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This report highlights the key factors that facilitate retention in care for women living with HIV and calls for increased focus on rights and dignity in care. The report presents the findings of community-led research related to the viewpoints and experiences of women who were initiated on antiretroviral treatment during pregnancy or breastfeeding and explores their perspectives on factors that have enabled them to successfully adhere to their treatment and retain in care.

The research for this report was coordinated jointly by GNP+ and the International Community of Women living with HIV (ICW) in partnership with ICW Eastern Africa and ICW Malawi and the Network of Zambian People living with HIV/AIDS (NZP+). This research, carried out by and for women living with HIV was conducted in three countries, Malawi, Uganda and Zambia, all of which are early implementers of the lifelong ARV treatment program (Option B+). Focus group discussions were held with women living with HIV who utilized services along with key informant interviews with healthcare workers, government representatives, international NGOs and community groups.

The aim of this research project is to develop a set of best practices on how healthcare systems can retain women living with HIV into lifelong care now that pregnant women living with HIV are being offered lifelong treatment. The report outlines from their own perspectives what factors help women living with HIV adhere to lifelong treatment and care.

A treatment literacy guide for pregnant women and mothers living with HIV

Women living with HIV from eight countries have shared their expertise to shape the content and design of the guide and it was formulated in direct response to a call from communities for up-to-date, evidence-based resources.

Positive Health, Dignity and Prevention for Women and their Babies: A treatment literacy guide for pregnant women and mothers living with HIV is intended for use by networks of women living with HIV, women’s groups, peer educators and others wishing to provide information and guidance to support women living with HIV through the decisions they will need to make before, during and after their pregnancy.

The guide has 12 modules covering issues ranging from human rights to treatment adherence and nutrition. It is made up of three separate tools:

  • facilitator’s manual
  • illustrated flipchart
  • accessible poster

The facilitator’s manual and flipchart are intended to be used together by leaders of support groups, peer educators or lay counselors to facilitate small groups or community sessions with women living with HIV. The poster can be displayed anywhere where it will be seen by women living with HIV and their families, such as: clinic rooms, church halls, waiting rooms and community education spaces.

This guide was developed by members of the Community Engagement Working Group (CEWG) of the Inter-Agency Task Team (IATT) for Prevention and Treatment of HIV Infection in Pregnant Women, Mother and Children, a group committed to strengthening global, regional and national partnerships and programs that address the survival of pregnant women, mothers and children living with HIV.

A new report released by the Global Network of People Living with HIV (GNP+), the International Community of Women Living with HIV (ICW), and other local network partners, calls for dignity and rights in family planning programmes for women living with HIV in Cameroon, Nigeria and Zambia. that calls for discrimination-free family planning services for women living with HIV. The study examined the experiences of women living with HIV in accessing family planning services.

This set of modules is designed to be used by communities to support the use of the new resource, Driving the HIV response: A community guide to the WHO 2013 Consolidated Guidelines on the Use of Antiretroviral Drugs for Treating and Preventing HIV Infection.

The downloadable modules cover different topics, and include:

The Global Network of People Living with HIV (GNP+), the International HIV/AIDS Alliance and STOP AIDS NOW! developed the Community Guide in response to the World Health Organization (WHO) 2013 Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV. It aims to assist community leaders and civil society organisations to:

  • better understand the new WHO recommendations and guide country-level discussions on priorities (within civil society and between civil society and government)
  • ensure the meaningful participation of communities most affected by HIV in national decision-making and planning
  • advocate for any changes or further research necessary to adapt recommendations to suit their country context
  • mobilise and prepare communities for the implementation of new recommendations.

In mid-January 2015, women living with HIV came together with the World Health Organisation (WHO) to consult and give input to a global survey on sexual and reproductive health and human rights of women living with HIV. Dr Manjulaa Narasimhan of WHO’s Reproductive Health and Research Department led on conducting the survey, which will inform WHO as it updates its 2006 guidelines on this topic.