‘More than a pill’: A qualitative co-exploration of the things that matter in young women's stories of adherence to antiretroviral treatment in South Africa

‘More than a pill’: A qualitative co-exploration of the things that matter in young women's stories of adherence to antiretroviral treatment in South Africa | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article ‘More than a pill’: A qualitative co-exploration of the things that matter in young women's stories of adherence to antiretroviral treatment in South Africa Lynn Hendricks, Taryn Young, Robin Julies, Rizqah Dollie, Reshaan Dollie, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4493670/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 12 Jun, 2025 Read the published version in Research Involvement and Engagement → Version 1 posted 4 You are reading this latest preprint version Abstract Background: Young women living with perinatal infections of the Human Immunodeficiency Virus (YWLPHIV) in low- and middle-income countries are more likely to be challenged by social and health inequities, which can make adherence to life-long treatment difficult. We aimed to learn more about how YWLPHIV in Cape Town negotiated their adherence to antiretroviral treatment (ART) within their material environments. Methods: We adopted a multisensory arts-based community participatory approach and used visual and digital mediums for data-collection and analytical purposes. We developed an Adherence Assemblage model to guide our study. The co-research team consisted of three academics, seven YWLPHIV (although they approved the study they could not be named as authors to protect their identities), one counsellor and two visual ethnographers. Results: We co-creatively synthesised our findings into one research documentary and five co-creative artworks. We synthesised four storylines: ‘living with a (un)exposed HIV secret’, ‘multisensory experience of adherence’, ‘things that matter in adherence’, and ‘engaging spaces and places’. Things such as the pill itself were perceived as triggers for associated memories and evoked emotional responses, impacting the adherence behaviours of YWLPHIV. At times, non-adherence was used as an act of control, with young women claiming power by rejecting the pills. Besides the more obvious lines of argument on power dynamics, the findings suggest that materiality influences adherence too. However, it is seldom used as an analytical concept to investigate challenges related to ART. Conclusions: In conclusion, understanding the material environment's role in adherence is crucial for developing more effective support systems for YWLPHIV. Further research that prioritises the specific needs of YWLPHIV emotional, cognitive, and psychosocial development, while paying attention to the material environment is needed. Adherence perinatal HIV new materialism young women participatory research patient and public involvement Figures Figure 1 Figure 2 Figure 3 Figure 4 Figure 5 Figure 6 Figure 7 Figure 8 Figure 9 Figure 10 Figure 11 Figure 12 Plain English Summary This study explores the factors affecting adherence to antiretroviral treatment (ART) among young women living with perinatal HIV (YWLPHIV) in Cape Town, South Africa. The study used a multisensory arts-based community participatory approach, involving visual and digital mediums, to understand how these women navigate their treatment within their material environments. The research team consisted of academics, young women living with HIV, a counsellor, and visual ethnographers, and they developed the Adherence Assemblage model to guide the study. The study revealed four main storylines: the secrecy surrounding HIV status, the multisensory experiences of adherence, the significance of material objects in adherence, and the impact of environments. Young women often used non-adherence to exert control over their lives, and material factors, such as the physical characteristics of the pills and the environments in which they lived, played a significant role in their adherence behaviours. The study highlighted the complex interplay between the physical and social environments and their impact on adherence. It emphasised the need for more research focusing on the material aspects of adherence and the specific needs of YWLPHIV. The findings were synthesised into a research documentary and co-creative artworks, providing a platform for stakeholders to discuss how to support these young women better. The study concluded that understanding the material environment's role in adherence is crucial for developing more effective support systems for YWLPHIV. It called for a more holistic approach that includes the perspectives of young women and considers their emotional, cognitive, and psychosocial development. Background Human immunodeficiency virus (HIV) is a global public health challenge with approximately 38.4 million people currently living with HIV globally (Frescura et al., 2022 ). Perinatal infections of HIV are passed on through vertical transmission from mother to child while pregnant, through childbirth, or breastfeeding. Before the advent of Antiretroviral Treatment (ART), approximately 50% of perinatally infected children were expected to die before the age of 2 years. In December 2020, UNAIDS launched a new set of global targets, called 95-95-95, to address HIV, calling for 95% of all people living with HIV to know their status, 95% of all people living with HIV to receive ART and 95% of people on ART to be virally suppressed by 2025 (Frescura et al., 2022 ). South Africa (SA) has been trying to eliminate mother-to-child transmission (Peltzer et al., 2018 ) but still has one of the highest prevalences of pregnant women living with HIV (Simbayi, Zuma and Zungu, 2019 ). The new ART guidelines recommend that all pregnant and breastfeeding women living with HIV should be initiated on lifelong ART, ideally on the same day that pregnancy is confirmed (Nel et al., 2023 ). However, there remains a large proportion of children who acquire HIV perinatally and a large cohort who are now reaching adolescence (Slogrove et al., 2018 ). The life stage of adolescence into young adulthood (16–24 years) is one characterized by stress and transition, and this makes young women living with perinatal infections of HIV (YWLPHIV) especially vulnerable. For YWLPHIV, the multiple burdens of this life stage may include economic vulnerabilities, psychosocial challenges and the threat of discrimination and violence, which can be internalized as the rejection of the self (Brown, 2017 ). Young women living in countries like South Africa are considered especially vulnerable due to the added burdens of gender