Better together
“BREAKING THE STIGMA”- bringing young people living with chronic illnesses together
Together with clinicians in Groote Schuur Hospital, we are developing a cross-departmental support group for adolescents with chronic illnesses, including HIV.
After a challenging period of disruption due to COVID-19, we are heartened to see our Better Together Programme, a pioneering initiative run in partnership with Groote Schuur hospital, bouncing back to its full range of activities. This programme is among the first of its kind to assemble young people living with HIV and other chronic health conditions in order to alleviate feelings of isolation and stigma. By teaming up with Groote Schuur hospital, we are carving a new path for support groups that are led by peers and that help young individuals navigate their illnesses on physical, psychological, and social fronts.
Over the past year, we have seen 10 dedicated Peer Mentors running sessions that have reached 138 young people through weekly group meetings and individual counselling. The activities and sessions have evolved to be incredibly diverse and innovative. Groups often kick off with an engaging activity, such as karate or hip-hop dance classes, which have been a big hit with the participants. These activity- driven sessions often open up the floor to more profound discussions once the activity concludes.
What's more, we've witnessed an exciting development as participants have started proposing their own topics for sessions, increasing the programme's participant- driven nature. To ensure comprehensive support, all group sessions continue to be co-facilitated by a professional psychologist who can address any arising issues on an individual basis. Even with the return of in-person meetings, our virtual communities on WhatsApp and Facebook remain active, with Peer Mentors providing additional support through telephone calls.
“This programme is one of the first of its kind worldwide.”
Recognising that a child's chronic illness reverberates through the entire family, Better Together extends its assistance by providing parent support groups in waiting rooms and offering specific support for families identified as at-risk.
However, we've observed that the economic difficulties faced by these young people and their families pose a hurdle, as they sometimes struggle to afford transport to the hospital. As we move forward, we aim to factor in transport costs into the program's budget to ensure those most in need can still access our support. We've also noted an increased demand for peer and mental health support from young people living with HIV.
To understand the impact of the Better Together Programme, we've initiated research to examine its effect on factors such as adolescents' resilience, internalised stigma, adherence behaviour, and mental wellbeing.
key facts
15
young people in each cohort have been trained to become Youth Champions
15
training sessions for mentors with two follow-up courses
250
young people living with chronic illness have been reached
£39,000
has been invested in this programme
Our Peer Mentors continue to inspire us. They've proven to be reliable, competent, and have led engaging, participant-heavy groups. They have stepped up to take on additional groups and introduce new topics. One Peer Mentor has even transitioned into an administrative role within the project, and several have moved into their first jobs, with the confidence and skills they gained through their mentoring experience playing a significant role.
Looking to the future, our objective is to widen the reach and deepen the impact of the Better Together Programme. With funding from PEPFAR that our South African team secured, we've been able to extend the programme to Victoria Hospital and its feeder clinics in Cape Town. Here, a team of eight Peer Mentors will support 100 young people living with chronic conditions and 90 of their parents or caregivers.
Additionally, we've developed a toolkit for replication which has been shared with organisations in Malawi, Zambia, and South Africa, and presented at the PATA Summit attended by healthcare workers from 26 sub-Saharan African countries. As part of our scale-up efforts, we've developed a mobile health app, mHealth, which has the potential to enhance recruitment, capture real-time data, improve our understanding of the project's impact, and serve as a valuable information-sharing resource.
“I’ve grown so much confidence and could talk to others without being scared”
“I enjoyed being able to inspire other young people and being their support system”
“I like that everyone can just be honest”
“It gave me strength and the reasons to keep fighting”
“I feel like a weight is off my shoulders”
“I am so happy to hear that I am not the only one struggling with these things”
AISHA’S STORY
Aisha (not her real name) is a teenage girl with a late diagnosis of perinatally- acquired HIV. Due to severe complications of advanced HIV, Aisha needed a lengthy hospital stay, and in 2019 was admitted to an adolescent ward for over six months. Although she attended hospital school when she was well enough and made friends with other teens on her ward, Aisha struggled with isolation and loneliness.
Aisha and her mother benefited from individual sessions with the One to One psychologist. During Aisha’s long months in hospital, the bright point each week was the Better Together group, which she walked to when she was strong enough and went in a wheelchair when she was not.
The group had an immense impact on Aisha and several other teens admitted for lengthy hospital stays. Aisha spoke repeatedly about looking forward to group. For her and other seriously ill adolescents, the group provides a vital link to the outside world beyond the hospital, where teens talk about regular life issues like relationships or school.