By Monnica Williams, PhD & Marlena Debreaux, MA
Monnica Williams, PhD is an Associate Professor at the University of Connecticut, in the Department of Psychological Sciences. She conducts research on the phenomenology, assessment, and treatment of obsessive compulsive disorder (OCD); ethnic minority mental health and disparities; and PTSD with a focus on racial trauma.
Marlena L. Debreaux, MA is a Research Assistant at the University of Louisville, Center for Mental Health Disparities, in the Department of Psychological & Brain Sciences. She conducts research on anti-racism interventions and ethnic identity development in African American youth.
Editor’s Note: This article is part of a newly launched “Diversity Initiative” at the IOCDF. Our goal is to become an organization whose reach and impact is as wide reaching as OCD itself. Dr. Monnica Williams is an IOCDF grant award recipient who, in 2009, wanted to better understand how to reach out and include the African American population affected by OCD. Below is a summary of her findings. Please continue to look for additional resources from the IOCDF specifically designed for individuals from a diverse background who are affected by OCD.
– Jeff Szymanski, PhD
This article was initially published in the Fall 2016 edition of the OCD Newsletter.
Much progress has been made in the understanding and treatment of obsessive compulsive disorder (OCD), but not all segments of our society have benefited from these advances. OCD in ethnic minority groups has been, and continues to be, a neglected area of research.
Ethnic Minority Inclusion in OCD Research and Treatment
In 1993, the National Institutes of Health (NIH) issued a mandate that funded research must include adequate participation by racial and ethnic minority groups, and researchers were required to include in their proposals strategies by which they would achieve diversity in their samples. Nonetheless, our own comprehensive review of the literature found widespread ongoing exclusion (1, 2). Among nearly all major clinical trials conducted in North America, ethnic minorities were either underrepresented or minority participation was not reported at all. For example, African Americans comprised less than 2% of all participants in OCD randomized trials, despite making up 13% of the US population. Researchers have not followed NIH guidelines regarding inclusion of special populations, and greater inclusion of ethnic minorities is essential to fully understand OCD in non-White populations. Minority inclusion in specialized treatment for OCD is likewise inadequate. For example, we recently examined the demographics of OCD patients over a 13-year span at Rogers Memorial Hospital and found that only 6.7% were ethnic or racial minorities and only 0.9% were African American (3).
African Americans and OCD
Earlier work conducted with non-clinical samples of African Americans noted differences in reports of contamination anxiety and worries about animals. This research was interesting, but it was not clear if the findings would generalize to African Americans with OCD. Very few studies included African Americans diagnosed with OCD, and so researchers could only draw tentative conclusions from non-clinical student or community samples. Other than a few encouraging case studies (4, 5) and one naturalistic (observational) study (6), there were no other published studies prior to 2008 that focused on the symptom presentation, assessment, or treatment of African Americans with an OCD diagnosis.
Many wondered if it was even possible to identify and recruit African Americans with OCD. There were some concerns that low research participation in this group was because African Americans were not interested in treatment, that OCD symptoms were perhaps less impairing, or that the prevalence rate was lower. It seemed there must be a plausible explanation, but studies to date had yet to uncover any verifiable information regarding OCD in African Americans.
Using data from the National Survey of American Life (NSAL) epidemiological study, Himle and colleagues demonstrated that African Americans were suffering with OCD in the exact same numbers as the larger US population, but were less likely to receive treatment. Even among those who were able to access clinical care, few received specialized treatment and only 20% were using an SRI medication (7).
These findings were compelling, but left us with even more questions. If the prevalence was the same, what factors were keeping African Americans from finding help? Did African Americans have different types of symptoms, which could potentially lead to an incorrect or missed diagnosis? Were there aspects of African American culture that discouraged treatment-seeking? Were there obstacles in the mental health care system that made it difficult to find help?
These questions could only be answered through an in-depth study of African Americans with OCD, and the International OCD Foundation (IOCDF) made it possible with a generous research grant award in 2009 for a study entitled “African-Americans with OCD: Reducing Barriers to Diagnosis and Treatment & Facilitating Effective Treatment for Everyone.”
