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The future health and well-being of America is linked to how successfully we manage the health and well-being of today’s children. In this report we review recommendations for a research agenda on the disparities that affect the health and opportunities of many children and contribute to suboptimal health in adulthood.
On November 6–7, 2008, a multidisciplinary group of 70 researchers, practitioners, and funders gathered in Washington, DC, to develop this research agenda for eliminating child health disparities. The meeting focused on disparities, defined as “differences in health, health care, and developmental outcomes, particularly among racial and ethnic minority groups.” Led by the DC-Baltimore Research Center on Child Health Disparities, a collaboration of Howard University, Johns Hopkins University, and Children’s National Medical Center, the conference was sponsored by the National Center on Minority Health and Health Disparities, Eunice Kennedy Shriver National Institute of Child Health and Human Development, American Academy of Pediatrics, Agency for Healthcare Quality and Research, The Commonwealth Fund, Academic Pediatric Association, Lucile Packard Foundation for Children’s Health, and Robert Wood Johnson Foundation.
The multidisciplinary conference planning committee reviewed existing health disparities reports and, in consensus building of expert opinion, chose 9 topic areas to be discussed in 2 conference panels on conceptualization of child health disparities and solving child health disparities. Nine articles were commissioned and briefly presented at the conference with time for discussion and development of a research action agenda. The 9 articles, discussant comments, and final conference recommendations make up this supplement to Pediatrics.
In this summary article, we discuss our overarching definition and conceptualization of “health disparities,” which we believe should inform future research. We also discuss 2 useful models that informed the conference and provide recommendations regarding the scope, content, and methods of child health disparities research. Finally, we present recommendations regarding the infrastructure required to conduct this research, including training and funding.
Much more is understood about the state of child health disparities today than in 2003, when the Institute of Medicine (IOM) released Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care.1 Nonetheless, significant work remains to be done, particularly when we contrast the knowledge of child health disparities with our knowledge of disparities in adult health. The reasons for this contrast are many, but the consequences of not conducting the research required to better understand and ameliorate child health disparities do not bode well for our nation.
Throughout this article, we frequently refer to race and ethnicity; therefore, we briefly present here the context in which we use these terms. Growing literature suggests that race and ethnicity are a sociocultural category with little or no inherent biological or physiologic meaning, although people are often sorted into these categories on the basis of vague phenotypic criteria.1–3 The sociocultural definition of race and ethnicity differs across time and place but is often the basis for differential treatment, including limited access to resources and power, that can have dramatic and adverse effects on health.4
Considerable heterogeneity exists both within and between the racial minority groups in the United States. Nonetheless, the data on these groups make apparent the many ways in which socioeconomic adversity is admixed with “minority” racial status in this country. Taken together, minority status and decreased access to socioeconomic resources can create profound social disadvantage that is expressed in health disparities.
Demographic trends in the US population provide a backdrop for our consideration of child health disparities. In 2007, the United States had almost 74 million children, representing ~24% of the population; this number was projected to increase to 80 million by 2020.5 As the ratio of children to adults has declined since the 1960s, the racial and ethnic diversity of children in the United States has increased significantly. In 2007, 57% of children were non-Hispanic white compared with 74% in the 1980s.5 By 2050, it is estimated that 62% of America’s children will be ethnic minorities compared with 44% currently.6 Furthermore, 55% of the working-age population (18–64 years) is projected to be minority in 2050 (up from 34% in 2008).6 A significantly greater portion of minority children than non-Hispanic white children live in poverty. For example, in 2006, whereas only 10% of non-Hispanic white children lived in poverty, 27% of black and 33% of Hispanic children bore this burden.5 Racial and ethnic minorities are disproportionately represented among the socially and economically disadvantaged.
There is growing scientific and popular consensus regarding the existence and importance of racial and ethnic health disparities, as well as diverse efforts to address and ameliorate them. These efforts include publication of the ground-breaking 2003 IOM report on health care disparities1 and the subsequent IOM roundtable discussions in 2007,7 national health care disparities reports from the Agency for Healthcare Quality and Research,8 and the Finding Answers program supported by the Robert Wood Johnson Foundation.
