(This article was first published in the New Vision on December 7, 2022)
The right time to disclose to Josephine Asiimwe (not real name) her HIV-positive status was in 2016, when she turned 10 years old. Asiimwe and her mother had had their blood samples taken for an HIV test months earlier, but the results could not be disclosed to this girl until six years ago.
But as is its norm, the HIV and AIDS organisation, Reach Out Mbuya, which carried out the tests, engaged the school leader before disclosing the results to Asiimwe. However, this girl did not know her blood had been taken for an HIV test.
One day in 2016, Asiimwe, together with her six classmates, who were also HIV-positive but did not know yet, were called out of their classroom to meet the headteacher, who introduced them to a team of people from Reach Out Mbuya.
“These people told us we are a special group of pupils and asked us to meet them again with our parents next Saturday,” Asiimwe, who is now 16 years old, says, wiping tears. “No further information was given to us,”
Before she met this organisation again, Asiimwe says she repeatedly asked her mother why that meeting was necessary. But her mother said they would both find out at the meeting, she says.
By 11:00am on the appointed date, Asiimwe says she and her mother, as well as her classmates and their parents, sat in a tent at this organisation’s home in Mbuya, a Kampala suburb, for the meeting.
She remembers that a woman, who she describes as having been jolly during the meeting, split them up and separately revealed the HIV status to the children and their parents.
“Once she told me that I was HIV-positive, my mother broke down, telling me ‘it is not your fault, it is ours, your parents”. I honestly did not know how to act. I just walked away,” Asiimwe says.
HIV-Positive Children
Out of the 1.4 million Ugandans living with HIV and AIDS, over 80,000 are children, according to the Uganda AIDS Commission (UAC). More than 34,000 of these children are in primary schools, representing less than 0.4% of the estimated 10 million pupils in primary today, according to the education ministry.
The 2017 statistical abstract report, which the education ministry says it is currently updating, shows there are more girls than boys living with HIV/AIDS in primary.
But the number of HIV-positive learners drastically falls with enrolment in secondary, where there are less than two million students.
Even at the secondary level, more than half of the infected learners are females. But how do these school children cope with HIV/AIDS at school?
Asiimwe says she learnt that her mother had been taking AIDS drugs and that Reach Out Mbuya wanted to know if she was also HIV-positive so she could get treatment, too. At first, the prospect of taking drugs daily was scary, but Asiimwe says she was comforted by the fact that her mother would support her.
So, in 2016, she took her antiretroviral drugs for the first time and a cup of tea before leaving home for school. But she walked back home before break time as she vomited and felt dizzy and suffered stomach ache.
“My mother had warned me against telling anyone at school. I was then advised to take the drugs in the evenings, instead of mornings, which I have been doing since 2016,” she adds.
Although none of her teachers knows her HIV status, except the headteacher, who was requested by Reach Out Mbuya to keep her condition confidential, Asiimwe says she disclosed her health situation to the school’s nurse in 2018.
“I told the nurse because I often get weak and hungry. She gives me porridge and also shares with me the staff food,” she adds.
“That keeps me strong and she always makes an effort to find out how I am doing.”
Save for her fellow schoolchildren, whom she meets with almost every weekend at Reach Out Mbuya to play and get counselled, Asiimwe, a P5 pupil, says none of her peers at school knows her HIV status.
Across the country, there are organisations like Reach Out Mbuya, which provide HIV and AIDS-related services to schoolchildren and their counterparts out of schools, as well as parents.
Disclosing HIV Status
A headteacher at one of the primary schools in Kampala, Proscovia Nanteza (not real name) says children who disclose their HIV[1]positive status to one or two teachers enjoy school like any other child. She adds that the children who keep their HIV-positive status secret tend to suffer in silence.
“I know HIV-positive children at my school because parents disclosed their status to us,” she adds. “Sometimes it is the teacher who has to link your child to the school nurse for better care,”
David Mubiru, a headteacher at Luzira Primary School. concurs. He says some children relate more with teachers than their parents, and that not disclosing their HIV-positive status to one or two teachers denies these children an opportunity to seek solutions to any challenges at the school.
He says the Government should put in place mechanisms for encouraging parents to disclose the HIV-positive status of their children to the school leaders.
This, a teacher at another primary school in Luzira, says could help build bonds between parents and school leaders, which is beneficial to the children.
“If your child misses a meal yet they are taking drugs, they will be affected. Let’s break the chains of ignorance. The HIV-positive children here get porridge and share meals with staff,” he says.
However, Nanteza says it is important for teachers to keep the HIV-positive status of the children secret as disclosure to their peers could affect them in many ways.
