“At the beginning of this year, I began working with nine adolescents, between the ages of 10 and 19, living in Grahamstown East. Some of them are interested in sports, some play musical instruments, some aspire to be lawyers, and some even have children of their own. But what each of these young people have in common is that their long-term health depends on their ability to take HIV-treatment, on time, every day, for the rest of their lives. These are just nine of the 300 000 adolescents living with HIV in South Africa, half of which will be on treatment by 2020. We know very little about the specific needs and challenges of these youth, but the little we do know, suggests that adolescents are less adherent to their medication than both adults and young children.
In collaboration with my team, I have been conducting research in the Eastern Cape to try and learn more about how young people understand and use HIV-treatment. I spent four months in rural villages in Nqushwa, and then moved to Grahamstown in early January to conduct an additional four months fieldwork. Over this time, I worked intensively with teenagers on ARV treatment, as well as their families, healthcare workers and social service providers. We also conducted participatory workshops with 35 teens on ARVs, in which we started to design tools to support treatment-taking and learnt more about experiences of health and illness. Throughout the fieldwork, we have been working collaboratively with local NGOs, the Department of Health and UNICEF in order to conduct research that will inform, and improve, health and support services for youth.
Since 2006, Hospice has been doing pioneering work with HIV-positive youth, and would have been amongst the first organisations in the country to respond to the needs of adolescents on HIV-treatment. Its adolescent support group, which has been running for the past 8 years, remains one of the few teen-oriented HIV support groups in South Africa. It is also a testament to Nomati that after eight years, youth participants are still so eager to attend the weekly support group.
Given this history, it was a great privilege to work with Hospice and its adolescent support group throughout my four months in Grahamstown. The group convenes every Wednesday afternoon and is comprised of 11 adolescents on HIV-treatment – most of whom have lost their parents to AIDS. After eight years experience, Nomati, who is the support group facilitator, is undoubtedly one of South Africa’s most expert practitioners in offering psychosocial support to HIV-positive youth. She has tracked the wellbeing of these young people for most of their lives, supporting them after the death of their parents, in times of severe illness, and through transitions to new caregivers.
My research in Grahamstown has shown that reconciling the loss of a parent, and properly integrating a child into a new home, are fundamental to ensuring that they maintain a positive relationship with HIV-treatment and are supported in their daily medication-taking. Hospice’s work in helping families to manage death has undoubtedly been life-saving for many young people in their support group.
I have seen also over the course of my research that young people are rarely spoken to directly about their HIV-status or their medication. Instead, public health facilities and non-governmental support programmes have preferred to communicate with parents and guardians. Hospice is therefore unique in creating a space for young people to speak and learn about their health and the experience of taking chronic medication.
During our time in Grahamstown, we were asked by the National Department of Health to gather the inputs of HIV-positive youth on what should go into the National Youth Policy. This resulted in a series of fun activities in which Hospice support group members gave their recommendations for how health services could be improved. Young people designed their ‘dream clinics’ and role-played how they would like healthworkers to interact with them. Youth wanted clinics that were close to their homes and schools, that offered food, clean water and confidentiality. They also wanted healthworkers who addressed them respectfully, and gave clear directions for how to take their medication properly.
Our collaboration with Hospice has been a model example of how academics and social service providers might work together to build a society that is more responsive to the needs of its citizens. I am grateful to Hospice for their support of our research, and their willingness to engage with our ideas and recommendations. I have great admiration for their work and hope that our research will help others to learn both from their challenges and successes. “
This article was published on the Grahamstown Hospice website.for more interesting stories visit http://www.grahamstownhospice.org.za