Should children know their HIV status?

Children with human immunodeficiency virus (HIV) are surviving to adolescence and adulthood because of the increasing long-term use of antiretroviral therapy. HIV status disclosure is an important component of long-term disease management, but many do not know why they need to take these medicines.

Disclosure is critical to long-term disease management; yet, letting children know their HIV status in many developing countries is fraught with many challenges such as high levels of stigma associated with HIV and caregiver’s lack of awareness of benefits of disclosure and inadequate numbers of trained pediatric HIV counsellors.

In 2019, Nigeria National HIV/AIDS Indicator and Impact Survey (NAIIS) puts Nigeria’s HIV prevalence at 1.4% among adults aged 15 to 49 years. It suggests that there are 1.8 million people under the age of 64 living with the virus, of which 0.2 per cent of this group are children aged 14 years and below.

Although the number of new cases of HIV as well as AIDS-related death has significantly reduced, the numbers needing antiretroviral treatment (ARVs) are increasing, and yet a large proportion of children do not know why they have to take these medications. There is a low level of discloser.

A cross-sectional study was done from June to July 2016 at the infectious disease clinics of National Hospital, Abuja, for instance, found that prevalence of full disclosure was 24.5%, partial disclosure 22.7%, with overall prevalence of 47.2%.

Disclosure can be full where the child is informed that he has HIV/AIDS or partial in which case the child is informed that he has a chronic illness for which he needs to be on treatment for a long time. Often children are misinformed about their diagnosis because of parental fears of full disclosure and levels of stigma associated with HIV, caregiver’s lack of awareness of benefits of disclosure.

The 2020 study, in the Nigerian Journal of Clinical Practice, had 164 caregivers of HIV-positive children that had received antiretroviral therapy for at least 1 year. About 70% of the children were in either primary or junior secondary school and over 80% were aged between 6 and 15 years.

More than three quarters (76.3%) of the children had siblings ranging from 1 to 5 with about 50% having 2–3 siblings and of these siblings, 11 (9.6%) were also HIV positive.

The study found that the time of disclosure of HIV status was influenced mostly by the child’s level of education and the caregiver’s opinion on disclosure. The single most common reason for not disclosing or for delaying disclosure was the fear that the child will inform others, followed by the child was too young.

Additional barriers identified include fears that the parent will be blamed for transmission, fear of the child’s resentment, feeling unprepared for the questions that will follow disclosure and feeling unprepared for the disclosure process.

At the Special Treatment Clinic at Dalhatu Araf Specialist Hospital, Lafia, pediatric HIV disclosure rate was 33.8%, a little lower than that at the National Hospital Abuja. This was a descriptive cross-sectional study conducted among 160 caregivers of children aged 6 to 14 years between 11th January and 1st March, 2017. It was published in the 2020 edition of the Nigerian Journal of Clinical Practice. The disclosure was low in this study due to the caregivers’ and their wards’ factors.

However, Dr Olubunmi Ayinde, HIV/AIDS control officer at the Oyo State Ministry of Health said despite all these challenges with HIV discourse,  a child is grown enough between age 10 and 12 years to be told about his HIV status.

According to her, “it is so that the child will be able to accept his status, remain in the continuum of care, be virally suppressed and be able to live a normal acceptable life to the society and to the child and for himself.”

What is more, Dr Olutosin Awolude, a consultant obstetric and gynaecologist, University College Hospital (UCH), Ibadan, said that HIV status disclosure to children is a very challenging and tricky issue because it requires a lot of expertise to handle.

He stated that different approaches are sometimes used, including the discloser has been done by an HIV counsellor, the parent, healthcare giver or during HIV youth club meeting.

Dr Awolude added: “Children grow at different rates, their ability to understand things vary. As they are growing older, especially as they are reaching the adolescent stage, a little thing can trigger in them psychological problem, so healthcare workers that deals with HIV in children encourage the parents to disclose,” he added.

He stated, by the time an adolescent starts to ask why he has been on drug every day and attend the HIV clinic, it is time to find a way of letting him know why this is important and about his peculiarities to ensure responsible adolescent sexual behaviour.

“As they reach puberty, they need to know about their peculiarities. It is the same when declaring someone’s sickle cell status to him. These are lifelong issues that if we don’t handle well can cause psychological problems that can affect their growth, including their education. But some of them cope very well and they move on with their life.”

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