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From Patients to Partners: Promoting Health Equity in Pediatric Primary Care With the HealthySteps Program
Diane Lee, University of Colorado School of Medicine; Verenea Serrano and Jonna von Schulz, University of Colorado School of Medicine Children’s Hospital Colorado; Devin Fields, Children’s Hospital Colorado; and Melissa Buchholz, University of Colorado School of Medicine Children’s Hospital Colorado
In this resource
Pediatric complex care clinics offer an optimal environment for integrated behavioral health services for infants and young children with medical complexity (CMC). Integrated behavioral health providers are well positioned to provide accessible care and promote development and well-being for this population with unique psychosocial needs and stressors. Furthermore, given the long-standing racial and ethnic disparities in the health care system, integrated behavioral health providers must confront and combat these disparities and the impact of racial injustice and trauma on the health of infants, young children, and families. This article describes a family and their infant who were seen by an early childhood integrated behavioral health provider (HealthySteps specialist) in a complex pediatric primary care clinic and the realities of systemic racism that the family faced as they navigated their infant’s medical care. This example highlights the application and adaptation of the HealthySteps program in a complex pediatric primary care clinic and ways to support and partner with families and providers to combat systemic racism and promote health equity.
Health disparities for people of color are well documented. Research indicates that within the health care system, Black and Latinx patients experience poorer quality of care over the lifespan (Stevens & Shi, 2002), have less access to resources (Koschmann & Hooke, 2019), face more barriers in seeking services (Lescano & Rahill, 2018), and have lower strength of affiliation with providers (Stevens & Shi, 2002). These disparities significantly impact health outcomes for people of color. Rates of preterm birth, low birthweight, and infant mortality for Black infants are more than twice that of White infants (Keating et al., 2020). Further, maternal mortality is 3 times higher for Black women, and Black and Latinx women are significantly more likely to experience chronic health conditions associated with birth-related complications compared to White women. This trend has persisted over decades, indicating a long history of a biased system of care for families of color (Rossen & Schoendorf, 2014). In the neonatal intensive care unit (NICU), Black babies have higher rates of chronic lung disease and pneumothorax but lower rates of breastfeeding before discharge when compared to White peers (Profit et al., 2017). Overall, children of color have significantly higher rates of morbidity and mortality related to poor maternal, prenatal, and early childhood health as well as chronic and congenital diseases (Lescano & Rahill, 2018). These results show that families of color experience health disparities at many levels of care and that these disparities influence both health outcomes and medical complexity.
There are ways to address these disparities and provide equitable care to families most in need. Several protective and buffering factors against the overwhelmingly negative effects of health disparities for people of color have been identified within pediatric primary care. For example, effective and supportive communication between family and provider can be a protective factor for families. Specifically for Black families, measures of trust increased when providers used communication styles focused on building partnerships and families were able to see the same provider over time (Horn et al., 2012). As trust increased, so did parent satisfaction and likelihood of adhering to prescribed treatment recommendations (Nobile & Drotar, 2003).
These findings have important implications for how providers can mitigate health disparities by providing care that prioritizes interpersonal connection and continuity. Specifically in early childhood, pediatric primary care settings are essential to supporting families with young children in a universal, culturally responsive, accessible, and non-stigmatized care model (Stille et al., 2010). Primary care settings that approach care through a relationship-based and collaborative lens will likely be most successful in mitigating health disparities.
HealthySteps, a program of ZERO TO THREE, is an evidence-based, interdisciplinary approach to providing enhanced primary care to children birth through 3 years old. HealthySteps integrates behavioral health specialists with expertise in child development and infant mental health into pediatric primary care settings to increase health, well-being, and school readiness for children and families (healthysteps.org). When compared to controls, HealthySteps families reported higher satisfaction with care, received more developmentally appropriate care and preventative services, had timelier well-child and immunization visits, and used less physical discipline techniques (Minkovitz et al., 2003). Given these outcomes, clinics implementing HealthySteps are well-suited to promote positive health outcomes in communities of color and mitigate the negative impacts of health disparities.
HealthySteps is implemented in nearly 180 primary care clinics nationally. One of these sites is unique because it serves children with medical complexity (CMC). This complex pediatric primary care clinic serves approximately 5,000 CMC and their families. Caregivers of CMC are at risk for increased stress and mood symptoms related to caring for a CMC (Cohn et al., 2020; Cousino & Hazen, 2013). Therefore, in this clinic, HealthySteps modifications have been made to support young CMC and their families. Modifications have focused on supporting caregivers with adjustment to illness, caregiver role and family changes, using positive and reflective parenting strategies in the context of the child’s medical needs, and understanding and coping with developmental and behavioral differences that are common in CMC. Modifications have also included screening and support for symptoms of medical trauma, adapting and creating additional materials for caregivers specific to caring for a young CMC, and universally offering HealthySteps to account for the likelihood of increased caregiver stress and trauma symptoms in the context of the child’s complex medical needs. While these additional stressors for families caring for CMC are regularly considered and acknowledged by providers, issues of systemic racism and injustice both in the community and within the medical system are not. Given that families of color with a CMC have increased frequency of interactions and experiences within the health care setting, it becomes vital to consider racial and ethnic health disparities. Within the primary care setting, HealthySteps provides an opportunity to form relationships with families at the start of their medical care, thereby cultivating a partnership and creating spaces where experiences of medical and racial trauma and disparity can be shared, discussed, and addressed over time.