by Monnica Williams, Ph.D. and Ashleigh Steever
University of Louisville, Department of Psychological & Brain Sciences
This article was initially published in the Spring 2012 edition of the OCD Newsletter.
Ethnic Minority Involvement in OCD Research
Great progress has been made in the understanding and treatment of obsessive-compulsive disorder (OCD), but not all parts of our society have benefited from these improvements. OCD in ethnic minority groups has been, and continues to be, a neglected area of research.
In 1993, the National Institutes of Health (NIH) stated that funded research must include a certain amount of participation by racial and ethnic minority groups, and researchers were required to include in their research project proposals strategies they would use to achieve diversity in their samples. Our own comprehensive review of the literature found that the absence of minority groups from research studies was widespread and had continued to occur in recent years (Williams, Powers, Yun, &Foa, 2010; Wetterneck, et al., 2012). Among nearly all major studies done in North America, ethnic minorities were either underrepresented or minority participation was not reported at all. For example, less than 2% of all participants in OCD studies were African Americans. Researchers have not followed NIH guidelines regarding the involvement of special populations, and greater involvement of ethnic minorities is clearly needed to fully understand issues related to OCD in non-White populations.
African Americans and OCD
Earlier work done with non-clinical samples of African Americans found differences in reports of contamination anxiety and worries about animals. This research was interesting, but it was not clear if these findings would reach African Americans with OCD. Very few studies in the existing literature included African Americans diagnosed with OCD, drawing tentative conclusions from non-clinical student or community samples. Other than a few encouraging case studies (studies of one specific patient) (Hatch et al., 1996; Williams et al., 1998) and one naturalistic study (a study where a researcher observes patients during their day-to-day lives) (Friedman et al., 2003), there were no published studies focused on the appearance of symptoms, 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 harmful, or that the rate at which African Americans can have OCD was lower. It seemed there must be a reasonable explanation, but studies to date had yet to discover any useful information regarding OCD in African Americans.
Using data from the National Survey of American Life (NSAL) study, Himle et al. (2008) showed that African Americans were suffering with OCD in the exact same numbers as the larger US population, but were less likely to receive treatment (Kessler et al., 2005; Himle et al., 2008). Among those with severe OCD, 93% of Americans receive some type of treatment (NCS-R; Ruscio et al., 2008), but this was true for only 60% for African Americans (NSAL; Himle et al., 2008). Even among those who were able to access clinical care, few received specialized treatment and only 20% were using an SRI, which is a medicine for OCD.(Himle et al., 2008).
These findings were compelling, but left us with even more questions. If the rate at which African Americans can have OCD was the same the larger US population, what was 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 did not encourage people to seek treatment? 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. Philadelphia, with a population that is 50% African American, was the right place to do this important work, and the International OCD Foundation made it possible with a generous research award.
Recruitment of African Americans
Careful data collection was important for the recruitment of a population that was basically invisible. We set aside a large portion of the budget to outreach and advertising so we would be sure to find our target population, and we carefully kept track of what 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 ads featured images of African Americans and wording that directly addressed our audience.
Many African Americans are uncomfortable participating in research due to experiences of discrimination and other difficulties. There is a cultural memory of abuses such as the US Public Health Service Syphilis Study at Tuskegee, which continues to affect medical decision-making (Gamble, 1997), and more recent research abuses, such as the Baltimore Lead Paint Study which also negatively affected minorities (Spriggs, 2004). To reduce possible fears associated with medical research, our study minimized use of terms like “research” and instead used “project” or “study”.
Completion of this work allowed us to describe effective recruitment methods for African Americans with OCD. Our project’s first paper, published in Contemporary Clinical Trials, provided a road map to help improve minority participation in future studies (Williams et al., 2012). No longer will those conducting OCD research need to wonder if they can find African Americans. Now every study can expand their sample, 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 is to allow everyone with OCD to obtain treatment. Our study found that there are many barriers to treatment among African Americans with OCD, including the cost of treatment, stigma/shame, fears of therapy, believing that the clinician will be unable to help, feeling no need for treatment, and treatment logistics (Williams, Domanico, Marques, Leblanc, & Turkheimer, 2012).