and economic inequality and gender-based violence (Simbayi, Zuma and Zungu, 2019 ; AVERT, 2021 ). YWLPHIV experienced higher levels of suicide ideation, and mental health concerns, and reported different clinical and psychological experiences of using and accessing treatment for HIV as compared to young women who were not vertically infected (Cluver et al., 2022 ). ART has transformed living with HIV into a chronic disease rather than a progressively fatal one. However, adherence to ART needs to be near-perfect to keep viral loads low and undetectable. This can become burdensome when integrating clinic visits, pill collections, and negotiating the stigma associated with living with HIV. It becomes necessary and important for programmes and interventions tailored specifically to their needs and to consider young women's intersectionality and emotional, cognitive, and psychosocial development. Despite all efforts and the number of studies continuing to be produced on ART adherence (Eshun-Wilson et al., 2019 ; Rohwer et al., 2021 ) the challenges of treatment adherence remain. Adherence to ART for YWLPHIV is strongly related to a range of social, cultural, political, economic, and environmental factors (Hendricks, Eshun-Wilson and Rohwer, 2021 ). Often overlooked in adherence research is the role of the material environment. While the direct health impacts of natural environmental changes like climate change, including the psychological and physiological effects, and the promotion of health through trees, plants, and landscaping in built environments are relatively well understood, (Weinstein, Przybylski and Ryan, 2009 ; Kuo, 2015 ), the influence of things or materials on health behaviours is harder to identify. In our prior exploration of the available theoretical models to understand adherence to ART we identified a gap in the role of the material environment on adherence (Hendricks et al., 2022 ) and proposed the Adherence Assemblage model which is built on the dynamic and fluid integration of the biological, psychological, social, health system, political, natural environment, and material dimensions to make sense of adherence to ART. In this study we aim to co-explore the things, the non-human stuff that matter in young women's stories of adherence to antiretroviral treatment in South Africa. Methods We adopted a co-creative, art-based, participatory approach to explore the aim of this qualitative study. We worked with the concept of a ‘third sphere’ (Hendricks, Dierckx, et al., 2021), a hybrid physical and virtual space that operated under the principle of equal intelligence of all actors and embraced the idea of differing. We defined Patient and Public Involvement (PPI) as relational allyship within a co-research team. This study was reported using the GRIPP2 Checklist (Staniszewska et al., 2011 ) (see Additional file 1). Setting and Co-research team The study was conducted in three communities in Cape Town, South Africa. Two communities are considered peri-urban areas located 15 km east of the city centre with a combined population of 76,000 people, with most residents living on less than 167 USD per month. The communities are primarily Afrikaans and English-speaking. The other is an informal housing settlement on the eastern outskirts of Cape Town and has an estimated population of 21,000 people who speak mainly isiXhosa and Afrikaans. Participants were recruited through two community clinics and invited in as co-researchers. Participants consented verbally and in writing, to the study and for their information and pictures to be used for dissemination, in their preferred language (either Afrikaans, isiXhosa, or English). Six (AH, RP, LDB, AM, TR, TM) of seven YWLPHIV stayed engaged as part of the research team for eight months and one (Chloe) dropped out of the study after 4 weeks due to other personal priorities. We shared decision-making on the scope, direction, and dissemination content of the study. ‘We’ in this manuscript, refers to the combined co-research team. Table 1 Participant profiles of YWLPHIV (pseudo names) Young women Age Parents/ Caregivers and currently living with School/ Work Adherence Mia 22 Mother, sisters, brothers, and 2-year-old son. Father deceased due to TB/AIDS. Completed Grade 12. Unemployed for some time but am currently employed as an intern. Adherent consistently. Cassidy 18 Grandmother, HIV-negative twin sister, aunt, and nephews. Father and mother deceased due to AIDS. Grade 11 (in school) Not consistently adherent. Grandmother tries to be supportive through reminders Tony 21 Mother and brother. Father deceased due to TB/AIDS. Completed Grade 12. Searching for work. Adherent consistently. Nora 17 Mother, father, and brother. Grade 11 (in school) Adherent consistently. Parents are supportive and provide reminders Thandi 21 Father, stepmother, and stepsisters. Mother deceased due to TB/AIDS. Dropped out of school due to bullying by teachers in Grade 12. Searching for work. Not consistently adherent. Mixes medications with traditional medicine. Manda 20 Mother and sisters. Father deceased due to TB/AIDS. Dropped out of school due to bullying by teachers in Grade 10. Does hairdressing for income and seasonal farmworkers. Not consistently adherent. Mixes medications with traditional medicine. Chloe 17 Mother and father. Grade 10 (in school) Non-adherent Data Collection The six young women were provided with art materials, a journal, a cell phone, a sim card, a memory card, and monthly airtime, as a resource pack upon joining the co-research team. Together, we set up the phones with sim cards, and a Gmail account (to store data), and downloaded WhatsApp as a means of communication, for which training was provided. Due to community violence, we did not feel safe doing walking interviews or using the public transport system alone and worked around this by meeting together outside of the community, commuting to interviews using Uber, and limiting the individual use of audio-visual equipment publicly. We adopted other strategies like driving through the community and video recording, doing interviews inside the boundaries of a building, and capturing film and pictures through house windows, and in the early morning when communities were not as busy. Additionally, we developed a checking system for community violence on the mornings of our engagements to assess the level of safety to leave home, as three of the young women had weekly experiences of gang violence and shooting on their doorsteps. We were flexible in our use of multi-modal data collection and analytic techniques, as determined by the young women’s choice, time and context. These included methods such as artistic