Recruitment of African Americans
Careful data collection was crucial for the recruitment of a population that by all accounts was invisible. We allocated a portion of the budget to outreach and advertising so we would be sure to find our target population, and we carefully kept track of which initiatives worked. We reached out to community organizations, discussed the study on local radio stations, ran ads on buses and the Internet, and placed ads in community newspapers. Print advertisements featured images of African Americans and verbiage that directly addressed our audience.
Many African Americans are uncomfortable participating in research due to ongoing experiences of discrimination and other difficulties. There is a cultural memory of abuses such as the US Public Health Service (USPHS) Syphilis Study at Tuskegee, which continues to affect medical decision-making today (8), and more recent research abuses, such as the Baltimore Lead Paint Study, which also disproportionality affected minorities (9). To reduce possible fears associated with medical research, our study minimized the use of terms like “research” in favor of “project” or “study”.
We identified and assessed 75 African American adults with OCD. Our project’s first paper, published in Contemporary Clinical Trials, provided a road map to facilitate improved minority participation in future studies (10). Key recruitment techniques included hiring clinicians who were members of the targeted communities, culturally specific advisements, meaningful incentives for participants, and training in cultural competence for all project staff (11). No longer will those conducting OCD research need to wonder if they can find African Americans. Now every study is able to diversify their sample by building on our work funded by the IOCDF..
Barriers to Treatment
Recruitment into research is only a part of the problem, as one of our overarching goals has been to enable everyone with OCD to obtain treatment. We found that there are many barriers to treatment among African Americans with OCD, including the cost of treatment, stigma/shame associated with receiving treatment, fears of therapy, believing that the clinician will be unable to help, feeling there is no need for treatment, and treatment logistics (12).
Among our lower income participants, problems with the community mental health system were an obstacle, including a low priority for the diagnosis of anxiety disorders in these clinics, and a genuine lack of community mental health providers sufficiently trained to provide OCD treatment. There were also issues concerning both the recognition of OCD symptoms as well as symptoms not being reported to health care providers. Additionally, there were some cultural issues noted among our sample, including prohibitions against mental health care and a propensity for viewing anxiety as a spiritual problem to be resolved through religious outlets. However, the most prevalent issue volunteered by our participants was that the person did not realize he or she had a disorder or, if they did realize, that there was a treatment for it.
One participant noted, “I was just embarrassed. Getting this type of help has, and continues to be, like a sore thumb in the African American community.” Another said, “I was unaware, deluded, or in denial about the level of impact my condition had on life.”
We subsequently compared the concerns expressed by our sample to a previous online study of barriers to treatment among White Americans (13). While there were no group differences in worries about cost of treatment, shame, and stigma, African Americans were significantly less likely to know where to go for help and almost a quarter expressed fears about discrimination. These issues are therefore uniquely important to long-term goals concerning outreach and treatment for African Americans.
Although ours was not a clinical treatment study, treatment was discussed with all participants. The vast majority expressed an interest in being treated, and a notable proportion attempted to obtain or even started treatment during the follow-up period. Unfortunately, many who expressed interest were unable to obtain it, thus an important avenue for future work will be removing these barriers.
It is important to accurately understand symptom differences in African Americans because patients who do not meet the most common presentations (i.e., excessive washing and overt repetitive checking) may not be quickly identified by medical professionals. Research shows that African Americans are consistently over diagnosed with psychotic disorders and more likely to be hospitalized, even after controlling for severity of symptoms and income (14). Given the bias toward a psychotic diagnosis for this group, it is possible that African Americans with the most severe OCD, especially those with unusual obsessions or compulsions, may be misdiagnosed as psychotic (15, 16). Effective treatments for OCD are typically very different than those for psychotic disorders. Thus, it is critical that clinicians have a good understanding of OCD when assessing and treating patients in this ethnic/racial group.
To this end, we examined the specific OCD symptoms reported by participants and compared these to symptoms reported by African Americans in the NSAL study (17). Although the NSAL dataset provided fewer specific details about OCD symptoms, we were able to make some broad comparisons to aid us in understanding this disorder in African Americans nationally.
