Supporting adolescents and youth living with HIV – challenges and opportunities

At the first full day of the 19th International AIDS Conference in Washington, DC (AIDS 2012), we’ve already seen a plethora of statements and presentations detailing progress in the fight against HIV. There’s a distinct ‘milestone’ feeling, with many speakers offering a retrospective of the last 30 years, highlighting just how far we’ve come. A series of presentations addressed issues facing one particular group living with HIV –which over the years has often been neglected, falling between the monoliths of paediatric and adult HIV – young people and adolescents. They continue to experience significant gaps in services and facilities, even three decades in to the HIV pandemic.

Attending school is key to the successful social and psychological development of young people and adolescents, and a study from Botswana, presented at AIDS 2012 by Gabriel Letamo, examined the experience of 900 school age children living with HIV. Of these, 99% attend school regularly. The majority (98.6%) value school for a range of reasons, including meeting friends, learning and the hope it provides. However, 77% had experienced problems throughout school including ill health, missing lessons due to medical appointments, dropping grades and being party to unanswered questions about HIV. To cope with these challenges many experience self-isolation, non-disclosure, and non-participation in school trips. More positively, almost half (48.2%) approach their teachers to discuss issues, and 19.5% speak to relatives. This study suggests that children and young people value school –“I go to school because I have a future” according to one respondent.

How do young people deal with being newly diagnosed? This was addressed by another presenter, Gary Hopper. He described a study from Kenya suggesting young people can, and do, develop ways of dealing with their HIV status through ‘resilience’: a dynamic process of positive adaptation. In this qualitative study undertaken in Kibera – a large slum outside of Nairobi – findings from a series of focus groups with 82 young people aged 18 to 25 confirm that this group develops resilience using seven forms of coping strategy, including accepting their HIV positive identity, disclosing their HIV status to supportive others and re-engaging with friends for social activities. Primary sources of social support included romantic partners, friends, and people living with HIV. The inter- and intra-personal resilience revealed in this study highlight ways that young people are able to adapt to their new HIV status.

For adolescents (aged 10-19) living with HIV, negotiating this difficult developmental stage can be additionally hard, and requires strategic and sustainable service support. In an important presentation, Fabian Cataldo (Research Director of Dignitas, based in Malawi) reported a four-country study investigating the experiences and challenges in sexual and reproductive health for adolescents living with HIV. Data were collected from Botswana, Malawi, Zambia and Zimbabwe using a range of methods including interviews, focus groups, observation and survey. Findings reveal significant gaps in age-appropriate support and care, and there is clearly inadequate support for adolescents as they embark on sexual and love relationships. In addition, healthcare workers lack appropriate insights into how to enable adolescents to disclose, negotiate choices about relationships, and how to provide an ‘adolescent friendly’ environment.

What interventions can help? The final presentation to consider here came from Lima, Peru. Desiree Salazar Ramirez described an intriguing initiative aiming to provide children and adolescents with “a caring, quality and confidential service.” Activities included training 31 adolescents living with HIV in self-care and human rights, 45 community leaders in issues around HIV, and 73 teachers on HIV in young people and stigma. Afterwards, young people and adolescents living with HIV were reported as being more assertive and self-confident, and benefiting from a more informed community and education setting. 

This range of diverse presentations is an important reminder not to allow this vulnerable group to disappear off the radar. 

It is perhaps ironic that the increasing number of adolescents and youth living with HIV is largely a product of the dramatic rollout of anti-retroviral treatment (ART) in recent years. HIV-infected children are now surviving for much longer, and programmes must be expanded to adapt to this changing demographic. 

What we heard this afternoon confirms that, although young people living with HIV face a range of difficulties, they are by no means ‘passive victims.’ They seek solutions; growing and benefiting from programmes designed to empower them as they transition into adulthood. 

As one Kenyan respondent describes, the aim of our endeavours must be to encourage young people living with HIV to “feel like any other child, and accept the person I [am].”

Ian Hodgson