The greater involvement of people living with AIDS (GIPA), as a principle, was formalised at the 1994 Paris AIDS summit. One of the key considerations of GIPA is the realisation of the rights and responsibilities of people living with HIV in the choice of treatment, decision making and policy formulation.
The Networks project
The USAID/International HIV/AIDS Alliance Networks project, which ran from 2006 to 2009, was designed to enhance the involvement of people living with HIV in service delivery and policy formulation. Its aim was to increase access to and utilisation of HIV/AIDS prevention, treatment, care and support services.
Almost three years after the implementation of the Networks project, people living with HIV in Uganda are still benefiting. For instance, interactive networks and linkages of human and other resources have been created under the project to implement prevention of mother to child transmission (PMTCT) activities. And now newly released research on the Networks project has brought it back on the agenda.
When the project came to an end in 2009, a USAID funded evaluation on the project found it had met many of its objectives. For instance, Network Support Agents (peer outreach workers trained to make referrals under the project) and PLHIV (people living with HIV) groups referred 115,819 individuals to healthcare facilities and home based care during the fourth quarter of 2008.
Some results exceeded expectations. For example, in the second year of the project, twice as many individuals were provided with palliative care as planned (71,679 versus 39,000). During the first six months of the project’s third year, programmers achieved or exceeded annual targets for palliative care and referrals.
Jenffier Gaberu, a team leader working with Alliance Uganda, says: “In the Networks model we involve the community and the people to strengthen the linkages between the community and the health facilities. In the model, the key people in the community are the groups of people living with HIV.”
A recent study by Hogson, et al (2012), observes that: “[For] Networks of [PLHIV] … facilitated income generation, music, drama and vocational skills development. A key element was the training of over 1,300 Network Support Agents (NSAs), seconded to work alongside healthcare providers in 640 facilities.
“NSAs provided additional support for PLHIV and their families by sensitising communities, performing referrals, promoting counselling and testing and increasing access to HIV and general services, for example by distributing anti-malarial medicines, following up clients for TB and HIV treatment.
“Individual groups certainly offer important support for PLHIV…Networks, which being part of a broader coalition, allow for diversity of service delivery, and (in particular) well defined roles for individuals to participate in community-based support, mobilisation and sensitisation.”
Another retrospective study conducted by Gitau- Mburu D, et al (2012), Expanding the role of community mobilization to accelerate progress towards ending vertical transmission of HIV in Uganda: the networks model, notes that: “By placing persons with HIV at the centre, the networks model offers a mechanism for strengthening communities and male involvement in preventing vertical transmission of HIV. Networks of People Living with HIV can serve as effective mechanisms for mobilising communities …Networks can potentially increase coverage of services, challenge inequities in service delivery, reduced missed opportunities and reaching the poorest and the most marginalised community members, whom health systems are unable to reach, and encourage male participation.”
According to Hassan Mutebi, a NSA from Kiwoko in Nakaseke district of Uganda: “These networks where we belong are good. For the project, the community knew what was going on. The networks were successful in creating a lasting mark in our community about PHAs. We saw ourselves as people driving key decisions on HIV/AIDS prevention, treatment and care. And because we are part of the wider network, we became reference points for most issues of HIV/AIDS and reproductive health.”
Perhaps one assumption that should be in mind when this model is being implemented is the presumption that the local systems at the decentralised level are functional. This project came at a time when there had been a massive investment in district level health centres by the government of Uganda. There is a possibly that this vertical support facilitated the project and enabled access to the 1.3 million people reached. All NSAs are attached to established facilities, such as health centres and hospitals, and work with paid government staff and so had facilities that are operational with basic resources such as a trained workforce, medicines and other forms of local institutional capacity.
The networks model can work best in a functional health system – especially where formal health facilities are operational. In most cases, as referred in the studies mentioned above, NSA and PHA groups have to work with or within the centrally supported mechanism embedded in the vertical set up. It therefore becomes vital for this model to have greater consciousness of what is available and what is not.
- PHA facility located at Nyimbwa - Luwero Uganda