PEDIATRICS Vol. 117 No. 6 June 2006, pp. e1202-e1212 (doi:10.1542/peds.2005-2606)
Emotional, Developmental, and Behavioral Health of American Children and Their Families: A Report From the 2003 National Survey of Children's Health
a Departments of Pediatrics
b Public Health Sciences, University of Virginia, Charlottesville, Virginia
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ABSTRACT |
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BACKGROUND. Recent children's health surveys have documented a high prevalence of emotional, developmental, and behavioral problems among children. Data from the 2003 National Survey of Children's Health provide new insights into these problems and their association with family function and community participation. These issues have become a current focus of the World Health Organization.
METHODS. Answers to questions of interest from the 2003 National Survey of Children's Health were reported using estimates and SEs of rates. Statistical comparisons of rates with 
2 tests at the 0.05 level were made when relevant.
RESULTS. The most commonly diagnosed problems among children 6–17 years of age were learning disabilities (11.5%), attention-deficit/hyperactivity disorder (8.8%), and behavioral problems (6.3%); among preschoolers, speech problems (5.8%) and developmental delay (3.2%) were most common. One in 200 children was diagnosed with autism. In contrast, rates of parental concerns about emotional, developmental, or behavioral problems were much higher; for example, 41% of parents had concerns about learning difficulties and 36% about depression or anxiety. Children with developmental problems had lower self-esteem, more depression and anxiety, more problems with learning, missed more school, and were less involved in sports and other community activities. Their families experienced more difficulty in the areas of childcare, employment, parent-child relationships, and caregiver burden.
CONCLUSIONS. The most recent National Survey of Children's Health mirrored results of previous surveys regarding rates of diagnosed emotional, developmental, and behavioral problems, including an escalating diagnosis of autism among children. Reported rates of parental concerns about these problems were much higher, suggesting possible underdiagnosis of children's problems. Children with chronic problems had diminished family functioning, more school absences, and less participation in community activities compared with other children. Their parents experienced more difficulty with childcare, employment, and parenting skills. A change in treatment emphasis is needed, away from an exclusive focus on a child's developmental and behavioral problems to one that addresses the impacts of these problems on the family and community participation. A new approach to the way these issues are addressed and managed has the potential to enhance the quality of life for a child, as well as the parents, and to produce more meaningful and tangible solutions to these complex and increasingly evident problems.
Key Words: development • behavior • emotional status • Survey of Children's Health
Abbreviations: NSCH—National Survey of Children's Health • CSHCN—Children with Special Health Care Needs • ADHD—attention deficit/hyperactivity disorder
Although the societal and economic effects of developmental and behavioral disorders have been described previously,1–5 new insights into the impact of these disorders on child participation and family functioning have become available through the recently released data of the 2003 National Survey of Children's Health (NSCH).6 This nationwide telephone survey, sponsored by the Maternal and Child Health Bureau of the Health Resources and Services Administration, provides an unprecedented breadth and depth of data pertaining to the developmental and behavioral health of children in the United States.
The NSCH augments the 2001 National Survey of Children with Special Health Care Needs (CSHCN)7 by including all children, not just those with special health care needs. Analysis of NSCH data has the potential to provide new information to individual service providers, as well as communities and states, which might be used to revise clinical practices and reformulate policy to maximize the functional status of children with emotional, developmental, and behavioral problems (which will be subsequently termed developmental) and their families. This is consistent with the World Health Organization 2002 International Classification of Functioning, Disability, and Health,8 which emphasizes an individual's functional capacity over disability when addressing developmental problems.
The number of children with "developmental delay" being served in schools under the federal Individuals with Disabilities Education Act has increased 633% between 1997–1998 and 2000–2001, and the number of children with "autism" being served has increased >400% since first reported in 1992–1993.9 Recent reports suggest that these severe emotional and behavioral difficulties create negative impacts on home lives, friendships, learning, and recreational activities, as well as place considerable burden on families and communities.10
Given this increasing burden and the recent emphasis on functional status, we will address several questions in this report. How are families coping with having a child with developmental or behavioral challenges? How do children with emotional, developmental, and behavioral problems compare with children without these problems in terms of demographics and functional status? Are children with developmental and behavioral disorders as involved in their schools and communities as children without these disorders?
