Phindile Khumalo / Medical Social Worker / Nongoma, KwaZulu-Natal, South Africa
There comes a point where we need to stop just pulling people out of the river. We need to go upstream and find out why they’re falling in.
Archbishop Desmond Tutu (7th December 1931 – 26th December 2021)
In 2017 it was estimated that 37% of the estimated 11 million people living in KwaZulu-Natal have HIV, one of the highest prevalence areas worldwide. In what is known as ‘the garden province’ of South Africa, a grassroots organisation has taken this sage advice from Archbishop Tutu on board. With minimal funding or publicity, but an awful lot of drive and determination, they have looked upstream and asked why a group of young people keep falling into dangerous waters.
In 2016 Phindile Khumalo, a social worker, and Mom Ntshosho, an HIV counsellor, in the busy market town of Nongoma, founded ‘Amaqhawe – Achievers of the future’. This is a support group for children and adolescents who have contracted HIV. It is well known that for mothers whose viral loads are not adequately surpressed, vaginal delivery and breastfeeding pose a risk of transmission, however there are complex social, cultural and personal reasons why accessing and continuing ARV treatment is diffiuclt for many. Since 2016, despite the additional challenges posed by Covid-19, Phindile and her colleagues have provided a stable support system for children and adolescents living with HIV in Nongoma, and the results speak for themselves.
This article is about a support group for adolescents infected with HIV in the perinatal period. The group is based in Nongoma, South Africa. Nongoma is a small town in rural KwaZulu-Natal that is rich in heritage but characterized by poverty, unemployment and staggering rates of HIV. The support group was founded in July of 2016 in an attempt to mitigate the challenges faced by these adolescents.
In 2016 I was working in the HIV clinic of Benedictine Hospital, Nongoma. While there I observed what seemed to be a steady incline in the number of deaths of adolescents born with HIV. This was confusing to various health care workers because the rollout of antiretroviral drugs (ARVs) was at its peak, and life expectancy was predicted to be much higher than in previous years. The adolescents were collecting their medication from the hospital, but they were not taking it. Without these ARVs, their viral loads of HIV were not being suppressed. Discovering the reasons for this non-compliance posed a great challenge to clinicians.
It became clear that although the medical community had taken great strides in providing medical treatment that increased the life expectancy of these adolescents, it was ill-equipped to provide the psychosocial support required by patients. To address the non-compliance observed, adolescents whose viral loads were not suppressed were referred to medical social workers for counselling and health education. Within a group of 31 adolescents who were referred, 23 had viral loads in the thousands to tens of thousands per millilitre. High viral loads would sentence these adolescents to a reduced life expectancy, give them a high likelihood of developing AIDS and put them at risk of transmitting the virus to others.
In the numerous sessions with the adolescents, we started noticing trends in their responses as to why they didn’t take their medication. Some of the emerging themes were lack of a support system, internalized stigma, anger and pill fatigue, to name but a few. During one-on-one therapy with the adolescents, they expressed that they felt alone and that no one truly understood the challenges that they faced. It was decided that it would be a good idea to bring them together as a group. It was felt that they would be able to create a support network where they would not feel alone and could draw strength from each other that would help them navigate through life’s challenges.
In July of 2016 we started the support group. The purpose of the group was to provide support and create a safe environment for the adolescents to express their feelings. We wanted to instil a belief in these young people that, although HIV is life-changing in some respects, it does not need to be life-limiting. Their common attributes also gave the adolescents a sense of belonging.
When we started the group, our vision was to enhance the lives of the adolescents in every way. We wanted to make sure that we did our best to help them thrive socially, academically and psychologically, as well as improve their health. Each child has an individual plan which helps us identify the areas in which they need more attention and support. We also have motivating programs that challenge and stimulate the children to reach for new heights. The results have been absolutely amazing: we have been keeping track of the viral loads of the children over the years and we are in awe of the changes that we have observed. Out of the group of 31 adolescents, 22 have suppressed viral loads, 13 of whom have undetectable levels. These adolescents, with the help of the support group, can hope to live long lives, avoid developing AIDS and avoid transmitting HIV to their partners and future children.
Working with this group does not come without its challenges. In the years that the group has been running, the main challenge faced is pill fatigue. Most adolescents in the group go through stages where they get tired of taking their medication. They know the risks involved with not taking their medication properly, but they just get tired. In one of the group sessions, one adolescent asked if it would be such a bad thing if ‘[they] took a break from [their] pills, just one year, saying that it’s not fair that [they] have to take medication from the day [they] are born until the day [they] die’. Pill fatigue remains our biggest challenge and we continue to try to find innovative ways to deal with the problem.
The adolescents are in a stage of identity versus role confusion, they are conflicted with dozens of values and ideas of who they should be and what they should think. Having to navigate this stage of life while being HIV positive is quite daunting for them, and it results in psychological and emotional distress. Some of them have started dating and they are scared to disclose to their partners, or even to their friends, their HIV status because they fear rejection and discrimination. One of them had to change schools because of the discrimination she faced after disclosing her diagnosis to her friends. Other challenges include internalized stigma, discrimination, anxiety, depression, grief, and anger. The road to sound mental and physical health is a lifelong one but we are walking it with them, every step of the way.
When we first started the group, the biggest challenge we had was that of finances. We wanted to ensure that we served the adolescents breakfast and lunch at every session. Some of the adolescents would travel very long distances, starting very early in the morning, to get to the hospital for the sessions. Most of them also face food insecurity at home. Fundraising for the meals was difficult and we often used our own money to meet the needs of the group.
We had a major breakthrough when a doctor from the UK, who was working at our hospital at the time, came across our group work proposal, she shared it with her friends and family in the UK and the support we have received since has been overwhelming. We have managed to do more than we could have ever imagined. We have managed to buy school uniforms for those that come from poor households. We are also able to assist some adolescents with travel costs when they come to group sessions and others that are in urgent need of food or school registration fees. We are still hoping to expand our project and reach more children and adolescents living with HIV, but that is not currently possible due to financial and human resource constraints.
When we started this group, we wanted to make a difference to the lives of adolescents living with HIV. Little did we know how much they would change our lives. Watching them grow and evolve has truly been the greatest privilege of all. The lifelong connections we have made with colleagues and friends from the UK have also been such a blessing. Our support group is now a part of a global community, and we are eternally grateful.
If you would like to get in contact with Phindile, to find out more about the project, to offer financial support, to help design and make a website or to provide legal advice, please email her at email@example.com