Born with HIV: disclosure during adolescence does not harm mental health

A four-year study in South Africa has assessed the impact HIV disclosure during adolescence has on mental health, adherence to treatment and viral suppression.

What is the research about?

The World Health Organization recommends children born with HIV should be told they have the virus by the time they are 12. This process is sometimes called disclosure.

Researchers followed around 750 adolescents with HIV on antiretroviral treatment (ART) in Eastern Cape, South Africa between 2014 and 2018. The adolescents participated in three rounds of interviews, roughly one a year. Clinics provided viral load data.

Why is this research important?

Adolescents with HIV are less likely to stay on ART and be virally suppressed than children and adults.

One of the reasons for this is that many adolescents who were born with HIV do not know they have it. Caregivers sometimes feel an adolescent is too young to understand. Or they worry that telling them will damage their mental health. Despite the WHO recommendation, disclosure rates remain low, even among adolescents on ART.

What did they find out?

The proportion of adolescents who knew they had HIV increased from 63% to 85% during the study.

Among those unaware of their status at the study’s start, 22% were aged 12 or above. Of those unaware of their status when the study began, around 40% were still unaware by the end.

More adolescents learnt of their status as they got older.

Those living in urban areas were more likely to be told they had HIV than those in rural areas. This might be because urban communities have better access to disclosure information and support.

There was no difference between the mental health of adolescents who were told their HIV status and those who weren’t. There was no link between being aware of having HIV and having anxiety, depression or suicidal thoughts.

Adolescents who learnt they had HIV between the study’s start and the second interview were less likely to adhere to treatment after disclosure than those who remained unaware. But adolescents who learnt of their status between interviews two and three had a similar adherence rate as those still unaware of their status.

There was no association between status awareness and viral suppression.

What does this mean for HIV services?

This study supports WHO’s recommendation for age-appropriate, timely disclosure to adolescents with HIV.

If you are working with adolescents with HIV who are unaware of their status, try talking to their caregivers about any concerns they might have around disclosure. It is important to pay particular attention to adolescents in rural areas and younger adolescents, who are less likely to be aware of their status. You could present current evidence on disclosure to caregivers, if appropriate. This study found disclosure did not lead to mental health conditions, for example.

The study found some adolescents were less likely to adhere immediately after disclosure. This shows the need to make enhanced support available when an adolescent learns they have HIV. This could take the form of one-on-one counselling with a mental health professional or peer worker, family counselling or a support group with peers.