Transforming Well-Child Care to Meet the Needs of Families at the Intersection of Racism and Poverty

Abstract

Racism and poverty are intertwined throughout American society as a result of historic and current systemic oppression based on class and race. As the processes of pediatric preventive care, or well-child care, have evolved to better acknowledge and address health disparities due to racism and poverty, the structures of care have remained mostly stagnant. To cultivate long-term health and wellness of Black and Brown children, we must adopt an explicitly antiracist structure for well-child care. The pediatric medical home model is touted as the gold standard for addressing a host of health, developmental, and social needs for children and their families. However, the medical home model has not resulted in more equitable care for Black and Brown families living in poverty; there are ample data to demonstrate that these families often do not receive care that aligns with the principles of the medical home. This inequity may be most salient in the context of well-child care, as our preventive care services in pediatrics have the potential to impact population health. To appropriately address the vast array of preventive care needs of families living at the intersection of racism and poverty, a structural redesign of preventive care in the pediatric medical home is needed. In this paper, we propose a re-imagined framework for the structure of well-child care, with a focus on care for children in families living at the intersection of racism and poverty. This framework includes a team-based approach to care in which families build trusting primary care relationships with providers, as well as nonclinical members of a care team who have shared lived experiences with the community being served, and relies on primary care connections with community organizations that support the preventive health, social health, and emotional health needs of families of young children. Without a structural redesign of preventive care in the pediatric medical home, stand-alone revisions or expansions to processes of care cannot appropriately address the effects of racism and poverty on child preventive health outcomes.

The pediatric medical home provides a clear path for primary care to fully address health, developmental, and social needs for children and their families.¹ However, ample data demonstrate that compared with white children, Black and Brown children are less likely to report receiving family-centered care, identify a usual source of care, and are more likely to have unmet needs.² This inequity in the receipt of high-quality pediatric primary care may be most concerning in the context of well-child care, as child preventive care has the potential to impact population health throughout the life course.³ To appropriately address the array of preventive needs of families living at the intersection of racism and poverty, a structural redesign of preventive care is needed. Here, we propose an adapted framework for the structure of well-child care, with a focus on care for children in families living at the intersection of racism and poverty. In contrast with our current structure of well-child care delivery, this framework is an antiracist one, using a community-based, team-based approach to care in which families build trusting primary care relationships with providers, as well as nonclinical members of the well-child care team who have share lived experiences with the community being served, and relies on primary care connections with community-based organizations that support the preventive, social, and emotional health needs of families of young children.

The AAP published its first guidelines for child preventive care in 1967⁴; at that time, a Black child in the United States faced threat to health and well-being from inequitable access to health, education, and housing. Despite progress made in child preventive care within the medical home, this is still true today in 2021.⁵ This historical context provides the backdrop to help us understand that our structure of well-child care was not built with antiracism as a goal. Despite the achievements of the medical home in improving care, the benefits of the medical home have not been equitable; across multiple studies, Black, Latinx, and children living in poverty, do not receive the key elements of the medical home to the same extent that their white, wealthier counterparts do, even when receiving their care within a medical home.² This inequitable distribution of the benefits of the medical home that favors white children and puts Black and Latinx children at a disadvantage is rooted in structural racism. Structural Racism is the overarching system of racial bias across institutions and society.⁶ These systems give privilege to white people, resulting in disadvantages to people of color. As the processes of pediatric preventive care have evolved to better acknowledge and address health disparities due to racism and poverty, the structures of well-child care, rooted in structural racism, have remained mostly stagnant. By not fully recognizing the contribution that individual, interpersonal, and institutional racism has on the inequities in health outcomes for Black and Brown children and families, we designed our system of well-child care to be structured in a way that does not actively work to eradicate systems of care that have racist outcomes for health and well-being.⁷ As an example, our current structure of well-child care relies on, and exclusively pays for, high-level clinicians to provide preventive care, including screening and community resource referral for social determinants of health, maternal mental health, and early childhood developmental concerns. However, there is ample evidence that the structure of well-child care is advantageous to white children, who due to historical societal structures are more likely to live in households with lower rates of social needs and in more developmentally-advantaged environments.⁸ Conversely, for Black and Brown children, who, due to structural racism, are more likely to live in low-resource households and communities, with greater social needs, higher rates of maternal stress and depression, and in developmentally-disadvantaged environments, there is ample evidence that our structure of well-child care leads to unaddressed social needs, unmet maternal mental health needs, and wide racial gaps in developmental outcomes.^9,10 To cultivate long-term health and wellness of Black and Brown children, an antiracist structure for well-child care must be intentionally designed to mitigate the impacts that systemic and interpersonal racism can have on preventive care delivery. To do this, we must utilize structures that actively facilitate culturally-responsive care for families and appropriately address their preventive care needs.¹

