Storylines
Focusing our attention on what comes to matter for adherence we co-creatively synthesised four storylines: ‘living with a (un)exposed HIV secret’, ‘multisensory experience of adherence’, ‘things that matter in adherence’, and ‘environments as friends and foes’.
Storyline 1: Living with a (un)exposed HIV secret.
Describing a childhood and young adulthood littered with secrecy and the heavy weight of hiding their status that had a high risk of accidental disclosure - in clinic visits, reasons for the death of parents, carrying daily medication, in relationships, and the side effects of the medication – we expressed this narratively and through photographic portraits, using the colourful material to hide their identities but expose a sensory feature on their faces (Fig. 2).
Mia shared her experience of being a 12-year-old, who had lost her father to AIDS and Tuberculosis (TB) and was at the hospital for herself. She was approached by a pastor to provide counsel. Feeling brave, she shared that she was scared to be there and that she was HIV positive. She remembers, “he told me I am here because I cannot control myself. Like I was sleeping around. He judged me, and he was a pastor!”. This silenced her and caused her to feel ashamed of her status, with very little trust in others. This is a feeling she still experiences as a 22-year-old when visiting the clinic setting. Now a mother herself, the burden of secrecy remained when she was breastfeeding and had to switch to formula while administering antiretrovirals to her baby. Afraid of accidental disclosure she had to isolate when feeding.
She recalls, “I went into the room to feed him and had to hide his clinic card away from them when they (her in laws and other family) visited”.
Tony lost her father to AIDS and TB and lives with her mother and brother. At 21 years old she cannot trust her brother to keep her secret and therefore hides her pills and removes them from its packaging before returning home from the clinic. Even though the clinic receptionist is aware of her reasons for visits to the clinic, Tony says, “I tell them I am there because of TB because my neighbour who works at the clinic will tell people I have HIV”.
Nora and Thandi are aware of the stigma surrounding being HIV positive, but out of choice and only Nora out of normalisation, they choose to be more open about their status. Nora’s mom shared her status with her schoolteacher when she was very young. In her community, she has strong ties with peers and feels supported by her family and friends.
“My mommy went to the school and told the teacher, and the teacher told the children. My friends all know…It doesn’t matter to them because they knew long ago.” (Nora)
Dating and relationships were shared as the most difficult and challenging experiences of disclosure and the best sources of support when in a healthy relationship. Cassidy shared her risky sexual practices and her non-disclosure of her status. She believed that “if they get HIV, it’s their own fault, I told them I didn’t want to have sex and what if I am HIV positive. Then they force me, or they keep going without a condom, so it’s not my fault”.
Some decided to not engage in sex at all as they were too fearful to disclose their status. Having a space to be vulnerable and live without secrecy was a desire all expressed. There was an overwhelming sense of wanting to be completely open with others and live without the fear of judgement.
Storyline 2: The multisensory experience of adherence
When first asked about adherence most said they take their medication because ‘it is routine’ (Mia), ‘Ek het dit altyd geneem’ (‘I have always taken it’) (Tony), ‘I don’t know I am just used to it now’ (Nora).
However, when we moved deeper into the stories, expressions changed, silences were loud, and in some instances, tears started flowing. When looking at pills in their hand’s responses were varied, with each young women feeling differently; some questioning themselves, or thankful, or in need, or tired or angry, saying:
“Cure me” (Mia)
“Why me?” (Nora)
“Dankie dat jy my gesond maak” (Thank you for healing me) (Tony)
“When I see you, I feel tired. You make me so sleepy” (Thandi)
Mia observed that she did not like the colour of the tablet, saying, “I just don’t like the colour I wish it was white” (Fig. 3). Through reflective art we uncovered that a white pill would make the tablet seem almost invisible, “It would be like I am taking a normal pain pill, like Panado”, Mia said.
Cassidy showed us around her room and where she kept her medication. She took down the gift bag containing her study art material and reached for her medication bottle inside (Fig. 4).
In the excerpt from our conversation, her anger is obvious:
Lynn: Can you look at the bottle in your hand? We are going to talk to it now.
Cassidy: Ok (she starts squeezing the bottle in her hand and tears start rolling down)
Lynn: What is the medication doing to you right now? Tell it what you want to say.
Cassidy: I hate you (the pill)! You make me so angry. (Throws the bottle across the room)
Anger and frustration due to ART and daily regimen of adherence, were emotions that all young women expressed. Thandi shared her story of her vision loss and how it made her angry, compromising her learning ability, which consequently caused her to drop out of school.
