"There's Nothing You Could Do if Your Rights Were Being Violated": Monitoring Millennium Development Goals in Relation to HIV-po

"Targets and indicators were developed to help governments mark their progress towards the MDGs, but these targets and indicators are macro-level in scope and thus not so useful for many smaller NGOs that wish to assess interim progress in specific geographical or content areas..."

This document offers a report on a project that was carried out in 2005 and 2006 by 8 organisations who partnered with the international non-governmental organisation (NGO) Ipas to test the effectiveness of a monitoring tool developed to help determine how 3 of the Millennium Development Goals (MDGs) are being met in relation to the sexual and reproductive health (SRH) of women affected by HIV/AIDS. These MDGs include: empowering women (MDG #3), improving maternal health (MDG #5), and combating HIV/AIDS (MDG #6). Participants in the project included organisations of women living with HIV/AIDS, family planning associations, and national and local NGOs:

• Ipas, USA
• Federation for Women and Family Planning, Poland
• Fundación de Estudio e Investigación de la Mujer (FEIM), Argentina
• Gender AIDS Forum, South Africa
• International Community of Women Living with HIV and AIDS (ICW) - used in Botswana, Lesotho, Namibia & Swaziland
• Instituto de Educación y Salud, Peru
• Planned Parenthood Federation of Nigeria, North-East Region
• Punto de Encuentro de la Comunidad, A.C., Mexico
• Women Fighting AIDS in Kenya (WOFAK)

All project partners used questionnaires based on the sample questions provided in "Fulfilling Reproductive Rights for Women Affected by HIV/AIDS: A Tool for Monitoring Progress towards Three Millennium Development Goals" (click here for a summary). The questions were answered in various ways; for example, in Nigeria, respondents completed the surveys in writing, while in Argentina and Kenya interviewers read out the questions and recorded responses. Five of the organisations also set up focus-group discussions (FGDs) with respondents, which generally lasted about 60-90 minutes. Ipas cites A. Faulkner who noted that "User involvement in research is not just about making the interviews more user-friendly to the research participants....It is not enough to invite a user to sit on an advisory group. Researchers need to acknowledge the change in ethos that this represents and to understand that we, as service users, have access to some specialist knowledge and views that may be valuable in the conduct of the research."

In brief, the monitoring tool project showed that:
"provision of benchmarks, together with some very simple guidance on implementing a data-collection exercise, was sufficient to enable partners in different countries to collect information on the same topics. Because the respondents were not always familiar with the topics raised, the project gave the partner organizations an opportunity to simultaneously gather data and educate respondents about some issues." Furthermore, "the project presented the staff and collaborators of some partner organizations with their first opportunity to engage in a simple research/data-collection exercise, thereby contributing to capacity-building among NGO staff and some women living with HIV." Both project team members and respondents considered this to be "a learning experience and exercise in awareness-raising around important issues. Project coordinators also commented on the usefulness of the findings for their advocacy effort."

However, "The data collected by the different projects showed that much remains to be done if the MDGs are to be realized." For instance:

• "Knowledge about sexual and reproductive rights was lacking among many HIV-positive women in the various countries; health-care providers and policymakers also appeared to have limited information.... Interventions focused on human rights, stigma and discrimination can further promote greater meaningful involvement of affected and infected women in the formulation and evaluation of policies and programs."
• "Women need to know that engaging in [voluntary counseling and testing, or] VCT will produce benefits for themselves and their families....VCT sites and services must be rapidly expanded, especially in more rural areas, and should involve HIV-positive women as co-managers, counselors and evaluators in order to improve their quality and relevance for other women."
• "...more attention must be paid to prevention measures that are especially relevant for women. For example, given the high levels of violence against women that still exist around the world, [post-exposure prophylaxis, or] PEP must be made easily accessible and affordable, at least for survivors of sexual assault."
• "HIV-positive women must be able to make fully informed and voluntary decisions about pregnancy and parenting. They need relevant and specific information on all their fertility-regulation options..."

Project recommendations include:

1. Disseminate practical information on human rights standards and ways in which women can claim their rights through "articles in newsletters and journals, brochures and leaflets, radio and TV programs, the Internet and through capacity-building sessions for both service providers and clients/patients."
2. Expand and intensify training for health professionals on occupational risks of HIV infection in conjunction with capacity-building on the rights of people living with HIV/AIDS - "Such training should emphasize that health-care providers also have rights regarding their labor situation....It is important to build a stronger rapport between health-care providers and women living with HIV....Training sessions and workshops on the ethics of service provision to people living with HIV/AIDS should incorporate HIV-positive women as paid facilitators."
3. Promote capacity- and skills-building for women affected by and living with HIV/AIDS so that they can participate meaningfully in advocacy and policymaking - "NGOs and universities can provide a wealth of information on advocacy and policymaking strategies and procedures, and can contribute greatly to enhancing women's skills....Professional policy analysts and researchers can mentor and guide female NGO staff and HIV-positive women....[C]apacity-building also needs to be a two-way process so that governments, businesses and organizations learn how to create meaningful involvement of women affected by and living with HIV/AIDS."
4. Work with associations of HIV-positive women and women's groups specifically to develop advocacy around broader sexual and reproductive health rights - "...advocacy efforts can involve three strategies: provision of information and education to women, health-care providers and policymakers on the issues; lobbying for adequate legal and regulatory provisions to enable these aspects of reproductive-health care to be offered; and training of HIV-positive women...and...health-care providers..."
5. Employ women living with HIV in prevention, VCT and treatment programmes as paid counselors and treatment adherence advisers - "Associations of people living with HIV/AIDS are increasingly offering treatment literacy programs so that HIV-positive people are better informed about all aspects of their medical treatment. Some graduates of these programs could be trained and paid to act as advisers on treatment adherence."
6. Prepare and publish materials on family planning, contraception and options for avoiding and dealing with unwanted pregnancies in the context of HIV/AIDS - "While it is advisable for women living with HIV to be informed about the double protection against re-infection and pregnancy offered by male and female condoms, they also should receive information about other contraceptive options..."
7. Advocate for the possibility of HIV-positive people adopting children...
8. Advocate for regular monitoring of SRH benchmarks by female NGO staff and women affected by the HIV/AIDS epidemic...