Reconceptualizing Pediatric Preventive Care Within the Medical Home

Donabedian’s Quality Framework¹¹ illustrates that health outcomes are determined by the structure and process of care. Three components, structure, process, and outcome, are linked and critical in measuring the quality of care. Structures of care include 1) personnel, 2) facilities, 3) organization, 4) information systems, and 5) financing. Starfield,¹² building on this framework, demonstrates in the Dynamics of Health Outcome Framework, how the structures and processes of care affect health outcomes by describing key factors that make up the process of care, organized into 2 components, 1) provision of care, and 2) receipt of care. Together, these linked frameworks provide important insight into why efforts to deliver preventive care using our current process, continue to fall short in creating population-level improvement in health outcomes for Black and Brown children living in poverty. We have used Donabedian’s Framework, expanded by Starfield, to conceptualize the structure, process, and outcomes in well-child care for children living at the intersection of racism and poverty (Figure). Below, we describe the adapted framework, and provide exemplars from the literature for each key element of the framework.

Figure.

An adapted* framework for well-child care to achieve optimal preventive care outcomes for infants and young children at the intersection of racism and poverty. (Adapted from Donabedian 1966, and Starfield 1973.)

What Structure Do We Need to Support the Processes of Preventive Care?

These structural elements include a preventive care team that is inclusive of individuals with shared lived experiences with families, and strong community connections with primary care providers that engender trust and lead to improved access and utilization of services.

Personnel

Transforming the personnel structure of well-child care to a team-based approach is imperative to ensure the provision of care is done from an antiracist perspective. Clinician uncertainty in addressing social complexities,¹³ coupled with parents reporting a lack of family-centered, culturally-responsive care, results in missed opportunities to intervene at critical developmental periods for Black and Brown children living in poverty.^14,15 Proposals to improve well-child care delivery have included structural changes to personnel, namely incorporating nonclinicians, such as navigators, coaches, or health educators, into a team-based approach to well-child care.¹⁶

Multiple evidence-based approaches to team-based preventive care exist. Healthy Steps for Young Children¹⁷ uses a nonclinician to provide developmental and behavioral services to parents, including screening, assessment, and guidance. The Healthy Steps developmental specialist meets with parents in a risk-stratified model, during well-visits and additional family check-ups, providing developmental support and guidance, and supporting standardized screening as well. Findings from a controlled trial indicate that Healthy Steps families received more anticipatory guidance, and were more likely to have had a developmental assessment, and to be up-to-date with visit and immunization schedules.¹⁸ Video Interaction Project (VIP)¹⁹ is a well-child care intervention in which 30-minute sessions with an interventionist focused on parent-child interactions are provided with well-child care visits to enhance child development and school readiness for children ages 0 to 3. The parent-child interaction is recorded, and the parent and interventionist watch the recorded video interaction together, with the parent receiving positive reinforcement and suggestions on missed opportunities observed in the video interaction. Findings indicate that VIP has positive effects on child cognitive development and reduces maternal depressive symptoms.²⁰ Parent-focused Redesign for Encounters, Newborns to Toddlers (PARENT)²¹ is a community-designed well-child care delivery model that uses a culturally-responsive parent coach as part of a care team for all children ages 0 to 3, to serve as the primary provider of anticipatory guidance, psychosocial screening, and developmental/behavioral monitoring, reducing reliance on a clinician as the primary provider of routine well-child care services. Findings indicate that PARENT improves receipt of well-child care services and parent experiences of care and reduces emergency department utilization. There are other preventive care interventions also based on the idea of team-based care, and research findings are forthcoming.

