Chapter 18

Parental Reports of Emotional or Behavioral Difficulties and Mental Health Service Use among U.S. School-Age Children

Patricia N. Pastor
Cynthia A. Reuben
Anna Falkenstern
National Center for Health Statistics, Centers for Disease Control and Prevention

Introduction

The 1999 U.S. Surgeon General’s Report on Mental Health identified mental health (MH) as an essential condition for children’s development and well-being (U.S. DHHS, 1999). During the course of a year, approximately 20 percent of children have symptoms of a diagnosable clinical disorder and about 5 percent symptoms causing serious functional impairment (Leaf et al., 1996). Unfortunately, mental disorders in children are often undetected and therefore remain untreated (Leaf et al., 1996; Zahner, Pawelkiewicz, DeFrancesco, & Adnopoz, 1992). Unmet MH care needs can have serious consequences for children and their families: strained social relationships, poor academic performance, and serious problems in adulthood. Longitudinal studies of children with mental disorders have documented an increased risk of dropping out of school, alcohol and drug use, and criminal activity later in life (Buka, Monuteauz, & Earls, 2002). Further, children with mental disorders are at increased risk for suicidal behavior (Shaffer & Craft, 1999).

Information collected from parents is important for identifying child MH symptoms and disorders in both clinical and research settings. Many survey measures of child MH are based exclusively on parental reports. Past research has shown that parents frequently identify symptoms associated with behavioral and learning disorders (Glascoe, 1991, 2000). By contrast, parents may provide less information about symptoms related to the internalizing disorders of children such as anxiety and depression (Teagle, 2002). Also, parents may have less information about the symptoms of older children than younger children because the symptoms may be less overt as children grow older and may often occur in settings outside of the home (Achenbach, Dumenci, & Rescorla, 2002; Verhulst et al., 2003). However, parents of both younger and older children play a key role in identifying symptoms and initiating care for mental disorders and, as a result, can provide detailed information about MH service use (Costello, Pescosolido, Angold, & Burns., 1998). Moreover, because of their central role in children’s lives, parents can also supply detailed information about health insurance coverage and other sociodemographic characteristics (Simpson, Scott, Henderson, & Manderscheid, 2004).

This chapter provides an overview of children’s mental symptoms by examining parental reports of emotional or behavioral difficulties. The specific topics covered in the chapter include (1) a description of the prevalence of emotional or behavioral difficulties among all children 4–17 years of age and the prevalence among children in major sociodemographic subgroups, (2) an examination of the association between emotional or behavioral difficulties and three disorders: attention deficit hyperactivity disorder (ADHD), learning disability, and developmental delay, and (3) an analysis of MH service use by children with and without emotional or behavioral difficulties.

Data and Methods

This chapter presents data from the 2001–2003 National Health Interview Survey (NHIS), a continuous household survey of a nationally representative sample of the U.S. noninstitutionalized, civilian population (Botman, Moore, Moriarity, & Parsons, 2000). In-person household interviews are used to obtain a wide range of information, including health conditions, health insurance coverage, use of a variety of health care services, and sociodemographic characteristics. A knowledgeable adult, usually a parent, provides information for children. In each sample family with children, one child 0–17 years of age is randomly selected, and additional detailed questions are asked about this child’s health status and use of health care services. No identifying information is maintained on the particular child sampled.

This chapter presents estimates based on information about children in the child sample of the 2001–2003 NHIS. The child sample response rate, reflecting the response rate at the household, family, and sample child levels, was 81 percent in 2001–2003. The results presented in this chapter describe the health and health care use of 28,415 children 4–17 years of age for whom complete information for the sociodemographic, health, and health care variables was included in the analysis. The results exclude information for 827 children who had missing data. Because most (92 percent) of the respondents for children were parents, all respondents hereafter are referred to as parents.

The results in this chapter are based on the weighted sample results and represent national estimates for the U.S. noninstitutionalized, civilian population. SUDAAN statistical software was used in all analyses to adjust for the effects of the complex sampling design (Shah, Barnwell, & Bieler, 1997). Chi-square tests were used to assess associations between variables and pairwise t-tests were performed to evaluate differences between estimates. Results are reported as statistically significant when the probability of a test statistic was less than 0.05. Additional information on the survey methods, questionnaires, and sampling procedures of the NHIS are available from the National Center for Health Statistics (NCHS) Web site at http://www.cdc.gov/nchs/nhis.htm.