Using the NSCH data, we will provide an emotional, developmental, and behavioral health "report card" for children, as well as explore in-depth associations among developmental problems, family function, and community participation. We hope this information and analysis will give parents, health care practitioners, policymakers, and advocates enhanced awareness and specific strategies to improve the quality of life for these vulnerable children and their families.
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METHODS |
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Data
The NSCH 2003 serves as the primary data source for this report.6,11 This survey addresses the physical, emotional, and behavioral health of children with regard to (1) child and family demographics, (2) children's physical and mental health status, (3) health insurance status, (4) access to and use of health care services, (5) presence or absence of a "medical home," (6) family functioning, (7) parental health, (8) neighborhood characteristics, and (9) age-specific developmental health status.
Sampling
The NSCH data were obtained by the Centers for Disease Control and Prevention National Center for Health Statistics using the State and Local Area Integrated Telephone Survey program. The State and Local Area Integrated Telephone Survey used the random-digit dial sampling framework of the National Immunization Survey to identify households with children <18 years of age in all 50 states and the District of Columbia. One child in each household was randomly selected to be the focus of the survey. The survey respondent (who will be subsequently referred to as "parent") was an adult in the household identified as "the parent or guardian who lives in this household who knows the most about the health and health care of the child." Parental interviews conducted in English and Spanish were completed and data gathered on a total of 102353 children ages 0–17 years during 2003–2004. Nearly 69% of the households contacted for NSCH completed the 25-minute telephone interview. Individual response rates by state ranged from 49.6% to 64.4%, and 32 states accomplished response rates >55%. A total of 6035 interviews were conducted in Spanish, accounting for 5.9% of all completed interviews. Detailed information about the design of the NSCH is available at www.nschdata.org.
Analysis
All analyses of the NSCH data were performed using SUDAAN, which produces accurate variance estimates for complex survey designs.12 Population-based estimates were obtained by assigning sampling weights to each sampled child for whom an interview was completed.13 Estimates of percentages shown in this report were calculated excluding missing values for the variable in question. Responses of "refused" or "I don't know" were also excluded from the denominator. Relevant statistical comparisons were made using 2 tests at the 0.05 level.
Tables 2 and 3 show frequencies of responses to survey questions for the entire sample. Table 1 (demographics) and Table 4 (effects on family functioning and community participation) compare children with chronic developmental problems to those without such problems. For these latter analyses, a restrictive definition of "problems" was used based on a parental response of "yes" to the following 2 questions: (1) "Does the child have any kind of emotional, developmental, or behavioral problems for which she or he needs treatment or counseling?"; and (2) "Is the problem expected to last 12 months or longer?" This definition was similarly used in the National Survey of CSHCN.7
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RESULTS |
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Table 1 compares demographic data on all of the NSCH respondents with data on respondents who reported having a child with chronic (ie, lasting
12 months and warranting treatment or counseling) emotional, developmental, or behavioral problems. Using this restrictive definition, just >5% of children ages 0–17 years, or 
1.5 million American children, are reported to manifest persistent emotional, developmental, or behavioral problems. Reports of specific diagnosed problems and parental concerns are higher, as indicated in subsequent tables. The demographics of these children were similar to children without developmental problems with respect to race, relation of respondent to child, parental education, and health insurance status. A notable exception was gender: nearly two-thirds of children with developmental problems were male.
Slightly fewer Hispanic respondents had a child with developmental problems, and slightly more black respondents identified developmental problems in their children compared with whites. The majority of respondents identified themselves as the maternal guardian in both groups. The majority of families in both groups reported having 2 adults at home; however, there were nearly twice the number of families caring for a child with developmental problems that had only 1 adult in the home compared with the families caring for children without developmental problems. As in the general population, most families in both groups had 1 person in the household with a formal education beyond high school. Because of the extremely large sample size of the study, these comparisons were statistically significant, even when the magnitudes of the difference in proportions were not very large.
