Improving Treatment in Minority Children With Attention Deficit/Hyperactivity Disorder

Introduction

Attention deficit/hyperactivity disorder (ADHD) is a prevalent and disabling disorder that manifests in childhood. It presents with high levels of inattention, impulsiveness, and hyperactivity that often goes untreated among minority children.^1,2 Racial differences among genes might confer distinct genetic susceptibilities as well as distinct phenotypical expressions of ADHD. ³ Poverty, stigma, language, and cultural factors have all been implicated as culprits in preventing access to ADHD care among minority children in the United States.^2,4 Parental beliefs, knowledge, and attributions regarding their children’s difficult behaviors also affect ADHD recognition and treatment. ⁵ Parenting practices and cultural views of normative child behaviors appear to differ among ethnic groups. ⁶ For example, Hispanics place a high value on children being “respectful and obedient,” and it is hard for children with ADHD to fulfill this cultural expectation. ⁷ Cultural beliefs may also affect parental perception of ADHD symptoms as well as adherence to proposed treatments.^5,6 African American parents, for instance, appear less receptive to pharmacological treatment of ADHD relative to Caucasians.^4,8 However, irrespective of culture, the presence of a child with ADHD has a deleterious effect on family functioning. ⁹ These children often exhibit troublesome behaviors causing substantial challenges for parents. Overall parents appear to have low confidence in their ability to modify the disruptive behaviors of children with ADHD and often engage in maladaptive responses. ¹⁰

Evidence-based interventions for childhood ADHD includes parent training in behavioral principles as well as pharmacotherapy. Methylphenidate and other psychostimulant medications show strong empirical support for the treatment of ADHD. ¹¹ Employing data from the multimodal treatment study of ADHD (MTA) (n = 567) Jones et al ⁶ found that children from different ethnicities did not differ in their response to treatment. In this study, ethnic minority families collaborated with the investigators and benefited from the treatment. ⁶ However, for clinicians working in naturalistic clinical settings, implementing these positive findings remains a challenge. Despite treatment efficacy, African American children and Hispanic children in poor urban communities have low rates of ADHD treatment. ² Furthermore, once identified by the health care system, minority children with ADHD remain in treatment at much lower rates than their Caucasian counterparts.^2,12 This state of affairs is problematic because ADHD is a very treatable disorder, which often persists into adulthood, and if left untreated, can cause long-term difficulties. ¹³

Being able to reach minority families whose children have ADHD but who are not seeking treatment requires culturally informed strategies. The cultural formulation interview (CFI) from the DSM-5 can be used to elicit cultural factors that may affect health care behaviors. ¹⁴ The ETHNIC model, originally developed for older patients, is a tool that can be adapted for use in children with ADHD. ¹⁵ Additionally, the Collaborative Care Model (CCM) has shown promise in targeting minority youth with ADHD. In this article, we outline the epidemiology of ADHD among African American and Hispanic children, barriers to diagnosis and treatment, and ongoing efforts to improve treatment of ADHD for these children.

Prevalence of ADHD Among African American and Hispanic Populations

ADHD is a disabling disorder than manifests itself in childhood and can be easily recognized and treated. ¹¹ Unfortunately, minority children are less likely than Caucasian children to receive an ADHD diagnosis. ² Recent data from the Centers for Disease Control and Prevention reported the prevalence of ADHD among children aged 4 to 17 years according to ethnicity as follows: 11.5% among Caucasian children, 8.9% among African American, and 6.3% among Hispanic children. ¹⁶ Other studies have confirmed lower rates of diagnosis in the African American and Hispanic populations, which in turn leads to lower rates of treatment.^8,17,18 This occurs despite studies showing that African American children compared with Caucasian children have a higher prevalence of ADHD symptoms and rates of African American college students who reported symptoms consistent with a DSM-IV diagnosis exceeded that of Caucasian students on all 3 subtypes of ADHD.^19-22

Diagnosis of ADHD among minority children may be largely influenced by a parent’s perception of their child’s behavior. ⁴ Data has shown that ADHD diagnosis by parental report is more common among Caucasians than among African American and Hispanic populations. ²³ Bussing ⁴ has demonstrated that African American parents compared with Caucasian parents appear less likely to express concerns about ADHD-related school problems.^5,24 The disparities among minorities with ADHD is not only limited to diagnosis but also medication management. Among children diagnosed with ADHD, racial/ethnic minorities were less likely than Caucasians to be taking medication for the disorder. ²

Barriers to Diagnosis and Treatment

Efforts to explain why Hispanic and African American children with ADHD are diagnosed less frequently and are less likely to receive treatment than Caucasians have led to several theories. One explanation is that minority parents tend to be socioeconomically disadvantaged and financial strain, along with lack of insurance, can certainly limit access to care.^8,25 Overall rates of insurance for adults have been reported to be lower for Hispanic than for Caucasian or African American populations. ²⁶ Among Hispanics lower rates of insurance may be due to unfamiliarity with the system and the overall issue of citizenship. Without citizenship, many Hispanic individuals are unable to qualify for insurance.^27,28 However, African American individuals with ADHD also have limited access to the health care system, largely because of lack of insurance and high out-of-pocket costs when compared with Caucasian individuals. ²⁹