We found six symptom dimensions, which were similar to those of previous studies in primarily White samples. These dimensions included contamination/washing, hoarding, sexual obsessions/reassurance, aggression/mental compulsions, symmetry/perfectionism, and doubt/checking. African Americans with OCD reported more contamination symptoms and were twice as likely to report excessive concerns with animals as White patients with OCD, which is consistent with studies conducted with non-clinical samples.
We also studied hoarding symptoms in African Americans with OCD. African Americans with both OCD and hoarding behaviors tended to earn less money, have lower levels of educational attainment, and are more likely to rely on a spouse or partner for financial support than those without hoarding symptoms. Hoarders were also more likely to have comorbid mood and substance abuse disorders while non-hoarders were more likely to endorse anxiety-related psychopathological symptoms. Hoarders were also more likely to experience slowness, indecisiveness, and pathological doubting compared to non-hoarders. These differences illustrate that hoarding is a related yet separate disorder in African Americans, that may involve increased disability (18).
The lack of diversity in the initial development of most OCD assessment measures has made the diagnosis of African Americans more difficult for clinicians who do not have an advanced knowledge of cultural differences. Through the grant awarded by the IOCDF, we have been able to examine the properties of three different clinical measures of OCD in African Americans: the Obsessive Compulsive Inventory-Revised (OCI-R), the Yale-Brown Obsessive Compulsive Scale (Y-BOCS), and the Structured Clinical Interview for the DSM-IV Axis I (SCID).
We found that while the SCID was not a reliable method to determine the presence of OCD in African Americans (19), other measures like the Y-BOCS (20) and the OCI-R (21) showed good validity when compared to related measures of OCD in African Americans. African American students in a control group reported more contamination concerns when compared with White students. This cultural difference has led to higher cut off scores for African Americans in order to meet diagnostic criteria in the OCI-R.
The data collected from this study has many implications that could be important to future research. We can use what we have learned about recruitment to ensure minority inclusion in future research studies. It is clear that one priority is to raise awareness within the African American community about OCD, improve knowledge of effective treatments, and educate more providers so that treatments are available and accessible in underserved communities.
However, we have yet to extend this work to aid in the understanding of African American children with OCD, even though youth with OCD are at an increased risk of depression, academic problems, family problems, and isolation. Minority children with OCD are underrepresented or absent from treatment centers and research studies, although evidence suggests that OCD may be particularly persistent in these groups. In fact, to date there is not one published research study focused on African American children or adolescents diagnosed with OCD (22). Thus, there is still much work that needs to be done.
Read more about this work at:
Williams, M. T., Debreaux, M., & Jahn, M. (in press). African Americans with obsessive-compulsive disorder: An update. Current Psychiatry Reviews. doi: 10.2174/1573400512666160602124146
- Williams, M., Powers, M., Yun, Y. G., & Foa, E. B. (2010). Minority Participation in Randomized Controlled Trials for Obsessive-Compulsive Disorder. Journal of Anxiety Disorders, 24(2): 171-177.
- Wetterneck, C., Little, T., Rinehart, K., Cervantes, M. E., Hyde, E., & Williams, M. T. (2012). Latinos with Obsessive-Compulsive Disorder: Mental Healthcare Utilization and Inclusion in Clinical Trials. Journal of Obsessive-Compulsive & Related Disorders, 1(2): 85-97.
- Williams, M. T., Sawyer, B., Leonard, R. C., Ellsworth, M., Simms, J. V., & Riemann, B. C. (2015). Minority Participation in a Major Residential and Intensive Outpatient Program for Obsessive-Compulsive Disorder. Journal of Obsessive-Compulsive & Related Disorders, 5: 67-75.
- Hatch, M. L., Friedman, S., & Paradis, C. M. (1996). Behavioral treatment of obsessive- compulsive disorder in African Americans. Cognitive and Behavioral Practice, 3(2): 303-315.
