Due to the success of antiretroviral programmes in Malawi, many more children born with HIV are not only reaching, but also thriving in adolescence.
Due to the success of antiretroviral programmes in Malawi, many more children born with HIV are not only reaching, but also thriving in adolescence. They comprise a complex group with special healthcare and psychological needs which extend beyond routine clinic visits. These adolescents need support in areas such as disclosure and adherence to treatment.
According to the Global AIDS Response Progress Reporting 2013 (UNAIDS, WHO, UNICEF), less than 30 per cent of children worldwide who needed antiretroviral therapy received it in 2013. Lack of youth-friendly services worldwide has been widely documented by UNICEF and others.
In Malawi, adolescents living with HIV are under-served and there is a need to scale-up delivery of services for social and psychological support. This presents a new challenge to health care workers. Health workers, guardians, teachers and community-based organisations need capacity building to empower this group of teenagers and young people.
Under the government AIDS programme in Malawi, adolescents are grouped with children in the under-15 category. Therefore, there is no national data on adolescent HIV services. The integration of services at the clinic level is important and beneficial, however, adolescents living with HIV don’t always feel comfortable seeking health services together with adults, particularly their parents. The service delivery is unable to address their special needs.
Addressing needs of Adolescents’ living with HIV
Organisations such as the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) are working to make support available specifically for teens and adolescents. EGPAF supports more than 350 teens and adolescents living with HIV through ‘teen clubs’ throughout Malawi. Teen clubs, hosted once a month, give young people between the ages 12-20 a safe space for peer support through games and socialising, as well as the opportunity to learn about HIV.
Nicole Bouno, country director of EGPAF in Malawi, says a strong social network can help teens overcome the daily challenges of living with HIV by giving them the opportunity to discuss their feelings and challenges with peers who are having similar experiences. It also provides a sense of community and belonging that might not be available elsewhere.
EGPAF also hosts the week-long “Ariel Camps,” which give young people living with and affected by HIV the opportunity to discuss their status with their peers, learn about coping strategies, and make new friends who share their life experiences and can provide mutual support. Bouno said: “Initiatives for education, empowerment and life-skill development for adolescents living with HIV need to be scaled up.”
Bouno adds that providers need to be prepared to deal with adolescent HIV exposure and infections. With the scale-up in treatment of paediatric HIV, the number of children born with HIV and surviving into adolescence is rising. Young people also continue to be infected with HIV at an earlier age and require early identification of the infection through HIV screening and testing programmes which are confidential and non-judgemental.
In addition, the country director emphasises that adolescents who grew up with HIV represent a unique population facing the transition into adulthood while managing the complex stress of HIV within the family. “We need to continue designing and implementing programmes to transition HIV-positive adolescents from paediatric to adult care assuring maximal retention,” she said.
Challenges of delayed growth and drug resistance
According to Dr. Natella Rakhmanina, director of technical leadership at EGPAF, Washington DC, perinatally infected adolescents can be segregated based on those who have received treatment over the years and those who have not.
“Those who were started on antiretroviral treatment can be treated with good adherence and good treatment results. These youth do very well from the perspective of controlling HIV, but might face metabolic consequences from the long-standing history of using multiple ARV drugs,” said Rakhmina.
“Youth who have been treated intermittently throughout their childhood, particularly those with poor adherence, might face multiple ARV drug resistance and might have limited treatment choices left as adults. They also might face consequences such as delayed growth and puberty and delays in cognitive development.”
Dealing with family and community stigma, treatment fatigue, treatment adherence rebellion, and seeking independence are some of the issues adolescents living with HIV grapple with. They also face difficult choices about their sexuality and disclosure of HIV status.
Adolescents born with HIV are an increasing population group posing new challenges for healthcare. Scaling-up comprehensive youth-friendly services is the need of the hour. As the Malawi experience shows, psychosocial support and peer counselling are just as important as clinical care.
Read how the HIV response is failing teens across Southern Africa
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