Despite the financial barriers to care, before seeking help, parents must first identify their child’s disruptive behaviors as problematic. This is influenced by a parent’s overall knowledge about ADHD and their cultural attitudes about behaviors. Many minority parents are unsure of the potential causes and treatments of ADHD and are less likely to make the connection between poor performance at school and ADHD. ⁴ Many minority parents have a limited knowledge and misperceptions about ADHD. ⁵ Among them is a common belief that ADHD will disappear after puberty, despite there being evidence that ADHD persists into adulthood for most affected individuals.^3,4,5 This belief leaves parents unaware that ADHD symptoms persist and change over time with inattention becoming prominent as a person matures.^30,31

A parent’s cultural view toward appropriate childhood behaviors and parental beliefs regarding ADHD symptoms will also affect health care–seeking behaviors. Specifically, the extent to which the symptoms of ADHD are perceived as a problem by the parents and others in their social network influences parental threshold to seek care. Dos Reis et al ³² conducted a study that examined the experience of a sample of African Americans who came to terms with their child’s ADHD before seeking care. They reported that the decision process to seek care occurs in stages: (a) identification of the child’s ADHD symptoms and behaviors as problematic; (b) understanding that these problems affect their child’s schooling, ability to self-regulate, follow directions, and family relationships; and (c) acceptance of the need to implement disciplinary changes and homework assistance. In practice, there is wide variability where parents are in this trajectory. The study showed the African American sample’s reluctance to view the behaviors as problematic or to accept the need for care prolonged initation of treatment for several years. ³²

Parenting practices also vary across cultures and can affect a parent’s perception of problematic behaviors. Available data show that African American parenting practices are more consistent with authoritarianism—that is, telling their children exactly what to do. This type of parenting is associated with children who do better socially and academically.^33,34 In Caucasian children, authoritative parenting—that is, providing rules in a flexible manner, seems associated with better self-regulation. ⁶ While the evidence on optimal parenting style for Hispanic parents is limited, certain cultural values may influence beliefs about ADHD. Lawton et al ³⁵ conducted a study to investigate the role of acculturation and cultural values of familism, respect, spirituality, and traditional gender roles in explaining parental beliefs about ADHD in a sample of Hispanic parents. They found that the cultural values of familism and traditional gender roles accounted for 30.5% of the total variance in sociological/spiritual beliefs about ADHD. ³⁵ Despite these differences in parenting among different cultures and ethnicities, Modesto-Lowe et al ⁹ reviewed cross-national data, which showed that the presence of a child with ADHD has a deleterious effect on parents and family functioning irrespective of culture. ⁹ Parents of children with ADHD are more likely than controls to believe that they have little control over their children’s behaviors. When children tend to be oppositional, parents less likely to be warm and more likely to engage in maladaptive parenting. ⁹

Diagnosis and treatment of ADHD is influenced by financial, cultural, and parental views as discussed above. However, specifically for Hispanic children a diagnosis of ADHD may also be influenced by language. Spanish is the primary language of many Hispanic families and language barriers play a large role in communicating specific symptoms. ³⁶ Lack of Spanish versions of assessment measures contributes to underutilization of mental health services for Hispanic children with ADHD. ³⁷ Gerdes et al ³⁸ examined the cultural appropriateness of the Disruptive Behavior Disorders Rating Scale, a commonly used, parent report measure of ADHD. Results suggested that the inattentive and hyperactive/impulsive subscales are psychometrically sound; however, the hyperactive/impulsive subscale may not be culturally appropriate for some Hispanic families, particularly those who are less acculturated and therefore may not be diagnostically useful. ³⁸

Finally, race also plays a factor in perceptions and attitudes toward ADHD and treatment among African American and Hispanic families when compared with Caucasian families.^39,40 Perceived discrimination and stigmatization related to race naturally influences care. African Americans have long experienced social, educational, and economic disadvantages when compared with Caucasians and historically, the African American population has been mistrustful of the medical community, especially following the Tuskegee experiment.^41,42 A Harris Interactive Poll demonstrated that 36% of African American parents and 19% of Hispanic parents reported that race could compromise the care provided for their children with ADHD and more than half of parents in both groups attributed lack of treatment to fear that their children would be negatively labeled by the ADHD diagnosis. ⁴³ Despite these myriad challenges, the medical community is starting to discover innovative ways to address these problems.

