An Emerging Crisis: The Child & Youth Treatment Gap

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When it comes to HIV & AIDS statistics, the numbers having to do with young people are the most frightening of all. Today, AIDS is the leading cause of adolescent death in Africa, where a shocking 26 new HIV infections occur among 15-19 year olds each hour—7 in 10 of them among girls. And while children account for just 5% of people living with HIV, they represented 10% of all AIDS-related deaths in 2015. To make matters worse, less than half of HIV-positive children currently have access to treatment. Access, however, is only half the battle.

“AIDS is the leading cause of adolescent death in Africa, where a shocking 26 new HIV infections occur among 15-19 year olds each hour... and less than half of HIV-positive children have access to treatment.”

 

Drugs are Not Enough

The experiences of our community-based partner organizations (CBOs) make it abundantly clear that without holistic, wrap-around support, young people will struggle to adhere to treatment, and their well-being will be dramatically compromised by an HIV diagnosis—even where treatment access is secure.

Many community-based organizations use play-based therapy as part of the support offered to HIV-infected and affected children and youth.(Alexis MacDonald/SLF)

Like so many aspects of the community-based response to HIV & AIDS, the support CBOs are offering to young people is distinct in a number of critical ways. Without exception, our partners know that treatment for young people – and for teenagers especially – will not succeed on the ‘medicalized model’ favoured by the international donor community, which places emphasis predominantly on the provision of the antiretroviral drugs (ARVs) used to treat HIV & AIDS. Making drugs available is not enough. 

CBOs know that with a generation of parents lost to the epidemic, community structures have been badly compromised. They see that poverty and malnutrition are constant threats for young people. And they’ve witnessed how these stresses are coupled with an increased risk of gender-based violence that renders adolescent girls particularly vulnerable. They are also all too aware that orphaned children continue to struggle with the grief and loss they have endured, and that those whose HIV-positive status is revealed still suffer terrible stigma.

Supporting Children as Whole Persons

The responses that these community-based organizations are rolling out – through varied interventions – is driven by a single, essential insight: children infected and affected by HIV & AIDS must be supported as whole persons. A potentially crippling constellation of challenges must be met by interventions that are just as encompassing—ensuring access to treatment, yes, but also restoring community bonds, supporting caregivers, enabling continued education, promoting positive living, and fostering a sense of agency in young people. Above all, CBOs recognize that young people are unique in important ways. Where young children are concerned, for instance, they are committed to ensuring that support systems are operating effectively—engaging with children themselves, but also with their parents, grandparents, older siblings, and the other adults children inevitably depend upon. With adolescents, meanwhile, CBOs address the tremendous social pressures faced by teenagers alongside the medical challenges associated with preventing and treating HIV—talking to them about treatment, but also about sex, substance abuse, and so much more.  


Innovation in Programming

Some of the many, vital innovations of our partners include:
 
  • Child-Friendly Clinics: Special clinics for HIV-affected young people, staffed entirely by pediatricians and counsellors trained to relate to children and adolescents.
  • Peer Counselling: Support systems that engage HIV-positive young people as peer counsellors, who can speak with other infected and affected youth from their own experience, and provide a meaningful link to other services.
  • Capacity Building: Programmes that train community health workers and home-based care workers to engage more confidently and effectively with children and teenagers, and to support their caregivers in helping them adhere to treatment.
  • Early Childhood Initiatives: The provision of early childhood learning initiatives which serve as an entry point into HIV care for families who are uneasy about visiting medical facilities because of possible exposure to stigma and discrimination.
  • Grandmother Support: Programming that supports the grandmothers who have stepped in to care for millions of orphaned children—typically with very few physical, emotional, and material resources of their own.
  • Mutual Support Groups: Routine gatherings for HIV-positive young people, where they find safety and a sense of community with their peers, free from fear and stigma, and develop the self-esteem they need to take on leadership roles.

“Infection with the HIV virus is, sadly, only one of the many blows these children and youth have had to absorb.”

 
Community-based organizations understand that infection with the HIV virus is, sadly, only one of the many blows these children and youth have had to absorb. As a result, none of their treatment-oriented innovations are taken as stand-alone measures. Rather, they are part of comprehensive systems of support that address every aspect of young people’s lives.
 
Here are just a few of the excellent innovations being developed by some of our outstanding African partners as part of their holistic programming...

