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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.

This is a report on a study conducted with Lesbian, Gay, Bisexual, Transgender and Intersex (LGBTI) people to explore their Sexual and Reproductive Health and Rights experiences and needs. The research exercise involved HIV positive LGBTI people and LGBTI NGOs in Kwa-­Thema in Springs, Gauteng, South Africa. The main objective of the research was to collect data on sexual and reproductive health needs and experiences of LGBTI community, especially among people who are living with HIV.

This study was carried out by the National Network of Positive Women Ethiopia (NNPWE) in collaboration with GNP+ and NEP+. The study is an expansion of an earlier study focusing on the Adama and Addis Abeba regions. The study concludes that while policies are well defined, there are large gaps due to poor infrastructure and limited resources. Knowledge has increased but there remains large difference betwen urban and rural settings.

Based on input from networks of people with HIV worldwide, Advancing the Sexual and Reproductive Health and Human Rights of People Living with HIV (the ‘Guidance Package’) was developed by GNP+ with its global partners. The Guidance Package explains what needs to be done by global stakeholders in the areas of advocacy, health systems, policy making, and law to support and advance the issues of sexual and reproductive health and rights (SRHR) – and why they matter.

The Guidance Package has been further elaborated into five policy briefings on key populations living with HIV and advancing SRHR for PLHIV: people who use drugs, sex workers, men who have sex with men, prisoners and migrants. These set of policy briefings take the Guidance Package to a more in-depth level, taking the ‘lens’ of a population of people living with HIV and articulating specific and concrete advocacy and programme recommendations that meet the needs of those key populations of PLHIV.

Available in English and French.

With improved access to treatment for people living with HIV, many are now able to live longer. As a result, there is growing interest in overall quality of life issues, including the sexual and reproductive health of people living with HIV. During the Leadership Through Accountability programme, GNP+ and it’s national partner networks have conducted in-country research using the Guidance Package: Advancing the Sexual and Reproductive Health and Rights of People Living with HIV.

The studies conducted each focus on specific populations within the different countries. In Nigeria the study provided an overview of access to sexual and reproductive health information and services by sero-discordant couples. Their access to SRH counseling and support services were examined, as was the capacity and preparedness of the Nigerian health facilities and service providers to manage the SRH issues and needs of sero-discordant couples.

With improved access to treatment for people living with HIV, many are now able to live longer. As a result, there is growing interest in overall quality of life issues, including the sexual and reproductive health of people living with HIV. During the Leadership Through Accountability programme, GNP+ and it’s national partner networks have conducted in-country research using the Guidance Package: Advancing the Sexual and Reproductive Health and Rights of People Living with HIV.

The studies conducted each focus on specific populations within the different countries. In Zambia the exploratory qualitative study sought to examine the sexual and reproductive health (SRH) needs, concerns and barriers to accessing related services for adolescents aged 10-19 years living with HIV in Zambia.

Advancing the Sexual and Reproductive Health and Human Rights of Injecting Drug Users living with HIV (GNP+ and INPUD, 2010) was developed by GNP+ and the International Network of People who Use Drugs (INPUD) in consultations with a reference group composed of people who use drugs living with HIV and activists. The report is based on the Guidance package on SRHR of people living with HIV.

Available in English, French, Russian and Spanish

Advancing the Sexual and Reproductive Health and Human Rights of Prisoners living with HIV (GNP+, 2010) has been developed in consultation with representatives from Australia’s National Association of People Living with HIV/AIDS, Justice Action, a prisoners’ action group and a former manager of HIV services in prison. The document was authored by Kate Dolan, Program of International Research and Training, University of New South Wales, Australia.

Available in English, French, Russian, Spanish

Advancing the Sexual and Reproductive Health and Human Rights of Sex workers living with HIV (GNP+ and NSWP, 2010) was elaborated by GNP+ and the Networks of Sex Work Projects (NSWP) and is based on consultations with sex workers living with HIV conducted by the Asia Pacific Network of Sex Workers (APNSW) and discussions with individual HIV-positive sex workers in other regions.

Available in English, French, Russian, Spanish

Advancing the Sexual and Reproductive Health and Human Rights of Men who have Sex with Men living with HIV (GNP+ and MSMGF, 2010) was elaborated by GNP+ the Global Forum on MSM and HIV (MSMGF), in close consultation with MSM living with HIV, including staff and steering committee members from MSMGF and staff from AIDS Project Los Angeles and MSM and other sexual health advocates around the world.

Available in English, French, Russian and Spanish

Advancing the Sexual and Reproductive Health and Human Rights of Migrants living with HIV (GNP+, 2010) was elaborated in consultation with people living with HIV through the African HIV Policy Network (AHPN), an umbrella of organisations from migrant communities in the United Kingdom. The document was authored by Ibidun Fakoyan.

Available in English, French, Russian, Spanish

With improved access to treatment for people living with HIV, many are now able to live longer. As a result, there is growing interest in overall quality of life issues, including the sexual and reproductive health of people living with HIV. During the Leadership Through Accountability programme, GNP+ and it’s national partner networks have conducted in-country research using the Guidance Package: Advancing the Sexual and Reproductive Health and Rights of People Living with HIV.

The studies conducted each focus on specific populations within the different countries. In Kenya the study focussed on the high drop-out and failure rates of prevention of mother to child transmission of HIV (PMTCT) services.

With treatment and care becoming increasingly available, PLHIV are regaining their health, living longer, fulfilling lives, and planning for their futures. This includes decisions about sex, sexuality and the possibility of starting or expanding families. Despite this, there still prevails an underlying assumption that one’s sexual and reproductive life stops when one becomes HIV positive. Often society at large, health care workers, decision makers and even PLHIV themselves hold this assumption.
For a person living with HIV, dealing with sex means dealing with difficult issues at vulnerable moments and in vulnerable settings. Often people living with HIV are expected to disclose their HIV status before engaging in sexual relations – in some countries it is even a legal obligation, even though this may lead to (gender-based) violence. People living with HIV are expected to initiate and engage in safe sex strategies to prevent the transmission of STIs or transmitting HIV to one’s sexual partner(s). With regards to family planning, people need to be able to make well- informed decisions around conceiving, pregnancy, preventing mother to child transmission and breastfeeding.

Available in English, French, Russian and Spanish