Although this work has been informative, significant limitations exist in understanding and addressing child health disparities. First, fewer discussions have focused on health disparities in children than in adults. Notably, the original IOM report made little mention of pediatric issues. Second, and perhaps more importantly, when child health issues have been raised as part of the discussion of disparities, the approach is usually disease oriented and categorical (focused on disparities in a condition such as asthma or immunization rates). This approach overlooks the fundamental ways in which disparities are created and may be sustained over the life course and transgenerationally. Equally important, it does not incorporate the unique health characteristics of children that differentiate them from adults, and it ignores reciprocal impact of adult and child health disparities,9 which collectively limit life chances and burden families. For example, high rates of childhood asthma morbidity mean that adult caretakers take time off work, experience sleep disruptions, divert family resources into medical care, and experience additional sources of anxiety. Similarly, when adults carry heavy burdens of chronic disease, such as type 2 diabetes and early stroke, their ability to be effective parents and grandparents becomes constrained by their own health limitations. Finally, the focus on disease and diagnosis (or even on prevention) tends to minimize the importance of broad social forces and socioeconomic disadvantage, factors that are beyond the often-limited biomedical focus. This narrow focus necessarily constrains our consideration of opportunities for intervention.
First, we discuss our overarching definition and conceptualization of health disparities, which we believe should inform future research. Second, we discuss 2 useful models that informed the conference and our recommendations. Third, on the basis of this understanding of health disparities, we provide recommendations regarding the scope, content, and methods of child health disparities research. Finally, we present conference recommendations regarding the infrastructure required to conduct this research, including training and funding.
Several definitions of health disparities exist in the literature; however, the majority of definitions are adult oriented and approach child health disparities by using a similar framework. However, previous literature has made a cogent argument that child health is unique and distinct from that of adult health and that research on child health should incorporate this perspective.9,10 Consequently, adapted from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the working definition of health disparities for the conference was “significant differences in health, health care, or developmental outcomes, particularly among racial and ethnic groups.”11 However, through the work of the conference, participants proposed broadening the definition to incorporate the issues listed below. We believe that these issues should inform future research:
Most existing health disparities frameworks approach inequities with an adult focus and make the assumption that child inequities follow a similar paradigm. However, Horn and Beal10 have argued that a child-specific framework is needed when investigating child health disparities. A developmental or life-course model and an ecological model provide cogent paradigms for understanding the precursors of health outcomes and disparities that occur in childhood. The conference organizers chose the life-course framework as a source of guidance for the conference to move beyond disease-oriented and cross-sectional approaches to child health disparities. This model emphasizes the development of disparities across the continuum of childhood, adolescence, and adulthood. Although there continues to be debate and discussion regarding the evidence for, and value of, this approach, it provides a method for considering the many transgenerational and developmental processes that produce and sustain social disadvantage and health disparities.
In addition, we recognize the need for an ecological perspective that encompasses the diverse and far-reaching biological and social systems and interactions within which disparities are produced and sustained. Whereas the life-course model draws attention to developmental and transgenerational perspectives, the ecological model focuses on appreciating the complex environmental and extraindividual factors present at every point in time. In this way, these models are complementary. The conceptual model presented in Children’s Health, the Nation’s Wealth: Assessing and Improving Child Health,12 an IOM report, incorporates these models. Although neither the life-course nor the ecological model should be considered deterministic or preclude the use of other relevant models, we generally recommend that these models inform future investigations of child health disparities.
We call for translational research that addresses the need for new mechanistic insights, interventions, and approaches for making established interventions available to everyone. Disparities research has been regarded too often as the domain of psychosocial and behavioral investigators, who are typically rooted in a public health perspective. It is our view that basic, clinical, health-services, and community research are all needed to adequately understand and eliminate child health disparities. This research will identify:
It is not our intention to constrain child health disparities research, and the recommendations below are not meant to be exclusive. Rather, they identify areas of emphasis that merit special consideration. We recommend that, collectively, child health-disparities research:
Methodologic rigor and innovation are both required to advance health-disparities research generally and child health disparities research specifically. Methodologic issues in research on child health disparities include the need to:
Conference attendees also developed recommendations concerning the infrastructure support required for effective child health disparities research. The critical infrastructure elements they identified were training an effective and diverse scientific workforce and ensuring funding for this underappreciated area of investigation.
Specifically, we recommend the development, implementation, or increased investment in:
Improving the health of all children is not only a social priority in its own right but is also essential for ensuring the future health of our nation. This conference was designed to shape the research agenda for child health disparities, recognize the importance of child health disparities in the life course, and maximize our opportunities for eliminating health disparities.
The views and recommendations presented in the articles in this volume are those of the authors and participants and not intended to represent those of the organizations with which they are affiliated, the American Academy of Pediatrics, or the funders of the conference or research.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
Tina L. Cheng, MD, MPH, FAAP
Renée Jenkins, MD, FAAP
*Ivor B. Horn, MD, MPH, FAAP
Denice Cora-Bramble, MD, MBA, FAAP
Tina L. Cheng, MD, MPH, FAAP
Renée Jenkins, MD, FAAP
Lee Pachter, DO, FAAP
Jill Joseph, MD, PhD
Debby Berlyne, PhD
Angela Gaskin, MA
Regina Shaefer, MPH
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