New project seeks to reduce stigma for HIV-infected teens

Members of a support group for HIV-infected children colour their drawings in efforts to build positive relationships.

By RUSHDIE OUDIA

With open dormitories and packed classrooms, HIV-infected children often hide when taking their drugs for fear of being seen by their peers.

Some of them have even abandoned taking anti-retroviral drugs for fear of being discriminated against.

Despite HIV and Aids being incorporated in school curricula, adolescents still struggle with how to deal with the condition as most sensitisation programmes involve adults.

However, not all hope is lost. A project dubbed Sunburst in Kisumu has been launched with the aim of meeting the psychological and social needs of children and teens living with HIV by building supportive communities free of stigma.

Sunburst targets children aged six to 18 years, with the majority of those attending the programme being orphans.

The project is located at three sites in Kenya and has served 409 HIV-positive children, 1,644 HIV-positive adolescents and trained seven peer leaders in working with and empowering adolescents living with the virus.

Many adolescents living with HIV are withdrawn. Consequently, Sunburst’s main goal is to provide psycho-social support, leading to increased adherence to  medication, greater self-esteem, and lowered risk behaviour.

Kept to myself

“I used to be the kind of girl who hid my face and kept to myself. Now I know it’s time for me to show it. I am exactly where I’m supposed to be and I will let the light shine on me. I will not hide anymore because this is me,” says one HIV-positive teenager who has managed to overcome the stigma that comes with the condition.

Sunburst also provides psycho-social support for caregivers with a focus on disclosure.

Family Aids Care and Education Services (Faces) Nursing Officer Robina Khajira says adolescents go through a lot and many of them suffer in silence.

“The children feel ashamed to go to the clinic and are also worried about what other people will say or think about them,” she says.

Adolescents who are still learning and are in boarding school find it hard to deal with stigma and discrimination. Their peers who do not understand their status laugh at or tease them.

Ms Khajira says this has led to many of them not taking their medication as prescribed so they can avoid ridicule from their peers.

Last August, Sunburst implemented its first camp targeting 34 HIV-positive youth. The programme was conducted in partnership with Faces and the University of Eastern Africa, Baraton.

During the camp, the teenagers did not mingle with adults. This was so they could feel free with each other.

Khajira says the impact of Sunburst is huge since in the end, the youth feel free, build positive relationships with their peers, and engage in recreational and art therapies that build their self-esteem and coping ability.

“Stigma is reduced and they resume their anti-retroviral drug regimen without skipping any day,” says Khajira. 

According to Unicef, two million adolescents aged 10-19 are HIV-positive, with 1.5 million of the cases being in Sub-Sahara Africa.

About 41 per cent of new HIV infections across the globe happen among young people aged between 15 and 24 years, with 79 per cent of the new infections in Sub-Saharan Africa.

Founder and Executive Director of Sunburst, Geri DelaRosa, reveals that young people are particularly vulnerable to HIV infection due to social, political, cultural, biological and economic reasons.

Dr DelaRosa says with increased access to paediatric HIV care and treatment, perinatally infected children are living longer and reaching adolescence and adulthood.

One youth in Sunburst says before he joined the project, he could not talk freely with anyone and anytime he tried talking to his peers, they would dismiss him and run away.

“I thought I was alone until I found people who appreciate me and now I feel relieved and free,” says the 16-year-old boy.

Once youths reach adolescence, they are able to fully comprehend their HIV status and the full weight of the diagnosis sets in, often leading to depression, anger, fear and their first experiences with stigma.

Another girl says she feels free, especially when she is in the support groups where they are guided in taking medication.

Project co-ordinator Nancy Yienya says mental health issues, poverty, stigma and strict medical treatment with side effects make it challenging for adolescents to remain in care.

She says many youths fall out of treatment, stop coming to their clinic and consequently build resistance to medication, fall ill or die.

According to a study conducted by Dr Hillary Wolf at Kisumu Faces sites, 57 per cent of the HIV-positive adolescent patients are documented as lost to follow-up, says Ms Yienya. 

Due to rising infection rates among adolescents and advances in medication, there is a growing population of adolescents living with HIV and, therefore, an increased need for adolescent-appropriate care and intervention. 

This prompted Sunburst and Faces to join forces in order to strengthen and further develop models of best care for more than 10,000 youths aged six to 18 currently receiving medical care at Faces clinics. 

The Sunburst mission is to keep families together by providing services that strengthen and empower individuals, families, and communities to ensure youth living with HIV and Aids reach their highest potential.