Questions About Emotional or Behavioral Difficulties

Beginning in 2001, the parent report version of the Strengths and Difficulties Questionnaire (SDQ) (Bourdon, Goodman, Rae, Simpson, & Koretz, 2005; Goodman, 1994) was added to the sample child questionnaire of the NHIS. The SDQ is a multi-question screening instrument that measures MH symptoms as well as impact and burden associated with these symptoms. This analysis focuses on the responses of parents to a single question about the child’s emotional or behavioral difficulties: "Overall, do you think that (sample child) has difficulties in any of the following areas: emotions, concentration, behavior, or being able to get along with other people?" The question on overall difficulties is scored on a 4-point scale, 0 = "No," 1 = "Minor difficulties," 2 = "Definite difficulties," and 3 = "Severe difficulties." The present analysis combines the responses of definite and severe difficulties into a single category.

Questions About Diagnosed Disorders

Parents were also asked questions about specific disorders related to behavior and learning: "Has a doctor or health professional ever told you that (child) had: Attention Deficit Hyperactivity Disorder or Attention Deficit Disorder? Mental retardation? Any other developmental delay? Autism? Down’s Syndrome?" and "Has a representative from a school or a health professional ever told you that (child) had a learning disability?" Children with "any" diagnosed disorder include those with ADHD, mental retardation, autism, Down’s syndrome, other developmental delay, or learning disability. In this analysis, children classified as having a diagnosis of developmental delay include only children with developmental delays other than mental retardation, autism, or Down’s syndrome.

Questions About Use of Health Care and Educational Services

Parents answered questions about three measures of MH service use: (1) the parent’s contact with any MH professional, such as a psychiatrist, psychologist, psychiatric nurse, or clinical social worker, about the child during the past 12 months; (2) the parent’s contact with a general doctor about an emotional or behavioral problem of the child during the past 12 months; and (3) current receipt of special education services for an emotional or behavioral problem. In the questions about MH services, parents were asked about "problems" rather than "difficulties". Both problems and difficulties refer to symptoms that cause some level of functional impairment. Additional measures of health care service use covered in the analysis include: regular use of any type of prescription medication for at least 3 months and a parent’s contact with a medical specialist, defined as a medical doctor who specializes in a particular medical disease or problem (other than obstetrician/gynecologist, psychiatrist or ophthalmologist) about the child during the past 12 months. A parental report of contact with a health care provider does not necessarily indicate that a child was evaluated or treated. In this analysis, the term "contact" refers to a parent either seeing or talking to a health care provider about the child.

Sociodemographic Variables

Parents also provided information about a child’s sex, age, race/ethnicity, family income, family structure, and health insurance coverage. A child’s age is categorized as 4–7 years, 8–10 years, 11–14 years, or 15–17 years. Children under 4 years of age are not included in this analysis since the identification of MH difficulties usually occurs after a child begins elementary school. The question about Hispanic ethnicity was asked before the question regarding a child’s single or multiple race(s). Children classified as Hispanic may be of any race. The categories of "Non-Hispanic white" and "Non-Hispanic black" include only children of a single race. Because the number of children of "other races" (non-Hispanic children of single races other than white or black and non-Hispanic children reported to have more than one race) was small, this category is not shown in the tables.

A child’s family structure is based on the presence or absence of parents (biological, adoptive, step, or foster) in the family. Estimates are shown for families with only a mother present and those with two parents present. Because the number of children in families with only a father present or no parents present was too small to produce reliable estimates, these categories are not shown in the tables. A child’s poverty status is based on the ratio of family income to the federal poverty threshold given family size and composition. The poverty status categories include poor (family income less than 100 percent of the poverty threshold), near poor (family income 100–199 percent of the threshold), and nonpoor (family income 200 percent or more of the threshold). Due to the substantial percentage of children (26 percent) with missing information for family income, unknown values for family income were estimated using a multiple imputation procedure (Schenker et al., 2004).

