Confronting barriers

One in five U.S. children and adolescents suffers from a mental disorder.1 However, only 21% of U.S. youth identified as needing a mental health evaluation actually receive services from a mental health professional, leaving approximately 7.5 million U.S. children and adolescents with unmet needs for mental health services.

The data are particularly concerning for ethnic minority youth, who comprise a growing percentage of the U.S. population but are most often at risk for unmet mental health service needs.2–4 For example, African-American youth have been found to have a mental disorder prevalence of 21.9%, but only 3.2% of that group actually used specialty mental health services in a three-month period.5

Studies have explored correlates of service use, such as diagnosis, gender, “urbanicity,” and socioeconomic status.6 Other studies have investigated the role of religion and spirituality in mental healthcare service utilization. These constructs may influence parental decisions and actions regarding service utilization and treatment options (e.g., taking medications or utilizing community-based services recommended by a mental healthcare provider).7,8

African-Americans are at greater risk of poor access to treatment and poor care because of a higher likelihood of being without financial resources. The U.S. Surgeon General has indicated that approximately one in four African-Americans is uninsured, and nearly 22% of African-American families are living below the federal poverty level.9 Because of limited financial resources for prescription drug copays, for office visit fees, to compensate for wages lost to attend appointments, etc., many African-American families might find addressing mental healthcare needs to be a low priority when faced with more “immediate” needs.

For many African-American populations (as well as other ethnic minority groups in the United States) interactions with the healthcare system have been scarred by neglect, abuse, misrepresentation, and exploitation (the most famous case being the Tuskegee syphilis study). For many African-Americans it is difficult to trust a system that has failed and taken advantage of them over and over again. It is difficult to forget being treated as if you were less than a human being (such as with the Tuskegee study). From the authors' clinical and research experiences, documentation of African-Americans experiencing these day-to-day abuses in mental healthcare services is limited, but abuse is nonetheless present.

It might be difficult for European-Americans to understand just how wary African-Americans are about healthcare. With historically greater access to healthcare services, many European-Americans automatically trust the system and providers, which is not the case for African-Americans. And discrimination does not have to be overt; subtle service inequities based on socioeconomic and educational status also act as barriers to healthcare utilization.

As the research focus across the United States increasingly becomes more community-based, more researchers are interested in elucidating the barriers to mental health research and clinical care participation. However, this can be a catch-22, as the culturally diverse often have an appropriate level of skepticism about the provider's/system's intentions, ability, and motivation to respect their boundaries. They often ask, “Why are you now interested in working with me?” Although many clinicians/researchers genuinely may be interested in serving these populations, many African-Americans wonder if the driving force is money, since federal funding stipulates the inclusion of minority groups in research studies.

The impact of these negative past experiences with the healthcare system further affect today's African-American youth because parents with knowledge of misguided and abusive clinical research undertakings are reluctant to allow their youth to participate in clinical research trials.10 Stigma and lack of knowledge regarding the significance of mental healthcare likely solidify negative views.

The Christian church historically has served not only as a place of worship but also as a place to receive support, education, and direction regarding various facets of life, including healthcare decisions. Empirical research indicates that religious faith and the church community have a large effect on African-Americans’ perceptions of the mental healthcare system and service utilization.11,12

The church has provided counseling in a variety of circumstances to its parishioners (e.g., regarding domestic violence, drug abuse, and childhood disorders). This counseling traditionally has been based on spiritual health and religious faith as the means to a healthy mind, body, and spirit. In fact, more research is needed to investigate the role of religion as a source of social support in families of children with mental disabilities. This would assist both the mental healthcare and faith-based communities.

Modern mental health therapies and diagnoses have not been widely accepted by the traditional African-American church, as it is often thought that spiritual health and life contentment represent religious faith and duty in serving God. For example, if one has a mental illness, then one should pray harder and more faithfully to rid oneself of the devil's influence. This traditional belief by many church leaders has created barriers to mental health services for many African-American children and their families. Some church leaders have actively discouraged seeking or receiving mental health services. Also, church leaders passively deter parishioners from mental healthcare services by not endorsing or promoting mental healthcare, while endorsing and promoting physical health maintenance. By not talking in church about mental health's importance, church leaders imply its lack of significance, and thereby further stigma and barriers to appropriate care and diagnosis.

Religious faith and church leaders continue to have a large impact on African-Americans' views of mental healthcare and research. Unfortunately, this fact often is overlooked by the mental healthcare system as a means of increasing access to mental healthcare. To decrease the mental health disparities for African-American youth and their families, mental health professionals must understand the importance of religious and spiritual beliefs for a large percentage of the African-American community. Additionally, the healthcare system must seek ways to work as a team with church leaders to decrease stigma and barriers to mental healthcare.

Tyehimba Hunt-Harrison, MD, is a staff psychiatrist at John Umstead Hospital's Child Psychiatric Institute in Butner, North Carolina, and can be reached at (919) 575-7621.
Tywanda Ellison, PhD, is a postdoctoral fellow in the Department of Psychiatry at the University of North Carolina at Chapel Hill School of Medicine and can be reached at (919) 843-9989.

