Growing into adolescence
The number of young South Africans between 15 and 24 years of age who are living with HIV is high: 13.6% of young women and 4.5 % of young men in this age group are infected.
Young people of this generation who were infected with HIV at or around birth have survived despite many challenges. These teenagers and young adults are an extremely vulnerable cohort who face difficult circumstances and an uncertain future.
A 12-year-old girl entering adolescence during 2013, for example, will have been fortunate to gain access to antiretroviral therapy (ART) before the age of three years. During infancy and early childhood she will have had many episodes of illness, will probably have spent time in hospital, and may now be suffering from long-term complications associated with her infection. She will have lost one or both parents and may have grown up in a children’s home or with a succession of different guardians in different households.
All teenagers face difficult challenges during adolescence: dealing with what is happening to their bodies and minds, coping with peer pressure, forging their own identity, and discovering independence. But adolescents living with HIV are faced with the additional burden of their disease and the need to adhere tightly to their ART regimens.
Research suggests that managing such demands can be difficult. In an HIV clinic, adherence to anti-retroviral therapy is the most important process outcome and an undetectable viral load its best indicator, but a recent study from Zimbabwe, for instance, found that fewer than 16% of adolescents attending a well-established support group were taking more than 95% of their prescribed antiretroviral drug doses.
Long journeys to clinics, a lack of money for bus fares, and the need to hide medications from other people were cited as some of the reasons for failing to take ART drugs. The odds of non-adherence were also found to increase in the face of food insecurity, the death of parents, and frequent changes of residence. The majority of participants in this study reported symptoms of depression, and non‑adherence was greater among older adolescents and associated with psychological symptoms.
An analysis of HIV-positive adolescents growing up in Cape Town reported similar findings: although 81% of the adolescents had undetectable viral loads when last assessed, they continued to be exposed to grave stress. Fifty-five per cent were double orphans, 58% had been referred for psychological or psychiatric support, and 31% were experiencing serious difficulties at school. Physical challenges included chronic lung disease (13%), a history of tuberculosis (25%), and short stature (50%).
While HIV-positive adolescents need consistent access to a package of holistic health care, as yet, there are no country-wide data describing South Africa’s progress toward the establishment of ‘adolescent friendly’ clinics. At such clinics, adolescents should find opportunities to develop long-term therapeutic relationships, access to reproductive health services, life skills coaching, and well-functioning support groups.
Significant contributions have been made by the National Adolescent Friendly Clinic Initiative (NAFCI) and through workshops and discussions facilitated by organisations such as the Right to Care, and Paediatric AIDS Treatment for Africa (PATA). However, clinics delivering care to this at-risk cohort need additional support in the form of more extensive social work resources as well as ready access to specialist psychological and psychiatric services. If trained professionals are unavailable, we need to improve the skills and resources of counsellors, community health workers and patient advocates to address complex psychological problems.
Youngsters who are struggling at school need proper educational assessments. If necessary, they should to be placed at schools that offer more appropriate skills training and which can help them fulfil their potential.
Resources are scare. If we are to address the educational challenges faced by young people growing up with HIV, interventions should be developed that use the combined resources of the provincial Departments of Social Development, Education and Health. Proactive programmes are particularly important: interventions that equip parents to deliver home-based stimulation, for example, and achieve the milestones of Early Childhood Development (ECD) have been shown to benefit children from disadvantaged first world homes. Similarly, children who are school-ready when they enter grade R are more likely to benefit from school curricula. Such ECD projects could be run in communities and reach all children, regardless of their HIV status.
Making the transition from adolescent to adult services is easier if young adults have already received ongoing service support. Young people graduating from adolescent services need a structured, planned pathway that facilitates a seamless transition from dedicated adolescent services to the community services available for adults.
We have made substantial clinical efforts to help HIV-positive infants and children reach young adulthood. Unless we step up our efforts to deal with the psychological and educational challenges these children face, much of this work will go unrewarded.
- 90% of children initiated and maintained on ART and/or TB treatment.
- screening and interventions for early identification of nutrition and HIV-related stunting.
- 100% current school attendance among orphans and non-orphans aged 10 -14 by 2016.
- scale up interventions to protect the rights of orphans, vulnerable children and youths, and to reduce their vulnerability and the impact of HIV and TB.
- provide mental health services as part of the package of services provided to support orphans and vulnerable children.
- strengthen health services to offer child- and adolescent-friendly HIV and TB service packages, including adherence support programmes.
- prioritise specific child indicators in the M&E system, with effective management interventions if targets are not reached.