 


Many community-based organizations use play-based therapy as part of the support offered to HIV-infected and affected children and youth.(Alexis MacDonald/SLF)

South Africa
The Blue Roof Clinic is home to the ‘Kidz Alive’ programme, which helps build the capacity of healthcare workers to engage with children around HIV-related issues. ‘Kidz Alive’ builds adults’ confidence and skills to engage with and counsel children in their own language, using play and art techniques, and creating child-friendly spaces. Training is also provided for counsellors and facilitators of HIV support groups, so that they are better prepared to guide children’s caregivers on issues of disclosure and adherence.

Cotlands has found that one of the many challenges facing young children living in disadvantaged, AIDS-affected communities is extremely limited access to early learning opportunities. As a result, the organization runs early learning playgroups, to help ensure that children do not fall behind before even beginning school. These playgroups are routinely visited by nurses who assess the children’s health and screen for HIV, TB, and other illnesses—a reflection of the fact that many families are more open to receiving HIV-related services when the entry point is preschool education.

The Ekupholeni Mental Health and Trauma Center runs a ‘Bambanani Group’ for the caregivers of HIV-positive children in grades 3 to 7. In many cases, these children know that they are taking medication, but do not know why. Their grandmothers are invited to come along to the meetings with the children’s medication in hand, for role playing sessions. During the role play, Ekupholeni helps ensure that children can identify their own medication and read the instructions well. The organization also conducts disclosure workshops to help prepare grandmothers to tell the children about their HIV status.

MusicWorks in South Africa runs weekly music therapy sessions for children who have been referred to them by health clinic staff, teachers, nurses, and parents. In their ‘Music for Life’ programme, they continually see how the spirits of traumatized children and young people who have lost so much because of AIDS are beginning to heal by learning and mastering musical skills, and by making music with one another.


Tanzania
At after-school clubs run by Upendi Na Matumaini (UMATU), teenagers educate each other about how HIV is transmitted, and about sexual and reproductive health. Students share stories about getting pregnant at an early age, and what it means to shoulder such responsibilities. UMATU reports that as a result, students are becoming more confident, courageous, and aware of high-risk behaviours that can interfere with their schooling and increase their risk of infection.

 


Uganda
MUJHU’s ‘Young Generation Alive’ programme runs a support group for HIV-affected young people which meets once a month. Over the past five years, more than 4,500 children have participated in these meetings, and many are now involved in public advocacy around HIV care and treatment. Among other things, these emerging adolescent leaders work to sensitize local schools with information about HIV transmission, prevention, management, and stigma.
 
Like so many CBOs, St. Francis Health Care Services has found that grandmothers are instrumental in mitigating the damage inflicted by AIDS. The organization supports these grandmother caregivers through income-generating activities, agricultural?activities, microfinance and savings groups, psychosocial support, and advocacy forums. St. Francis also provides training and counselling on child treatment adherence, nutrition, parenting, and legal issues such as protection from land-grabbing. Routine home-based care visits also ensure regular medical check-ups for all family members.
 

“Adolescents who succeed with ARV treatment into adulthood have been embraced within a community network of care, which includes other young people like them.”

 
Peer support is an integral component of Reach Out Mbuya’s (ROM’s) leadership in reaching children and youth affected by HIV & AIDS. Teenage and Adolescent Supporters are selected from among ROM’s clients to be trained as peer counsellors, and make over 6,000 home visits to other young people each year. The organization also runs a music, dance and drama group, and a peer-led ‘Friends Forum’ for their young clients. At ROM, the adolescents who succeed with ARV treatment into adulthood have been embraced within a community network of care, which includes other young people like them.
 

Zimbabwe
Chiedza Child Care Centre helps HIV-positive children access health centres, arranging for transport and, where necessary, paying their hospital fees. Chiedza also operates its own clinic focused on child treatment, as well as a soup kitchen which provides 256 orphaned and vulnerable children with daily meals that help ensure their overall health. As well, Chiedza’s volunteer Community Health Workers conduct home visits to provide follow-up support and monitoring to the HIV-positive children and youth in the organization’s care.
 
Mavambo Trust has become an oasis of hope for orphaned?children at high risk of child abuse, neglect, and HIV infection. Many of these young people are effectively nomadic, moving from one relative’s household to another. Incredibly, however, those supported by Mavambo are nevertheless outperforming their peers in mainstream schools. Thanks to the provision of school uniforms, supplies, nutritional support, and more, these young people are regaining a sense of self-esteem and belonging, and are becoming mentors to their younger peers.
 

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