“I was doing my matric, 2020, and there was a problem with my eyes…sometimes they were changing like white or blue…so they said there was nothing they can do, I was damaged when I was young” (Thandi)
Manda agreed and shared how teachers bullied her because she struggled with the pace of school due to being ill and having to go to the clinic, causing her to drop out as well: ‘I feel stressed, and I feel bad in my heart’. Cassidy in her reflection of ART shared, “Dit maak my hart seer” (It makes my heart hurt).
Taking ART was seeing as more than just taking a pill but an embodied experience that was determined by choice, memories, and reflective emotions.
Storyline 3: The matter of adherence
Throughout the study, we photographed and collected material items that we felt held significance and that was associated with adherence. When we started our inquiry into the material the following items were presented: blood vials, needles, condoms, medical gloves, surgical masks, hand sanitiser, urine sample collector, sexually transmitted diseases tests, ART pills and containers (Fig. 5).
As we started becoming more aware of the agency of matter in our stories, we shared photos and videos that included the clinic benches, running water, our own hands, people gathering at a food kitchen in the road, the empty vials on the nurse’s desk, food, burglar bars on bedroom windows, traditional medicines, and one another.
We asked young women, ‘do the things around you have any role to play in your adherence journey?’ They responded:
“Yes, it does matter. I need my watch. And as I told you I take my medication when the moon is out” (Mia).
“You see the people and the community tells you where you can and can’t go. So, when I look outside then it makes me feel something” (Tony)
“No, I don’t think so, everything we do is just normal. Even if I forget my parents will remind me to go to the cupboard” (Nora)
“Ja, it does, because without food I can’t take this medication you see. I need stuff to survive” (Thandi)
“It depends because you can be happy with anything you got. You just make the best of things and try to be better every day. Stuff isn’t always important it’s the people who you have to lift you up” (Cassidy).
The young women felt a connection towards religious institutions, spiritual beliefs, rituals and traditional medicines or healing artifacts. Mia believed in ‘praying daily and having faith’ and regularly attended church services like Tony. Thandi and Manda believed in the power of traditional medicines and shared that some believed in ‘idliso’ (spiritual pollution or poison), or witchcraft could result in HIV. Although adherent to ART, both Thandi and Manda continued to take traditional medications to ‘clean out your system’. Manda shared that her mother is a ‘amaxhwele’ (traditional healer and herbalist) and that she herself is considered as amagqirha (having a divine spirit), showing her traditional cotton bracelets and anklets (Fig. 6). “Yes, I got this bracelet on my ankles and feet from my mom, she is a traditional healer. It gives me strength” (Manda)
In collectively piecing together, the story on what mattered for adherence (Fig. 7), we concluded that our story was the result of multiple experiences, feelings, places, spaces, things, and that in every engagement with others, both human and non-human, and our stories evolved.
Storyline 4: Engaging spaces and places
Activating one sense at a time we were able to consider how the material environment engaged our senses in spaces and places such as their houses, the clinic, in the community and in nature.
In rooms, in homes
Nora laid on her bed, we laid on the floor, and we engaged one sense at a time. When listening to the sounds in her room, she heard the toilet flushing in the apartment above, and water flowing down the pipes, through her room. She heard the people who live behind her maisonette in the yard, talking and shouting. Listening to the water running down the pipes in the flat and seeing the lead going through her window to the outside, triggered Nora to blame herself for being HIV positive and causing her parents to find multiple sources of income. She felt angry looking at the plug and lead, but she did not understand why, but through reflection she was able to express it. The self-blame demotivated her and sometimes made her not want to take her medication, to punish herself for causing economic burden.
“At night I hear them talking… there are five hokkies (Wendy houses) at the back and my window is open so the lead can go through for them to have electricity. When asked how it made her feel, she replied, “Frustrated, my daddy runs the lead for them so we can have extra money” (Fig. 8).
Even though she felt emotionally supported by her family, she explained that additional medical bills in an unstable economic living environment felt like a burden that she carried. And hearing the toilet and people outside was a reminder of this. Cassidy shared similar sentiments when flipping her room light on with a peg. And Mia reflected that she room had very little natural light because just 30cm away from her window, a new house in the yard had been built and now ‘my room is dark, I can’t even open the window’.
