This report is based on field research conducted in January and February 2007 and in May 2006 by a Human Rights Watch researcher and a consultant.
Human Rights Watch conducted one-on-one interviews with 83 women living with HIV/AIDS, most of whom were survivors of domestic violence or have experienced property grabbing or loss of marital property upon divorce. Many of the women were on antiretroviral therapy (ART). Their ages ranged from 17 to 74, with the majority between 25 and 55 years. One interviewee testified on behalf of her bed-ridden sister. We also conducted two mixed-gender focus group discussions and one women-only focus group discussion with members of HIV support groups in Lusaka and Chongwe. We identified and contacted informants through womens groups and HIV support groups and organizations, and also used the snowball technique where women we interviewed introduced us to other women in their social networks or support groups whose experiences were relevant to our research. The interviews took place in private rooms at NGOs premises, informants houses, support groups meeting rooms, and in a meeting room at a hotel.
Interviews were conducted in English, Bemba, and Nyanja with the help of two female professional translators and a female coordinator of a support group. Prior to each interview we informed participants of the purpose of the interview, its voluntary nature, and the way in which the data would be collected and used. Researchers assured participants of confidentiality and obtained informed verbal consent from them. Care was taken with survivors to ensure that recounting their experience did not further traumatize them or put them at physical risk. We provided each interviewee with a list of local nongovernmental organizations and clinics that provided relevant services.
Human Rights Watch also interviewed over 25 HIV/AIDS counselors and nurses, in addition to representatives of nongovernmental organizations specializing in womens rights, HIV/AIDS or development, faith-based groups, and traditional health practitioners. At the governmental level we interviewed representatives from the Ministry of Health, the National AIDS Council, the Gender in Development Division, the Ministry of Finance, the Ministry of Justice, the Zambia Permanent Human Rights Commission, and the Victim Support Unit of the police. We also interviewed the First Lady of Zambia, bilateral donors, the World Bank, and UN agencies. Researchers conducted several follow-up phone interviews with government officials and healthcare professionals.
The research focused on the Lusaka and Copperbelt provinces, which have the largest number of adults and children living with HIV/AIDS and the most HIV treatment sites in Zambia. Apart from Kafue and Chongwe rural areas, our interviews took place mainly in the urban districts of Lusaka, Kitwe, and Ndola. Zambia is highly urbanized; the urban population has twice the infection rate of the rural population, and the most established treatment programs are in urban areas. Future research on HIV treatment barriers for rural women would be valuable.
A limitation to this research is that we mainly interviewed women connected to womens organizations and HIV support groups, or who attended adherence counseling. The experiences of women who are unable to access these services are likely to be more severe. Moreover, in terms of adherence, support group leaders and adherence counselors often emphasize that patients should take ART on time as prescribed by clinic staff. Women who have missed appointments to renew their prescriptions for ART reported that they were told off by clinic staff. Consequently, some of the women interviewed might have decided not to admit missing ART doses as they associated Human Rights Watch researchers with support group leaders or adherence counselors.
Another limitation is that we did not interview perpetrators, including husbands, intimate partners, and family members involved in property grabbing.
Unless stated otherwise, the names of women living with HIV/AIDS cited in this report have been disguised with names and initials (which do not reflect real names), in the interest of the privacy of the individuals concerned.