Health Care Disparities of Children and Youth: A Pediatric Nursing Concern

Abstract

AS DOCUMENTED IN the recent National Healthcare Disparities Report by the Agency for Healthcare Research and Quality, 2004Agency for Healthcare Research and Quality National healthcare disparities report.http://www.qualitytools.ahrq.gov/disparitiesreport/download_report.aspxDate: 2004Google Scholar, there are pervasive disparities in health care for racially and ethnically diverse populations resulting in fewer and inferior quality of services, difficulties accessing services, and higher incidences of diseases and disabilities. This public health problem is significant because 19% of the United States population, amounting to almost 90 million people, is ethnically and racially diverse; this population is projected to increase to 28%, approaching approximately 220 million people (U.S. Census Bureau., 2004U.S. Census Bureau U.S. interim projections by age, sex, race, and Hispanic origin.http://www.census.gov/ipc/www/usinterimproj/Date: 2004Google Scholar). Experts estimate that 40% of children are ethnically and racially diverse (Hobbs & Stoops, 2002Hobbs F. Stoops N. Demographic Trends in the 20th Century. Census 2000 Special Reports, Series CENSR-4. U.S. Census Bureau, Washington, DC2002Google Scholar). A major goal of Healthy People 2010 is the elimination of health care disparities (U.S. Department of Health and Human Services, 2000U.S. Department of Health and Human Services Healthy People 2010: Understanding and improving health.2nd ed. U.S. Government Printing Office, Washington, DC2000Crossref Google Scholar). As a result, the USDHHS has undertaken an encompassing approach using the resources of the agencies within it such as the Centers for Disease Control and the National Institutes of Health to eliminate ethnic and racial disparities in health care. In spite of massive efforts to address the complex issue of health care disparities, few are directed toward children and youth, despite the scope of the problem affecting them (Institute of Medicine, 2003Institute of Medicine Unequal treatment: Confronting racial and ethnic disparities in health care. National Academies Press, Washington, DC2003Google Scholar). Uninsured health insurance rates are highest among racially and ethnically diverse children as compared with White children. The uninsured rates for racially and ethnically diverse children and youth have been estimated to range from 11.8% for Asians to 21% for Hispanics as compared with 7.4% for Whites (DeNavas-Walt et al., 2004DeNavas-Walt C. Proctor B.D. Mills R.J. U.S. Census Bureau, Current population reports, P60-226, income, poverty, and health insurance coverage in the United States. U.S. Government Printing Office, Washington, DC2004Google Scholar). Furthermore, findings from national surveys and large-scale studies revealed that racially and ethnically diverse children have more health problems, visit physicians less often, and have less access to health care and dental services as compared with White children, even when considering their socioeconomic backgrounds (Dougherty et al., 2005Dougherty D. Meikle S.F. Owens P. Kelley E. Moy E. Children's health care in the first national healthcare quality report and national healthcare disparities report.Medical Care. 2005; 43: I58-I63PubMed Google Scholar, Mofidi et al., 2002Mofidi M. Rozier R.G. King R.S. Problems with access to dental care for Medicaid-insured children: What caregivers think.American Journal of Public Health. 2002, January; 92: 53-58Crossref PubMed Scopus (148) Google Scholar, Newacheck et al., 1999Newacheck P.W. Brindis C.D. Cart C.U. Marchi K. Irwin C.E. Adolescent health insurance coverage: recent changes and access to care.Pediatrics. 1999; 104: 195-202Crossref PubMed Scopus (127) Google Scholar, Weech-Maldonado et al., 2001Weech-Maldonado R. Morales L.S. Spritzer K. Elliott M. Hays R.D. Racial and ethnic differences in parents' assessments of pediatric care in Medicaid managed care.Health Services Research. 