Fifteen years ago drugs were introduced that, for the first time, prevented mothers from transmitting the HIV virus to their babies. The drugs meant that children born to mothers infected with the virus could live long and fruitful lives despite being HIV positive.
Since then researchers have studied the health issues facing children living with HIV and there's a fairly good understanding about the medical challenges they face. But there's still a lack of knowledge about the social issues these young people have to navigate.
For example, many have lost one or both parents to HIV and live in childcare facilities. And as they reach teenage hood they face a unique set of health and social challenges. Adolescence and the transition to adulthood is complex and challenging for any young person. For this cohort of teenagers it is particularly difficult because most of them are vulnerable and feel that they've been abandoned.
In a bid to try and understand the lives of these young people and the implications of living with HIV we conducted a study that involved interviews with a cohort of young teenagers living in a childcare facility.
The interviews highlighted the fact that the teenagers faced two distinct but inter-related challenges: the challenge of having to navigate the world as a young person living with HIV; and the challenges of living in a facility without the support structures provided by extended families.
They identified four main sets of challenges: stigma among their peers at school, difficulties discussing their HIV statuses, feeling discriminated against by living in a childcare facility and feeling a lack of belonging.
Our findings provide insights that could be useful to facilities caring for teenagers in a similar situation.
In 2016 South Africa had an estimated 320 000 children up to the age of 14 living with HIV. This is about 4.5% total number of people living with HIV in the country.
The teenagers that formed part of our study were living in a childcare facility that had been set up to take care of young children who had been infected in their mothers' womb, or just after, and who had been abandoned.
We held two focus groups: one with the teens and a separate one with the caregivers. This ensured that we captured the nuance and complexity of the teens' lives, as well as expertise of the caregivers.
The teenagers had all learnt about their HIV status between the ages of eight and 11. But many hadn't understood the implications. The burden of the fact that they were HIV positive was only felt later. The issues they raised fell into four broad categories.
Stigma and disclosure: Many became aware of the full weight of their status when they learnt about HIV during life skills classes at school. They were worried about being identified as being HIV positive and were careful not to talk about HIV too much, or to remain silent for too long. They were worried that if their status was disclosed, they'd be shunned and that other pupils wouldn't come near them for fear of being infected. Most of the children did not share their HIV status with others. They were often uncertain of when to tell people, what exactly to tell people, or who to tell.
One teen felt he needed to disclose his status to his friends and teachers. But he was cautioned against doing so by carers at the facility. Their concern was that it could lead to the status of other children being exposed and that this could lead to the children in their care being stigmatised.
Challenges of living in a childcare facility: The teenagers we spoke to felt they faced harsher forms of control than their school peers who lived with family members. They were frustrated about not being allowed to have sleepovers at their friends' homes, having to attend outings that they were not necessarily interested in, and not being able to go out to meet with friends. They were transported in vehicles that were labelled with the childcare facility branding, which they felt exposed them to discrimination and stigma.
They didn't like sharing rooms, sleeping on bunk beds, not having keys to their rooms and getting too little pocket money. They also felt like they couldn't make their own decisions.
Lack of belonging: Many had had little or no contact with their families. This meant that they felt they were unable to relate to their pasts. This made them feel that they didn't belong anywhere. They missed family connections which left them feeling uncertain about who they were and what their futures held.
Making the changes
The research shows that for HIV positive teens in care, the residential setting, their HIV status and their adolescence intersect to create a unique situation. It is important for caregivers to understand the social complexities they experience.
Our study points to several ways in which their situation can be remedied and provides valuable lessons for caregivers and childcare facilities.
At the centre is changing how these teens are dealt with so that they feel like they have personalised interventions. The could take several forms. For example those teens who were interested in participating in faith structures, sports clubs and other activities could be encouraged to do so.
For others it may involve taking on greater responsibilities at the home to facilitate the confidence and independence they need. And for those who are in contact with their families, it could mean more structured visits to help them connect.
It's evident that a combination of educational, health and psychological resources are needed to support the children's resilience and to manage their ability to cope in the next phase of their lives: living with HIV outside the home.