The young women perceived their economic circumstance and the associated challenges as being exacerbated by the HIV status and therefore the act of adherence was also a moment of self-blame and reflection on their living conditions.
At the clinic
The clinic space prompted different reactions from the young women (Fig. 9). The clinic felt like a place where they did not have to hide their status and the nurses knew them. While in the nurses’ room and allowing themselves to sense their surroundings Thandi said, “It is good to come here, they know us here. We can just be free”. For them, the clinic provided a sense of belonging and safety. However, Thandi later shared how ‘the nurses make you feel like you going to die if you say you missed your medication. Sometimes they can judge us.
Mia’s clinic embodied experience led to her exclaiming, ‘die kliniek ruik soos verkoue’ (It’s smells like a cold, like illness)…but there isn’t anything that makes me upset in the room because I know all the stuff that is in here is for people who gets treatment for HIV, so all of this stuff in the room makes me very…I can’t say happy, but …what’s the word now…relieved…it’s as if my mind like…ek voel kalm (I feel calm) (Fig. 10).
Navigating the clinic system as both of place of safety and a place of unintended disclosure, judgement, or reminder of HIV status and lifelong meaning was a struggle young women related to one another.
In the community
The social and community spaces were described as violent, difficult to navigate as a young woman, and minimal opportunities for authentic engagement with others and organisations. Thandi proudly shared that she was a peer HIV educator in a previous project but once it concluded she did not have further opportunities for community engagement. Afraid of the ‘tsotsi’s that steal your medication and smoke it if they see you coming from the clinic’, she and others did not feel safe in their own neighbourhoods. Without freedom of movement, the community space can feel restrictive. Mia shared a traumatic experience of her journey home from the clinic with her infant child:
“I got off the taxi and walked across the field. In my road, I heard gunshots and I saw them. I grabbed my baby and the pram fell over. I just left it there…I ran home with him. Praying the bullets wouldn’t touch him”.
Cassidy lives close to the clinic she accesses, but as we stood outside her house, she ushered us into the car and said, “It is not safe here, I walk around because I don’t have a choice”. While high levels of violence are normalised in the community, and sometimes in their own homes, young women spoke about internalising these behaviours and engaging in violence themselves when needed. Outside spaces in the community were reflected as a desire as something to be in, rather than a place that was frequented often. This was due to the limitations of walking freely in neighbourhoods, the lack of safe open spaces, and very little natural spaces for recreation. When we engaged with what was outside, we saw litter, clustered informal and formal housing, little greenery, hard gravel pavements, and gang members; but we also saw people dancing, laughing, playing, sharing food, and connecting in challenging spaces (Fig. 11).
Co-creative artworks
The storylines and findings of this study were synthesised co-creatively into a one research documentary and five other collaborative artworks. The research documentary, ‘More than a pill’, is 45 minutes long and is available freely to the public on YouTube (Hendricks et al., 2022). The film uses images, video, text, and audio collated from the data submitted by the co-research team. We exhibited our artistic co-creations at the documentary screening. The exhibition consisted of five interactive exhibits: 1. Embodied frames (Fig. 12) – A collaborative collage of the 1000 pictures taken during the study in colour and in black and white, pasted on 1.5-meter-tall plinths on stands, decorated with a mannequin head, a wig, and the masks used during filming. Each young women created one during our group artwork at the IZIKO Museum in Cape Town. 2. Adherence (Un)Exposed (Fig. 13) – Using colourful cloth we masked our identities but showcased a sensory organ to tell the story we are afraid to share but always internalising the external narratives. 3. In my body, with my body (Fig. 14) – Using body mapping we visualised the sensory experience of not only living with HIV but also how the body is used to action adherence behaviours. The display was 2m by 1.5m big and was hung up so that viewers could stand in front of it. 4. Adherence things (Fig. 15) – Using the storyboard from a related systematic review about adherence (Hendricks et al., 2022) we placed the material objects we found onto it. Visitors were able to touch and feel the objects. Showing how our story and the literature complimented one another and provided added depth. 5. I am her (Fig. 16) – In a narrative first-person story that tells the story of all the young women as one, the pages are moved out, and visitors can use markers and comment on the pages.
There were 126 people in attendance at the exhibition, and they were representative of the young women’s families, peers, community members, clinic staff, doctors, policy makers, students, academics, researchers, visual artists, and museum curators. The film screening and exhibition opened a platform for all stakeholders to engage in conversation about how they could support YWLPHIV to be adherent to ART and thrive as young people.