Of note, whereas both groups of children were insured in similar proportions, significantly more children with developmental problems were insured by public sources and live in "working poor" households (defined in NSCH as "children living with parents who are employed full-time and have household incomes <100% Federal Poverty Level").
The first section of Table 2 summarizes frequencies of specific emotional, developmental, and behavioral diagnoses from the NSCH data. The most commonly reported specific diagnosis made in preschool children (ages 0–5 years) was "stammering, stuttering or other speech problems" followed by learning disabilities and behavioral problems. For school-aged children, the most common diagnoses were learning disabilities, attention-deficit/hyperactivity disorder (ADHD), and behavioral and speech problems. As expected, learning disabilities, ADHD, depression, and anxiety were diagnosed more frequently in school-aged children than in preschoolers. The diagnosis of autism was made 3 times more often in school-aged children than in preschoolers. Overall, 1 in 200 children, ages 0–17 years, was diagnosed with autism.
The second section of Table 2 presents additional salient areas of interest from the NSCH data. Emotional, behavioral, and developmental problems that are expected to last 12 months were twice as likely to occur in school-aged children than in preschoolers (P < .0001). Mental health services were used 4 times as often in school-aged children (P < .0001). More than twice as many school-aged children had "difficulties with emotions, concentration, behavior, or getting along with others" than were receiving mental health care or developmental counseling.
Table 3 lists frequencies of reported parental concerns regarding developmental problems, including problems professionally diagnosed, as well as those perceived by parents. Overall, 10–20% of parents of young children expressed concern about their child's development. In younger children, parental concern about gross and fine motor skills was more common than concern about language and social development. However, as children progressed from infancy to preschool age, parents reported increasing concern about language and social development. One in 5 parents of children 18 months to 5 years of age reported concern about their child's behavior.
Parents reported learning difficulties in their school-aged children >3 times as often as professional diagnoses of learning disabilities are made and reported concern about depression and anxiety 7 times more often than actually diagnosed in the population. Approximately one fourth of parents in the study expressed concern about substance abuse or eating disorders in their children.
The remaining data focus on chronic (ie, lasting >12 months) emotional, behavioral, and developmental problems among children and the impact of these problems on family functioning and participation in community activities. Table 4 summarizes differences in the responses of 2 groups of parents: those who have children with emotional, behavioral, and developmental problems expected to last 12 months and those with children who have no reported developmental problems. Respondents who had children with problems were more likely to have difficulty with child care arrangements and employment. Children with problems were 3 times as likely to miss 10 days of school and 4 times as likely to have multiple problems at school reported to parents or caretakers.
Children with developmental problems were significantly less likely to participate in sports or social activities after school or on weekends than those without reported problems, and parents of these children expressed more concern about their children's self-esteem, depression, anxiety, and substance abuse.
There was some reduction in the emotional closeness parents felt toward children with developmental and behavioral problems. These respondents also felt less able to cope with the demands of parenthood compared with parents of similar-aged children without problems. A significant number of respondents felt that they were sacrificing some quality of life to meet their children's needs. However, a majority of these parents also felt that they had the help of an emotional support system consisting of family, friends, and health care professionals.
Of the children who were reported to have chronic emotional, developmental, or behavioral problems lasting >12 months, 7.2% were diagnosed with autism. Overall, parents of children with autism reported encountering similar but more severe problems than parents of children with other chronic problems. In addition, those children diagnosed with autism were less likely to participate in sports (27% vs 41%; P < .005) and extracurricular activities (34% vs 45%; P < .05) than children with other developmental problems, and their parents seemed to have far fewer concerns about substance abuse (10% vs 30%; P < .0001). Parents of children with autism reported their relationship to their child as "very close" more often than parents of children with other chronic developmental problems (86% vs 73%; P < .0001); yet, these parents were 3 times as likely to indicate that their children were always more difficult to care for than most children the same age (41% vs 14%; P < .0001). Significantly, more parents of autistic children reported that they were able to cope "very well" with day-to-day demands of parenthood compared with parents of children with other chronic developmental problems (48% vs 39%; P < .05). Nearly 90% of respondents with autistic children said they had emotional support in raising their children compared with 83% of parents of children with other developmental problems (P < .005).
