This project uses conventional and participatory approaches for data collection and analysis, including Participatory Rural Appraisal Methods (PRA methods) and interactive drama.
In the first phase of this collaboration, ICRW is leading a research project with local partners to better understand the causes, manifestations, and consequences of stigma and how these translate into discriminatory behaviors. The research also analyses the implications for programmes and policy. Primarily, the project uses a variety of research tools to:
- Understand the underlying factors that allow stigma and discrimination to occur and be perpetuated;
- Document how stigma and discrimination is manifested in various communities and institutional settings;
- Identify institutional responses to stigma, such as how hospitals, schools, churches, and workplaces either diminish or contribute to stigma;
- Describe the strategies people living with HIV/AIDS use to deal with stigma and discrimination;
- Investigate how stigma is experienced by different gender and socioeconomic groups; and
- Make recommendations for future interventions to reduce HIV/AIDS stigma and discrimination
Research results, as well as program and policy recommendations, will be disseminated on an ongoing basis as fieldwork is conducted.
Over a 2-1/2 year period, ICRW is conducting the research with in-country partners in Ethiopia, Tanzania, and Zambia. The study design and research focus reflects local circumstances and priorities in each country, while core components of the study maintain comparability across countries. Project advisory groups, composed of local experts in each of the participating countries, guide the dissemination strategy and use of research findings.
In the second phase of the project, led by the CHANGE Project, the partner organisations and the project advisory groups will draw upon the findings and recommendations to launch pilot interventions that address issues of stigma in one or more of the countries. Pilot interventions are expected to begin while research activities are still underway.
In Ethiopia, the Miz-Hasab Research Center is investigating the dynamics of stigmatising attitudes and discriminating behavior in one urban and one rural community. This study will explore the extent to which poor understanding of HIV/AIDS and responses such as fear, prejudice, or concern act as sources of stigma and discrimination. It will use a series of qualitative research activities - key informant and in-depth interviews, focus group discussions, listing exercises, local narratives, and stop-start drama - to understand the motivations of those who perpetuate or reinforce stigma and to document the effects of stigma on the spread of HIV/AIDS in the Ethiopian context. As with the other country studies, this study will examine how selected characteristics such as gender, age, education, ethnicity, and socioeconomic status influence experiences with stigma.
In addition to this community-level study, a longitudinal sub-study will explore reactions and coping mechanisms to stigma. Ten to 20 people living with HIV/AIDS will keep diaries and will be interviewed to record their experience with HIV/AIDS, positive and negative reactions towards them, occurrences of stigma and discriminating behavior, and their coping mechanisms.
In Tanzania, the Department of Psychiatry, Muhimbili University College of Health Sciences, is conducting participatory research activities in one rural and one urban community. Like the Ethiopia and Zambia studies, this study is examining the community in its entirety - individuals, couples and families, community groups, and social institutions - to elucidate the various responses to the HIV epidemic. Key informants from the health services and schools, religious leaders and employers will help researchers create a history of the epidemic in their communities. Community focus group discussions and stop-start drama activities as well as in-depth interviews with people living with HIV/AIDS and/or families affected by HIV/AIDS will supplement the key informants.
A longitudinal sub-study with HIV-positive men and women who sought test results through Voluntary Counseling and Testing (VCT) is underway to document issues related to disclosure and experiences with stigma and discrimination over the course of one year. Interviews with students and/or instructors at a medical training facility focus on stigma in the health care system and providers' role in reducing it.
In Zambia, ZAMBART (a collaborative project between University of Zambia, School of Medicine and the London School of Hygiene and Tropical Medicine) is working with Kara Counseling and Training Trust (KCTT) to conduct a community-based study similar to those in Ethiopia and Tanzania. The emphasis is on understanding the rationalization of stigma associated with HIV/AIDS, the process of stigmatization (and how it is being continually constructed and reinforced) and the consequences of stigma.
ZAMBART and KCTT are also exploring how HIV-related stigma may interact with stigma due to other characteristics, in a household cohort study with a special focus on tuberculosis (TB). Researchers will conduct a series of interviews and narratives with up to 50 TB patients and family members to supplement data collected in 1999.
From the beginning, the HIV/AIDS epidemic has been accompanied by an epidemic of fear, ignorance, and denial. This has led to stigmatisation of and discrimination against people with HIV/AIDS, their family members, and caregivers. Today, stigma is a key obstacle to the full success of HIV prevention, care, and support activities. Research shows that stigma is associated with diseases that have severe outcomes and whose modes of transmission are perceived to be under a person's control, criteria that fit HIV/AIDS perfectly. Through stigma, society often blames infected people for being ill and asserts the innocence and health of those who stigmatise.
In addition, people who face HIV/AIDS-related stigma are often members of already stigmatised groups such as women, sex workers, the poor, or homosexuals. HIV/AIDS-related stigma and resulting discriminatory acts create circumstances that fuel the spread of HIV. Fear of being identified with HIV keeps people from seeking to know their serostatus, changing unsafe behavior, and caring for people living with HIV/AIDS. Whether we are talking about education, VCT, home-based care, or prevention of mother-to-child transmission (MTCT), stigma hinders individuals and communities from using HIV/AIDS services. Although stigma impedes HIV/AIDS programs, there is a lack of data to inform the design of interventions to reduce stigma and discriminatory practices. In response, USAID has funded a collaboration between ICRW and the CHANGE Project to address HIV/AIDS-related stigma.
The follow-up "intervention" project will work through NGOs to change attitudes underlying AIDS stigma and use a mixture of participatory approaches.
USAID, ICRW, CHANGE.
Letter sent from Ross Kidd to the Communication Initiative on January 8 2002.