For young people living with HIV, adolescence can be extra challenging, because the universal hurdles of growing up are aggravated by the physical, social, and emotional toll of living with the disease.
Owen*, 17, is living with HIV and started receiving antiretroviral treatment at Makerere University Joint AIDS Program (MJAP) ISS clinic in Mulago Hospital in January 2014.
Like any other adolescent living with HIV Owen has faced major challenges, especially the fear of stigma from his school mates if they find out about his status. As a result he resorted to taking his medication in hiding, and when his treatment schedule would clash with school activities, he opted to miss his treatment.
Taking a ‘drug holiday’ from HIV medication
Eventually Owen grew weary of taking medicine and decided to take what he calls a ‘drug holiday’.
“In order to keep peace with my aunt, who was very supportive, I continued going for my clinic appointments. But I would pick up my drugs and throw them in the toilet. My aunt always raised concerns about whether I was taking the drugs well but I assured her that everything was alright,” Owen says.
But not adhering properly to treatment resulted in Owen succumbing to multiple opportunistic infections, and he grew weak and sickly. His doctor was very concerned and referred Owen to a peer supporter.
Deepening suicidal feelings
“When I reported to the clinic, I was scared and didn’t know what to do, I was contemplating suicide. I hated myself and anyone who wanted to talk about my sickness and treatment issues,” he says.
With deepening suicidal feelings, Owen agreed to meet with the peer supporter, a fellow teenager who has been receiving antiretroviral treatment for close to eight years. He shared with Owen his life story, the challenges he’d faced and how he overcame them.
Peers regularly meet at the clinic and share experiences. They also form ‘adherence clubs’ and set alarms on their phones, so that they are reminded when to take their drugs. In their clubs, they also organise social events, go to beaches together and revise their books together.
The peer support helped Owen get back on treatment. He also opened up to his auntie on his adherence challenges and apologised for not taking his drugs regularly.
Reaching young people through their peers
A large number of adolescents like Grace, who were born with HIV, now have the opportunity to live long and healthy lives as a result of increased access to antiretroviral therapy, if only they adhere to their treatment.
In March 2015, MJAP partnered with Pediatric AIDS Treatment for Africa (PATA) to implement Project REACH (2015 – 2016), an adolescent, peer-support model that recognises the unique ability of young people to take a constructive role in providing support to their fellow peers.
Through this programme and with support from the US Centres for Disease Control and Prevention (CDC-Uganda), MJAP hosts quarterly meetings for young people (10- 24) living with HIV. As well as antiretroviral adherence, they include discussion on reproductive health, disclosure, life skills, college preparation, personal finance management, and goal setting as agreed on by the group.
Adolescent health needs
Dr Fred Semitala, a consultant physician, care and treatment advisor and head of research at MJAP, says: “On a daily basis, MJAP ISS clinic in Mulago records an average of 350 patients. The huge numbers make it almost impossible for the clinicians to concentrate on adolescent health needs. Using the peer support model, we have seen more adolescent client follow up, more disclosure and more adolescents are adhering better to their treatment.”
Adolescents living with HIV are a growing cohort and Dr Sabrina Kitaka, a paediatric and adolescent health specialist at Makerere University College of Health Sciences, observes that they often struggle to cope with various challenges including adherence to medication, disclosure to significant others as well as having to live with dignity amid the constant reminders of prevention. But adolescents may dislike the need for support from the healthcare providers especially if the health workers are not well oriented in communicating with them.
“Peers can be an important source of psychological support, helping young people living with HIV to build their confidence, reduce anxiety and promote a sense of belonging,” Dr Kitaka says.
Ultimately peer support can lead to improved clinical health outcomes, as well as a healthy transition into adulthood.
An AIDS-free generation
Richard Kilonzo, MJAP’s orphans and vulnerable children co-ordinator, says: “Young people are engaging in sexual activities at an early age. To stop reinfection and pave the way for an AIDS-free generation, peers are empowering other young people with vital sexual and reproductive health information.
“In the last six months the demand for information on sexual and reproductive health has increased. Young people are finding it easier to speak to their peers as compared to health workers about sex. The programme has also gone a long way in helping them set priorities in life.”
Certainly this has been true for Owen, who was impressed to hear that his peer supporter will be completing his studies soon and has big dreams for the future. Owen says: “After hearing his story, I was touched. I wept and pitied myself, but by the end of the session, I had gained strength. I felt I needed to make a u-turn for my life. From that day, I resolved to resume taking my medicine regularly and improved my adherence.”
Owen’s opportunistic infections are now gone. He is studying well and has plans for his life. He knows that if he keeps going steadily on this path, his future can only be bright.
*Name changed to protect identity
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