Association for Public Policy Analysis & Management

Integrating patient voice is a core principle of the patient-centered medical home model and accountable care organizations (Berwick, Nolan, & Whittington, 2008; Ferrante, Balasubramanian, Hudson, & Crabtree, 2010; Fisher, Staiger, Bynum, & Gottlieb, 2007; Luxford, Safran, & Delbanco, 2011). In pediatric settings, parents or caregivers serve as the primary advocates for services and clinical decision-making about their young children, complicating the conceptualization of patient voice (Committee on Hospital Care, Institute for Patient- and Family-Centered Care, 2012). Existing research suggests that the execution of this core principle is often confounded by contextual variables on the part of both pediatric providers and caregivers (Carman, Dardess, Maurer, Sofaer et al., 2013; Latta, Dick, Parry, & Tamura, 2008; Ocloo & Matthews, 2016). There also has been limited empirical attention to culturally responsive strategies for leveraging the diverse perspectives and experiences of low-income families, families of color, and immigrant families to inform innovations in pediatric care to ensure diverse needs are adequately met (DeCamp, Leifheit, Shah, Valenzuela-Araujo et al., 2016; Joseph, 2017) and to promote protective factors (c.f., Sege, Kaplan-Sanof, Morton, Velasco-Hodgson et al., 2014). Addressing this gap in knowledge is particularly important to promoting greater inclusivity and stronger caregiver connections to the medical home.

This paper presents mixed-methods findings examining the integration of caregiver voice into pediatric healthcare services for infants during a policy moment where providers are being encouraged to discuss social determinants of health with families (Garg & Dworkin, 2016). We draw from data collected in 2018-19 as part of a larger mixed-methods study involving ten pediatric health clinics across the U.S. The study examines two pediatric healthcare innovations designed to prevent and mitigate toxic stress experienced by young children. Both healthcare innovations focus on enhancing pediatric practices to screen and provide supports centered on social determinants of health. Study data were collected in partnership with clinics in five communities in California, Florida, and Vermont. Data sources include fourteen focus groups with caregivers of young children (N = 105), clinic staff interviews (N = 51), and longitudinal assessment of predominantly Latinx families receiving care for their newborns with a battery of standardized measures of healthcare engagement (N = 741).

Based on the results of family focus groups and clinic staff interviews, the paper identifies facilitators and barriers to screening, referral, and linkage for social determinants of health in pediatric clinics (e.g., universal screening, explicit discussion of the goals of screening, rapport-building and administration by a near-peer staff member, implementation of linkage practices to support referral uptake). Survey results highlight parent perspectives about their inclusion in healthcare decision-making as well as their willingness to access systems of support in their communities. The paper explores how the integration of family voice into well-child visits and clinic flow can strengthen family-centered care at a population health level. The paper concludes by highlighting promising strategies to leverage family perspectives to inform clinic-based efforts promoting child well-being and scale up efforts to increase caregiver representation in healthcare from diverse and underrepresented populations.