“We love what we are doing” - Persons Living with HIV
Persons living with HIV in Luwero and Nakaseke districts of Uganda have now become involved in the intricate detail of managing their affairs. This has been more pronounced in the Community Health Alliance and Positive action for children project of expanding the role of People living with HIV (PLHIV) in increasing access to PMTCT services, using the network model.
Closer to the project
Through project advisory committees (PACs), groups of people living with HIV provide joint support supervision, monitoring of group activities implemented and offer feedback plus technical guidance to the networks to facilitate forging a way forward for improving the organizational and implementation process by the networks.
According to Hassan Mutebi Nakaseke PHA district coordinator,
“We feel that this approach to project implementation suits us best and we love it. This is because firstly, we have been involved in most of the stages, from design to implementation and monitoring through mapping out activities. But secondly, we are working for ourselves in all that we do. We are working with the leadership at the district to coordinate activities in the field. We also call the district leadership to organise quarterly joint supervision visits in the district. Not only does this make us aware of what is good for us, but it also gives us the voice to demand for what we want and also sometimes tell the authorities what we feel may not be going right”
Another PHA member from Luwero Marriam Namutebi is in agreement with what had been observed by Hassan,
“Our involvement is very positive because it elevates us from merely patients who were receiving medications to strong voices that determine the course of service delivery for persons living with HIV and those at the risk of getting HIV. That is why I am proud that I disclosed my status – I move with all my work tools like condoms and at any time I am ready to articulate what I feel I need to be said to the community where I go”
Strengthened interactions
According to the new guidelines provided to PHA group leaders and network executives, there has been a call to enhance a greater outreach within the communities. The guidelines state,
“The drama group through music dance and drama will perform work in the areas of their reach that don‟t involve using a car. The group volunteers who educate others in the communities need to work with religious leaders (churches and mosques) to educate people of Antenatal care (ANC), prevention of mother to Child transmission, HIV, etc”
In addition, the PHA groups were encouraged to make use of testimonies in awareness by involving successful mothers from the PMTCT program. This strategy would use women from communities where awareness is done, to inspire other women to access the service within an area.
New work strategies
According to the new work strategies adopted by the network support agents (NSAs), they have been told to modify on how they work by actively engaging with women at immunization days to target mothers who have not attended ANCs and those who make deliveries outside the health facilities. They have also been called upon to take opportunity of any outreaches organised by the health facility or other NGOs to educate the communities about PMTCT and HIV.
The network Model of referrals and linkages has been a core of implementing the ViiV funded PMTCT project ever since the project started in 2012. The model brings together providers of services PLHIV network individuals living and affected by HIV/AIDS in order to enhance service delivery and utilization, reduce PMTCT related stigma and discrimination and bring service providers closer to the communities they service.
According to Abdalla Musisi Zziwa of Nyimbwa PHA,
“Such an approach has enabled our members to see for themselves how services that affect them are implemented. They themselves decide on what is best for them and when they make a mistake, it affects them, without blaming anybody. The other thing is that different members are involved and an opportunity is given to people who have never been chosen to take part in a community engagement activity. When we have a responsibility, anybody that has not been considered is free to say, „I have never been considered; let me take up that opportunity‟. In such a way, we ensure that people are not left out of involvement in the PMTCT project and other activities involving persons living with HIV in Luwero.”
According to the World Health organization, the right to health and the right to sexual and reproductive health, entitle women living with HIV to the treatment care and services necessary for them to prevent mother to child transmission when they are pregnant. Another report by the World Health organization, UNAIDS and UNICEF in 2010, also notes that, in low and middle income countries, an estimated 45% of HIV positive pregnant women receive at least some antiretroviral drugs to prevent mother to child transmission of HIV.
The groups of persons living with HIV in Uganda have also embraced the Greater Involvement of People Living with HIV/AIDS Principle (GIPA) as a commitment like other many people involved in the community-based HIV/AIDS movement. GIPA mainly aims at the inclusion of people living with HIV/AIDS in service delivery and decision-making processes that affect their lives. In Uganda, the Community Health Alliance (CHAU), has drawn a lot of experiences working with people Living with HIV. As the VIIV funded PMTCT project nears its conclusion, which is implemented by persons living with HIV, there has been a lot of involvement of these groups in discussions, the use of volunteers and recruitment of local activists, and community members to eliminate the transmission of HIV from Mother to child.
There are of course challenges to the implementation of the GIPA principle in community-based HIV/AIDS organizations in Luwero and Nakaseke Uganda. Hassan Mutebi a network support agent in Nakaseke says that
“Involving people living with HIV has its own challenges, but the greatest has to do with the health, of the community implementers. There are also issues of stigma and disclosure, but many of the persons living with HIV have tried to overcome it.”
The experiences of the PHA groups involved in the PMTCT project under the VIIV healthcare in Luwero show that women fear so much about HIV testing because of the possibility of a positive HIV result.
According to Sudat,
“When the woman who is pregnant is introduced to the idea of testing, she immediately starts exploring the immediate repercussions of such knowledge. Firstly, how will the husband receive such news? Then her child, the neighbors, friends and the whole community? If she thinks that that testing will destroy her life, then she would rather not test”
However Nakakeeto Sudat notes that the atmosphere created by the health workers has made the women comfortable about testing within the antenatal clinic. Two years after the initiation of the ViiV funded PMTCT at many of the facilities where the Network Support Agents (NSA) are located more, women are informed about the procedures before attending.
As Nakiwala Marriam notes,
“Most women we deal with have learned about routine HIV counselling and testing during their visit to health facilities. Some have shared the information with their families and friends. Many women also accept testing because they have good access to information on the benefits of HIV testing both from our groups and the health workers”
Women in Nakaseke mentioned that taking an HIV test was a difficult step to make. The pregnant women also revealed that they feared a positive test result because it is associated with death, living with HIV and being blamed for bringing HIV infection to the family. However, the routine provision of HIV testing helped such women to overcome the fear and take the test. On the other hand, most women strongly believed that HIV testing was beneficial, especially by enabling those who test HIV positive to protect their babies from HIV infection through enrolling in the PMTCT programme.
Other challenges
Whereas, the high acceptance of HIV test is a reflection of women’s conformity to the moral imperative of doing ‘good’ for their babies. The women also appreciate that HIV testing is beneficial since those found to be positive are able to access HIV treatment for themselves. The need to protect their children and the concern for their own health are seen as key reasons for women’s acceptance of HIV testing during pregnancy.
“Communication is also still a challenge to us. We have to take responsibility to communicate with our colleagues in the different places. The roads are poor and the means of transport are not available. We are sometimes sick and weak, but the good news is that we try as much”
“We are basically volunteers, and as people living with HIV, we do all our planning, whether there is money or not. The challenges are immense but, challenges are always there in our society”
“Perhaps the greatest challenge of all is having to do so much on humanitarian basis. If we do not do the work, nobody will do it. The challenge is really upon us”
“Our children are bright and promising but the challenges and fear that we may not be able to educate them lingers in our mind. We try all in our means to ensure that they go to school and attain a good education.”