Developing these roles further, to be more inclusive of individuals in a community health worker role, can help ensure that these team-based models of well-child care promote an antiracist approach to care that values the lived, culturally-relevant experiences and expertise of individuals who can provide relationship-based preventive care services to families. For example, traditional educational requirements (e.g., master’s degree) may be deemphasized in favor of relevant community knowledge and connections that community health workers possess. Community health workers are trusted community members who share a common background and lived experiences with the individuals and families they serve, and nationally, their demographics are well-aligned with the populations that experience the greatest health inequities —65% are Black or Latinx.²² Implementing a team-based approach to well-child care using community health workers can allow for greater cultural relevancy for families,²³ and reduce the burden on clinicians to provide the wide range of well-child care services, many of which do not require the expertise of a high-level clinician.²⁴

Facilities

Many pediatric clinics are limited in capacity to provide the range of care families may need. Recognizing the strain many clinics are under when supporting well-child care needs of socially complex children, it is critical to build the capacity of other community-based programs (eg, facilities) to provide a range of preventive care services.²⁵ In doing so, well-child care is decentralized, reducing the burden on primary care providers while also enhancing access to appropriate services for families. One such area that shows great promise for effective decentralization of preventive care is developmental and social needs screening and referral. In the Medical Home-Head Start Partnership Model,²⁶ culturally-responsive family navigators from Head Start programs take on the responsibility of developmental screening. In doing so, clinician time spent on initial screening is substantially reduced while also affording families greater time with a navigator to not only conduct the screening but discuss results and plan for next steps in collaboration with the primary care provider if referrals are needed. Findings of this intervention demonstrate a substantial increase in children receiving developmental and early learning support services.

Organization

Organization refers to the ways in which facilities are connected to one another. Often, when screening practices identify potential developmental concerns or social needs, families are provided with information, or referred to a community resource, but rarely does a closed-loop referral exist between services accessed in the community and the child’s medical home.¹³ In shifting the responsibility of screening to navigators, the Medical Home-Head Start Partnership Model promotes continuity of care such that families are supported in connecting with services and are followed through the process so that concerns can be addressed as they arise and communicated to the medical home. This interconnected system decentralizes a critical aspect of preventive care, while allowing for both facilities - the medical home and Head Start program - to be more robust in the services provided, resulting in enhanced care for families.

Building on the importance of enhanced care across interconnected facilities, The Help Me Grow System Model (https://helpmegrownational.org/hmg-systemmodel/), implemented in over 25 states, encourages communities to build on existing assets to create an interconnected system of resources supporting early childhood development. A key component of Help Me Grow is the Centralized Access Point (CAP) where primary care providers and community-based organizations can refer families to so that they may be connected with needed resources. The CAP helps ensure that resources can be identified and accessed, while reducing unnecessary duplication in services. The ways in which families, providers, and community-based organizations interact with the CAP can be adapted to meet community needs.

Information Systems

For clinic-community partnerships to function effectively in the provision of preventive care services, information systems for timely and appropriate sharing of information are key. In recent years, many states have begun working to facilitate ways to link child-level data across agencies and organizations; currently over 20 states link at least some aspects of child-level data.²⁷ In doing so, information about an individual child is connected across sectors and over time so that families and programs can connect information about that child from multiple settings, enhancing continuity in services. However, as data sharing becomes more prevalent, it will be necessary to structure this sharing from an antiracist perspective. This means acknowledging the hesitancy many families may have regarding information sharing due to historical practices that have disproportionately harmed racial minority and poor Americans; having structures in place to allow for greater transparency to families regarding their data are foundational to this effort. This also means ensuring the assessments we use to capture data are culturally-relevant and do not further disparities through misrepresentation of experiences, need, and outcomes.

