Mother and Child photo courtesy of UNAIDS

A new report ‘Walking in our shoes; Perspectives of pregnant and breastfeeding women living with HIV on access to and retention in care in Malawi, Uganda and Zambia’ released today in honour of International Women’s Day, 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 the Global Network of People living with HIV (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.

Rebecca Matheson, ICW Global Director explains “Over time the perspectives and experiences of women living with HIV have been instrumental in shaping policy and programs to ensure they respond to our needs. This research and the report provides evidence from women’s voices on what has been supporting and enabling facilitators for adhering to treatment and retaining in care. We applaud the women for sharing our collective experience because the insights from this report will contribute to the achievement of global HIV targets.”

Critically, the women living with HIV who were interviewed called for increased respect for their rights and dignity and said initiatives to address stigma and discrimination helped them retain in care:

“The health workers are very friendly and they don’t discriminate against us.” Woman living with HIV, Lambulira, Malawi

“It is confidentiality. When these people have confidence in you that can maintain them in care.” Healthcare worker, Entebbe, Uganda

“What motivates me to come for medication is that the doctors do not treat us badly. They do not bark at us and order us around saying, “I told you to go there”. The doctor handles you very well. He or she cares to look for your file if it gets lost so that you leave this place with medication.” Woman living with HIV, Entebbe, Uganda

The women interviewed also highlighted the importance of quality woman-centred services:

“We only have a single day when you can collect treatment. So we all come on the same day. We all make one big queue. Sometimes we see some women who keep going around without joining they queue because they are ashamed. We should have a system where you can come to collect drugs any day so that you can come to the centre at the time that is most convenient to you.” Woman living with HIV, Katete, Zambia

“The fact that the hospital combined baby clinics with ART appointments motivates me to stay on treatment because I have time to do other personal things” Woman living with HIV, Chitipa, Malawi

Another key facilitator identified in the report is the ongoing need for sustained practical and emotional support to empower women living with HIV:

“At the support group, we share with each other the challenges that we are facing while taking the ARVs and encourage one another on how we can overcome them.” Woman living with HIV, Makata, Malawi

“It’s the Community Volunteer, she really encourages me. Sometimes I am discouraged and want to stop medication but she encourages me.” Woman living with HIV, Chimtende, Zambia

“Women should get good counselling and encouragement. They should be told how they will feel when they start taking treatment …. They should be told the benefits, this is not the same for everyone; sometimes you can be sickly if you do not take medication however, with medication that can stop.”
Woman living with HIV, Chimtende, Zambia

“We are already using the findings of this research very practically to work in collaboration with our Ministry of Health to build on Malawi’s programmatic successes and guide our work together to improve the quality of services and increase retention of women living with HIV in prevention of vertical transmission programming”, said Clara Banya, ICW Malawi, Research Team Member and Advocate

Laurel Sprague from GNP+ said: “Now that countries are offering lifelong treatment for women living with HIV it is critical that we support women to remain in care to monitor and maintain their own health and to prevent vertical transmission. Our research showed that women have a strong sense of the factors that can support them on their path of lifelong treatment. We must make sure we listen and adapt healthcare systems to better support women and their families.”

Global Network of People Living with HIV (GNP+) works to improve the quality of life of all people living with HIV. This means we advocate for, and support fair and equal access to treatment, care and support services for people living with HIV around the world.

The International Community of Women Living with HIV (ICW) is the only grassroots global network run by and for women living with HIV.
ICW is the voice and representation of women living with HIV, in all our diversity. We currently work in 120 countries and through 10 regional networks:
Asia Pacific, Caribbean, Central Africa, Eastern Africa, Europe and Central Asia, Latin America, the Middle East and North Africa (MENA), North America,
Southern Africa, West Africa, the Chapter of Young Women and Girls (CYWAG) and our newly launched Indigenous Network of Women Living with HIV.

For More Information:

Florence Anam, Global Advocacy and Communications Manager

Coco Jervis, Senior Communications and Advocacy Officer