BREAKING THE STIGMA – Bringing young people living with chronic desease together
Together with clinicians in Groote Schuur Hospital, we are developing a cross-departmental support group for adolescents with chronic illnesses, including HIV.
Since 2005, global deaths from AIDS have fallen by almost 40% across all age groups except for adolescents. Despite the scaling up of treatment, AIDS is now the leading cause of adolescent deaths in Africa.
The management of chronic conditions in adolescence, a time of change, is a major challenge for young adults, their families and healthcare teams. Low diagnosis rates and limited access to care contribute to adolescent mortality.
For those receiving treatment, the outcomes are still poor. With children, parents often directly manage care and enforce adherence treatments and medications. As adolescents start to manage their own care, things can fall apart. They often have difficulties in conceptualising future consequences of their actions and tend to see themselves as ‘bulletproof’. Concerns about peer relationships and self-image often conflict with the demands of chronic illness and treatment regimens.
Better Together programme is one of the first of its kind worldwide to identify the advantages of bringing young people with different conditions together, especially when it comes to overcoming the sense of isolation and stigma.
One to One Children’s Fund is now working to hone this approach with Groote Schuur Hospital, creating a new model of peer-led adolescent support groups that helps them cope with their illness on a physical, psychological and social level.
This programme is one of the first of its kind worldwide.
young people in each cohort have been trained to become Youth Champions
training sessions for mentors with two follow-up courses
young people living with chronic illness have been reached
has been invested in this programme
Weekly peer group sessions provided for 12-19 year olds living with chronic illnesses. Instead of separating out young people into illness-specific groups, this approach aims to reduce the stigma associated with certain chronic illnesses by providing young people with an adolescent-friendly space to share their experiences.
Health and psychosocial support delivered by a psychologist, specialist clinicians and social services staff, with a focus on therapeutic games to address issues including self-esteem, self-harm, depression and anxiety; and equipping young people with coping skills.
A Family Planning Sister provides a “one-stop-shop” for contraception advice and counselling.
15 young people have been trained to become Youth Champions; role models that support young people with chronic illnesses both in their clinics and also out in their communities, supporting hard to reach young people who might not be accessing services.
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
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 (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.
HELP SUPPORT BETTER TOGETHER
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