co-creations (Archibald, Caine and Scott, 2014 ), body mapping (Vasquez, 2004 ), collaborative filmmaking (Baumann et al., 2019 ), collecting material objects of meaning (Edwards and I’anson, 2020 ), community mapping (Amsden and Vanwynsberghe, 2005 ), individual and group conversations including walking and driving interviews (Evans and Jones, 2011 ), journalling (Tuckett and Stewart, 2014 ), multisensory home and clinic interviews (Maapalo and Østern, 2018 ), a research camp (Dierckx et al., 2021 ), and storytelling (Archibald, 2022 ). Data management and analysis Given the multisensory nature of our data, special care was taken to store and protect the data. Data analysis was an iterative process with the co-research team. At first, we would reflect and journal the main insights individually, and then in joint meetings, we shared them. Together, we identified the main storylines and then created collaborative artworks we called, synthesis creations, in response. We operationalised this as a type of creative work that combines and integrates ideas or elements from multiple sources. It typically involves a process of synthesis, in which different pieces of information or artistic materials are brought together and recombined to form a new whole (Sharp, Pollock and Paddison, 2016 ; Gerber et al., 2022 ; Hannes, 2023 ). Synthesis creative outputs can take many forms, including visual art, music, literature, film, or performance, among others. Interpretations are then made during and after the creation, through reflection. Using this modus of analysis supported our reflexivity and trustworthiness in this study (Morrow, 2005 ), as we constantly checked in with one another and discussed all interpretations in depth. Results 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. Discussion Through the co-creative synthesis of a research documentary and five other collaborative artworks, this study reported on four storylines: ‘living with an (un)exposed HIV secret’, the ‘multisensory experience of adherence’, ‘the matter of adherence’, and ‘engaging spaces and places’. Drawing on the findings of multiple types of qualitative data, which captured the perspectives of YWLPHIV about the things that matter for adherence to ART, we found that the material environments had agency in the treatment adherence decision making and behaviours of YWLPHIV. One of the hardest challenges young women reported was maintaining the secrecy of their positive HIV status in lieu of a public health narrative which urges disclosure, in the context of persistent community stigma. This led to feelings of anxiety and shame, and which were internalised and prompted negative feelings towards treatment adherence. Reluctance to adhere for psychological reasons may not be for a lack of agency but rather bounded agency (Evans, 2007 ), which situates young women in a space open for action but limited by the social climate. Young women may then adopt secrecy as a strategy of resistance to norms of HIV disclosure as encouraged by the health system, to assimilate into the social landscapes (Mackworth-Young, Bond and Wringe, 2020 ). Disclosure research has often emphasised the disclosure of their positive HIV status (Nichols, Paintsil and Steinmetz, 2017 ). Young women shared multiple traumatic experiences that were said to be too painful to share with their mothers, because of their perinatal infections. In the case of YWLPHIV it was more layered, leading to anger, increasing self-stigma, and tensions within families and in their maternal relationships or feelings towards their deceased parents. As in other literature (Madiba and Mokgatle, 2017; Navarra et al., 2020), disclosure is associated with fear of judgment. Secret keeping is complex and the associated psychosomatic experience of maintaining difficult secrets may present through lowered immune systems, pain, and depressive symptoms (Zerbe, 2019 ), which can compromise the virality of ART. More culturally appropriate understandings of disclosure and supporting of young women in their own decision making is needed. The young women in this study experience/d multiple traumas including loss of parents, gender-based violence, the turbulent period of young adulthood, generalised community violence, and social, economic and health inequities. When exploring the multisensory experience of adherence, young women experienced the resurfacing of repressed emotions and traumas, which can be triggered by smell, sight, taste, hearing, or touch (Steimer, 2022 ). The powerful exercise allowed us to journey back into their experiences of loss, fears, joys, and successes related to adherence; to remain in the present; and the journey forward (Harris and Guillemin, 2011 ; Pink, 2012 ). Rethinking adherence as a behaviour affected by matter clarifies the distinction between the physical and social worlds (Barad, 2003 , 2007 ) and the possibility to explore how things and other than human living organisms on the planet can make things happen or affect (Fox and Alldred, 2016 ). ‘Affect’ – defined by Deleuze (1988: 127–128) as a ‘capacity to affect and be affected’, is a feature of all matter: human and non-human, animate and inanimate. Findings of this study showcased matter - such as medical equipment, 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 – are affective on adherence to ART. Not for lack of will power or motivation (Brittain et al., 2019 ), but in an act of control and power, young women at times resisted the pills. The pill held meaning and the young women perceived it as controllable – something of importance that they had the agency to control. It is important that this is acknowledged and brought to awareness so that it does not become a barrier to adherence. This study also showcased how the materials in a spaces and places such as the home, the community, and the clinic (including the structural build) need further exploration in the study of adherence. The constitution of the physical elements their places of living had an intra-active affect on young women's health care decision making. The findings of this study have brought to awareness the agency of the material environment for adherence to ART for YWLPHIV. In doing so, it has provided new insights to move to a sharing of the responsibility of adherence to ART for young women with their family members, partners, peers, community members, social and health care institutions, governments, educational institutions, spiritual organisations, and funding bodies to support enabling environments. Further research, using deep inquiry and multimodal methods of data collection and creative synthesis is needed to explore how environments can be (dis)enabling for young women and what can be done to support enabling environments, is needed. Although our study findings were based on the lived experiences of 6 YWLPHIV, we situate the findings in terms of data adequacy rather than sample size (Konstantina Vasileiou et al., 2018 ). Data adequacy is described by Erickson ( Erikson, 1985) as evidentiary adequacy, which includes adequate amounts of evidence, a variety in kinds of evidence (Fugard and Potts, 2015 ), and sufficient interpretation, which may refer to this as thick description (Barroso and Sandelowski, 2016 ), which we have provided in the reporting of this study. The strengths of this study lie in the methodological application of multimodal approaches for research design, data collection, data analysis and dissemination, which followed a para-cyclical process with no defined linear process. The process was open and flexible and could be contextualised for each individual co-researcher. Adopting the approach of deep inquiry and configurations of matter with multimodal research techniques allowed us a window into the repressed feelings and emotions of young women regarding adherence. As in the cases of Nora and Cassidy, who struggled with the verbalisation of their stories and even though they were able to use their senses to navigate their space, they could not release it until we introduced arts-based outlets such as drawing and dancing in which their experiences materialized themselves. The routine of taking medication for many years and not exploring the associated feeling became clear as we wrestled with describing the experience in words. This study challenged the often-top-down approach taken to inform young people about the relevance and importance of ART that might not always consider the challenges faced by young people, especially young women. Interpreting PPI as participants being allies and co-researchers fostered a sense of ownership and empowerment among the participants, as they were actively engaged in the research process. This engagement helped to build trust and rapport between the researchers and the participants, creating a collaborative and supportive environment. The co-research approach also allowed for richer, more authentic data collection, as participants were more willing to share their experiences and insights openly. Additionally, involving participants as co-researchers helped to ensure that the study was grounded in the lived realities and needs of the community, thereby enhancing the relevance and impact of the findings​​. Despite the numerous benefits, there were also some challenges associated with interpreting PPI as participants being allies and co-researchers. One of the main drawbacks was the approach required significant time and resources to train and support participants in their roles as co-researchers. Ensuring that all participants were equally engaged and contributed meaningfully to the research process was also challenging, especially given the varying levels of education and experience among the participants. Furthermore, the emotional burden on participants who relived traumatic experiences during the research process posed ethical concerns and required careful management by the research team. The participants had a history of stigma and trauma related to rejection, which made ending the research process particularly challenging. The conclusion of the study risked re-traumatizing participants or causing feelings of abandonment. Ensuring a sensitive and supportive transition at the end of the study was essential, requiring additional care and resources to mitigate the potential negative emotional impact on the participants​​. Impact of PPI Using a multisensory arts-based community participatory approach engaged participants in the co-creation of visual and digital mediums, allowing them to express their experiences and perspectives on adherence to ART. The research team, comprising young women living with HIV, academics, a counsellor, and visual ethnographers, collaboratively developed the Adherence Assemblage model to guide the study. Data collection methods were diverse and included artistic co-creations, body mapping, collaborative filmmaking, collecting material objects of meaning, community mapping, individual and group conversations, journalling, and multisensory home and clinic interviews. These methods provided a rich, narrative-driven exploration of the participants' lived experiences, ensuring a comprehensive understanding of the impact of PPI. To ensure the robustness of the qualitative methods used in this study we employed a multimodal approach, relied heavily on PPI, emphasised data adequacy over sample size, and creative synthesis. Multimodalities incorporate a variety of data collection techniques to ensure a comprehensive understanding of participants' experiences. This included visual arts, digital media, and physical artefacts, which together provided a multi-faceted view of the impact of ART adherence. The research methodology was highly participatory and reflexive, involving continuous reflection and journalling by both researchers and participants. This iterative process ensured that the data collected was thorough and reflective of the participants' genuine experiences. The study emphasised data adequacy over sample size, focusing on the depth and variety of evidence collected, which aligns with qualitative research principles that prioritise rich, detailed data over numerical generalisability. Finally, the use of creative synthesis, where different pieces of information and artistic materials were combined to form new wholes, allowed for deep interpretation, and understanding of the data. This method supported the reflexivity and trustworthiness of the study findings, ensuring a robust and credible exploration of the impact of PPI on young women's adherence to ART. Conclusion This study is one of the first to go beyond barriers and facilitators to adherence for people living with HIV to explore the role of the material environment in depth. Young women living in challenging communities in Cape Town, South Africa, struggled with adherence due to environmental and community-level factors such as violence, economic inequities, lack of social support, inadequate health systems, and disadvantageous structural community layouts. Risking their lives to travel to clinics in unsafe communities, silencing their voices in their households, and being at high risk for domestic violence and femicide in their romantic relationships demands of us to bring to light their experiences, which is in line with Sustainable Development Goals (SDG) 5 (gender equality) and ending all forms of