Health insurance coverage at the time of interview is categorized into three groups: private, Medicaid, and no insurance. Children with private insurance are covered by private plans provided in part or full by an employer or union, or purchased directly. The private insurance category includes managed care plans, other types of government-sponsored insurance such as coverage for military dependents and the combination of both private and Medicaid insurance. Children with Medicaid coverage have coverage only under the State Children’s Health Insurance Program (SCHIP) or other state-sponsored plans. Uninsured children have neither private insurance nor Medicaid. Finally, a child’s residential location was classified by metropolitan status. The definition of the metropolitan status categories corresponds to the 1993 definition by the Office of Management and Budget of a metropolitan statistical area (MSA). The categories include residence in a central city of an MSA, a suburban area in an MSA that is not in central city, and an area outside of an MSA (Office of Management and Budget, 1990).

Results

Prevalence of Emotional or Behavioral Difficulties

Approximately 5 percent of children 4–17 years of age (2.8 million) had parental reports of severe/definite emotional or behavioral difficulties during the past 6 months and 17 percent (9.3 million) had reports of minor difficulties (figure 18.1, table 18.1). A higher percentage of boys than girls had difficulties at both levels of severity (severe/definite and minor). Among boys and girls, the percentage reported to have difficulties increased with age (figure 18.2).

Parents reported difficulties among children 4–7 years of age less often than among children 8–17 years of age (table 18.1).

The prevalence of emotional or behavioral difficulties varied with other characteristics of children and their families (table 18.1). Hispanic children were less likely to have parental reports of difficulties at either level of severity compared with non-Hispanic white or non-Hispanic black children. Non-Hispanic black children were as likely as non-Hispanic white children to have severe/definite difficulties, but were more likely to have parental reports of minor difficulties. The percentage of children in mother-only families with severe/definite difficulties was double the percentage reported for children in two-parent families (8 percent vs. 4 percent). Children in mother-only families were also more often described as having minor difficulties compared with children in two-parent families (22 percent vs. 15 percent).

Children living in poor and near poor families had higher rates of severe/definite and minor difficulties than children in nonpoor families (table 18.1). Nearly twice the percentage of poor children had parental reports of severe/definite difficulties as nonpoor children (7 percent vs. 4 percent). Children with Medicaid coverage had higher rates of difficulties than uninsured children or children with private health insurance. The percentage with severe/definite difficulties was 9 percent of Medicaid insured children compared with 4 percent of privately insured children and 5 percent of uninsured children. The percentage of children with difficulties varied less by the child’s place of residence. Children living in metropolitan areas outside of the central city (MSA/not CC) were less often reported by parents to have severe/definite difficulties than children living either in the central cities of metropolitan areas (MSA/CC) or outside of metropolitan areas (not MSA).

Diagnosed Disorders Related to Behavior or Learning

Overall, 12 percent of children 4–17 years of age (6.8 million) were reported to have been diagnosed with at least one of the following disorders: ADHD, learning disability, mental retardation, autism, Down’s syndrome, or developmental delay. Nearly 7 percent (3.9 million) had ever been diagnosed with ADHD and 8 percent (4.4 million) with learning disability. A substantially lower percentage of children, 3 percent (1.7 million), had ever been diagnosed with developmental delay. As figure 18.3 shows, the percentage of children with ADHD, learning disability, or developmental delay was strongly associated with a child’s level of emotional or behavioral difficulty. Among boys with severe/definite difficulties, 59 percent had ever been diagnosed with ADHD, 48 percent with learning disability, and 21 percent with developmental delay. Among boys with minor difficulties, a substantial percentage had ever been diagnosed with ADHD (22 percent) or learning disability (22 percent), and about 7 percent had ever been diagnosed with developmental delay. Finally, among boys with no difficulties, less than 4 percent had parental reports of any of the diagnoses. Similarly, among girls, diagnosed disorders were most often reported for those with severe/definite difficulties and least often for those with no difficulties.