- Williams K.E., Chambless D.L., & Steketee G. (1998). Behavioral treatment of obsessive-compulsive disorder in African Americans: clinical issues. Journal of Behavior Therapy and Experimental Psychiatry. 29(2):163-170
- Friedman, S., Smith, L.C., Halpern, B., Levine, C., Paradis, C., Viswanathan, R., & Ackerman, R. (2003). Obsessive-compulsive disorder in a multi-ethnic urban outpatient clinic: Initial presentation and treatment outcome with exposure and ritual prevention. Behavior Therapy, 34(3): 397-310.
- Himle, J. A., Muroff, J. R., Taylor, R. J., Baser, R. E., Abelson, J. M., Hanna, G. L., & Jackson, J.S. (2008). Obsessive-compulsive disorder among African Americans and blacks of Caribbean descent: Results from the national survey of American life. Depression and Anxiety, 2(12): 993- 1005.
- Gamble, V. N. (1997). Under the shadow of Tuskegee: African Americans and health care.American Journal of Public Health.87(11): 1773-1778.
- Spriggs, M. (2004). Canaries in the mines: children, risk, non-therapeutic research, and justice.Journal of medical ethics,30(2): 176-181.
- *Williams, M. T., Proetto, D., Casiano, D., & Franklin, M. E. (2012). Recruitment of a Hidden Population: African Americans with Obsessive-Compulsive Disorder. Contemporary Clinical Trials, 33(1): 67-75.
- *Williams, M. T., Tellawi, G., Wetterneck, C. T., & Chapman, L. K. (2013). Recruitment of Ethnoracial Minorities for Mental Health Research. The Behavior Therapist, 36 (6): 151-156.
- *Williams, M. T., Domanico, J., Marques, L., Leblanc, N., & Turkheimer, E. (2012). Barriers to treatment among African Americans with obsessive-cumpulsive disorder. Journal of Anxiety Disorders, 26(4): 555-563.
- Marques, L., LeBlanc, N. J., Weingarden, H. M., Timpano, K.R., Jenike, M., & Wilhelm, S. (2010). Barriers to treatment and service utilization in an internet sample of individuals with obsessive-compulsive symptoms. Depression and Anxiety, 27(5): 470-475.
- Snowden, L. R., Hastings, J. F., & Alvidrez, J. (2009). Overrepresentation of Black Americans in psychiatric inpatient care. Psychiatric Services, 60(6): 779-785.
- Hollander, E., & Cohen, L. J. (1994). Obsessive–compulsive disorder. In: S.Friedman (Ed.), Anxiety disorders in African-Americans (pp. 185–202). New York: Springer Publishing Co.
- Ninan, P.T. & Shelton, S. (1993). Managing psychotic symptoms when the diagnosis is unclear. Hospital and Community Psychiatry, 44(2): 107-108.
- Heeringa S. G., Wagner J., Torres M., Duan N., Adams T., & Berglund P. (2004). Sample designs and sampling methods for the Collaborative Psychiatric Epidemiology Studies (CPES). International Journal of Methods in Psychiatric Research. 13(4):221 –240.
- *Williams, M. T., Brown, T., & Sawyer, B. (in press). Psychiatric comorbidity and hoarding symptoms in African Americans with obsessive-compulsive disorder. Journal of Black Psychology.
- *Davis, D. M, Chasson, G., Combs, J., & Williams, M. T. (2013). The Utility of the SCID in Assessing Obsessive-Compulsive Disorder in African Americans. Presented at the Association of Behavioral and Cognitive Therapies, Nashville, TN. (related manuscript under review)
- *Williams, M. T., Wetterneck, C. T., Thibodeau, M., & Duque, G. (2013). Validation of the Yale-Brown Obsessive Compulsive Severity Scale in African Americans with Obsessive-Compulsive Disorder. Psychiatry Research, 209(2): 214-221.
- *Williams, M. T., Davis, D., Thibodeau, M., & Bach, N. (2013). Psychometric properties of the Obsessive-Compulsive Inventory Revised in African Americans with and without obsessive-compulsive disorder. Journal of Obsessive-Compulsive and Related Disorders, 2(4): 399-405.
- Williams, M. T. & Jahn, M. E. (in press). Obsessive-compulsive disorder in African American children and adolescents: Risks, resiliency, and barriers to treatment. American Journal of Orthopsychiatry.
* Indicates publications and manuscripts from this study to date