discrimination against all women and girls in private and public spheres. Working from a multimodal perspective allowed us to venture deeper together and to open the research space for multiple stakeholders for rich engagement throughout the research process. There is a myriad of reasons to adhere or not adhere and each reason carrying varying weightings. Ultimately, understanding how these reasons come together in an assemblage, dependent on context and the moment in time, that provides new insights in how the complexity of adherence to therapy should be addressed. Young women perceived that regardless of their circumstances the final decision was theirs to make, and their motivations ‘to live’ could trump any barrier. Adopting a co-production and multimodal approach in our participatory methodology enabled deeper relationships between research team members, leading to in depth introspection and disclosure, and a safe, transparent, and socially just research environment. We implore researchers to pay more attention to the material environment of the people they study and invite more transdisciplinary and multimodal methods to understand and respond to the unique needs of YWLPHIV. Abbreviations ART: Antiretroviral Treatment HIV: Human Immunodeficiency Virus PPI: Patient and Public Involvement SA: South Africa SDG: Sustainable Development Goals TB: Tuberculosis UNAIDS: The Joint United Nations Programme on HIV/AIDS YWLPHIV: Young Women Living with Perinatal Human Immunodeficiency Syndrome Declarations Ethics approval and consent to participate. The study was approved by the Stellenbosch University Health Research Ethics Committee (S20/03/070). Co-researcher participants were provided with a Participant Information Sheet outlining the study and the use and storage of their data. Participants had to consent to taking part prior to participation in the study. Consent for publication. Participants consented to the publication of the anonymous data they provided and visual data collected during the study, prior to the data collection. The details of this were indicated on the Participant Information Sheet and Participant Consent Form. Availability of data and materials Most data generated or analysed during this study are included in this published article [and its supplementary information files]. The larger datasets used and/or analysed during the current study are available from the corresponding author on reasonable request. Competing interests The Author(s) declare(s) that there is no conflict of interest. Funding This work was supported by the Global Minds Scholarship, KU Leuven [grant number 3H180579]. The funder had no role in the design of the study and in writing the manuscript. Authors' contributions Conceptualisation: LH, KH, TY, RJ, RD, RD, [Anonymised Co-researchers: AH, RP, LDB, AM, TR, TM]. Data collection: LH, RJ, RD, RD, [Anonymised Co-researchers: AH, RP, LDB, AM, TR, TM]. Analysis: LH, RJ, RD, RD, [Anonymised Co-researchers: AH, RP, LDB, AM, TR, TM]. Writing – original draft: LH, KH, TY. Supervision: KH, TY. Funding acquisition: LH, KH, TY. All authors read and approved the final manuscript. Acknowledgments We would like to acknowledge Prof Catharina Mathei (1966-2021) who was a part of the research team that contributed to the research proposal. We are indebted to the co-research team and their families whose real names we cannot mention here to protect their identities –Mia, Cassidy, Tony, Nora, Thandi, Manda, and Chloe (pseudo names). We are especially grateful to the curators of IZIKO Museum Lynn Abrahams, Jeffery Mottie, and Jeanine van Wyk, clinic managers, doctors, nurses, and support staff who assisted us with recruitment and helped us to produce our story. Authors' information Lynn Hendricks conducts research and teaches in the Division of Health Systems and Public Health in the Department of Global Health, Faculty of Medicine and Health Sciences at Stellenbosch University and the Social, Methodological, Theoretical and Kreative research group in the Department of Social Sciences, KU Leuven. She is a practising Research Psychologist and previous Global Minds PhD fellow at KU Leuven and Stellenbosch University. Currently, she holds a fellowship with Gilead Public Health and with Microsoft Africa. Her interests are in the conduct of creative, transdisciplinary, and co-productive research within communities. Taryn Young, a distinguished Professor at Stellenbosch University, has a passion to enhance capacity to advance the conduct of and use of relevant research. She has experience in coordinating international and national collaborative projects which facilitate the use of best evidence in healthcare policy and practice. She leads the Centre for Evidence-Based Health Care, Division of Epidemiology and Biostatistics, and the Department of Global Health, at the Faculty of Medicine and Health Sciences, Stellenbosch University, South Africa. Robin Julies has a Master's degree in Psychology and a professional Mental Health degree (BPsych Hons). She has worked with key populations in various communities. She conducts research with a gender focus, Intimate Partner Violence (IPV) and HIV prevention in AGYW. She is published in these areas. Her Masters focused on men’s experiences of IPV and the available literature. She runs a research and capacity-building consultancy, African Population (Behavioural) Research Institute. Rizqah Dollie is an applied visual anthropologist boasting a journalism qualification. Rizqah has lectured History of Art, Photography and Visual Anthropology at several tertiary institutions and conducts Photovoice workshops for academic research projects. She has worked on a multitude of community engagement and media initiatives for the past twenty years. Rizqah is a practicing visual anthropologist, social documentarian, photographer, lecturer, and videographer. Innovative storytelling and informing communities is key to her projects. Reshaan is an applied visual anthropologist with an honours in community newspapers and their influence on society from the University of the Western Cape. He has worked as a practising researcher and visual anthropologist for thirteen years. Reshaan is a practising social engagement visualist with a vested interest in the mysticism of spiritual practices and ritual content. His current focus area is documentary filmmaking. He is completing a Masters which was converted to a PhD in Visual Ethnographies at The Desmond Tutu Centre for Religion and Social Justice. Karin Hannes is a professor at the Faculty of Social Sciences, KU Leuven and specializes in transdisciplinary studies. She applies an inclusive, co-creative perspective to the development of