Highlights of the 2001 AED Conference
Exploring Better Access to Care for Minority, Underserved Populations
by Mary K. Stein, Managing Editor
Reprinted from Eating Disorders Review
July/August 2001 Volume 12, Number 4
©2001 Gürze Books
At the 2001 Academy for Eating Disorders International Conference in Vancouver, May 17-19, more than 500 eating disorders professionals explored new ways to improve diagnosis and treatment of eating disorders among minority and underserved populations.
Obesity in Minority Populations
In her keynote address, Shiriki K. Kumanyika, PhD, MPH, reported that obesity has risen to frightening heights among minority Americans, particularly African-Americans. For example, she noted that although more than half of white Americans have a body mass index (BMI) greater than 25, and one-third have a BMI over 30, 40% of black women have a BMI greater than 30 and 30% have a BMI above 40. She added that at least half of adults in many African-American, Hispanic, American Indian and Pacific Islander communities have even greater rates of obesity.
"The epidemic of obesity has also reached down into the younger population in a terrifying way," she said, adding that 15% of all adolescents are now categorized as obese. She also cited the "outrage" of marketing of soft drinks to schools, noting that school administrators and others have sold access to students to get needed funds for the schools. "When vending machines enter the classroom, they bring a tremendous amount of calories to young people," she said. This is compounded by an increase in portion sizes among most fast food outlets.
The increase in obesity among black women can be partly traced to environmental factors, including targeted marketing, lack of supermarkets or lack of access to healthy foods in many inner city areas, the rise and prevalence of fast food outlets, and lower levels of physical activity. Cultural norms also play a role. For example, Dr. Kumanyika explained that many older African-American women feel that heaviness is genetically caused, and that it is healthier to be overweight than thin. Even among young black women, thin black women may be viewed as "being on something," such as crack cocaine, or having a disease like tuberculosis or AIDS.
Targeted TV Marketing
Dr. Kumanyika from the University of Pennsylvania School of Medicine, Philadelphia, reported some intriguing findings about how targeted marketing of food plays a role in black obesity. Researchers at the University of Chicago Children's Hospital found that 60% more food and beverage ads ran with television shows featuring black actors than ran with general audience shows. Thirty percent of the ads featured candy and 13% spotlighted soft drinks. Also, 27% of black actors in the shows studied were overweight, compared with 2% of non-black actors in general audience shows; and, these shows usually included food and meals, or characters eating.
Dr. Kumanyika also described results of focus group studies with 190 black women. Most of the participants had no training or education about obesity, food, or activity levels. The women reported eating constantly, eating large portions, and tasting everything while cooking. When the women enrolled in healthy eating programs, they continued to include prior foods along with the new and healthier foods. There also was a fear of feeling hungry, which might reflect a cultural memory of not having food, she said.
Treating obesity among black women is challenging, Dr. Kumanyika said, and suggested certain changes that may improve outcome. Greater success might follow less-structured, more client-centered and culturally oriented weight-loss programs. Even when such approaches are used, the dropout rate is very high, often 50% or more, she said. Weight loss patterns are also different among white and black women, she said. In short-term studies, black women do more poorly than whites, but over the long term, weight loss equalizes among blacks and whites.
In a plenary session moderated by Dr. Melanie Katzman, of New York Hospital and the Institute of Psychiatry in London, four panelists discussed ways to identify and provide better care for "the four M's" of underserved groups with eating disorders. These include ethnic minorities, men, miniature people (children), and clients with multiple sexual orientations.
"Ethnic minority groups are largely invisible in our field," Dr. Ruth Striegel-Moore, professor of psychology at Wesleyan University, and president of the Eating Disorders Research Society, told clinicians attending the plenary session. Fewer than 10% of studies published in eating disorders journals even provide a breakdown of study populations by ethnicity, she said, and it is basically assumed that the participants are white.
Dr. Striegel-Moore pointed out numerous reasons why a focus on ethnic minority groups is needed in the eating disorders field. First, U.S. census projections suggest that by 2050 half the population will fit into one of the current minority groups. Next, ethnic and minority populations in the U.S. and other industrialized nations typically fare worse on standard health indicators. Also, ethnic minority groups experience unique risk factors such as peer-group conformity pressures, ethnicity-based discrimination or racism, stresses related to acculturation, and intergenerational conflicts associated with younger generations trying to adopt the values and norms of the majority culture. Finally, access and response to treatment may vary by ethnic group, and information about group-specific service needs is critical for health services planning and implementation.
According to Dr. Striegel-Moore, the 2000 census data also showed that 1 in 4 Americans fits the criteria for a racial or ethnic minority, and black Americans and Hispanic Americans make up the two largest minority groups. She added, "These categories do not reflect explicitly the enormous cultural differences within groups, nor do they capture diversity in terms of immigration and acculturation status." At the state level, vast differences are apparent in the ethnic distribution of populations. She added, "Hence, your experience as clinicians in terms of diversity of your client population will vary quite a bit, depending on where you live in the U.S., and the experience of members of ethnic minority groups likely differ widely depending on the population density of their particular groups in the area where they live."
