Community-based approaches to improve ARV adherence in children

For almost everyone who starts taking their HIV medication daily as prescribed, viral load will drop to an undetectable level in six months or less. PHOTO/COURTESY

What you need to know:

  • As we commemorate World Aids Day this Thursday, we look at how community based approaches such as home-based integrated intensive adherence counselling are being used to increase the intake of ARVs, especially among children.

When his mother died of HIV/Aids in 2017, 14 year-old Kato was abandoned by his father and left under the care of his 87-year-old blind grandmother. The then seven-year-old was written off by his family because he was a burden to them. 

Despite being on ARVs, his viral load was not being suppressed and his health kept deteriorating. He was always sick, missed school due to illness and a lack of school fees. Kato and his grandmother starved on several occasions and a combination of all these factors led him to stop taking the medication. After all, no one even supervised if he took the medicine or not. 

He missed his appointments for ARV refills and when Joweria Nakazibwe, the ART facility in charge and the lead para-social worker at Kiwangala Health Centre III (HCIII), realised that he rarely came to hospital, she sought him out. 

When she finally found him, he was weak, since he sometimes did not have food and was no longer taking his medication. 

On July 4, 2021, his viral load was 327,688 copies per millilitre of blood instead of a suppressed one which is usually below 200 copies per millilitre of blood.

After an assessment, it was recommended that Kato be put on the third line of medication, which is the last level for those that fail to adhere to ARVs. The health centre, which is one of the facilities under Masaka Diocesan Medical Services (MDMS), implementing Usaid’s Integrated Child and Youth Development (ICYD) activity,  suggested that they use community-based approaches before they switch him to the third line. 

He was then enrolled on the home-based integrated intensive adherence counselling and attached to a committed treatment supporter Baker Kagimu, 30, who also doubles as an adolescent peer at Kiwangala and a Para social worker for ICYD. 

“When I arrived at Kato’s house, I realized they had no helper. The grandmother was bedridden at the time, and nobody was ensuring he takes his medication. I began monitoring this and became his friend so that he could confide in me. I used to ride more than five kilometres every day to his home so that we swallow our medicine at the same time,” he says. 

In addition to being assigned a treatment supporter, Kato was linked to other child protection organisations, which secured a bursary for him at Katovu CBO Primary School, where he is currently in Primary Four. At the school, he does not have to worry about school fees.

Together with the peer leader’s support, Kato’s adherence greatly improved since he was now taking his ARVs on a daily basis. For this family, Baker is now more than just a para social worker; he also helps Kato with his refills and keeps track of his academic progress.

“Although I do not see, I am happy that Kagimu comes here to give Kato medicine at 7am and at 8pm every day without receiving any payment. Although food is still a challenge, I am happy that he goes to school without being asked to come back home because of school fees,” Kato’s grandmother says.

Other interventions included temporary food support, intensive adherence counselling, nutrition sessions, cooking demos, and kitchen garden sessions. Kato is now in good health and spends his weekends farming and helping his grandmother with house chores. 

“I would fear taking my tablets because they are so big and many times, they would get trapped in my throat. No one was there to supervise me but when Baker came, he helped me get used to them. Because I take my medication at 7am every day, I set my alarm for a reminder at 6:55am. I am grateful to Baker for his support,” says Kato.

The help

For about three years now, Kagimu has been a para-social worker and youth peer supporter at Kiwangala HCIII in Lwengo District under ICYD. He was challenged to follow up Kato and ensure his suppression. With his support, Kato's viral load was suppressed within six months. 

“The main issue was suppression, so I started supervising him and befriended him so that he could confide in me. Most of the time, I would swallow my medicine while he watched. From his experience, I have learnt to support children effectively. I tell them that living with HIV is not a limitation to prosperity,” he says.

Kagimu uses a bicycle for transport within the community and supports several children who have adherence problems. Some children, according to Kagimu, do not even know why they swallow the drugs every day. Their parents find it hard to disclose their status and this is where para-social workers come in. Moments of swallowing medicine together inspire the children and this is his approach to helping them adhere. 

Nakazibwe says although health facilities normally explain to the caretakers how ARVs should be administered, poverty, memory loss, and poor health conditions are making it hard for them to ensure that children living with HIV adhere to treatment.

“The problem is that most of our mothers and caregivers leave children to take the pills by themselves. Others are unable to come and pick ARVs for their grandchildren from health facilities due to transport issues. Poor monitoring is also a problem. You find that a child is given a pill but he does not swallow it, which often leads to drug resistance,” Nakazibwe says.

According to Lawrence Ninzeyi, the monitoring and evaluation officer at MDMS, out of the 3,818 children living with HIV that the project is supporting, 2,619 have a viral load that is suppressed; representing 93 percent of their projections.

The para-social workers ensure that the children take their medication as prescribed by the health workers. If taken as prescribed, HIV medicine reduces the amount of HIV in the body (viral load), which keeps the immune system healthy and thriving.

What is an HIV viral load?

An HIV viral load is a blood test that measures the amount of HIV in a sample of your blood. The test looks for genetic material from the virus in your blood. These tests are called molecular tests or nucleic acid amplification tests (NAAT or NAT). There are several types of NAAT tests. A PCR test is one type of NAAT that may be used to find HIV.

Most people with HIV do not have AIDS. If you have HIV, you can take HIV medicines that protect your immune system and help prevent you from getting Aids. Medicines that treat HIV are called antiretroviral therapy (ART). ART cannot get rid of HIV completely, so you will need to take medicines for the rest of your life. But ART can control HIV and help you live a longer, healthier life.

Having regular HIV viral load tests is an important part of making sure your HIV medicines are keeping your viral load low, so you stay healthy.


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