When to tell a child they have HIV

Dec 01, 2021

About 3.3 million children below 15 years of age are living with HIV and 2.9 million of these are in sub-Saharan Africa

Children who are born with HIV should be enrolled on treatment early.

Elvis Basudde
Journalist @New Vision

Prossy Nabbosa, a resident of Mpigi district, knew she had HIV when she got pregnant.

However, because she did not attend antenatal clinics regularly, her baby girl contracted HIV. So, Nakyobe grew up taking anti-retroviral drugs (ARVs).

Nabbosa had not and in fact, did not know how to tell her daughter that she was born with HIV. When baby Nakyobe turned nine, she started asking her mother why she had to take medicine every day. And why the other children do not swallow medicine every day? Many parents face this challenge.

It is easy for a parent when the child is still innocent and not questioning anything sanctioned by the parent.

However, when the child grows up and discovers that she is subjected to daily drugs that others do not take, they will ask questions.

According to a UNAIDS report, paediatric HIV infection continues to be a major problem globally. About 3.3 million children below 15 years of age are living with HIV and 2.9 million of these are in sub-Saharan Africa.

It is estimated that 1400,000 Ugandans are living with HIV. The prevalence of HIV among among children aged 0-14 is 0.5%, which corresponds to approximately 95,000 children living with HIV. As these children continue to grow up, another challenge is determining when and how to inform them about their HIV-positive status.

Dr Joshua Tamale from the Joint Clinical Research Centre (JCRC), says many children born with HIV are progressively surviving through adolescence and adulthood as a result of improvements in the management of paediatric HIV infection, particularly the use of antiretroviral therapy (ART).

It is usually the role of parents or guardians of these children to disclose to them their HIV status and use the opportunity to explain more about HIV. However, many, particularly biological parents, find this disclosure process difficult to initiate.

Understanding disclosure

Disclosure of HIV is announcing to another, a group of people or everyone that you are, or the person you are talking to, is living with HIV. Telling your child(ren) and deciding when can be complicated.

Dr Tamale says children who are aware of their HIV-positive status have the ability to seek social support, improved coping skills and safer sexual practices to prevent secondary transmission.

He stresses that such disclosure tends to increase a child’s understanding about their condition and facilitates active participation in care and treatment. In addition, children are empowered to make the right decisions and learn to protect themselves and others from the disease.

Parents New Vision talked to recounted how they always contemplated starting the conversation, but could not gather enough courage to follow through with those plans. They cited the fear of robbing their child of happiness, fear of making their own status known to more people and fear of confrontation or creating enmity with their child — who may blame the parent of ‘bringing her death’ due to the limited knowledge of the disease.

Richard Sserunkuuma, the executive director of the Positive Men’s Union (POMU), says parents also dread the risk of disturbing a family’s previously established equilibrium with threats of stigmatisation, marginalisation and parent-child conflict.

“It is not as easy as people think. HIV healthcare facilities should offer regular training to parents and guardians on how to disclose because there is evidence to show that when poorly managed, it can cause disaster.

“Children living with HIV have indicated that the way they came to find out was often after they asked, quarrelled, or heard it from elsewhere. Many times the parents also do not know enough about the disease to communicate effectively,” Sserunkuuma says.

At what age?

The World Health Organisation (WHO) guidelines recommend that school age children should be told their HIV-positive status. Uganda’s Ministry of Health policy on HIV set the specific age at between 10 and 12 years. It is also advised that before disclosure, the parent of the minor should get counselling on the right way of disclosure. The mode takes into consideration the children’s cognitive development ability.

Parents speak out

Harriet Birungi from Buikwe district preferred to go through her son’s teacher to disclose it to him.

“I confided in the teacher, who helped me to tell my boy when he was 10 years old. It was not easy for the boy, but he eventually came to terms with his status. Swallowing medicine is still a challenge, but at least he knows why he has to swallow them every day,” Birungi says.

Patrick Bagema from Bududa district says his child was eight years old when he told her she had HIV. He says he sat her down and explained to how it was not his fault.

“She cried, but later calmed down.”

From then on, they talk freely and take their medicine at the same time.

“My daughter has become my treatment adherence supporter and reminds me every day. We have worked out a timetable when to swallow the pills,” Bagema says.

Jack Kokole, an expert client in Mukono, says they have helped many children come to terms with the HIV status.

“We have had discussions with parents to guide them on how to tell the children, but where they have failed, we have had to do it for them as expert clients since we are trained on how to handle such children.

We have a number of paediatric counsellors,” he says.

Stella Kentutsi, the executive director of the National Forum of People Living with HIV/AIDS Networks in Uganda, says there have been stories of children hiding their drugs or lying that they have swallowed them.

“Some run away from home and others have attempted suicide. There may not be appropriate time to tell the child, but the bottom line is they must be told early enough before any damage that may be psychologically irreversible,” she says.

WHO recommendations

  • Children of school-going age should be told their HIV-positive status; younger children should be told their status incrementally to accommodate their cognitive skills and emotional maturity, in preparation for full disclosure.
  • The decision on who will disclose to the child should be guided by the intent to improve/promote the child’s welfare and minimise the risk to their wellbeing and to the quality of the relationship between child and parent/caregiver.
  • Initiatives should be put in place to enforce privacy protection and institute policy, laws and norms that prevent discrimination, promote tolerance and acceptance of people living with HIV. This can help create environments where disclosure of HIV status is easier.
  • First seek professional advice from HIV counsellors on the timing, process, style and amount of information to disclose. Get training on how to feel confident and avoid mishandling such a delicate process. You can invite the counsellor along if you think it will help.
  • Children may need to be reassured as to how the parent/caregiver is feeling and have fears and concerns addressed. Caregivers need to perceive more distress in their children than before.
  • Keep medical facts to a minimum, describing HIV infection as a chronic illness. Explain in further detail over the course of time. Use language appropriate to the developmental and cognitive level of the child.
  • Accept and foster silence, as the youth needs time to process the important information being given. Respect and promote the sharing of feelings and support by family members and staff toward the child, and let the child express his or her feelings and needs.
  • Explore the child’s knowledge about their health, HIV/ AIDS and other chronic illnesses.
  • Assess the youth’s coping skills, family and peer support, school/work progress, skills and interests.
  • Ensure you have enough time to disclose and do not rush the disclosure process but instead stay alert and sensitive to the child’s feelings and needs as he or she evolves through the phases of disclosure.
  • Be prepared to answer embarrassing or painful questions that children are likely to ask (e.g. about sexual practices or drug use).
  • Consider the stage of HIV and the child’s medical condition because fear, pain and fatigue further compromise the child’s and family’s emotional energy levels during the disclosure process. Avoid disclosure during a medical crisis or acute illness.
  • Throughout the disclosure sessions, ensure that the child becomes curious enough to ask and be ready to learn more about his/her medical condition.

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