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DISCUSSION |
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Demographics
Children in the 2 groups (those children with developmental problems and those without) were comparable in racial and parental education distributions. However, in the developmental problems group, there was a preponderance of males and a greater representation of children with a single parent in the home, with public insurance, and from working poor families. Advocates and policymakers should actively support the preservation of Medicaid preventive services (eg, Early and Periodic Screening, Diagnostic, and Treatment [EPSDT] services) and family centered support resources for financially challenged families to include early detection and intervention for developmental and emotional problems among these populations of vulnerable children.
Prevalence of Problems
The data from the NSCH are comparable to data from previous surveys for specific diagnoses, such as ADHD (7%),14 learning disabilities (8–10%),14 behavioral and conduct problems (5–7%),15 anxiety or depressive disorder (2–4%),16 and alcohol or drug abuse (19–22%).17 However, only 5% of respondents in the NSCH reported having a child who manifested persistent, developmental, or behavioral problems. This percentage is slightly higher than that reported in the National Survey of CSHCN (3.4%)7 but far lower than that found in earlier surveys (17%).18 It is possible that this prevalence estimate is lower than other estimates for the same reasons as those put forth in an editorial addressing the lower prevalence findings of the National Survey of CSHCN.19 First, other reports of higher prevalence rates do not use such restrictive criteria (eg, developmental problems used for analyses in Tables 1 and 4 are limited to children whose parents report emotional, developmental, or behavioral problems lasting 12 months and for whom the child currently receives treatment or counseling). Second, because a delay between the onset of symptoms and diagnosis is common for such problems, prevalence estimates might be higher if based on reports of symptoms of behavioral difficulties, rather than reports of conditions for which children require treatment or counseling. Third, biases in parental reporting might exist, because parents might (1) not recognize or correctly identify problems as emotional, developmental, or behavioral in nature; (2) consider problems sufficiently serious to warrant treatment or counseling; and (3) be unaware of resources and services available to address these concerns. Fourth, problems also could be underreported because of limited provision of developmental assessments in primary care settings that could lead to referrals to developmental services.20
Frequencies of Diagnoses and Parental Concerns
The most common diagnoses for preschoolers were problems with language, learning, and behavior; school-aged children were most commonly diagnosed with learning disabilities, ADHD, and emotional and behavioral problems. More than 10% of children repeated 1 grade, and nearly 1 in 3 parents was contacted about problems at school. These findings indicate that pediatricians need to be vigilant and aggressive about addressing these concerns with families of both preschool and school-aged children. Primary care providers should ask about school performance, social adjustment, behavior, and teacher comments at every well-child examination and sports physical.
The striking discrepancies between higher parental concerns about learning and emotional problems in children 6–17 years of age (Table 3) and lower professional diagnoses of these problems (Table 2) may reflect reporting bias on the part of the parents. However, they may also reflect a lack of recognition by clinicians of important, but often subtle, conditions in school-aged children, such as learning disabilities or depression. It is probable that the actual frequency of developmental problems in this age group is somewhere between the percentage of parents expressing concern and the percentage of children with professional diagnoses. These findings illustrate the importance of inquiring about and acting on parental concerns when evaluating developmental and emotional health in school-aged children.
Just >50% of school-aged children with a diagnosis of ADHD were taking medication at the time of the survey. Preschool children were far less likely to be diagnosed with ADHD, and only 40% of diagnosed children were taking medications for the condition. There are several possible explanations for the relatively low percentage of preschoolers diagnosed with ADHD taking medications: (1) parents cannot afford or do not want to use stimulant medications for their child, (2) children have poor compliance with medication schedules, and/or (3) ADHD is being managed without pharmaceuticals.