methods and models for positive change in society in fields such as urban and sustainable development, socially engaged artistic practice, public health, and community-based research. She approaches health and social welfare topics through arts-based, multi-sensory, place-based and future based research inquiry. Prof. Hannes is particularly known for her contributions to the development of qualitative evidence synthesis approaches and the inclusion of art in systematic reviews. References Amsden, J. and Vanwynsberghe, R. (2005) ‘Community mapping as a research tool with youth’, http://dx.doi.org/10.1177/1476750305058487 , 3(4), pp. 357–381. doi: 10.1177/1476750305058487. Archibald, M. M. (2022) ‘Interweaving Arts-Based, Qualitative and Mixed Methods Research: Showcasing Integration and Knowledge Translation Through Material and Narrative Reflection’, https://doi.org/10.1177/19408447221097063 , 15(2), pp. 168–198. doi: 10.1177/19408447221097063. Archibald, M. M., Caine, V. and Scott, S. D. (2014) ‘The Development of a Classification Schema for Arts-Based Approaches to Knowledge Translation’, Worldviews on Evidence-Based Nursing , 11(5), pp. 316–324. doi: 10.1111/WVN.12053. AVERT (2021) Global HIV and AIDS statistics | Avert . Available at: https://www.avert.org/global-hiv-and-aids-statistics (Accessed: 21 November 2021). Barad, K. (2003) ‘Posthumanist performativity: Toward an understanding of how matter comes to matter’, Signs , 28(3), pp. 801–831. doi: 10.1086/345321. Barad, K. (2007) Meeting the Universe Halfway: Quantum Physics and the Entanglement of Matter . Duke University Press. Available at: https://books.google.co.za/books/about/Meeting_the_Universe_Halfway.html?id=H41WUfTU2CMC&printsec=frontcover&source=kp_read_button&hl=en&redir_esc=y#v=onepage&q&f=false (Accessed: 22 November 2021). Barroso, J. and Sandelowski, M. (2016) ‘Sample Reporting in Qualitative Studies of Women with HIV Infection’, http://dx.doi.org/10.1177/1525822X03257392 , 15(4), pp. 386–404. doi: 10.1177/1525822X03257392. Baumann, S. E. et al. (2019) ‘Is Film as a Research Tool the Future of Public Health? A Review of Study Designs, Opportunities, and Challenges’, https://doi.org/10.1177/1049732319871251 , 30(2), pp. 250–257. doi: 10.1177/1049732319871251. Brittain, K. et al. (2019) ‘Behavioural health risks during early adolescence among perinatally HIV-infected South African adolescents and same-age, HIV-uninfected peers’, AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV . doi: 10.1080/09540121.2018.1533233. Brown, C. S. (2017) Discrimination in childhood and adolescence: A developmental intergroup approach , Discrimination in Childhood and Adolescence: A Developmental Intergroup Approach . Taylor and Francis. doi: 10.4324/9781315208381/DISCRIMINATION-CHILDHOOD-ADOLESCENCE-CHRISTIA-SPEARS-BROWN. Cluver, L. D. et al. (2022) ‘From surviving to thriving: integrating mental health care into HIV, community, and family services for adolescents living with HIV’, The Lancet. Child & adolescent health , 6(8), pp. 582–592. doi: 10.1016/S2352-4642(22)00101-8. Dierckx, C. et al. (2021) ‘The third sphere: Reconceptualising allyship in community-based participatory research praxis’, Qualitative Research in Psychology , 18(4), pp. 473–497. doi: 10.1080/14780887.2020.1854402. Edwards, R. and I’anson, J. (2020) ‘Using Artifacts and Qualitative Methodology to Explore Pharmacy Students’ Learning Practices’, American Journal of Pharmaceutical Education , 84(1), pp. 47–59. doi: 10.5688/AJPE7082. Eshun-Wilson, I. et al. (2019) ‘Being HIV positive and staying on antiretroviral therapy in Africa: A qualitative systematic review and theoretical model’, PLoS ONE , 14(1). doi: 10.1371/journal.pone.0210408. Evans, J. and Jones, P. (2011) ‘The walking interview: Methodology, mobility and place’, Applied Geography , 31(2), pp. 849–858. doi: 10.1016/J.APGEOG.2010.09.005. Evans, K. (2007) ‘Concepts of bounded agency in education, work, and the personal lives of young adults’, International Journal of Psychology , 42(2), pp. 85–93. doi: 10.1080/00207590600991237. Fox, N. J. and Alldred, P. (2016) ‘Sociology, environment and health: a materialist approach’, Public Health , 141, pp. 287–293. doi: 10.1016/j.puhe.2016.09.015. Frederick Erikson (1985) Qualitative Methods in Research on Teaching . 81. Michigan: The Institute for Research on Teaching. Available at: https://edwp.educ.msu.edu/research/wp-content/uploads/sites/10/2020/11/op081.pdf. Frescura, L. et al. (2022) ‘Achieving the 95 95 95 targets for all: A pathway to ending AIDS’, PLOS ONE , 17(8), p. e0272405. doi: 10.1371/JOURNAL.PONE.0272405. Fugard, A. J. B. and Potts, H. W. W. (2015) ‘Supporting thinking on sample sizes for thematic analyses: a quantitative tool’, International Journal of Social Research Methodology , 18(6), pp. 669–684. doi: 10.1080/13645579.2015.1005453. Gerber, N. et al. (2022) Sustaining life on earth: Arts-based responses to the lived experiences of COVID-19 -Part II . Haluza, D., Schönbauer, R. and Cervinka, R. (2014) ‘Green perspectives for public health: A narrative review on the physiological effects of experiencing outdoor nature’, International Journal of Environmental Research and Public Health , 11(5), pp. 5445–5461. doi: 10.3390/IJERPH110505445. Hannes, K. (2023) ‘Tactics in Support of the Strategy to Include Artistic Research as Evidence in Systematic Reviews’, International Journal of Qualitative Methods , 22, pp. 1–11. doi: 10.1177/16094069231176391. Harris, A. and Guillemin, M. (2011) ‘Developing Sensory Awareness in Qualitative Interviewing’, http://dx.doi.org/10.1177/1049732311431899 , 22(5), pp. 689–699. doi: 10.1177/1049732311431899. Heestermans, T. et al. (2016) ‘Determinants of adherence to antiretroviral therapy among HIV-positive adults in sub-Saharan Africa: a systematic review’, BMJ Global Health , 1(4), p. e000125. doi: 10.1136/bmjgh-2016-000125. Hendricks, L. et al. (2022) More than a pill . South Africa: YouTube. Available at: https://www.youtube.com/watch?v=zJVrhuNDuO0. Hendricks, L. A. et al. (2022) ‘Storyboarding HIV Infected Young People’s Adherence to Antiretroviral Therapy in Lower- to Upper Middle-Income Countries: A New-Materialist Qualitative Evidence Synthesis’, International Journal of Environmental Research and Public Health , 19(18), p. 11317. doi: 10.3390/IJERPH191811317/S1. Hendricks, L., Eshun-Wilson, I. and Rohwer, A. (2021) ‘A mega-aggregation framework synthesis of the barriers and facilitators to linkage, adherence to ART and retention in care among people living with HIV’, Systematic Reviews , 10(1), pp. 1–28. doi: 10.1186/s13643-021-01582-z. Kondo, M. C. et al. (2018) ‘Urban Green Space and Its Impact on Human Health’, International