"My daughter's adherence support club has benefitted me just as much as it has helped her," says Sebenzile Vilakazi*
Walk into the adolescent support club at Pinetown Clinic on a Saturday and you might be surprised at the number of adults you see. While we know that parents and grandparents have a role to play in their children's adherence to antiretroviral treatment (ART), what we sometimes don't realise is just how much the older generation stands to gain from the clubs themselves.
That's because groups like this one are now running programmes to equip parents and guardians, as well as their children. Sebenzile lists parenting skills, life-skills coaching and emotional support as by-products of the adherence support club she has attended with her daughter for the past three years.
A sickly baby, Sebenzile's daughter was finally diagnosed as HIV-positive at the age of two, and was promptly initiated on treatment. She continued to take her ART syrup, moving on to a tablet when she was old enough.
"When she began to question why she was taking medication − around the age of seven − I reassured her that it was to treat the ulcers on her legs," says Sebenzile.
Disclosing her daughter's status didn't come easily to Sebenzile. She found it difficult to engage in conversation, fearing her child's reaction and volatile emotions. Already rebellious and disdainful of authority, an HIV-positive disclosure could push her daughter even further down the wrong path − or so Sebenzile thought.
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Sebenzile points to some photographs of the adherence support club in the dedicated Adolescent- and Youth-friendly Services consultation room at Pinetown Clinic.
However, in 2013 when Sebenzile's daughter no longer wanted to go to school because the ulcers on her legs caused other children to discriminate against her, Sebenzile went to Pinetown Clinic and asked the nurse to assist her with the disclosure process. She also wanted to identify a support club.
The adherence support club she now attends with her daughter is run by Sister Gwavuma, the Adolescent- and Youth-friendly Services (AYFS) Champion at the Pinetown Clinic. The club allows adolescent clients to spend some time chatting and having fun together before they have their regular check-up and collect their medication.
At the same time, it allows the adults who attend to learn together with their children. Bolstered by the life skills and encouragement she received at the adherence support club, Sebenzile went on to start a business making and selling shoes, allowing her to support her family. She is now teaching the other parents about how to run small businesses.
The group of parents and guardians who attend the adherence support club are more than just acquaintances who enjoy each other's company once a month – they keep in touch regularly via a WhatsApp group which allows them to ask each other questions, remind one another of appointment dates, and provide the motivation to keep coming back.
And coming back is certainly having the desired effect – Sebenzile's daughter is now taking charge of her own treatment, ensuring that she is virally suppressed, taking her medication on time, and regularly reminding her mother of important dates for blood tests and follow-up visits.
"I will be very heartsore if the group closes," says Sebenzile.
But happily for her, Sister Gwavuma's dedication to the longevity of the adherence club means that this group and the others like it aren't likely to close any time soon.
Enquire at your local clinic about support groups and adherence clubs for adults and children on chronic medication, not just ART.
* Not her real name