At all levels of emotional or behavioral difficulties, boys more often had reports of ADHD than girls. Among children with severe/definite difficulties, the percentages of boys and girls with diagnoses of learning disability and developmental delay were similar. Among children with minor difficulties, girls were less often reported to have learning disability, but were as often reported to have developmental delay. Among children with no difficulties, boys more often had parental reports of learning disability or developmental disability.

Use of Mental Health and Other Health Care Services

Overall, 10 percent of children 4–17 years of age (5.4 million) used a MH service. Use of MH services was strongly associated with a child’s level of difficulties (figure 18.4). Among children with severe/definite difficulties, 62 percent had used a MH service: approximately 45 percent had contact with a MH professional, 40 percent had contact with a general doctor because of the child’s emotional or behavioral problems, and about 23 percent received special education services because of emotional or behavioral problems. Among children with minor difficulties, 23 percent had used a MH service: 16 percent had contact with a MH professional, 11 percent had contact with a general doctor because of the child’s emotional or behavioral problems, and less than 5 percent had received special education services because of emotional or behavioral problems. Among children with no difficulties, approximately 4 percent had used a MH service.

Among children with severe/definite difficulties, the relationship between sociodemographic characteristics and use of MH services varied by the type of service (table 18.2). A similar percentage of boys and girls had contact with either a MH professional or a general doctor because of an emotional or behavioral problem. However, boys were more likely than girls to use special education services because of an emotional or behavioral problem. The relationship between a child’s age and MH service use also differed by the type of service. Children 4–7 years of age were less likely than children 8 were less likely 17 years of age to have contact with either a MH professional or receive special education services because of an emotional or behavioral problem. In contrast, children 15–17 years of age were less likely than children 4–14 years of age to have contact with a general doctor because of an emotional or behavioral problem.

Among children with severe/definite difficulties, the percentage of non-Hispanic white children having contact with a MH professional (51 percent) was considerably higher than the percentage of non-Hispanic black or Hispanic children (30 and 39 percent) (table 18.2). Similarly, the percentage of non-Hispanic white children having contact with a general doctor because of an emotional or behavioral problem (44 percent) was higher than the percentage of non-Hispanic black and Hispanic children (25 and 29 percent, respectively). The percentage of children receiving special education services because of an emotional or behavioral problem did not vary by race/ethnicity. A child’s poverty status tended to be associated with the use of health care services, but not the use of special education services. By contrast, a child’s insurance coverage was related to the use of all three types of services. Children with private and public insurance coverage more often had contact with a MH professional or general doctor because of an emotional or behavioral problem than children without insurance. Children with Medicaid received special education services because of an emotional or behavioral problem nearly twice as often (30 percent) as privately insured (19 percent) or uninsured children (18 percent). Neither family structure nor residential location was significantly related to the use of MH services.

While the use of MH services was lower among children with minor difficulties than children with severe/definite difficulties, the overall pattern of use was similar (table 18.2). Parents reported more often that boys received special education services because of an emotional or behavioral problem than girls. A lower percentage of children 4–7 years of age had contact with a MH professional than children 8–17 years of age. A lower percentage of Hispanic children compared with non-Hispanic white children had contact with a mental health professional or general doctor because of an emotional or behavioral problem, and a lower percentage of Hispanic children compared with non-Hispanic black children received special education services because of an emotional or behavioral problem. A higher percentage of children in mother-only families reported using any of the MH services than children in two-parent families. Children with private insurance or Medicaid reported greater use of services because of an emotional or behavioral problem than uninsured children. Children with Medicaid were nearly twice as likely to receive special education services because of an emotional or behavioral problem as privately insured or uninsured children. Use of MH services among children with minor difficulties was unrelated to poverty status or residential location.

Use of other types of health care services also varied with a child’s level of emotional or behavioral difficulty. Among children with severe/definite difficulties, 48 percent used some type of prescription medication and 25 percent had contact with a medical specialist. Among children with minor difficulties, the percentage using each of these services was much lower: 23 percent used prescription medication and 17 percent had contact with a medical specialist. Finally, among children with no difficulties, use of these services was even less frequently reported: 10 percent used prescription medication and 11 percent had contact with a medical specialist.

