Personal and community impact
For most respondents, there are numerous benefits to being part of a networked PLHIV group.
Another group works closely with our group. They come to learn and share with us, to inspect our work while giving advice. We have kept friends with such groups, so that they grow like our group has done. (FGD, PLHIV)
Specific activities facilitated by networks, such as forming a drama group for educational event around HIV, not only serve the community, but also benefit the individual by giving a role to play in the community. Sharing knowledge and skills between groups is a significant part of network functioning, and respondents noted that receiving training in music, drama, counselling and care enabled them to support members of their groups. Findings suggest that groups with particular skills offer significant benefits to other groups, and this pooling of knowledge (outreach activities, such as drama) and resources (including food, domestic assets and income-generating items such as sewing machines), is noted by respondents as enhancing the support they give to individual group members while increasing community literacy and capacity on HIV.
Respondents trained as NSAs describe their motivation for joining liaison groups as arising from a desire to impact their communities:
Why not inspire others on the advantages of testing, and access to treatment, care and support services? (NSA)
With the evolution of PLHIV networks more information is shared, and NSAs describe their elevation to community role models and facilitators, being consulted for guidance and being treated with respect, a marked contrast with their previous experience of being stigmatised, and with fears of dying without proper burial. The transition from despair to community role offers insight into how networks – and ultimately individual groups – serve the dual purpose of improving the care of PLHIV and offering structured roles for members to interact with a range of stakeholders. For one:
Disclosing my status, and going for training as an NSA has affected my life greatly. People are friendlier, and want me to counsel them. My life is now comfortable. (FGD, NSA)
Additionally, NSAs engage in capacity building and support:
As NSAs, we do a lot of supervision. [We] live with our groups, sensitise the community and support our colleagues with counselling. They feel free to talk to us because we have the same problems as them. (NSA)
Findings suggest networks enhance treatment access – not only from NSAs encouraging PLHIV to attend facilities for treatment in the first place, but also in transporting ART:
Due to networking and good working relations with partners, [medications] are given out at the community centre. This has reduced expenses on transport, and improved adherence. (PLHIV, KI)
For one NSA, easier access to ART programmes not only assists the individual, but unites families and communities against stigma by bringing HIV into the open:
When I told my mother about the availability of ART to extend my life, she was so happy. She called everyone to tell them the good news. They all pledged to help me, and they encouraged me to disclose. They promised to support me whatever the community's reaction. (NSA)
Community mobilisation, which brings together PLHIV groups and their families, has an impact on perceptions of PLHIV. Respondents describe family members as no longer fearing them, but instead assisting with ART adherence and attending sensitisation discussions.
A third strength of networks confirmed in this study is enhanced material support, and training in life skills shared between groups:
Income for PLHIV and other group members has improved, from farming, mushroom and passion fruit growing, and bee keeping. (PLHIV, KI)
Respondents describe the sharing of resources and skills when groups are joined – for example agricultural skills:
We collaborate very well on improving agriculture. We visit [the other group] to learn more about their activities. Because of what they do, we decided to join them, and learn the skills they possess. (FGD, Household)
Impact on interventions and positive prevention
Community sensitisation is a key part of HIV prevention, and findings confirm that NSAs are involved extensively in arranging and delivering community events, and advising individuals and couples (especially if discordant) on safer sex and family planning. This includes onward referrals to testing and treatment services, using drama groups to improve messaging, and facilitating condom distribution to other groups and peer educators. Other groups, for example working in drama, connect with agencies as part of their community sensitisation:
As a drama group, we access condoms at the [main] centre and carry some with us. People know that we are actually health workers, and say, “You people have those condoms – can you also get us some?” So if we have we do. (Key Informant)
Relationships between groups
Sharing knowledge, skills and resources is predicated on groups being able to relate effectively. Respondents describe groups sending messages to one another regarding important community events. This interdependency often increases coverage and reach of services:
The relationships between PLHIV groups are good. They are networking with one another on needs of orphans and vulnerable children, and PLHIV. When [one group] gets funds, the beneficiaries come from the other three groups. (Key Informant)
However, there is also wariness about working with certain groups, and respondents describe suspected corruption, non-transparent leadership, and poor governance as reasons for this implicit cynicism:
Many groups are fraudulent because of having crafty leaders, and only become active if hear about funding opportunities. They are active during campaign seasons because politicians will go around asking for votes. (Key Informant)
Relationships between PLHIV and non-PLHIV groups were generally positive, except for a few instances cited by respondents of some unwillingness of non-PLHIV groups to engage with HIV groups. An illustrative example is of money-lending groups being unwilling to lend to PLHIV, fearful their money would not be returned. Community sensitisation efforts reduced some of these initially negative responses.
Private and public perceptions of HIV
Perhaps one of the key community roles of groups is empowering PLHIV around disclosure, which remains one of the central challenges of living with HIV:
I used to live in fear of disclosing, but people from the group would come and counsel me, and remind me always. I ended up disclosing. (Key Informant)
[When I was diagnosed] I felt devastated and I wanted to die. I contemplated suicide, until one lady from the network connected me to [another group], and that is why am alive. I managed to disclose my status openly and now I am free. (FGD, PLHIV)
Once a person has disclosed and joined a networked group, they profit from services provided by their own, or other groups in the network:
[Originally] I thought I would die. But after disclosure, I had no fear of getting my medication and swallowing it. That is why I have lived long. I joined the group, and it's through them I got the groundnut grinder [from another group] which helped me support my children, pay their fees and even pay the rent. I don't regret disclosing my status. (FGD, PLHIV)
Disclosure is often accompanied by a strong personal commitment to sensitise and educate communities and colleagues. PLHIV expressed commitment to giving open testimonies in-order to facilitate disclosure for other PLHIV, which, according to respondents, resulted in greater numbers of people disclosing, and subsequently enrolling into care.