Whereas population-based studies in the 1980s and early 1990s found prevalence rates of autism of 0.3–1.1 cases per 1000, depending on diagnostic criteria,21–23 the higher prevalence rates found in the NSCH study (5 per 1000) are consistent with other recent regional reports: 3.4 per 1000 in Atlanta,24 1.1 per 1000 in California,25 and 6.7 per 1000 in New Jersey.26 The possible explanations for this increase include (1) a broadened definition of autism, (2) heightened awareness of the condition, (3) an actual increase in the number of cases, or (4) any combination of these factors. The diagnosis of autism by parental report is more common among school-aged children than among preschool children. The Centers for Disease Control and Prevention has launched an early developmental and behavioral surveillance program, called the "Learn the Signs: Act Early" campaign, designed to detect children with suspected autism in the first several years of life.27 Health, education, and social service systems will need to be prepared to respond to this rapidly growing population of individuals with autism.
The high rate of parental concerns about substance abuse and eating disorders among older children and adolescents is one that needs to be addressed more aggressively. Reviews are available regarding earlier recognition and evidence-based treatment of these conditions.28–31
Family and Community Functioning
According to the American Academy of Pediatrics, "Families are the most central and enduring influence in children's lives ... the health and well-being of children are inextricably linked to their parent's physical, emotional and social health, social circumstances, and child-rearing practices."32 The NSCH data allow us to explore the functional status of families of children with developmental problems. Parents of children with developmental problems find appropriate and dependable child care arrangements more difficult and, thus, have fewer employment options. Children with developmental problems, especially infants and toddlers, have higher rates of illness or medical complications that disrupt child care and require parental attention;33 many child care facilities are reluctant to accept children with fragile medical conditions or behavioral problems.34 When these children reach the age of 3, most will be eligible for special education services under the Individuals with Disabilities Education Act, where developmental problems are legally mandated to be addressed in the school setting.
The primary health care provider or team can often work with families and child care staff to manage concerns (eg, dysfunctional toileting, seizures, and biting) before they escalate to a crisis level. Parents without access to child care and attendant support systems are likely to experience stress when dealing with their children's developmental problems. Without child care and, therefore, stable employment, they may experience additional stress from lack of financial resources. The National Early Childhood Technical Assistance Center publishes a resource packet on inclusionary practices and provisions of the Americans with Disabilities Act related to child care services for children with disabilities.35 The Americans with Disabilities Act mandates that no individual with disabilities can be denied access to services in public or private day care facilities. Pediatricians can use this mandate, the resource packet, and their own expertise to assist families in finding child care and to advise child care providers on overcoming the medical barriers to successful placement.
Not surprisingly, children with developmental problems miss many days of school, and, when in school, tend to adapt poorly. Children may miss school because of suspensions for bad behavior or because of illness, victimization by bullies, ridicule, fear of failure, or low self-esteem. Parents should be encouraged early on, before problems become entrenched, to discuss poor attendance with the teachers, guidance counselors, and pediatricians in order to determine the causes and remedial actions necessary to address this problem.
Participation in everyday activities is considered a vital part of children's development and is related to quality of life and, possibly, future life outcomes. According to the NSCH, children with developmental problems participated in sports and social activities outside of school less frequently than their peers. These findings may account, in part, for parent's observations that their children had lower self-esteem, were depressed and anxious, and engaged in substance abuse at higher rates. In a study that compared 2 groups of young children, those with disabilities and those without, with respect to the extent and nature of their participation in community activities, Ehrmann et al36 found lower rates of participation in opportunities for family enrichment among the children with disabilities. In another study, Hogan et al37 found that students in the 6th, 8th, and 10th grades that had physical, sensory, or learning disabilities reported lower levels of school satisfaction, greater voluntary absenteeism, and were more likely to abuse alcohol and smoke cigarettes. The interaction between a child's development and environment is complex. Law et al38,39 observed that demographic variables such as gender, low income, single parent status, and having parents who are less educated, rather than physical disability (eg, cerebral palsy or developmental delay), predicted the degree of a child's participation in community activities. Thus, new approaches are needed to increase these children's participation in community activities, which may prove to be as important as individual interventions in improving overall development, as well as quality of life.
In comparing interview results obtained from parents of autistic children with those obtained from parents of children with other developmental problems, a few differences are notable. Parents of autistic children were more likely to have difficulties with job maintenance than other parents. Among all of the parents with or without children who have various developmental or behavioral problems, parents of autistic children seem to have the greatest challenges in day-to-day care. Parents reported equally close relationships with their autistic children and similar coping abilities when compared with parents of children with other developmental problems but found child care more difficult. In light of the increasing prevalence of autism, these observations suggest that a greater proportion of attention and resources will need to be directed toward this population of caregivers and that family focused interventions, such as referrals to parental support groups, may be as important as those that are focused on the individual child.