Discussion

Monitoring the prevalence of child MH symptoms with data from large national health surveys requires the development and validation of brief and reliable measures of child MH. In 2001, a question from the SDQ about a child’s overall emotional or behavioral difficulties was added to the NHIS as a measure of the prevalence of MH symptoms among children (Simpson, Bloom, Cohen, Blumberg, & Bourdon, 2005). Results from a previous study by Goodman (1999) indicated that parental responses to the question on overall difficulties differed markedly for children with and without diagnosed mental disorders. While it is unknown whether parental responses indicating severe/definite emotional or behavioral difficulties can be used as an indicator of a psychiatric disorder causing functional impairment, the overall percentage of children with severe/definite difficulties, approximately 5 percent, is similar to the percentage of children in the Methods for the Epidemiology of Child and Adolescent Mental Disorders (MECA) study reported by parents to have a psychiatric disorder with moderate to severe impairment (5.5 percent) (Shaffer et al., 1996). Another indication that parental reports about difficulties may indicate the presence of impairing MH symptoms is the finding from the present analysis, that nearly 70 percent of the children with reports of severe/definite difficulties had previously been diagnosed as having ADHD, learning disability, or developmental delay.

The associations between parental reports of emotional or behavioral difficulties and a variety of sociodemographic variables also suggest that these reports provide a useful indicator of child MH symptoms. At both levels of severity (severe/definite and minor), more difficulties were reported for boys and fewer difficulties for young children 4–7 years of age. These sex- and age-related differences are similar to findings from several other large-scale epidemiologic studies of child MH such as the Ontario Child Health Survey (Offord et al., 1987), the Great Smokey Mountain Study (Costello et al., 1996), the Virginia Twin Study of Adolescent Behavioral Development (Simonoff et al., 1997), and the British Child Mental Health Survey (Meltzer, Gatward, Goodman, & Ford, 2000).

The large size of the child sample from the 2001–2003 NHIS made it possible to examine the prevalence of MH difficulties and the use of services among children in specific subgroups defined by race/ethnicity, poverty status, and health insurance coverage. Past studies of the association between race and child MH problems have generally reported insignificant differences (Costello et al., 1996; U.S. DHHS, 2001). The results of investigations comparing the MH of Hispanic and non-Hispanic white children have reported, in some cases, more problems among Hispanic children (Achenbach et al., 1990; Glover, Pumarieaga, Holzer, Wise, & Rodriguez, 1999) and, in other cases, similar problems for Hispanic and non-Hispanic children (Vega, Khoury, Zimmerman, Gil, & Warheit, 1995). Results from the 2001–2003 NHIS indicate that parents of Hispanic children less often reported severe/definite difficulties than the parents of either non-Hispanic white or non-Hispanic black children. Whether these ethnic differences in parental reports reflect true variations in child behavior and adjustment is uncertain. The impact of stigma, language difficulties, and barriers to health care are possible factors related to the lower prevalence of reported difficulties among Hispanic children (Glascoe, 2003; U.S. DHHS, 2001).

The significantly higher percentage of poor and near poor children as compared with nonpoor children reported to have severe/definite difficulties mirrors the findings from previous investigations (Costello, 1989; Wadell et al., 2002). The multiple stresses and limited support experienced by children in poor and near poor families may also be a factor that partially accounts for the higher prevalence of difficulties reported for children in mother-only families than children in two-parent families. Access to care is another factor that may facilitate parental recognition of child MH problems (Costello et al., 1998). The higher prevalence of MH difficulties observed among Medicaid insured children compared with privately insured and uninsured children has been documented in previous studies (Witt, Kasper, & Riley, 2003). A number of explanations have been suggested for the increased prevalence of MH difficulties among children with Medicaid: a greater tendency of the families of children with MH difficulties to enroll in Medicaid, the effects of access to care on parental perceptions of MH symptoms, and the adverse effects of poverty on child MH.

