I was confronted by the difference between his life and mine. What would it take to make the road safe for my son?

The answer came a few weeks later as the protests of George Floyd’s murder filled the streets of America, and organizations I hadn’t heard from in years filled my inbox with their pledges of solidarity and their commitment to Black lives.

I found myself with mixed feelings. I was heartened to see more sustained attention given to rectifying the suffering of Black Americans – and from those that had previously been silent. On the other hand, I thought, “Where have all these people been?” Many of the emails listed only a fraction of the Black folks killed in America just in the decade since my first child was born.

I also worried about how to protect my children from the risks and stress of living while Black in this country, especially as someone who did not have the lived experience of such anxiety and trauma. I desperately wanted to see the world change in response to the demands of protestors and elected officials, yet I knew that change would take time. As I join others in bringing about that change and waiting for that change to come, I’ve also come to realize how important it is for me to spend time deeply listening to perspectives and experiences different from my own. Doing so serves as a compass for both better understanding and more thoughtful action in my life at home and at work.

Engaging Parent Voice in our Strategy

In my role at Einhorn Collaborative, I lead our Bonding strategy where we support programs designed to transform health care systems to focus more on establishing positive, resilient bonds and healthy relationships between babies and parents from birth. Yet, given the disparities that exist in the current health care system for families of color, I have been examining ways to better listen to and center the voices of parents whose lived experience includes that perspective in order to help shape the work we do in this space.

Through our prior partnership with the National Parent Leadership Institute (NPLI), I was already convinced of the importance of trained parent leaders helping to shape strategies, programs, and policies that affect families. NPLI was a valuable advisor when we collaborated with the National Institute for Children’s Health Quality (NICHQ) to launch our deeper exploration of the potential to support parent-child relationships in pediatric primary care. We hosted a two-day meeting to explore how to promote social and emotional development in pediatric well-child visits. That meeting included 30 to 40 traditional experts and about 20 to 25 lived-experience experts, including both mothers and fathers as well as grandparents who served as primary caretakers of young children. For months afterward, attendees would regularly mention how the presence of those lived-experience experts moved the conversation from an academic exercise towards practical reality-based solutions.

Having seen the benefits of engaging parent leaders, we incorporated them in the design of Pediatrics Supporting Parents (PSP), a funder collaborative launched in 2017 to reimagine pediatric well-child visits to include proven, scalable resources that empower and guide parents to sustain nurturing relationships with their children. For more than three years, we have been partnering with Family Voices, a national network of parent leaders, to collaborate with each of the PSP grantees, and to inform the overall strategy for the initiative.

A Case Study in Family Engagement

The Center for the Study of Social Policy (CSSP) partnered with Family Voices to identify core practices to adapt and embed in pediatric care to support parent-child relationships. Following their collaboration, CSSP published a case study that describes the core ways in which family leaders were engaged in the work over the course of several years. Family Voices had previously published A Framework for Assessing Family Engagement in Systems Change which identified four domains and corresponding key criteria to evaluate family engagement. By looking at PSP’s work with CSSP and Family Voices, we can identify examples of ways that funders and nonprofits can effectively engage families with diverse lived experiences.

PSP, and CSSP as our partner, demonstrated our commitment to family engagement by promoting it as a core value across all levels of the work. In the site visits to observe best practices for promoting social and emotional development, family leaders, along with pediatricians and CSSP staff, designed and participated in those visits. Similarly, parents are currently involved in other projects at PSP including the development process for a tech platform to support screening and family engagement in pediatric well visits, as well as financing work being done in nine states to change Medicaid and other public financing to support social and emotional development of young children. This work “on the ground” complements the work of a “Brain Trust”, an advisory group of diverse parents who engage with leadership of the initiative throughout the entire process. All of these efforts require adequate funding, including capacity building for our grantees to collaborate with parent leaders. Funders need to consider the resources required across all levels when we commit to authentic family engagement.

PSP’s core partners ensure that parents receive access to the relevant support and knowledge that enable them to participate fully and effectively. Think about it: In my role at the foundation, I have others at work as well as funder colleagues where I get to test my thinking and refine my ideas; when parent leaders have the space, time, and support to kick the tires on their ideas, we all benefit. Family Voices staff provide mentoring for the PSP parent leaders, so they are prepared and confident in their project role. CSSP shared with me how they have centered the family experience up front (often through a fishbowl or similar panel) to intentionally create a space that addresses power dynamics and facilitates dialogue on a level playing field. PSP partners strive to ensure that meeting materials are written so that all stakeholders can access and understand them. Parents are paid for their time, and meetings are held at convenient times for parents to participate.

We ensure that the families who are engaged represent the population being served by the initiative: parents of young children, particularly those who are in low-income communities and communities of color. Therefore, we targeted recruitment around those types of communities and for parents who still had a child under the age of 10.

While all of the above is vital, the engagement of parent leaders has been most successful in that we have integrated the first-hand knowledge and wisdom of parent leaders to improve policies and programs. Importantly, we also make sure that those who participate are made aware of how their engagement changed the course of the initiative. CSSP invited family leaders from the Brain Trust and site visit teams to participate and present at an in-person convening of stakeholders that served as the culmination of the site visit project and offered a forum for sharing the value and influence of their contributions. Publications that emerge from PSP projects cite the contributions of Family Voices and the family leaders.

The impact of the inclusion of family leaders in PSP is borne out by comments included in the case study from both parent leaders and staff.

One of the PSP family leaders said, “My experience with the Pediatric Supporting Parents initiative was unique and encouraging! I’m often asked to participate in community and state level “think tanks” to bring a parent perspective to the group. I typically share my story . . . provide feedback/constructive criticism . . . only to see the group move forward with little change. From day one of my involvement in this initiative, CSSP and Family Voices made it very clear that parent input was important and necessary for this project to succeed.”

Equally as important, the CSSP Project Director notes, “Without the parent leaders, we would have written a different report – one that left out critical opportunities to expand the way pediatrics can support the social and emotional development of young children.”