Uganda: The role of communities in preventing parent to child transmission of HIV

Many groups and networks of people living with HIV are very knowledgeable about prevention of parent to child transmission and taking on active roles in enhancing service delivery.

In Uganda, programmes to help parents avoid transmitting HIV to their children are also making an important contribution to increasing the understanding of family planning.

In addition to recognising the need and importance of having healthy children, free from the HIV virus, programmes address issues around producing a manageable number of children, spacing children or, where appropriate, bearing no more children.

Many groups of people living with HIV in Luwero and Nakaseke in Uganda are very knowledgeable about such work and are taking active roles in enhancing the delivery of such programmes.

Strengthening community referrals

The International HIV/AIDS Alliance in Uganda, with funding from ViiV Healthcare’s Positive Action for Children’s fund, is implementing a three-year prevention of parent to child transmission (PPTCT) community referral strengthening project. The programme, which started in January 2012, is focused on expanding the role of people living with HIV and communities in increasing access to PPTCT services. It is partnering with community-based networks, groups of people living with HIV, district-based health facilities and various NGOs and faith-based organisations. Four local district governments are also involved – Luwero, Iganga, Mukono and Nakaseke.

The project will contribute to Uganda’s efforts to reduce new paediatric HIV infections by increasing access to PPTCT, HIV and antenatal care services through community-based interventions in the four districts. It is expected to increase demand and uptake of PPTCT services, strengthen capacity of people living with HIV networks to support such services and increase family planning access for women living with HIV.

The Alliance, building on its previous experience of working with networks of people living with HIV, has trained more than 40 network support agents in the four districts to link communities and their members to health services. Each agent is equipped with a bicycle to help them get to the health facilities and the communities they support. Their responsibility is to refer mothers to health facilities in order for them to access services.

The challenges of implementing services

According to people living with HIV groups in Luwero and Nakaseke, the major challenge they face is the fact that mothers do not all want to get tested. Stigma is the main worry for people involved with HIV programmes. As stated by one member living with HIV: “There is some degree of pretense that people living with HIV do not have a right to or should not produce children. This is unfortunate because there are many people living with HIV who wish and very much intend to have children.”

One Bukuma group member said: “Those who have been tested do not always disclose their status. Women fear that, after disclosing their status of being HIV positive or negative, their husbands may suspect them of taking the tests ‘behind their backs’.”

Another member said: “Issues of HIV testing can create a strained relationship in couples and if they are not in agreement on when to test, progress can be slow.”