Journal of Environmental Research and Public Health 2018, Vol. 15, Page 445 , 15(3), p. 445. doi: 10.3390/IJERPH15030445. Konstantina Vasileiou et al. (2018) ‘Characterising and justifying sample size sufficiency in interview-based studies: systematic analysis of qualitative health research over a 15-year period’, BMC Medical Research Methodology , 18(1), pp. 1–18. Kuo, M. (2015) ‘How might contact with nature promote human health? Promising mechanisms and a possible central pathway’, Frontiers in Psychology , 6. doi: 10.3389/FPSYG.2015.01093. Laurenzi, C. A. et al. (2020) ‘Preventing mental health conditions in adolescents living with HIV: an urgent need for evidence’, Journal of the International AIDS Society , 23(Suppl 5). doi: 10.1002/JIA2.25556. Maapalo, P. and Østern, P. (2018) ‘Education Inquiry The agency of wood: multisensory interviews with Art and Crafts teachers in a post-humanistic and new-materialistic perspective Pauliina Maapalo & Tone Pernille Østern The agency of wood: multisensory interviews with Art and Crafts teachers in a post-humanistic and new-materialistic perspective’. doi: 10.1080/20004508.2018.1424492. Mackworth-Young, C. R. S., Bond, V. and Wringe, A. (2020) ‘Medical Anthropology Cross-Cultural Studies in Health and Illness ISSN: (Print) (Online) Journal homepage: https://www.tandfonline.com/loi/gmea20 Secrets and Silence: Agency of Young Women Managing HIV Disclosure’. doi: 10.1080/01459740.2020.1764551. Morrow, S. L. (2005) ‘Quality and trustworthiness in qualitative research in counseling psychology.’, Journal of Counseling Psychology , 52(2), p. 250. doi: 10.1037/0022-0167.52.2.250. Nel, J. et al. (2023) Southern African HIV Clinicians Society Guidelines for Antiretroviral Therapy in Adults : 2023 update . Available at: file:///C:/Users/lynnah/Dropbox/PC (2)/Downloads/SAHCS Adult ART 2023 Guidelines.pdf. Nichols, J., Paintsil, E. and Steinmetz, A. (2017) ‘Impact of HIV-Status Disclosure on Adherence to Antiretroviral Therapy Among HIV-Infected Children in Resource-Limited Settings: A Systematic Review’, AIDS & Behavior , 21(1 PG-59–69), pp. 59–69. doi: 10.1007/s10461-016-1481-z. Nyogea, D. et al. (2015) ‘Determinants of antiretroviral adherence among HIV positive children and teenagers in rural Tanzania: A mixed methods study’, BMC Infectious Diseases , 15(1), pp. 1–13. doi: 10.1186/s12879-015-0753-y. Peltzer, K. et al. (2018) ‘Fertility intentions of prenatal and postpartum HIV-positive women in primary care in Mpumalanga province, South Africa: A longitudinal study’, HIV/AIDS - Research and Palliative Care . doi: 10.2147/HIV.S153212. Pink, S. (2012) ‘Interpreting Multisensory Research: The Place of Analysis in Sensory Ethnography’, Doing Sensory Ethnography , pp. 119–131. doi: 10.4135/9781446249383.N8. Rohwer, A. et al. (2021) ‘Testing for saturation in qualitative evidence syntheses: An update of HIV adherence in Africa’, PLOS ONE , 16(10), p. e0258352. doi: 10.1371/JOURNAL.PONE.0258352. Sharp, J., Pollock, V. and Paddison, R. (2016) ‘Just Art for a Just City: Public Art and Social Inclusion in Urban Regeneration’, http://dx.doi.org/10.1080/00420980500106963 , 42(5–6), pp. 1001–1023. doi: 10.1080/00420980500106963. Shepley, M. et al. (2019) ‘The Impact of Green Space on Violent Crime in Urban Environments: An Evidence Synthesis’, International Journal of Environmental Research and Public Health , 16(24). doi: 10.3390/IJERPH16245119. Simbayi, L., Zuma, K. and Zungu, N. (2019) South African National HIV Prevalence, Incidence, Behaviour and Communication Survey, 2017: towards achieving the UNAIDS 90-90-90 targets . Edited by S. Randall. Cape Town: Human Sciences Research Council Press. Available at: https://repository.hsrc.ac.za/handle/20.500.11910/15052. Slogrove, A. L. et al. (2018) ‘The epidemiology of adolescents living with perinatally acquired HIV: A cross-region global cohort analysis.’, PLoS Medicine . Staniszewska, S., Brett, J., Mockford, C., & Barber, R. (2011). The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. International journal of technology assessment in health care , 27 (4), 391–399. https://doi.org/10.1017/S0266462311000481 Steimer, T. (2022) ‘The biology of fear- and anxiety-related behaviors’, https://doi.org/10.31887/DCNS.2002.4.3/tsteimer , 4(3), pp. 231–249. doi: 10.31887/DCNS.2002.4.3/TSTEIMER. Tuckett, A. G. and Stewart, D. E. (2014) ‘Collecting qualitative data: Part I Journal as a method: experience, rationale and limitations’, http://dx.doi.org/10.5172/conu.16.1-2.104 , 16(1–2), pp. 104–113. doi: 10.5172/CONU.16.1-2.104. UN General Assembly (2015) Transforming our World: The 2030 Agenda for Sustainable Development | Department of Economic and Social Affairs . Available at: https://sdgs.un.org/publications/transforming-our-world-2030-agenda-sustainable-development-17981 (Accessed: 28 February 2022). Vasquez, G. (2004) Centre For Social Science Research Body Perceptions of HIV And Aids: The Memory Box Project . Available at: http://www.uct.ac.za/depts/cssr/pubs.html (Accessed: 20 March 2023). Weinstein, N., Przybylski, A. K. and Ryan, R. M. (2009) ‘Can nature make us more caring? Effects of immersion in nature on intrinsic aspirations and generosity’, Personality and Social Psychology Bulletin , 35(10), pp. 1315–1329. doi: 10.1177/0146167209341649. Zerbe, K. J. (2019) ‘The Secret Life of Secrets: Deleterious Psychosomatic Effects on Patient and Analyst’, https://doi.org/10.1177/0003065119826624 , 67(1), pp. 185–214. doi: 10.1177/0003065119826624. Additional Declarations No competing interests reported. Supplementary Files appendix1GRIPPReportingguideline.docx Cite Share Download PDF Status: Published Journal Publication published 12 Jun, 2025 Read the published version in Research Involvement and Engagement → Version 1 posted Editorial decision: Revision requested 21 Jun, 2024 Editor assigned by journal 21 Jun, 2024 Submission checks completed at journal 20 Jun, 2024 First submitted to journal 28 May, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4493670","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":317451293,"identity":"605db5e7-c8e5-4c5b-958a-cbdf18843feb","order_by":0,"name":"Lynn Hendricks","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAvElEQVRIiWNgGAWjYBACPhDB2GBDghY2iJY00rUcJkWLRO6xBz93nLc3uN3A+OEHQ508EVry0g17z9xO3HDnALNkDwObYQNhLTlmErxttxMMbiQwSDMw8DASpUXyb9s5e6AW5t8MDBL2RGmR5m07wLjhRgIb0BaDRMJaeN6YScu2JSfOvJHYZtljkJBMUAs/O9Bhb9vs7PluJB++8aOizpagFgaBBBgL5HEDgupB1hwgRtUoGAWjYBSMaAAANLQ1k+nuQb8AAAAASUVORK5CYII=","orcid":"","institution":"Stellenbosch University","correspondingAuthor":true,"prefix":"","firstName":"Lynn","middleName":"","lastName":"Hendricks","suffix":""},{"id":317451295,"identity":"70414bc0-2d8b-4181-b80a-22433ef0c653","order_by":1,"name":"Taryn