Positive Women Monitoring Change (updated 2008)

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.

How the tool has been used

This section describes some of the (potential) ways the PWMC tool can or has been used, with direct xamples from ICW’s experience below. One of the most potentially transformative exercises we have
found, however, has been the actual process of developing the tool in the first place, or working with ther groups of women to develop their own tool – a process which involves the women engaging olitically with their own experiences and environments, envisioning a potentially different future, and haping their own messages, indicators or frameworks that reflect a contextualised ‘ideal’. This process
not only helps women analyse their context and situation, but also enables and motivates them for ongoing advocacy using a tool over which they feel a sense of ownership, far more than through the use of
a ‘ready-made’ tool.

Ways of using the PWMC tool:

  • As a framework for gathering, analysing and presenting information. For example, in one on one interviews or to guide a group discussion and as a structure for developing reports.
  • To raise collective awareness among positive women of issues affecting their lives as advocacy issues, and to mobilise around these issues through community assessments and needs
  • assessments. It also offers a structure to bring positive women together to discuss issues that are often overlooked in other forums.
  • To raise awareness and issues of concern among government representatives, service providers, civil society organisations, etc, (i.e., “have you thought about…?”)
  • Workshopping to help positive women prioritise issues and set advocacy agendas
  • Evidence gathering for advocacy.
  • Use as a check list when asking questions at a meeting.
  • To monitor government commitment to rights in policy and practice.
  • Push for academics to use the tool (or some of the questions) in their research. (NB Researchers can also use ICW’s ethical guidelines to ensure that they involve positive women in a way that is not solely extractive, or in policy analysis)
  • CSOs can adapt it to monitor their own work or the work of others.
  • In the development of ICW’s M&E framework and to guide advocacy plans

Further benefits of the PWMC tool:

  • The process of developing the tool for local contexts provides an opportunity and framework for positive women to engage with policy documents
  • The tool was developed “by and for positive women” exemplifying a different focus for research whereby positive women are firmly at the centre of the process.
  • With accompanying fact sheets and policy briefings on the issues it addresses, the tool provides direct information and learning on these issues.
  • By incorporating a training curriculum, the PWMC package also can be used for building research and M&E skills and capacity

To date, ICW has used the tool in a number of different settings and for a variety of purposes. Where applicable, links are included to reports of these experiences for more detailed accounts and outcomes.

Swaziland and Lesotho, 2005 and on-going. The tool was developed through workshops held with HIV positive women in Swaziland and Lesotho (see above), with support from SIPAA/ActionAid. Since then training workshops have taken place in different parts of Swaziland and Lesotho, using the tool’s frameworks on ACTS, SRHR and VAW
as models for awareness raising and defining current priorities as a basis for on-going ICW work in the countries. (Contact Emma at emma@icw.org for copies)

South Africa, 2006. The tool was adapted for a rapid assessment of positive women’s experiences of accessing sexual and reproductive rights. A questionnaire was developed from the SRHR section of the
tool, and used in focus groups of positive women. The women were also encouraged to use the questionnaire in their own communities and support groups. Findings from the rapid assessment were used to develop the framework for an advocacy training and development workshop and to develop a tool on advocacy and SRHR.

  • The advocacy tool
  • an article about the advocacy training, featured in Oxfam journal Gender and Development.

Uganda, 2007. The PWMC tool was adapted and used in collaboration with Interact Worldwide to do SRHR research with HIV positive women, health care providers and policymakers. Building on this, a rapid assessment on the SRHR experiences of HIV positive women in different parts of the country was also carried out. This has formed the basis of ICW advocacy on SRHR in Uganda. Report available

Namibia, 2005, 2008. The ACTS section of the tool was used to inform a mapping of treatment and care services available to HIV positive women commissioned by the WHO (see also Kenya and Tanzania). This project gave rise to new ICW advocacy materials, reports and messages which were disseminated at the International AIDS conference in Toronto and informed in our global advocacy work in this area. During 2008, a Young Women’s Dialogue Project was run in Namibia to build the capacity and develop an advocacy agenda for young HIV positive women in Namibia. Among a variety of workshops and other activities, young women were trained to use the tool for data gathering, and monitoring, and from it also developed a call for action, the Young Women’s Dialogue Charter – Namibia.

In Mozambique and other countries in the Southern Africa region, the tool has been used to shape discussions and mobilise positive women through workshops which aim to inform our advocacy and strategic directions in the region.

Kenya and Tanzania, 2005. Treatment mappings were carried out with support from the WHO (see also Namibia above) through focus groups framed by the relevant sections of the monitoring tool. Reports available:

Results have fed into much of our recent advocacy work and messages.

Botswana, 2008. Working in collaboration with the Botswana network on Ethics, Law and HIV/AIDS (BONELA), women from the Botswana network of women living with HIV and AIDS (Bomme Isago) have
been involved in trainings around SRHR and have worked with the tool to carry out monitoring of sexual health services available to HIV positive women in the country. (Contact Luisa at Luisa@icw.org for
further details and reports)

ICW global M&E framework, 2008. As a key informing document of much of our advocacy work around ACTS, SRHR and VAW, Positive Women Monitoring Change also forms the basis of our own M&E
work. We are currently developing a new, universal M&E framework as part of our next international strategic plan. This will be launched in 2009.


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