Positive Women Monitoring Change

A monitoring tool on access to care, treatment and support, sexual and reproductive health and rights and violence against women created by and for HIV positive women, updated 2006.

In February 2005, the international Community of Women Living with HIV and AIDS (ICW) in collaboration with ActionAid-managed initiative Support for the International Partnership against AIDS in Africa (SIPAA), carried out workshops in Swaziland and Lesotho. The workshops aimed to examine the national response of each country to the HIV and AIDS pandemic, with particular reference to international policy commitments (in particular the GIPA principle, the Abuja Agreement of 2001, and the UNGASS Declaration of Commitment of 2001). First was an analysis of the lived experiences of the participants. An analysis of the documents was undertaken, first to see to what extent they addressed the rights, needs and concerns of HIV positive women, and second to see whether HIV positive women had experienced the effects of those political commitments on the ground. Further analysis was carried out into the monitoring and reporting systems used to report on progress against international policy processes, and finally, workshop participants developed their own monitoring and evaluation tool, to assess progress on issues both included and not included in the international policy documents.

The resulting tool is intended for use by HIV positive women, and other actors working in the field of HIV and AIDS with a commitment to gender, human rights and in particular the rights of HIV positive women. It can be used for advocacy and M&E purposes. While it refers directly to the Abuja, UNGASS and GIPA commitments mentioned above, it can also be adapted easily to monitor progress against, and identify gaps in the 3x5 initiative, the Millennium Development Goals (MDGs) and the President's Emergency Plan for AIDS Relief (PEPFAR) and national strategic plans to reduce the spread and mitigate the impacts of HIV and AIDS.

The workshop examined three key areas in which HIV positive women routinely come up against barriers in accessing their rights. These are: access to care, treatment and support (ACTS), sexual and reproductive rights (SRR), and violence against women (VAW). All three areas have resonance for all women regardless of their HIV status, but hold particular concerns for HIV positive women, who face additional barriers in accessing their rights, and for whom contravention of their rights may have disastrous or fatal consequences.

Most available national and international level monitoring and reporting tools are gender blind, or at best gender neutral, but do not draw particular attention to the priorities of women or assess positive improvement in the lives of women in general, or HIV positive women in particular. This tool intends to explore the realities of HIV-positive women's lives, including young HIV positive women (aged 18-30), whose voices are consistently left unheard in decision making fora, and whose rights, concerns and needs both differ from those of older women and are usually overlooked. The tool intends to provide a platform for the voices of other marginalised women too, such as disabled women and sex workers. Thus the first section of the tool looks at positive women's knowledge and awareness of rights and issues that concern them in the three areas mentioned above (ACTS, SRR and VAW), but also their lived experiences of putting or attempting to put that knowledge into practice, and the challenges that they face in doing so.

The second section of the tool looks at the experiences and attitudes of service providers working in the areas of ACTS, SRR and VAW. This section explores the strengths and weaknesses of available services, and also considers the constraints and barriers service providers themselves face in providing quality care and support in resource poor, remote and under-prioritised settings. Women can use first part of tool to cross-check information they receive from service providers.

The third section of the tool takes the survey to government level, where it can be used to hold governments and ministries to account on their promises, and to advocate on priority issues using evidence from both HIV-positive women and service providers, as well as monitoring the progress of government commitments.

It is hoped that findings and reports can then be fed into policy making fora at local, national, regional and international level by HIV positive women living, using existing networks of positive women such as ICW, and national positive women's networks, or by establishing national chapters of ICW or other national networks of positive women. A user guide to accompany the tool is in the process of being developed.

A work in progress…

When the tool was used in Swaziland and South Africa it was considered to be very useful in guiding day long discussions. However, in situations when time was of the essence shorter versions were developed. For this reason we include here short versions of all the nine sections of the tool for when you only have a limited time to ask questions. Questions in the long version have also been adapted in line with suggestions from these trials.