Giving hope: A story on how community networks support persons living with HIV/AIDS
The USAID ASSIST Project and Uganda’s Ministry of Health supported a project to improve the quality of chronic care services in 10 villages in Buikwe district from June 2012. This followed an assessment at 14 health facilities in September 2011 which revealed minimal community support for HIV/AIDS patients. At one health facility in Buikwe district in May 2012, over 90 People Living with HIV (PLHIV) had dropped out of care for more than 3 months. Out of 90, only 10 were traced due to incorrect contact information given by PLHIV to their care providers. Yet, poor retention in HIV programmes affects patients’ clinical outcomes. In response, my responsibility has been to apply a community health system model that brings together community actors to support PLHIV in setting health improvement goal so they remain in care and improve their clinical status.
My Visit to Lweru A Village
It was during one of my coaching visits that I met with the improvement team of Lweru A village. Lweru A’s team is composed of Village Health Teams (VHTs), PLHIV, a local council leader, a religious leader, a parent and a school representative. The team works together to support VHTs to extent care to PLHIVs where they cannot reach. During the meeting, we reviewed previous action plans, team roles and responsibilities, gaps and changes to address gaps. In the same meeting, I asked participants to share their experiences about their work in supporting PLHIV in the community.
The religious representative on the Lweru A village improvement team had this to say:
“I have discovered that I have a role to play towards PLHIV in my community. I thought I had no role and that HIV was a problem to those infected. My participating on this village team has helped me learn about HIV and that I have a role. I thought that people living with HIV had no future and used to fear them. But due to sharing, I have learnt how approach them and that I have a role of raising awareness on HIV testing, preventing HIV infection and supporting those with HIV meet their needs. I have learnt that PLHIV have a purpose in life and can prolong life with our support. Supporting PLHIV is important to me as a leader and the people I serve. The learning and sharing I receive from the QI team, tells me I have a role to play towards PLHIV”.
A community group representative on the village QI team recounted as follows;
“Working together as a team has helped our community. People with HIV used to get treatment but had no hope but with our help and support, through learning and sharing we learn how to care for them. With our support, these people have the motivation, no fear, and are full of life. We are together as friends and useful to them. I am proud of this arrangement because people with HIV are not afraid anymore, stigma has reduced and there is more hope for the future”.
It was during this visit that the village team introduced me to Edward a 36 year old male living with HIV and representing PLHIVs on the village team. He is a professional tailor and a farmer. I asked Edward what motivated him to represent other PLHIVs on the village improvement team. He shared his experience as follows;
“I tested HIV positive in July 2009, weighed only 35 kilograms, had no appetite for food and had a skin rash at that time. My clothes were oversize and could not move even 10 meters. I had been taking my medications as prescribed and kept my clinic appointments, but I was scared and afraid of death. I hated everybody because I thought they were talking about me. Six months after starting HIV treatment, I was changed to second line treatment due to persistent fevers, low weight and a skin disorder. I visited the health facility almost every week for treatment. I thought time for me to die had come; I had given up and lost all hope.
Through a friend, a member of this village visited me one time. She found that I had given up on life and chose to stop care; after all I was going to die. She assured, gave me hope and referred me to a health facility to continue with care. I was weak, so she provided me with some food stuffs like sugar, posho, greens, milk.
As I discussed with Edward, a QI team member [local leader] who supported Edward added this:
“He hardly walked, had a severe skin disorder and was very small. During my visit to his home, I found out that he was stressed because he thought he would die soon. I approached my team and we contributed food stuffs like greens, maize, sugar and milk to help him gain weight. During one of the follow up visits, Edward and I made an action plan to ensure that medications are taken correctly and to improve on his nutrition. The plan involved talking to close family members and friends for support and follow up visits. I kept following up his progress and assured him about the need to take his medicines. He was courageous and followed the plan as set. As you can see….[she draws our attention to Edward…who smiles]…..he is now full of energy to work and take care of himself. He is an example to others in the community and has helped link us to other PLHIV”.
After the local leaders’ account, I asked Edward how his condition changed after the involvement of a local leader in his health. He had this to say:
“A month later, I had gained energy and returned to my tailoring business. I am now weighing 45 kilograms and determined to add more. I learn new things everyday from my village care provider. I learnt to eat and take my treatment. She also introduced me to the village improvement team to represent and support people facing similar situations as mine. I stopped fear; people loved me and cared for me. In my village, people like listening and refer others to me. I am a model to rest and advise that people with HIV should take advice from others. They should chose life and remain useful.
Lessons from My Visit to Lweru A Village
Edward’s case demonstrated that adherence to treatments and keeping appointments will reduce the frequency of clinic visits so he can concentrate on living his life. Communities have a role to play towards supporting PLHIV such as Edward; they help bring hope to PLHIV through counseling and follow ups, they help mobilize resources to address nutritional needs and provide support systems. PLHIVs who are successfully supported in the community can finally serve as role models to others to help address stigma, fear, depression and lost hope.