Communities and health care professionals need to place a greater emphasis on finding creative solutions for children with developmental problems, like ADHD or autism, to promote a healthier adaptation to functioning in everyday life. Relying on pharmacologic treatments to accomplish this is less than optimal; medications only serve to ameliorate symptoms but do not eliminate the underlying conditions. Creative approaches might include finding a social outlet for a child tailored to the specific developmental problem. For example, a child with ADHD would probably find a sport like baseball slow paced and frustrating but might find swimming or soccer an engaging and satisfying activity. Other approaches might address problems parents face in activities of daily life. Parents of a child with autism may never go out to a restaurant alone, because they cannot find a willing babysitter. A solution might involve finding students of special education at a local college who might well be willing to care for such a child and gain valuable direct experience in their area of study. These are relatively simple measures that can have a major positive impact on families and children's quality of life but which may not be obvious to the families themselves. Health care providers can be an important source of creative ideas and solutions, but they must be willing to spend the time needed to thoroughly evaluate the specific needs of the children and their parents and provide help in implementing solutions. Clinicians may find assistance in identifying supportive services for patients and their families with emotional, developmental, and behavior problems in the Appendix.
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Limitations of the Study
The NSCH is the largest, most comprehensive survey of the health of children in the United States to date. This survey has limitations that should be noted, because this analysis is based on data from the study. Because the data in the survey are cross-sectional, conclusions regarding causality cannot be made. In addition, the survey excludes data from institutionalized children and children from homes without telephones. Although parental observations are often used in surveys and have been supported previously in the literature as valid for data collection,7,40–44 there are reporting biases inherent in such a method, including cultural differences in the reporting of child development and functional status. Because of the way questions were posed to parents, and because there is no corresponding chart review, the data offer a limited capacity to report results according to specific disorders (ie, cerebral palsy, mental retardation, etc). Also, because of inconsistency in answers (eg, a parent may answer "no" to a general question such as "does your child have an emotional problem" but may answer "yes" when asked "does your child have depression?"), it is difficult to accurately interpret and quantify the total numbers of children affected by specific health conditions.
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CONCLUSIONS |
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The 2003 NSCH has provided quantified benchmarks regarding the impacts of children's developmental and behavioral problems on child and family functioning. These benchmarks serve to elucidate potential interventions that go beyond addressing only the child's developmental or behavioral problem to addressing the impacts of these problems on families and communities. Without success in improving these collateral problems, the likelihood of success in treating the primary problems may be diminished.
In keeping with the emphasis of the World Health Organization on a child's activity and participation, rather than on impairment and disability,8 the 2003 NSCH provides actual data on the impacts of emotional, developmental, and behavioral problems on children's and families' quality of life and involvement in their communities. Analyses of these data reveal that children with persistent developmental problems, compared with children without problems, have poorer self-esteem, more depression and anxiety, more problems with learning, miss more school, and are less involved with community activities. Families of children with persistent developmental problems are struggling in the areas of finances, employment, parent-child relationships, and caregiver burden. These results have far-reaching applications for health care professionals working with these families and their extended communities, as well as for child advocates and public policymakers. A new approach to the way these issues are addressed and managed has the potential to enhance the quality of life for a child, as well as the parents, and to produce more meaningful and tangible solutions to these complex and increasingly evident problems.
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APPENDIX 1 |
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ACKNOWLEDGMENTS |
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The authors would like to thank Dr Mark Mendelsohn for his review of this article.
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FOOTNOTES |
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Accepted Dec 14, 2005.
Address correspondence to James A. Blackman, MD, MPH, Kluge Children's Rehabilitation Center and Research Institute, University of Virginia Children's Hospital, 2270 Ivy Rd, Charlottesville, VA 22903. E-mail: jab5u{at}virginia.edu
The authors have indicated they have no financial relationships relevant to this article to disclose.
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