Why are parents giving up on their HIV-infected children?
By: Mary Nabisere
Despite universal access to life saving antiretroviral medications (ARVs), children infected with HIV in rural communities in Uganda are still dying. Because their caregivers believe they won’t make it in life, the support rendered to them is inadequate. And yes, without proper adherence to treatment 75% of these children will die before their fifth birthday.
USAID ASSIST is implementing interventions to improve viral load suppression of children and adolescents receiving antiretroviral therapy (ART) in six health facilities in Otuke and Lamwo districts, in the northern region of Uganda. There, community dialogues with caregivers is one platform that is being used to share experiences and generate solutions that would help their children achieve viral load suppression.
At a recent caregiver community dialogue, 80% (140/174) of caregivers we engaged believed their HIV positive children won’t make it in life. This revealed a staggering knowledge gap.
Amidst language barriers, we managed to deliver messages on the importance of the timing of treatment doses, supervising drug administration, disclosure, and monitoring pills in the medicine containers. We did this through role plays and pictorial cards. The role plays triggered excitement, and discussions, in reaction to key scenes displayed.
Caregivers opened up and shared experiences and challenges they go through, and this created an atmosphere of peer learning and support which was well received.
Key limitations to uptake of ARVs by children and adolescents were noted as:
It was a heartbreaking experience realizing that being diagnosed with HIV is still a death sentence for most people in our communities. While caregivers typically maintain clinic appointments for their children, they are far less consistent about following the clinic advice given at those appointments. Many parents work far from the home tending gardens, and aren’t able to observe whether their child is following the doctor’s orders. Some parents are absent from the home due to alcohol addiction. Often parents do not bother about whether children are taking their medications or getting their proper nutrition because they believe these children won’t make it in life.
“An HIV positive child isn’t counted as a child in the household,” one of the parents revealed.
Another major gap highlighted was children not knowing why they were taking ARVs. A 10-year-old who aspired to be a teacher was quoted saying, “I take these drugs because I have a cough,” while another who wanted to be a driver said, “I take these drugs because my mother said I have a chronic disease.”
Some parents/caregivers simply did not know how to break the news to their children. They lacked the knowledge and the skills. This revealed a gap on the side of the health care providers not adequately empowering the caregivers to be able to disclose HIV status to their children at the right time.
When asked about her experience, a woman in her mid-30s broke down and cried. She was quite pregnant, with a ten-month-old daughter and a son of 10 years. After calming down, she revealed,
“My son has always asked me why he keeps on taking medicine every day; I didn’t know how to disclose to him that he is HIV positive. I was at home one day when he came back home crying and said that he had been told at the neighbor’s place that he is HIV positive and that he is going to die. This broke my heart! This untimely and unplanned disclosure made him aggressive and he started throwing away his drugs, [which is why] he now has a high viral load.”
What I have learned from this experience is that to these children — and every child — a parent/primary caregiver is the center of their life and, therefore, their care and dedication is essential to promote a healthy and active life. This will only be possible if the health care delivery system takes it upon themselves to empower caregivers to develop the confidence and the skills needed to care for their children to achieve good clinical outcomes.
In my view, I would like to recommend that caregivers hold regular dialogue meetings which can serve as an extended hand of the health workers into the community and present an opportunity for continuous caregiver capacity building through peer support to improve patient care and support to achieve good outcomes for their children.
For more about our work in Uganda, check out these new resources:
This blog post was originally published on the USAID Applying Science to Strengthen and Improve Systems (ASSIST) project’s website on March 16, 2017.