Delaying disclosure until adolescence leads to poorer treatment adherence

Waiting to tell adolescents born with HIV about their status until they are teenagers can have serious consequences for their engagement with HIV treatment and care, research from Western Kenya has found.  

What is the research about? 

How and when adolescents born with HIV learn about their status, and whether this affects their willingness to take HIV treatment.  

Researchers interviewed 42 adolescents with HIV in western Kenya who had gone to fewer than two HIV care appointments in the last 18 months. They also interviewed 32 caregivers and 28 healthcare workers.  

Why is this research important? 

Adolescents are less likely to stay on antiretroviral treatment (ART) than children and adults. This puts their health at risk and helps HIV to spread.  

The World Health Organization recommends that children born with HIV should be aware of their status by the age of 12 through a gradual process of disclosure that begins in early childhood. But in reality, many children with HIV reach adolescence before they learn of their status. There is a lack of evidence on how this affects their approach to ART.  

What did they find out? 

Most adolescents in the study (95%) were aware they had HIV. But many had experienced challenges around disclosure that affected their engagement with HIV care.  

1. Lack of support for caregivers and healthcare workers

Healthcare workers and caregivers felt unprepared to handle disclosure. Most caregivers did not know how to begin such conversations and had worries about how adolescents would react. Some parents worried their child might ‘blame’ them for having HIV. All these things delayed disclosure. 

2. Disclosure delays

Some adolescents had asked about their condition but had to wait a long time for answers. Some struggled to understand why they needed to take treatment every day. These factors led some adolescents to stop treatment.  

As one 18-year-old woman put it: “I never wanted to swallow them [ART medication] totally…I just said, I better die because I don’t know what is going on.”  

3. False explanations for treatment  

Adolescents who had been told they were on treatment for a different condition found it difficult to cope when they learnt they had HIV. Some felt they had been “lied to” and lost hope. This stopped them continuing with treatment. 

4. Stigma  

Some adolescents struggled with negative emotions when they learned they had HIV. Many had witnessed HIV-related stigma at school or in their communities and were scared of people knowing they had HIV. This stopped them from going to care appointments.  

Some adolescents were wrongly told at school that HIV is a ‘killer disease’. This made them lose hope in HIV treatment.  

5. Lack of support for adolescents after disclosure 

Some adolescents learned of their HIV status on their own, or had unresolved questions after disclosure. Some experienced strained relationships with caregivers, particularly when they avoided questions about HIV. Others blamed their caregivers for not telling them sooner, and refused to continue with care. 

Some adolescents developed mental health issues, which caused them to stop treatment. 

As one caregiver to a 15-year-old said: “[Disclosure] disturbed her a lot and she was saying, ‘I will no longer take the drugs anymore, if I am to die, let me die.’ She became sick later on and spent whole months without going to school.”  

What does this mean for HIV services? 

It is important to offer counselling to caregivers on how to provide children with HIV with truthful, age-appropriate information from an early age. Caregivers should be counselled not to give false reasons for medication-taking.  

Providing intensive support after disclosure is also important, for both adolescents and caregivers. This can help identify issues before they lead to poor adherence. Building good communication and conflict resolution skills between caregivers and adolescents can be particularly useful. 

Adolescent peer mentors have an important role to play in supporting adolescents during and after disclosure. It can also be effective to work with caregiver peer mentors to support caregivers through the disclosure process.  

There is a need to provide training and resources for healthcare workers on the issue. This should be led or co-facilitated by adolescents with HIV and caregivers who have gone through the disclosure process.