In this issue of Academic Psychiatry, we have given special attention to methodological issues relevant to educational and mental health research. In the first paper that follows, Ruth Levine and colleagues describe the importance of anonymity in survey studies that inquire about the personal mental health issues of medical students. This work is innovative and empirically derived, making it an unusually valuable contribution to the psychiatric education literature. In his companion commentary, Michael Myers of the University of British Columbia reminds us of the genuine humanity that we each bring to the practice of medicine. Together this paper and commentary underscore the imperative to pursue research on important but neglected medical student health care issues. They further demonstrate the need to do such work with sensitivity and with an awareness of intersecting ethical and scientific issues. The second paper, by Judith Meinert and colleagues, focuses on the recruitment of African-American women as subjects in mental health research. Although it is a nontraditional topic for our journal, the reviewers enthusiastically endorsed the importance of this paper for our readers who wish to engage in educational research efforts with students and residents of culturally and ethnically distinct backgrounds. The companion commentary by Lauren Bonner of the University of Washington gives emphasis to shared history and emerging collaborative opportunities in human research. Attention by academic psychiatrists to the considerations presented in this set of manuscripts may help ensure that educational research in our field is respectful, attuned, and methodologically rigorous. —Ed.
The issues addressed in this paper are highlighted by the convergence of two major federal trends. The first is a Congressional mandate to include women in clinical research and to analyze findings related to gender differences. In the 1980s, public health leaders and advocates drew attention to inequities in the National Institutes of Health (NIH) health research agenda and to the fact that women and minorities were underrepresented in some NIH-funded investigations. This effort led to an NIH policy that, with few exceptions, required the inclusion of women and minorities in clinical research and to the establishment of the Office of Research on Women's Health (ORWH) at the NIH in 1990. A 1992 U.S. General Accounting Office (GAO) report (1) found the inclusion requirement was not uniformly enforced or monitored. The GAO report set the stage for strengthened requirements in the 1993 NIH Revitalization Act for policies that encouraged the inclusion of women and minorities as subjects in clinical research. As part of that effort, the NIH Revitalization Act called for the conduct and support of outreach programs for recruiting women and members of minority groups as subjects of clinical research. The Outreach Notebook for the NIH Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research was published (2). In 1994, the ORWH and the NIH Office of Minority Health jointly issued Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research.
In 2000, the GAO revisited the issue of the inclusion of women in NIH-funded research. The GAO published a report entitled Women's Health: NIH Has Increased Its Efforts to Include Women in Research (3). This report praised NIH for its progress in implementing and strengthening policy for inclusion of women in research. Despite this, the report noted that relatively few NIH-funded investigators actually reported the results of studies by gender of participants. The report encouraged the NIH to work with researchers to ensure that analysis of results by sex is reported. In 2000, Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research was revised to reflect new requirements for valid analysis of findings for women and minorities in Phase III trials (2). The Outreach Notebook is currently under revision.
A second important trend is the NIH focus on health disparities. Recent legislation (S 1880) entitled the Minority Health and Health Disparities Research and Education Act of 2000 called for the establishment of a Center on Minority Health and Health Disparities at NIH. Its mission is to conduct and support research, training, and dissemination of information with respect to health conditions of minorities and other populations with health disparities. As part of an overall NIH review of minority health disparities, the National Institute of Mental Health (NIMH) surveyed the knowledge base about mental health disparities among racial/ethnic groups. Among the most notable are disparities in access to and utilization of mental health treatments and services.
Clinical depression is a highly prevalent and serious mental disorder that affects an estimated 10% of American women each year (4). The World Health Organization/World Bank identified major depression as a leading disease-related source of disability worldwide (4). A number of studies indicate that the burden of depression is higher in poor women with children, and that minority patients are underserved by the medical health care system. Some of the known barriers to entry into clinical trials are identified as mistrust of the medical system, economic disadvantages, communication and cultural differences, and a general lack of awareness of study programs (5).
Almost a decade has passed since the NIH Revitalization Act was passed. Health disparities among majority and minority groups and between men and women are receiving increasing research focus and public interest. However, there are relatively few reports in the literature to inform researchers and public health officials about effective outreach strategies with special populations. This paper adds to a growing group of reports that explicitly address this process. Other investigators report their success in recruiting African Americans into research trials (6—8). Some reasons found for minority participation were that participants benefited directly from the study (6), investigators established a sense of pride attached to joining the study (7), and researchers made minority populations aware of the study by direct mass mailing (8).
We focus on issues that affect access to mental health care among African-American women. Stigma associated with mental disorders and different conceptualizations of mental illness (such as those that incorporate a spiritual element) are examples of these issues. These concepts are often barriers in seeking help for mental illness among African-American women. Because of the Tuskegee study, in which black men were not offered efficacious treatments for syphilis (9,10), trust in biomedical research and treatment by physicians differs from that of the majority population. Some African Americans believe that their race are used as "guinea pigs" in medical research (11). Willingness to participate in clinical trials involves a strong element of trust (12,13). Alternative approaches to dealing with mental health problems, such as support groups, are also common. These approaches have their roots in the importance of the extended family, community, and faith-based organizations in the African-American community (14).