School Counsellors
But does the absence of professional counsellors at schools stop some children from disclosing their status?
“The challenge is that the teachers are not professional counsellors. Schools need counsellors to encourage disclosure. The teachers do not have time since they are busy teacheing,” John Muyeyero, the acting executive director at Uphold the Girl Child, a local non-governmental organisation, says.
A nurse at a school in Mbuya says children that open up about their HIV-positive status tend to feel safer as attempts are made to give them “good care” and encourage them to take their drugs.
“They do as well as other children academically. But they get problems if they do not eat well. They also get dizzy and suffer headaches and stomach aches after taking drugs,” she adds. “Some of them share meals with the staff. But children who do not open up do not get this,”
According to the 2019 People Living with HIV Stigma Index, only a small number of HIV-positive children disclose their status to classmates, teachers and administrators. Some school children also feel that their HIV-positive status was disclosed to classmates and teachers without their consent, the study says.
It also shows that 36% of the nearly 1,400 HIV-positive people who participated in the survey find it difficult to disclose their status to other persons, while 32% hide it from others.
Dr Gertrude Namale, a medical services manager at Reach Out Mbuya, says children below 15 years easily open up about their HIV-positive status, but their counterparts above that age find it difficult as they realise the AIDS impact on their lives.
“At that age, the children are getting attracted to the opposite sex, so there is tension and depression. They do not know how to disclose their status to people they are attracted to,” she adds.
Namale says she encourages such children to continue taking their drugs and focusing on studies, encouraging them to look for HIV-positive partners in the future.
Saving Children
Dr Diana Rutebarika, the deputy head of paediatrics at the Joint Clinical Research Centre, says parents can save their children from this burden by getting screened for this virus before conceiving or during pregnancy.
If you are HIV-positive and pregnant, treatment can help you suppress the viral load and reduce the chances of infecting your baby. In addition, proper care would help prevent you from infecting your baby during delivery.
Statistics from Uganda AIDS Commission (UAC) show that 6,000 of the 54,000 new infections recorded last year involved babies — infected by their mothers.
If you get pregnant before knowing your HIV status, the UAC director general, Dr Nelson Musoba, advises that you get tested immediately after you realise you are carrying a baby. If you are HIV-positive, you will be placed on treatment to protect you from HIV-related opportunistic infections and your baby from contracting the virus. You will also be advised to deliver at a health facility. “Health workers will protect your baby from HIV and give you instructions for breastfeeding,”
Musoba says. “You may be advised to not breastfeed,” However, 15,000 of last year’s infections are among adolescent girls and young women aged between 15 and 24 years. A third of these adolescent girls and young women were infected by their male counterparts in the same age group.
Asiimwe says she feels safer among her fellow HIV-positive children and the school community than at her home because there’s one neighbour who occasionally insults her mother for her HIV status.
This, she says, makes her wonder if she and her mother are a disgrace to their community. But she says this will not bar her from achieving her dreams. Asiimwe wants to use her health condition to inspire other children in the same situation. “I want to become a doctor and use my own life as an example that everyone can achieve their dreams regardless of this condition,” she says.
Parent’s Role
Prof. Sam Okware, the director general of Uganda National Health Research Organisation, blames these infections on exposure to sexual content on social media and a lack of parental supervision over teenagers.
Prof. George Kirya, the chairperson of the Uganda Health Marketing Group, agrees: “We should talk to our children about the dangers of early sex,” he adds.
Henry Ssemakula, a senior education officer in the guidance and counselling department at the (education) ministry, says HIV and AIDS information was integrated into the curriculum to help learners understand how it spreads. The ministry, he says, also encourages HIV-positive learners to seek treatment.
“We are reinforcing counselling and guidance and health clubs to disseminate AIDS-related information,” Ssemakula adds. “We have talking compounds. You cannot leave school without sufficient information on HIV/AIDS,”
The ministry says it is also encouraging schools to disseminate HIV and AIDS information through debates, drama, assemblies and peer-to-peer education. The United National Educational, Scientific and Cultural Organisation says children affected or infected with HIV tend to drop out of school or perform below their potential.
How To Keep HIV Positive Children At School
- Give them psychosocial support
- Support them to follow treatment regimens
- Develop a caring school environment
- Develop schools as centres for integrated service delivery
- Monitor their school attendance
- Conduct home visits to encourage enrolment
- Waive school fees
- Establish school feeding programmes.
- Make lessons more flexible for them
- Create inclusive school policies
- Create mentor schemes
- Train teachers in basic first aid and referral to health care providers
- Establish zero tolerance to discrimination
Source: UNESCO Good policy and practice in HIV and AIDS and education booklet