Cross Sector Funding

The structural elements outlined above all require new payment models to support them. Barriers to payment for a new structure to support preventive care within the medical home are not trivial; they include inadequate Medicaid payment, lack of incentives to invest in team-based care, and payment models that do not recognize the contribution of preventive care provided by nonclinical community partners, and do not recognize primary care contributions to reducing costs of care outside health care systems. While some barriers have been addressed though successful pediatric accountable care organizations focused on improving care for children in poverty,²⁸ the fundamental health inequities that Medicaid, as an underfunded program that disproportionately serves Black, Latinx, and Indigenous children creates, must be addressed through Medicaid reform. Potential reforms include shifting Medicaid to a fully federally-funded program with payment rates equivalent to Medicare.²⁹

Provision and Receipt of Care

For well-child care, a clear process of provision and receipt of care is outlined through Bright Futures³⁰ and the Medical Home Model. Bright Futures has provided a process that can meet the majority of preventive care needs for children living in poverty. Other elements for the provision of preventive care (parent-child relational health, parent social support, and early learning promotion), function as part of the health promotion themes in Bright Futures, even if they are not explicitly enumerated in the related periodicity schedule of services. Bright Futures does not include preventive care services that provide guidance to families on how to teach their children about racism or that focus on racial socialization, but practitioners and researchers have made calls to include these in our processes of well-child care.³¹

The principles of the medical home model³² - accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective - are critical to the provision of care to Black and Brown families living in poverty. What are not well-defined, in either Bright Futures, or within the medical home model, are the structures that are needed to support this provision and receipt of well-child care in ways that appropriately counteract the negative impact that systemic racism has on the delivery and receipt of preventive care services. In essence, in well-child care, we have a process without a structure to support it. Our adapted framework presents an approach for what a structure of care can look like that appropriately supports the delivery and receipt of antiracist preventive care.

Outcomes

Infancy and early childhood are critical developmental periods that impact the health and wellness of individuals into adulthood. Children who grow up in impoverished environments and face daily interactions with interpersonal and structural racism are more likely to experience negative long-term mental, emotional, and physical health outcomes.³³ When this reality is applied to a population health level, the importance of ensuring entire generations of children who have been subjected to racism and poverty receive care that actively seeks to counteract these experiences becomes critical. It is important to recognize that short-term costs savings is not an expected outcome in this adapted framework; rather the outcomes of positive development, reduced family social needs, and improved health and well-being can lead to long-term costs savings across multiple sectors, including health care, education, social services, and the justice system.³⁴

Conclusion

This adapted framework for restructuring well-child care to better meet the needs of families living at the intersection of poverty and racism aligns with the recommendations of the recent consensus report on Implementing High-Quality Primary Care, by the National Academies of Science, Engineering, and Medicine,³⁵ which emphasizes the important role of communities in the provision of high-quality primary care. Thus, this adapted framework can be used as a guide for designing well-child care, but specific elements of the structure must be fit to the specific and unique resources and needs of the local community. As such, the well-child care team, community partnerships, and the organization of community resource must be developed at the community level. For example, nonclinician members of the well-child care team may differ among communities by education level, linguistic abilities, or role (eg, navigator, coach, developmental specialist). Which resources located outside the clinic are included and the ways in which they are organized to enhance the capacity to provide preventive care services across facilities will also differ based on community need and existing community-based resources. And finally, the ways in which the care delivery framework is funded will differ based on available funding mechanisms at the local, state, and federal levels.

There are initial steps that pediatric clinics and pediatric practices can take toward implementing this framework for well-child care, to better meet the needs of families living at the intersection of racism and poverty: 1) Identify potential members of their current team who can play a bigger role in preventive care services, 2) Create relationships with key community referral sources, 3) Make incremental improvements to their EHR that support consistent screening and documentation of community referrals as well as outcomes of these referrals; and 4) Change staff hiring practices to ensure that clinic/office staff reflect the race/ ethnicity, language, and communities of historically underserved families in the clinic or practice. By providing a stronger structure for well-child care that utilizes nonclinicians (eg, community health workers) as part of a well-child care team to provide critically important, culturally-relevant support, and coordination between primary care and community-based services, we can more equitably meet the comprehensive preventive care needs of families with young children impacted by the systematic oppression that operates at the intersection of racism and poverty.

What’s New.

This paper presents an adapted conceptual framework for transforming the structures of well-child care to address the effects of racism and poverty on health and development outcomes for young children.