In this paper, we present our experience as researchers committed to developing relationships within the African-American community. Our interest was in recruiting African-American women into our studies in order to obtain a representative sample of American women from which to draw conclusions. We held a conference for women of color as part of an ongoing process designed to understand the needs of African-American women in Cleveland, Ohio. This outreach effort to community leaders and local residents was motivated by our recognition that special efforts would be required to recruit and retain minority women in an NIMH-funded clinical trial (Antidepressant Use During Pregnancy; R01 MH60335) conducted by Dr. Wisner. The agenda of our community-based conference reflected themes that are critically important to increasing participation of African-American women in mental health treatment and research. Our report describes these experiences and summarizes what we learned about establishing a foundation on which to build further outreach efforts. The paper addresses three elements recommended in the NIH document on outreach to women and minorities and a five-pronged approach to an outreach strategy.
The Outreach Notebook for the NIH Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research describes the five elements of outreach: 1) understand the study population, 2) establish explicit goals, 3) achieve agreement on research plans, 4) design and conduct evaluations, and 5) establish and maintain communications.
To implement planning for recruitment into our study of antidepressant use during pregnancy, we addressed the first element of outreach in the NIH guidelines by attempting to learn as much as possible about attitudes toward mental health among African-American women in the local community. We wanted to apply this Outreach Notebook recommendation and translate it into real-life examples.
NIH Element #1: Understanding the Population's Views on Mental Illness.
We exhibited our recruitment materials at the Cleveland Black Family Exposition. While there, we discovered Positive Plus, a community-based African-American group for women who had lost a child through violence or had experienced other tragedies. We contacted the group founder, who invited us to "Sister group" meetings. We went to the meeting specifically to understand the cares and concerns in this African-American group of women.
The women of Positive Plus shared their views by saying, "We take care of our Sisters, and we don't have time to be depressed." These descriptors were consistent with the stereotypic images of the strong black woman who bears all and serves as the source of strength for her extended family (14). Some women voiced suspicion about mental health services. They described the role of prayer and spirituality as the healing remedy sought by many troubled African Americans and the unique role of mutual support available within Sister circles in local communities (15). The group founder proposed that we consider organizing a conference at a location easily accessible to African-American women, and at minimal cost to participants. She pledged herself and her membership to participate in the process.
We recruited professional and nonprofessional African-American women to serve with our Caucasian research staff in forming a planning committee. Each participant was acknowledged by various segments of the African-American community as a leader and had the ability to relate to African-American women from all walks of life. Furthermore, each had access to formal and informal institutions and networks within her community and was committed to disseminating information gained from the conference to the African-American community.
During the course of our meetings, the African-American perspective on depression as a personal weakness was discussed, as was the fact that people who associate "mental illness" with "craziness" would be unlikely to seek professional help. We heard about typical African-American women who talk with a friend, pray, or take another deep breath when experiencing an extended period of sadness. Some members speculated that many medical office visits were motivated by mental health concerns among African Americans. The perspective represented by the African-American committee members was similar to and reflected the views of many African-American women across the country (16).
NIH Element #2: Establishing Explicit Goals.
As the meetings continued, our primary goals emerged: 1) to provide public education about mental health for African-American women and 2) to enhance minority recruitment for our NIMH-funded study of pregnant women. We chose topics that would invite African-American women to improve self-care, and we agreed on the value of incorporating humor and spirituality into the program. Major presentations included 1) It's OK not to feel OK! 2) Bad nerves or what? Black women and anxiety, 3) Ways that mental illness impacts the African-American community, 4) When bad things happen to good people, 5) Who's pulling your strings? 6) Depression during and after pregnancy, and 7) Getting through depression: moving on to humor and healing.
Committee members attempted to draw on resources available within the African-American community by distributing conference fliers at local churches, community events, and speaking engagements. In addition, physician members contacted the Black Physicians Network (a local organization) and the local chapter of the National Association for the Advancement of Colored People (NAACP). A member of the committee notified various departments within the city government to advertise the upcoming conference. We obtained funding from NIMH and unrestricted educational grants from several pharmaceutical companies to cover program costs. The participant fee was 10 dollars.
Observations About the Conference
NIH Elements #1 and #5: Learning About the Study Population and Establishing Lines of Communication.
Our meetings resulted in the presentation of Soothe Your Soul—A Day of Healing for Women of Color, held at a local center and close to transportation and the African-American community in Cleveland. Participants were African-American women who ranged in age from the late teens to the late 70s. They came from within a 60-mile radius of the conference site. Some attendees were health care professionals; others were employed in various clerical or administrative capacities or were not employed. Three women from a neighboring county mental health agency attended.
Spirituality was carefully integrated throughout the sessions via spoken word and song. Faith and mental health were highlighted as two life experiences that can be woven together to produce a colorful fabric of existence. The sources of African-American women's beliefs about mental health in general and about depression specifically were explored during in-depth conversations between presenters and their audiences.
