Caretakers meeting; inclusiveness of parents, guardians and caretakers in the care and support of children and adolescents living with HIV

By Geraldine Kauma

Children and adolescents are one of the most vulnerable groups today in the HIV/AIDS scourge. At Reach Out Mbuya (ROM), they are failing on their ARVs at higher rates than many other age groups, leading to a noticeable decline in health.

Why is this happening? Who is responsible for ensuring that children and adolescents take their drugs at the right time every day, come to the doctor and live in a safe and secure household? Is there more that their caretakers can do to help their dependents achieve low viral loads?

At ROM, caretakers refer to parents, guardians and all persons who care for and directly support children living with HIV. In February and March, ROM held two meetings with caretakers to address concerns raised at the annual camp for youth with HIV and encourage more and better involvement.

The meeting started with introductions from Sarah Nassolo, a childcare assistant introducing the new Teenage and Adolescent Supporters for the Kinawataka 1 and 2 communities. Sarah urged the caretakers to welcome these community health workers into their homes when they come to check on the young people.

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Sarah making her remarks at the caretakers meeting.

The members were treated to a performance by the post-test club in the form of a drama presentation about child abuse in a home.

The Story

A teenage HIV positive boy, who had lost his mother to AIDS, was staying with his father and stepmother. He faced a lot of hardships at home. His father, a drunkard, was never home until late in the night.

The drama starts when the stepmother comes back home to notice dirty laundry lying around. She immediately calls her daughter to ask if she had been given breakfast by her stepbrother, to which she responded that she hadn’t.

She calls her stepson, who had just returned from the well, and beats him up for failing to wash the dirty clothes and prepare breakfast for his stepsister. She immediately starts beating him up and abusing him, cursing him because he is a disgrace to her family, given that he is HIV-positive. She then calls one of the neighbors, Hajati, a gossip who also joins her in insulting the boy. It is later revealed that his stepmother had thrown his drugs in the pit latrine. The boy pleaded with the stepmother, saying it was his only way to survive, but all this fell on deaf ears and the boy was chased away from home.

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The HIV-positive boy being beaten by his stepmother and her friend

All the while, as the young boy was being thrown out of the house, his father’s youngest sister was watching from a distance, worried and contemplating her next move. Her brother, the father to the teenage boy, finally returns home. The sister immediately narrates what had happened, and at first unbelieving, he defends his wife. Then, realizing that his wife has actually treated his first son unfairly, he asks her to go and find him as he confronts his wife.

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The man confronts his wife and neighbor for mistreating his son

His wife denies all allegations of mistreating the boy or throwing away his life support ARVs, claiming he disrespected her, and walks out of the home. He immediately calls some elders from his wife’s family to discuss the matters and later sends her back with them.

The post-test club team then went ahead to sing a song about how many people have died due to failure to take their drugs, leaving orphans behind. It reminded the members about how expensive ARVs are and hence the need for them to take the drugs to stay alive and take care of their dependents.

The members then discussed what they had learned from the play:

  • HIV-positive children should be allowed to take their medication and be given food and rest to allow the medication to work.
  • Stepchildren should be treated well and with dignity; they may end up doing better than expected.
  • Gossip is bad and can increase self-stigma.

The caretakers vowed to address such challenges in their communities, before the meeting continued with addressing issues of poor adherence for the children and adolescents who were not doing well on medication.

Sarah Nassolo from Reach Out reminded the caretakers of their role to support the young people in their medication, since the ones of age 10 and above had already been disclosed to about their HIV-status and thus were expected to be aware of the reason why they took medication, but they still needed support.

They were also reminded about the sensitivity in communicating with these young people and were cautioned about calling them rudely to announce that it is time to take their medication, which at times makes them feel inferior in front of their counterparts.

The caretakers expressed different concerns about their children and were advised accordingly. They were requested to seek help from counselors whenever they encountered any issue with the children for proper management.

Dovicah Navubya of ROM then took the caretakers through the statistics of youth and adolescents failing on treatment. She advised caretakers to avoid taking adherence as a joke and instead focused on supporting the children and informing the health workers in case of any challenges.

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Doviccah taking the caretakers through how to address adolescent adherence

The caretakers were also advised on how to talk to the young girls undergoing puberty about the dangers of early sex and the need for them to be advised against promiscuity, which in many cases exposes them to habits that can endanger their lives and contradict ARVs, such as alcoholism and drug use.

If you are a caretaker of a young person living with HIV, please seek help or advice at any time at the Reach Out Mbuya clinics in Mbuya, Kinawataka, Banda, or Kasaala. Our HIV-positive children also deserve the chance to live healthy, productive, meaningful lives.

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