2001; 36: 575-594PubMed Google Scholar). Analysis of data from five states (Alabama, Florida, Kansas, Indiana, and New York) regarding their State Children's Health Insurance Program (SCHIP) reported that higher proportions of non-Hispanic Black and Hispanic children were enrolled in the SCHIP than non-Hispanic White children. Non-Hispanic Black and Hispanic adolescents were half as likely to have a preventive health visit than non-Hispanic White adolescents. In addition, non-Hispanic Black and Hispanic adolescents were less likely to receive preventive counseling on diet management and emotional health topics than non-Hispanic White adolescents (Brach et al., 2003Brach C. Lewit E.M. VanLandeghem K. Bronstein J. Dick A.W. Kimminau K.S. et al.Who's Enrolled in the State Children's Health Insurance Program (SCHIP)? An Overview of Findings From the Child Health Insurance Research Initiative (CHIRI).Pediatrics. 2003; 112: e499-e507PubMed Google Scholar). Racial and ethnic disparities extend to children and youth with special health care needs (C/YSHCN). According to the recent National Survey of Children with Special Health Care Needs, 31% of C/YSHCN are ethnically and racially diverse. This group of C/YSHCN can be described by the following ethnic/racial groupings and prevalence rates: Hispanic, 8.5% (1 million); non-Hispanic Black, 13% (1.3 million); and non-Hispanic others (includes non-Hispanic mixed race, Asian, Alaskan native, American Indian, Hawaiian Native, and Pacific Islander), 10.6% (0.5 million). The National Survey of Children with Special Health Care Needs revealed significant disparities between non-Hispanic White C/YSHCN and Hispanic, non-Hispanic Black, and non-Hispanic other C/YSHCN on measures of access and satisfaction with care and family impact. Hispanics, non-Hispanic Blacks, and others were more likely to report unmet needs for specific health care and family support services than non-Hispanic Whites. They also reported difficulties obtaining specialty care, not having a personal physician or nurse, and greater dissatisfaction with family-centered care. Hispanic, non-Hispanic Black, and non-Hispanic other families more often reported the negative impact of a child's SHCN than non-Hispanic White families. These families reported more often that the child's SHCN created more financial problems, required more time for caregiving, and negatively affected the parents' employment (U.S. Department of Health and Human Services, 2004U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal Child Health Bureau The National Survey of Children with Special Health Care Needs chartbook 2001. U. S. Department of Health and Human Services, Rockville, MD2004Google Scholar, van Dyck et al., 2004van Dyck P. Kogan M.D. Heppel D. Blumberg S.J. Cynamon M.L. Newacheck P.W. The National Survey of Children's Health: A new data resource.Maternal and Child Health Journal. 2004; 8: 183-188Crossref PubMed Scopus (56) Google Scholar). The findings of this survey supported the conclusions of the National Healthcare Disparities Report (Agency for Healthcare Research and Quality, 2004Agency for Healthcare Research and Quality National healthcare disparities report.http://www.qualitytools.ahrq.gov/disparitiesreport/download_report.aspxDate: 2004Google Scholar, Dougherty et al., 2005Dougherty D. Meikle S.F. Owens P. Kelley E. Moy E. Children's health care in the first national healthcare quality report and national healthcare disparities report.Medical Care. 2005; 43: I58-I63PubMed Google Scholar). Other national reports have demonstrated that Hispanic and non-Hispanic Black C/YSHCN had significantly less access to health care, encountered more barriers to care, reported more health problems, and were more likely to have no health insurance coverage as compared with White C/YSHCN, supporting the findings of the National Survey of Children with Special Health Care Needs (Kuhlthau et al., 2004Kuhlthau K. Nyman R.M. Ferris T.G. Beal A.C. Perrin J.M. Correlates of use of specialty care.Pediatrics. 2004; 113: e249-e255Crossref PubMed Scopus (70) Google Scholar, Newacheck et al., 2002Newacheck P.W. Hung Y.-Y. Wright K.K. et al.Racial and ethnic disparities in access to care for children with special health care needs.Ambulatory Pediatrics. 2002; 2: 247-254Abstract Full Text Full Text PDF PubMed Scopus (120) Google Scholar, Newacheck et al., 2000Newacheck P.W. McManus M. Fox H.B. Hung Y.Y. Halfon N. Access to health care for children with special health care needs.Pediatrics. 2000; 105: 760-766Crossref PubMed Scopus (257) Google Scholar, Shone et al., 2003Shone L.P. Dick A.W. Brach C. Kimminau K.S. LaClair B.J. Shenkman E.A. et al.The role of race and ethnicity in the State Children's Health Insurance Program (SCHIP) in four states: Are there baseline disparities, and what do they mean for SCHIP?.Pediatrics. 