SUPPORTING TEENAGE MENTORS LIVING WITH CHRONIC DISEASE
Groote Schuur Hospital was where One to One Children’s Fund started its pioneering work to deliver life-saving ART to children at the height of the AIDS epidemic in South Africa. In January 2018, we returned to Groote Schuur Hospital supporting a project working with teenagers living with HIV; as they begin to manage their own treatment and develop new relationships, while often facing stigma and isolation.
In this innovative approach, teenagers living with HIV come together in a weekly peer support group with other young people living with a range of chronic illnesses. The recognition that these young people face similar issues, irrespective of their illness, helps break down barriers and stigma for young people living with HIV and AIDS.
Since January, over 90 young people aged 12-19 years have attended weekly sessions where they share their experiences, socialise with their peers, and access medical and psychosocial support.
“ Young people face similar issues, irrespective of their illness – let’s break down the barriers.”
We have also supported the training of nine Peer Mentors as ‘Youth Champions’ to help lead the groups. Our Youth Champions are mentored by the expert team of doctors and nurses. The group members also benefit from access to a social worker, which allows for a more structure debriefing after sessions and is essential in helping the Peer Mentors cope.
Youth Champions have played an important role outside of the group sessions. They form connections with other teens within the hospital and encourage them to attend the group and interact with their peers in the clinic.
Youth Champions have also formed WhatsApp groups where they encourage group members not to give up and remind each other to take their medication. Some group members have also been on a picnic together, organised entirely by the Peer Mentors.
CASE STUDY: Story of a life transformed
“I was diagnosed with renal failure when I was 13 years old. I remember arriving at Groote Schuur Hospital and being put onto dialysis. I was surrounded by old patients who looked sick and I remember my parents telling me everything would be ok. But nothing was ok. I had never felt more alone and I was terrified.
No one in my family really understood what I was going through, even though they tried. No one at school understood either. All of my friends were in my sports team at school and since I couldn’t play sports any longer and was always going to the hospital we soon drifted apart. I was sick, I was different and I hated it.
I am now in my twenties, I have been transplanted and am working. I will never get those years of my life back… but I am alive. I am proud to be a patient mentor. I often feel like if I had had someone sit down next to 13 year old me who said: “I have been there, I know you are scared, but it will be ok”, I would have found it much easier.
Being able to give something back to someone else in a similar situation to me, has made me realise that maybe there is a reason that I got sick. Maybe I was meant to go through that to be able to help someone else. I am proud of being a member of the patient mentors and proud of the work that we are doing.”
– James, Youth Champion