Stigma, Global Health Research Explored
By Jennifer Cabe and Barbara Sorkin
On the Front Page...
The Fogarty International Center recently convened an international conference on "Stigma and Global Health: Developing a Research Agenda" in partnership with 14 institutes and offices and seven governmental and non-governmental organizations. The conference examined the social and cultural determinants of stigma, how it prevents people from seeking or getting treatment for disease, and potential future research opportunities to address health challenges in the United States and the developing world.
More than 250 participants from 30 nations, including 23 developing countries, discussed stigma associated with HIV/AIDS, mental health, epilepsy, physical anomalies, alcohol and drug abuse, physical and sexual abuse, genetics, race and gender.
The 3-day conference was cochaired by FIC director Dr. Gerald Keusch and Dr. Arthur Kleinman, professor of medical anthropology and psychiatry at Harvard University.
What Is Stigma?
Stigma has been defined as a deeply discrediting attribute that reduces a person to one who is in some way tainted and can therefore be denigrated. It is a pervasive problem that affects health globally, threatening an individual's psychological and physical well-being. It prevents individuals from coming forward for diagnosis and impairs their ability to access care or participate in research studies designed to find solutions.
Much attention has been paid to the plight of the stigmatized, including those with AIDS or suspected to have AIDS, those with leprosy, and those suffering from mental disorders. But stigma goes beyond these conditions to include some that are no longer stigmatized in the developed world but continue to draw disapproval in resource-poor countries.
"Stigmatization of certain diseases and conditions is universal across all countries, all societies, all populations," said Keusch. "At this conference, for the first time, we looked at a whole set of conditions that result in stigma physical, behavioral, psychological and gained a better understanding of the mechanisms behind stigma. We identified gaps in the current understanding of stigma's impact on health, and highlighted the research opportunities at the individual, household, community and social system level."
Expert Speakers and Participants
The conference brought together participants from many areas of expertise, including public health, social and political science, genetics, epidemiology, media and communication and law.
In the keynote address, Dr. Kay Redfield Jamison, professor of psychiatry at Johns Hopkins University School of Medicine, provided personal and professional perspectives on stigma, noting that it discourages patients from seeking optimal treatment and living full, productive lives. Jamison, a leading expert on serious mood disorders and the recipient of a 2001 MacArthur Foundation "genius" award, spoke of her personal experience with manic-depressive illness, recounted in her award-winning memoir, An Unquiet Mind.
Conferees updated the working definition of stigma, developing methods for measuring its occurrence and impact, developing interventions, and considering the need for research to evaluate interventions. The groundlaying discussions were followed by personal accounts of the impact of stigma.
A recurrent theme was the cycle in which individuals with stigmatizing conditions are negatively stereotyped and socially isolated, resulting in discrimination and disempower-ment. Dr. Pablo Farias of the Ford Foundation noted that, as a result of stigmatization, societies sometimes allocate fewer resources to research and treatment of stigmatized conditions. He reported that Mexico, with a population of 100 million, has only 5,500 psychiatric beds. This shortage results in long waits for hospitalization, even for the severely ill.
The role of education in alleviating stigma and the influence of the media on public opinion were also considered. Bill Lichtenstein, an award-winning filmmaker and journalist who has himself experienced manic-depressive illness, spoke about the prevalence of negative stereotypes of the mentally ill in television and film and about his efforts to use these media to increase public understanding of mental illness. Dr. Martin Fishbein of the Annenberg School for Communication at the University of Pennsylvania highlighted the pressing need for rigorous research on the impact of the media on public image and behavior.
On the final day, participants focused on associations between race, gender or sexual orientation, and stigmatizing conditions, and on research and other actions that may decrease stigma and its effects. Scott Burris, professor of law and public policy at Temple University and Johns Hopkins University, said that while the law can be used as a tool to deter and provide a remedy for some harmful effects of discrimination resulting from stigma, effective enforcement ultimately depends on the social status of the affected group. Dr. Florence Baingana, mental health specialist at the World Bank, spoke about the tendency of stigma to perpetuate health inequalities, and the need for researchers to better understand the policy-making process, so they can work to ensure that research results have an impact.
Recommendations emerging from the meeting included the need for interventions to be carefully targeted to the conditions, groups and individuals concerned. Several groups emphasized that the interaction of researchers with an individual or family may in itself confer stigma; it is important to take measures to avoid this stigma, both for the sake of the affected groups and in the interest of enabling further research.
Kleinman commended participants for the richness of the evidence brought forward and the range of perspectives on a complex phenomenon. "This meeting has reinforced our conviction that there is a need for international stigma research, and that there is indeed a researchable agenda."
A video archive of the conference, as well as background papers, are available at www.stigmaconference.nih.gov.
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