Dr. Striegel-Moore also cited what she terms "the myth of the golden girl" that helps perpetuate the stereotype that eating disorders affecting only affluent white women. This assumption arose from early case descriptions of eating disorders as problems of European girls from affluent families. This has been reinforced by incessant media portrayal of eating disorders as problems of the rich and famous, she said.
"Without nationally representative data on the incidence and prevalence of eating disorders in the U.S., we can only use anecdotal evidence that members of ethnic minority groups also develop eating disorders," Dr. Striegel-Moore said. She also stressed that when trying to estimate rates of eating disorders in a given population, to be valid, studies should include several thousand participants.
Dr. Striegel-Moore cited results of her recent epidemiologic study of risk factors, focusing on African-American women as one minority group. The sample is comprised of young women who previously participated in a longitudinal study, The National Growth and Health Study. It was the first effort to determine in an epidemiological sample, rather than a sample of convenience, how common symptoms of eating disorders are in black women and what might be risk factors for this population group, Dr. Striegel-Moore said.
The researchers found that significantly more white women than black women met lifetime criteria for bulimia nervosa or binge eating disorder, and no cases of anorexia nervosa were identified among the black women. For some behaviors, there were no group differences, some were marked, and others depended upon where in the U.S. the participants were interviewed, Dr. Striegel-Moore added. The impact of local differences in the total sample is profound, she said. For BED, there were no site differences, and white women were significantly more likely than black women to have experienced a binge-eating episode. The average age at onset of the eating disorder was significantly later among the black women than the white women. Thus, the study would have missed numerous black women, who might have developed an eating disorder later. "These results illustrate how sampling, whether by geography, socioeconomic status, or age, has a clear impact on the findings and that performing simple head counts as in the past, without a further exploration of the findings, may lead to inaccurate conclusions about ethnicity and eating disorders," she said.
"In our field, we often hear that it is rare to have a client who represents an ethnic minority group," Dr. Striegel-Moore added. In fact, the absence of patient registries reinforces the misconception that ethnic minorities do not experience an eating disorder, she said. In her study, only 5% of the young black women, compared to 25% of the white women, had received treatment for their eating disorders.
A previous study she conducted with Kathleen Pike and Denise Wilfley offered some explanation for the lower percentage of black women who seek treatment for an eating disorder. In the earlier study there was no significant difference between white and black women who sought treatment for a weight problem, but there were significant ethnic group differences between women who had received treatment for an eating disorder. The researchers realized that the black women who sought help for weight control could easily have been assessed for an eating disorder, but were not. Weight concerns are an important motivating factor for women seeking treatment, and service providers who work with clients who present with such concerns should screen for the presence of an eating disorder, she said. Service providers could also educate the public about the common comorbidity of eating disorders with depression and anxiety disorders.
According to Dr. Striegel-Moore, reasons women in minority ethnic groups give for not seeking treatment for their eating disorder include financial difficulties, including inadequate health insurance; the belief that treatment won't help; fear of being stigmatized; and lack of knowledge about treatment resources.
Improving Care for Ethnic Minorities
Dr. Striegel-Moore urged clinicians to work for improved access to care by insuring financial resources to pay for treatment and by educating the public about the availability of effective treatment. She also advised the audience not to underestimate the value of case reports. Noting that clinicians still draw from Hilde Bruch's detailed works, she told the audience that similarly detailed case records of ethnic minority women are needed, "so we may understand their experiences and determine how treatment needs to be adapted." Even so, treatment approaches should be standard for all patients, she said, in the belief that empirically based treatments, such as cognitive behavioral therapy or interpersonal psychotherapy, work when properly provided. Assuming otherwise raises the risk of discriminating once again against this client group by withholding appropriate treatment, she stressed.
Dr. Striegel-Moore also urged clinicians to develop networks for both the clients and the providers, to enhance communication and dissemination of knowledge. Helping clients gain access to women with similar ethnic backgrounds may support the curative process that comes when one realizes one is not alone with a problem, she explained. Clients also learn common facts that exacerbate the problem and ways to help one another in the process of recovery and social action, she added.
Dr. Striegel-Moore also urged audience members to develop an awareness of minority groups and to create a treatment environment that is familiar and welcoming to minority clients, down to office furnishings and magazines in the waiting room. Recruiting staff from minority groups is also a helpful step, she said. Finally, she called upon clinicians to become involved in "a broad range of advocacy efforts, to assure that adequate resources are available to articulate standards of cultural competence in the treatment of eating disorders."
(Click Here for Part 2: Improving Access to Care for Children, Men, and Gay Men and Women)