Despite adherence to Antiretroviral Therapy (ART) appointments and treatment, non-disclosure and acceptance remains a challenge to people living with HIV in Sop Sop sub county, Tororo District.
Angel (not real name), a 13-year-old twin, is living with HIV in a family of four, which includes their mother, father, and another adolescent sibling who is HIV negative. Angel acquired the virus during birth.
While Angel’s mother was aware of her HIV positive status during pregnancy, she was unaware that she was carrying twins. Unfortunately, during delivery, the doctor was only able to save one of the twins from the virus.
“I gave birth to the first baby with the help of a health worker who also didn’t know that I was carrying twins. After a few minutes, thinking I was pushing the uterus, I delivered the second baby. This was however without the help of the health worker who was cleaning the first baby. That’s how my baby contracted HIV/AIDs.” Angel’s mother stated.
The new mother was counseled at the healthcare facility on how to provide care for both twins and breastfeed them without exposing the HIV-negative infant, while also taking care of the one with HIV. However, tragically, the HIV-negative twin passed away.
Despite Angel being enrolled in treatment and adhering to medication, he was unaware of the reason for the daily dosage or his health condition. Angel’s mother was hesitant to disclose their HIV status, unsure of the potential consequences.
Through the SINOVUYO program, (A positive parenting program that seeks to promote open, caring and trusting relationships between caregivers and their teenagers), the USAID OVC North East Activity has significantly assisted Angel’s family by promoting a mindset shift and boosting their confidence to speak up about their HIV status without fear.
“Opening up to the PSW has been our greatest achievement through the continued counselling which has made me and my husband, despite him being also a community volunteer, to freely open up to the community members around us about our Adherence. No issues of stigma anymore.” She said.
Angel’s mother took the initiative to rally other members of the community and establish a support group known as the “Makirok Beri SINOVUYO group.”
This group convenes every Saturday at Sop Sop H/C III to assist individuals who have been stigmatized or are experiencing various forms of violence, particularly due to their HIV status. A facilitator from SINOVUYO leads most of the discussions and ensures that everyone has an equal opportunity to participate.
“The facilitator gave an example of having disclosure of HIV status and its benefits to our trusted buddy, our husbands/ wives, or our children during the session of spending special time and this touched me so much because as parents we had not yet disclosed to Angel,
“I and Angel went along because I was so desperate to tell him but I did not have the strength but I needed support from our facilitator with whom we made a disclosure plan and scheduled for it to happen”.
To improve adherence, a group consisting of the facilitator, Para-Social Workers (PSW), Case Management Officer (CMO), and Social Workers (SW) visited the family’s home together to provide support in disclosing the status to their child. As part of this process, pill counting was carried out to assess how well the family was adhering to their medication regimen. It was discovered that the HIV-positive members of the family were not taking their medication as directed by the health worker, as some members were sharing drugs and Angel occasionally missed doses.
HIV education, counselling, and treatment literacy to improve on Adherence were given during the disclosure process. As a result of this, Angel now knows why he takes drugs.
Angel is quoted saying; “I have learnt that I have to take drugs everyday as prescribed for good Adherence due to AIDS.”
“As a family we appreciate the program and support from our PSW, SINOVUYO facilitator and the entire OVC team for the continuous counselling and education to improve our lives we now know that sharing drugs is not good, we know the benefits of disclosure which has made us free. We are going to support each other and ensure that we Adhere to treatment.”