One presenter learned in childhood that "bad nerves" is a term used by some African Americans to describe anxiety and panic. Her assistant sang a hymn entitled "It Is Well With My Soul." This hymn was used to introduce a story about a woman from her childhood who sang in the church choir. She developed panic disorder with agoraphobia and could not leave her home. While assisting the agoraphobic woman in many ways, members of the church community inadvertently helped her avoid dealing with the disorder.
An African-American psychiatrist elicited descriptive impressions from her audience about mental illness. In the process, she established communication and trust with the conference participants (element #5). Such words as crazy, scary, weakness, helpless, hopeless, irresponsibility, and stigma emerged from the group. One participant noted that she was taught to keep personal issues in the family and to deal with them by keeping a "stiff upper lip." Seeking treatment or any public emotional display represented a failure to keep problems in the family. Some people in the audience conceptualized mental illness as rooted in white oppression, which was, in turn, linked to antisocial behaviors such as violence and addiction. Black psychiatrist Alvin Poussaint and journalist Amy Alexander (16) have espoused a similar view. A fear of physicians, especially psychiatrists, was based primarily on the previously mentioned syphilis study. The view that psychiatrists are "like policemen" suggests that African-American encounters with them are often followed by involuntary hospitalization. Participants also identified their suspicion of the perceived profit motive of pharmaceutical companies.
The audience made no spontaneous mention of the biological causes of mental illness. However, depression associated with antihypertension medications, diabetes, or general poor health was more understandable and acceptable among African-American women.
Some African-American women interpret depression as part of their identity. As Black women, they believe they must "keep on keeping on" (14). They felt that receiving psychotherapy meant seeking assistance outside the family. Additionally, some depressed African-American women do not have access to treatment because of the lack of adequate health insurance and the burden of child care responsibilities. These factors may explain the emphasis in many African-American communities on self-help and supportive friends rather than seeking care through more traditional channels such as mental health professionals.
Participants proposed that mental health practitioners should be culturally sensitive and aware of the types of suffering and loss that occur more frequently in the African-American community. Examples are victimization related to violent crime, fires, tragic losses and death, and subsequent post-trauma stressors (17). Crisis within the African-American community, such as a tragic loss, may cause that community to draw on physical and emotional support from their members and to reject help from those outside. Bonding during crises may decrease the likelihood of contact with traditional mental health care.
An African-American comedienne used humor to portray her struggle with depression. Early in life she was told, "tough it out" and "don't come back home" as a depressed single mother. She learned "to have control over" her emotions. She sought treatment and obtained relief, which enabled her to stand before us with her message of endurance and hope.
Following the 1984 murder of her 14-year-old daughter, one committee member searched for someone to say the words that would relieve her enormous burden of sadness. Over time, she found the answers within herself and came to believe that an inner core of personal dignity or integrity enables anyone to cope with unthinkable sorrow or suffering. Her overall message was one of encouragement and empowerment based on a faith perspective that could triumph over the direst of circumstances. The emphasis on resilience among women in this community was striking.
Participants were given rating sheets to rate the individual speakers at the end of each session and another rating sheet to give their overall impression of the conference. Each breakout session was rated for presentation and content with a four-point scale (from excellent to poor). All women (100%) rated the conference as good or excellent. Individual speakers were also rated as good to excellent. All but two women scored content of material on mental illness as good or excellent. The majority of participants wanted future sessions, and the respondents suggested a focus on mental health, marriage and parenting, career stress, self-esteem, and substance abuse.
The Soothe Your Soul conference provided us with valuable lessons about incorporating the Outreach Notebook elements into recruitment. We acquired a greater sensitivity to the language and common expressions of African Americans. Concerning Element #1, we became aware of how to develop effective communication channels through interpersonal relationships with leaders in the African-American community. Element #2 in the Outreach Notebook suggests that researchers establish explicit goals for recruiting and retaining subjects; this process was started by developing specific goals for the conference as a process for educating about mental health. Element #5 recommends maintaining communication and cooperation to promote continuing awareness of and trust in the project. We established a dialogue with the African-American women by presenting the conference.
The planning committee became a vital link to the African-American community. Following the conference we held open discussions about the conference experience, and the members helped us identify the formula for success that contributed to the effectiveness of our outreach efforts. Our efforts helped us establish four recommendations not specifically addressed by the NIH outreach guidelines:
NIH-funded investigators must include women and minorities in clinical research. When diversity in study populations is accomplished, research outcomes will be representative of a wider segment of the U.S. population. We acknowledged the underrepresentation of African-American women in our study and described our attempts to reach to this population. Mindful of the recommendations provided in the Outreach Notebook for the NIH Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research, and in light of our own learning experiences, we encourage investigators to consider the following community strategies when recruiting African-American women into studies:
The authors wish to thank all the members of the steering committee of the Soothe Your Soul conference for their hard and thoughtful work: Carla Harwell, M.D.; Minnie Bowers, M.D.; Yvonne Pointer-Triplett; Diane Goodrum; Ilinda Reese; Judy Meinert, L.I.S.W.; and Kathleen Peindl, Ph.D. They also thank Carl Bell, M.D., for his review of an earlier draft. This work was supported by NIMH Grant R01 MH60335 to Dr. Wisner. Material presented here does not necessarily reflect the opinions, official policy, or position of the National Institute of Mental Health.