A child’s race/ethnicity, poverty status, and health insurance coverage were factors strongly associated with the use of MH services among children with emotional or behavioral difficulties. These results are similar to the findings from other studies that have described much less use of health care services for MH problems among non-Hispanic black, Hispanic, and poor children (Alegria et al., 2002; Cuffe, Waller, Cuccaro, Pumariego, & Garrison, 1995; Cunningham & Freiman, 1996). The additional finding that race/ethnicity and poverty were not associated with the use of special education services for MH problems are also similar to the results of previous research (Witt et al., 2003). These findings suggest that barriers to MH services may be reduced in school settings. The findings about heath insurance coverage and the use of services by children with MH difficulties coincide with results from a number of studies that have documented greater use of MH services by children with private insurance or Medicaid coverage (Farmer Burns, Phillips, Angold, & Costello, 2003; Sturm & Sherbourne, 2001). The observation in the present analysis that children with Medicaid coverage were almost twice as likely to be receiving special education services for MH problems as children with either private insurance or those with no insurance coverage follows a pattern previously described for school-aged children with disabilities (Witt et al., 2003). Medicaid has become an important source of funding for MH services in special education programs as well as services provided by community-based health care professionals (Rodman et al., 1999). Finally, the high percentage of uninsured children with difficulties who do not appear to be receiving any services underscores the continuing importance of this gap in the provision of child MH services (Kataoka, Zhang, & Wells, 2002).

Limitations

Some limitations of the present study should be considered. This analysis relied solely on information reported by parents at a single point in time. Several studies have shown that obtaining information from multiple informants, such as teachers, health professionals, parents, and children, results in a more accurate assessment of child MH symptoms (Achenbach, McConaughy, & Howell, 1987; Canino, Bird, Rubio-Stipec, & Bravo, 1995). Information collected directly from the child may be particularly important for identifying some symptoms of both internalizing and externalizing disorders, especially for adolescents (Verhulst et al., 1997). Further, a parental report in household survey about a child’s emotional or behavioral difficulties may be very different than an evaluation and diagnosis by a MH professional (Flisher et al., 1997). Stigma and socioeconomic factors may lead some parents to minimize or underreport a child’s symptoms (Fendrich , Johnson, Wislar, & Nageotte, 1999; U.S. DHHS, 2001). Moreover, children in the institutionalized population, including those in psychiatric hospitals and juvenile detention facilities, were not included in the NHIS sample. While children in the institutionalized population are more likely to have MH symptoms, the omission from the sample of this small group of children probably had little effect on the estimation of the national prevalence of child MH difficulties (U.S. Census Bureau, 2000).

Another limitation is the reliance on a series of single questions to measure child MH difficulties and service use. The question on overall difficulties does not capture the complexity, impact, and burden associated with a child’s MH symptoms. Similarly, the questions about contacts with MH providers did not ask parents for information about the frequency, types, or quality of treatment that children received for MH problems. Because the NHIS collects information at one point in time, associations observed in the data cannot be used to determine causation. Moreover, since the sociodemographic variables presented in this chapter are intercorrelated, the bivariate associations may not reflect the independent effect of specific variables on the prevalence of MH difficulties and service use.
Currently two validation studies of the SDQ are evaluating how well the items in this instrument predict child MH. One study, directed by Alaattin Erkanli and Jane Costello of Duke University, is comparing the performance of several child MH screening instruments including the SDQ. The other study conducted by Ronald Kessler of Harvard is a clinical calibration study of the SDQ that is part of the adolescent segment of the National Comorbidity Study. Results from both of these studies will provide guidelines for the interpretation of parental reports in the SDQ.

Conclusions

In conclusion, the analysis of data from the 2001–2003 NHIS found that nearly 22 percent of children 4–17 years of age had a parental report of emotional or behavioral difficulties. Approximately 5 percent of children were judged by parents to have severe/definite difficulties. The prevalence of severe/definite difficulties varied with a child’s sex, age, race/ethnicity, family structure, poverty status, health insurance coverage, and residence. Among children with severe/definite difficulties, the prevalence of diagnosed behavioral, developmental, and learning disorders was markedly higher than the prevalence among children with no difficulties. The use of health care and educational services because emotional or behavioral problems was strongly associated with parental reports of emotional or behavioral difficulties. However, even among children with severe/definite difficulties, a substantial fraction did not receive MH services indicating the need for greater access to this type of health care in communities and schools.

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