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 true lack of community mental health providers suitably trained to provide OCD treatment. There were also issues with the recognition and then reporting of OCD symptoms, and symptoms not being reported to health care providers. There were some cultural issues noted among our sample, including not wanting to take part in mental health care and a tendency for viewing anxiety as a spiritual problem to be resolved through religious outlets. However, the most common issue volunteered by our participants was that the person did not realize s/he had a disorder or 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. Unfortunately, I don’t have insurance, so my fear was that if I sought help, it would not be good because I couldn’t afford it.” For many, simply the process of being evaluated and discussing treatment with a clinician brought about a change of thinking. Another said, “I was unaware, deluded, or in denial about the level of impact my condition had on life. Too much tolerance for deficiencies.”
We compared concerns expressed by our sample to a sample from a previous study of barriers to treatment (Marques et al., 2010). 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 1 in 4 expressed fears about discrimination. These issues are uniquely important to long-term goals concerning outreach and treatment among 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 number tried to find or even started treatment during the follow-up period. Unfortunately, many who expressed interest were unable to get it, thus an important avenue of 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 kinds (i.e., excessive washing and obvious repetitive checking) may not be quickly identified by medical professionals. African Americans are consistently over diagnosed with psychotic disorders and more likely to be hospitalized, (Snowden, Hastings, & Alvidrez, 2009). 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 (Hollander & Cohen, 1994; Ninan & Shelton, 1993). 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 symptoms when assessing and treating African Americans.
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 (Heeringa et al., 2004). Although the NSAL dataset provides 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 European Americans with OCD, which is consistent with studies conducted with non-clinical samples.
The data collected from this study has many implications that could be important to future research. We will continue to analyze and publish the data we have to understand more about African Americans and OCD. Work in progress includes studying the relationship between hoarding, OCD, and other co-existing conditions, and studying how well popular measures of OCD work in African American populations.
Another important step is to use the things we have learned from this study to ensure minority representation in future studies and research. It is a priority 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.
- 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 Theraoy, 34(3), 397-310.
- 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.
- 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, 25, 993–1005.
- Kessler, R. C., Berglund, P., Demler, O., Jin, R., Merikangas, K. R., & Walters, E. E. (2005). Lifetime prevalence and age-of-onset distributions of DSM-IV disorders in the National Comorbidity Survey Replication. Archives of General Psychiatry, 62(6), 593–602.
- Ruscio, A. M., Brown, T. A., Chiu, W. T., Sareen, J. J., Stein, M.B., & Kessler, R. C. (2008). Social fears and social phobia in the USA: Results from the national comorbidity survey replication. Psychological Medicine: A Journal Of Research In Psychiatry And the Allied Sciences, 38(1), 15-28.
- Snowden, L. R., Hastings, J. F., & Alvidrez, J. (2009). Overrepresentation of Black Americans in psychiatric inpatient care. Psychiatric Services, 60(6), 779-785.
- 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., Powers, M., Yun, Y. G., Foa, E. B. (2010). Minority Representation in Clinical Trials for Obsessive-Compulsive Disorder, Journal of Anxiety Disorders, 24, 171-177.
- *Williams, M. T., Domanico, J., Marques, L., Leblanc, N., Turkheimer, E. (2012). Barriers to Treatment Among African Americans with OCD, Journal of Anxiety Disorders – Special Issue, 26(1), 555.doi: 10.1016/j.janxdis.2012.02.009
- *Williams, M.T., Elstein, J., Buckner, E., Abelson, J., Himle, J. (to appear). Symptom Dimensions in Two Samples of African Americans with Obsessive-Compulsive Disorder.Journal of Obsessive-Compulsive & Related Disorders.
- *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.
* Indicates publications from this study to date