References

1. Costello EJ, Angold A, Burns BJ, et al. The Great Smoky Mountains Study of Youth. Goals, design, methods, and the prevalence of DSM-III-R disorders. Arch Gen Psychiatry 1996; 53:1129-36.
2. Shaffer D, Fisher P, Dulcan MK, et al. The NIMH Diagnostic Interview Schedule for Children Version 2.3 (DISC–2.3): Description, acceptability, prevalence rates, and performance in the MECA Study. Methods for the Epidemiology of Child and Adolescent Mental Disorders Study. J Am Acad Child Adolesc Psychiatry 1996; 35:865-77.
3. Kessler RC, McGonagle KA, Zhao S, et al. Lifetime and 12-month prevalence of DSM–III–R psychiatric disorders in the United States. Results from the National Comorbidity Survey. Arch Gen Psychiatry 1994; 51:8-19.
4. Cunningham PJ, Freiman MP. Determinants of ambulatory mental health services use for school-age children and adolescents. Health Serv Res 1996; 31:409-27.
5. Angold A, Erkanli A, Farmer EM, et al. Psychiatric disorder, impairment, and service use in rural African American and white youth. Arch Gen Psychiatry 2002; 59:893-901.
6. Diala CC, Muntaner C, Walrath C, et al. Racial/ethnic differences in attitudes toward seeking professional mental health services. Am J Public Health 2001; 91:805-7.
7. Goffman E. Frame Analysis. Cambridge Mass.:Harvard University Press; 1974.
8. Patterson JM. The role of family meanings in adaptation to chronic illness and disability. In: Turnbull, Patterson, Behr, et al, eds. Cognitive Coping, Families, and Disability. Baltimore:Paul H. Brookes Publishing; 1993.
9. U.S. Department of Health and Human Services. Mental Health: Culture, Race, and Ethnicity—A Supplement to Mental Health: A Report of the Surgeon General. Rockville, Md.: U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services; 2001. Available at: https://www.surgeongeneral.gov/library/mentalhealth/cre/sma-01-3613.pdf.
10. Edwards CL, Johnson S, Feliu M. Diversity and cultural competence, part 2: Issues of practical conceptualization and implementation. North Carolina Psychologist 2003; 55 (6): 1-13.
11. Ellison T, Simeonsson R, Skinner D, et al. Perceptions of Social Support and Childhood Disability Among Families of Children with Disabilities [dissertation]. University of North Carolina at Chapel Hill; 2006.
12. Skinner D, Correa V, Skinner M, Bailey DB Jr. Role of religion in the lives of Latino families of young children with developmental delays. Am J Ment Retard 2001; 106:297-313.

Sidebar

ADHD in the African-American Community

by E. Clarke Ross, DPA The House of Delegates of the National Medical Association (NMA), which promotes the collective interests of physicians and patients of African descent, passed a resolution at its July 2005 annual conference on attention deficit hyperactivity disorder (ADHD). The resolution helps to refute the contention, often disseminated in the media, that the disorder either does not exist or is overdiagnosed in African-Americans. The resolution reads:

• ADHD exists, it occurs in African-American children and adults, and can be detrimental to African-Americans.

• There is evidence-based medicine to support the contention that ADHD is an actual disorder.

• African-American children and adults directly and indirectly may suffer a disproportionate burden because of ADHD.

• African-American children deserve the highest quality of psychiatric medical care including optimal assessment, evaluation, and diagnosis, including a full, unrestricted open access to the best available medication for the treatment of ADHD and depression.

At the time of the NMA's public release of the resolution, Rahn Bailey, MD, chair of the NMA Section on Psychiatry and Behavioral Sciences, stated:

We now have, for the first time, a leading organization of African-American physicians asserting that ADHD is a neurobiological disorder that can adversely affect African-Americans. I have long thought that untreated ADHD very well could be one reason why we are overrepresented in special education services and the criminal justice system. The great tragedy, though, is that the news media have arrived at a different and, I might add, very unscientific finding that African-Americans are being overdiagnosed.

Passage of the resolution was the culmination of work that began in 2004 when CHADD (Children and Adults with Attention-Deficit/Hyperactivity Disorder) convened leading experts on ADHD in the African-American community to develop a consensus statement on the disorder's effects on African-Americans. CHADD and conference leaders (including Dr. Bailey; M. Christopher Griffith, MD; Karen Taylor-Crawford, MD; Diane Buckingham, MD; and Peter Jensen, MD) also organized a 2004 Congressional Black Caucus (CBC) briefing hosted by Reps. Sheila Jackson Lee (D-Texas) and Donna M. Christensen (D-Virgin Islands). Former U.S. Surgeon General David Satcher, MD, spoke at the CBC briefing. Following the briefing, Dr. Bailey took the consensus statement to the NMA Section on Psychiatry and Behavioral Sciences, which recommended the resolution to the NMA governing body.

In 2001, the Surgeon General released a report documenting that African-American children were less likely than white youth to receive quality mental health services. Since then, CHADD has been proactive in supporting the Surgeon General's recommendations through its work with the NMA.

CHADD and NMA were spurred to action when in July 2003 the National Association for the Advancement of Colored People (NAACP) passed a resolution titled “The Concerns and Discrepancies in Special Education and the Use of Psychotropic Drugs on Children and Teens.” The NAACP resolution adopted language recommended by a Los Angeles–based church and included clauses such as:

Whereas, there are documented incidents of highly negative consequences in which psychiatric prescription drugs have been utilized for what are essentially problems of discipline which may be related to lack of academic success, and it has been suggested that recent incidents of school violence and other occasions of violence are the result of children being unnecessarily medicated by Schedule II and other psychotropic drugs….

[L]earning disabilities involved subjective diagnoses, not objective medical diagnoses. There is no definitive physically based definition of learning disability, and the terms “Serious Emotional Disturbances,” “Emotional Disturbance” and “Specific Learning Disabilities” have no scientific merit, are subjectively determined, and….

[T]here is controversy and diverse medical opinion about ADHD and learning disorders and that according to medical opinion, such problems can be attributed to various causes such as environmental toxins, allergies, nutritional deficiencies, and many other similar causes….

Now that the NMA House of Delegates has spoken, hopefully the public's focus will be on promoting access to science-based assessments and treatments for ADHD.

E. Clarke Ross, DPA, is CEO of Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD). He is also a member of Behavioral Healthcare's Editorial Board.