2003; 112: e521-e532Crossref PubMed Scopus (46) Google Scholar). Secondary analysis of the 1994 National Health Interview Disability Survey revealed that non-Hispanic Black C/YSHCN were less likely to use related services that C/YSHCN require, such as social support services and service coordination, as compared with White C/YSHCN (Weller et al., 2003Weller W.E. Minkovitz C.S. Anderson G.F. Utilization of medical and health-related services among school-age children and adolescents with special health care needs.Pediatrics. 2003; 112: 593-603Crossref PubMed Scopus (70) Google Scholar). Despite the advances in the care and treatment of all children and adolescents, including C/YSHCN, disparities in health outcomes continue to exist. As has been widely acknowledged, the explanations that have been offered to account in part for the disparities noted in the aforementioned national surveys and studies fall short of providing the evidence needed to fully understand the scope of the problem. Some of the explanations that have been offered to account for factors associated with health disparities are discrimination, cultural beliefs and self-perceptions, socioeconomic status, geographical location, disease severity, and access to care (Akinbami & Schoendorf, 2002Akinbami L.J. Schoendorf K.C. Trends in childhood asthma: prevalence, health care utilization, and mortality.Pediatrics. 2002; 110: 315-322Crossref PubMed Scopus (633) Google Scholar, Boneva et al., 2001Boneva R.S. Botto L.D. Moore C.A. Yang Q. Correa A. Erickson J.D. Mortality associated with congenital heart defects in the United States: Trends and racial disparities, 1979–1997.Circulation. 2001; 103: 2376-2381Crossref PubMed Scopus (410) Google Scholar, Furth et al., 2000Furth S.L. Garg P.P. Neu A.M. Hwang W. Fivush B.A. Powe N.R. Racial differences in access to the kidney transplant waiting list for children and adolescents with end-stage renal disease.Pediatrics. 2000; 106: 756-761Crossref PubMed Scopus (119) Google Scholar, Furth et al., 1997Furth S.L. Powe N.R. Hwang W. Neu A.M. Fivush B.A. Racial differences in choice of dialysis modality for children with end-stage renal disease.Pediatrics. 1997; 99 (Accessed from) (on September 9, 2005): 6http://www.pediatrics.org/cgi/content/full/99/4/e6Crossref Scopus (17) Google Scholar, Lieu et al., 2004Lieu T.A. Lozano P. Finkelstein J.A. Chi F.W. Jensvold N.G. Capra A.M. et al.Racial/ethnic variation in asthma status and management practices among children in managed Medicaid.Pediatrics. 2004; 109: 857-865Crossref Scopus (314) Google Scholar, Mannino et al., 2002Mannino D.M. Homa D.M. Akinbami L.J. Moorman J.E. Gwynn C. Redd S.C. Surveillance for asthma—United States, 1980–1999.MMWR Morbidity and Mortality Weekly Report. 2002; 51: 1-13Google Scholar). It is unclear as to what extent these factors or a combination of them explain the pervasive health disparities for ethnically and racially diverse children and youth, including those with SHCN. The national prevalence estimates and large-scale national or regional survey studies are limited in terms of providing an understanding of the association between health disparities and ethnically and racially diverse C/YSHCN. Furthermore, the focus of these national and regional studies has been on non-Hispanic Blacks and Hispanics. Not much is known about other ethnic groups such as non-Hispanic mixed races, Asians, Alaskan Natives, American Indians, Hawaiian Natives, and Pacific Islanders. In reporting their findings, researchers referred to these ethnic groups collectively as “non-Hispanic others,” blurring the important cultural differences between the groups, although the data were analyzed in this manner for statistical purposes owing to small sample numbers. More studies are needed to fully understand the biopsychosocial and cultural factors that impact YSHCN health outcomes and access to health services. Nurse researchers are in an ideal position to examine these factors more closely. Nursing clinicians are in an excellent position not only to inform researchers about factors impacting ethnically and racially diverse children, youth, and their families but also to serve as collaborators in expanding our body of knowledge. In addition, clinicians can inform their colleagues about strategies that have been effective in outreaching, improving access to care and health outcomes of this population of children and youth through publishing efforts.