Interventions

Parental beliefs about the etiology and solution to ADHD symptoms and impairments play a role in shaping care-seeking behaviors. ⁴⁴ For instance, parents may view their child’s behaviors as problematic, but may think it is temporary—a phase induced by environmental or emotional circumstances. In such cases, counseling with their church pastor may be considered the best option. ⁴⁵ Physicians must recognize that patients enter health care systems from a variety of cultural traditions or levels of acculturation into main stream values. ⁴⁶ Providers need to recognize that they also bring their own cultural views and beliefs to medical encounters and need to look for opportunities to be culturally sensitive whenever there is a provider-patient cultural mismatch. ⁴⁶ Therefore, the purpose of the Outline for Cultural Formulation (OCF) and CFI is to help clinicians engage in meaningful conversations with their patients so that they can understand where he or she is coming from culturally speaking.^1,14

The DSM-IV OCF organized clinical information in 4 domains: (a) cultural identity of the individual; (b) cultural explanations of illness; (c) cultural interpretation of psychosocial stressors, supports, and levels of functioning; and (d) cultural elements of the patient-clinician relationship. Information from these domains was meant to influence diagnosis and treatment and was to be summarized and synthesized in a fifth section to provide an overall formulation. ¹ However, use of the OCF was inconsistent and raised questions about the need for guidance on implementation, training, and application in diverse settings. To address this need, DSM-5 introduced a CFI that streamlined the process of data collection for the OCF. ⁴⁷ The CFI is a set of 16 questions that clinician may use to obtain information about the impact of culture on key aspects about an individual’s presentation and beliefs about treatment. The term culture refers to the values, knowledge, and practices that an individual derives from being a member of diverse social groups; it incorporates aspects of an individual’s background, development, and experiences; and takes into account an individual’s perspective and that of family, friends, and community members, which may influence the patient’s illness experience. The CFI is a person-centered approach to cultural assessment that is designed to avoid stereotyping and helps the clinician understand how the patient views his or her illness and how he or she may seek help and view treatment. ¹⁴

Another culturally sensitive intervention, the ETHNIC(s) model, was proposed by Kobylarz et al. ¹⁵ This model is meant to elicit cultural understanding of medical symptoms, which can be employed in the context of ADHD. E—Explanation: What do you think your child has? This question tackles how parents may perceive ADHD symptoms. It is important to recognize that ADHD may be a source of shame if it is perceived as a sign of parental weakness or shortcomings. T—Treatment: What have you tried? Hispanics, for example, maintain a strong family orientation that may make it difficult to look for care. H—Healers: they are an appropriate source of care for some Hispanic families. ³⁹ African American parents may feel more comfortable in seeking care from their church.^45,48 N—Negotiate: How do you think I can help? The provider may want to consider offering a menu of options, such as parent training, pharmacotherapy, or a combination. I—Implement: What interventions are available? Psychostimulants may be the treatment of choice for ADHD depending on patient receptivity. C—Continue: stick to the plan and Collaborate: How can we work together? If receptivity to a psychostimulant is low, consider atomoxetine, if clinically appropriate. ¹¹ Also consider cultural adaptations to parent training, which has been shown to be helpful in Hispanic families. ⁴⁹

Another approach to navigating care within the minority population is the CCM. Guevara et al ⁵⁰ sought to identify systematic problems in coordinating care for inner-city minority youths with ADHD. He discovered five overarching themes that contributed to this fragmentation in care, which are (a) a lack of consensus about who should oversee care; (b) changes in health care providers or teachers; (c) uncertainty in the diagnosis, insufficient training, and few resources; (d) distrust and blame that emerged when relationships among people who care for the child were absent or otherwise inadequate; and (e) lack of support from employers, friends, and family to engage in collaborative care. ⁵⁰ A study conducted by Meyers et al ⁵¹ in Texas examined the CCM and its benefit in caring for Hispanic children with ADHD. The CCM involved a triad of a care manager who was a liaison between the treating pediatrician and consulting psychiatrist. Care managers were native Spanish-speaking social workers. Children involved in the model showed significant reductions in ADHD symptoms, and parents were overall satisfied with the CCM. ⁵¹ The CCM addressed many of the factors contributing to fragmented care discovered in Guevara’s study.

Conclusion

ADHD is a very treatable disorder that manifests itself in childhood. If left untreated ADHD may continue to manifest itself into adulthood causing social, occupational, and interpersonal difficulties. Although African American and Hispanic populations appear to have similar rates of ADHD, they are less likely to be diagnosed and be treated for ADHD. Financial barriers, language barriers, differing cultural views regarding ADHD behaviors, and differing parental views and practices are among the factors that influence the diagnosis and treatment of ADHD among African American and Hispanic children. The goal of culturally sensitive interventions, like the CFI, the ETHNIC model, and the CCM, is to help identify these barriers to diagnosis and treatment and then address those barriers so that children and adults may receive proven, effective treatment for their ADHD symptoms. The ultimate goal is to help break down stereotypes so that African American and Hispanic children and adults with ADHD have the possibility of leading full and productive lives.