Young","email":"","orcid":"","institution":"Stellenbosch University","correspondingAuthor":false,"prefix":"","firstName":"Taryn","middleName":"","lastName":"Young","suffix":""},{"id":317451296,"identity":"4301beda-deac-456b-9831-16e782816eaf","order_by":2,"name":"Robin Julies","email":"","orcid":"","institution":"Stellenbosch University","correspondingAuthor":false,"prefix":"","firstName":"Robin","middleName":"","lastName":"Julies","suffix":""},{"id":317451297,"identity":"df88468e-344e-4306-8840-811f7d5e1da2","order_by":3,"name":"Rizqah Dollie","email":"","orcid":"","institution":"Dollie House","correspondingAuthor":false,"prefix":"","firstName":"Rizqah","middleName":"","lastName":"Dollie","suffix":""},{"id":317451298,"identity":"f6e05187-1a1a-431d-bb93-d5ba67475bae","order_by":4,"name":"Reshaan Dollie","email":"","orcid":"","institution":"Dollie House","correspondingAuthor":false,"prefix":"","firstName":"Reshaan","middleName":"","lastName":"Dollie","suffix":""},{"id":317451299,"identity":"ddb5c48f-4639-4b71-87de-9ef5088cb9c9","order_by":5,"name":"Karin Hannes","email":"","orcid":"","institution":"KU Leuven","correspondingAuthor":false,"prefix":"","firstName":"Karin","middleName":"","lastName":"Hannes","suffix":""}],"badges":[],"createdAt":"2024-05-29 02:02:58","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4493670/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4493670/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s40900-025-00712-4","type":"published","date":"2025-06-12T15:57:43+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":59950493,"identity":"ee92a218-d9e6-48c5-8fb0-08f3d3653b5f","added_by":"auto","created_at":"2024-07-09 17:28:17","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":286596,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eThe adherence assemblage model\u003c/em\u003e\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-4493670/v1/413d87dc93b55d96fdcd5ca2.png"},{"id":59949776,"identity":"5c49c35f-c301-42bc-becb-83eac585bede","added_by":"auto","created_at":"2024-07-09 17:12:17","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":399285,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003ePortraits: (Un)exposed secret lives of young women.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-4493670/v1/5f7caaa734467a4213aba28a.png"},{"id":59949771,"identity":"bfd622ef-e20e-4dd8-80e7-e9acbb19fcf0","added_by":"auto","created_at":"2024-07-09 17:12:17","extension":"png","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":931967,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eMia showing her blue ART.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"3.png","url":"https://assets-eu.researchsquare.com/files/rs-4493670/v1/0264fd9b0b03427f9ce62547.png"},{"id":59950081,"identity":"c85a00c3-8dba-4748-bf91-3aaf7aacbe3e","added_by":"auto","created_at":"2024-07-09 17:20:17","extension":"png","order_by":4,"title":"Figure 4","display":"","copyAsset":false,"role":"figure","size":728664,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eCassidy showing her medication bottles.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"4.png","url":"https://assets-eu.researchsquare.com/files/rs-4493670/v1/58d978816503107a033c0609.png"},{"id":59950494,"identity":"d787c8a2-bbd5-48c7-8b4d-8a041ba47558","added_by":"auto","created_at":"2024-07-09 17:28:17","extension":"png","order_by":5,"title":"Figure 5","display":"","copyAsset":false,"role":"figure","size":1765829,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eMaterial items collected during the study.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"5.png","url":"https://assets-eu.researchsquare.com/files/rs-4493670/v1/4ba0d5182400976b2cd789fd.png"},{"id":59949774,"identity":"8748587f-12fa-45f6-a1ac-b63f52010b03","added_by":"auto","created_at":"2024-07-09 17:12:17","extension":"png","order_by":6,"title":"Figure 6","display":"","copyAsset":false,"role":"figure","size":796498,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eTraditional isiXhosa green and red bracelets and anklets\u003c/em\u003e\u003c/p\u003e","description":"","filename":"6.png","url":"https://assets-eu.researchsquare.com/files/rs-4493670/v1/fd0dba5da2443a604ad7b45d.png"},{"id":59950080,"identity":"81fb7304-090a-45eb-85b5-64f33f2e7db6","added_by":"auto","created_at":"2024-07-09 17:20:17","extension":"png","order_by":7,"title":"Figure 7","display":"","copyAsset":false,"role":"figure","size":2239475,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eWhat matters for adherence plinths.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"7.png","url":"https://assets-eu.researchsquare.com/files/rs-4493670/v1/313abecf0e597f43c5166189.png"},{"id":59949778,"identity":"5b97a91f-5d4e-4e21-acea-8632630eabdb","added_by":"auto","created_at":"2024-07-09 17:12:17","extension":"png","order_by":8,"title":"Figure 8","display":"","copyAsset":false,"role":"figure","size":290065,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eThe lead running outside to power the houses in the yard.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"8.png","url":"https://assets-eu.researchsquare.com/files/rs-4493670/v1/d07bf3cf307f73cef847b813.png"},{"id":59949781,"identity":"4dc3edd2-f3d8-4c46-a70a-12c77912bc87","added_by":"auto","created_at":"2024-07-09 17:12:17","extension":"png","order_by":9,"title":"Figure 9","display":"","copyAsset":false,"role":"figure","size":799603,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eMultisensory interviews at the clinic\u003c/em\u003e\u003c/p\u003e","description":"","filename":"9.png","url":"https://assets-eu.researchsquare.com/files/rs-4493670/v1/60766bc577cc23c0d4bbbfff.png"},{"id":59950084,"identity":"8c02249b-6809-41f0-ac46-101f4cbee861","added_by":"auto","created_at":"2024-07-09 17:20:17","extension":"png","order_by":10,"title":"Figure 10","display":"","copyAsset":false,"role":"figure","size":764494,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eIn the HIV waiting area next to the TB consultation room.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"10.png","url":"https://assets-eu.researchsquare.com/files/rs-4493670/v1/4fc9c8d21bb2a98bc3e767fd.png"},{"id":59950082,"identity":"91ed8a5e-9910-466b-99df-eeb4509ad92e","added_by":"auto","created_at":"2024-07-09 17:20:17","extension":"png","order_by":11,"title":"Figure 11","display":"","copyAsset":false,"role":"figure","size":1030651,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eChildren playing and laughing outside.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"11.png","url":"https://assets-eu.researchsquare.com/files/rs-4493670/v1/c0b891627e599986ea5b2d66.png"},{"id":59949783,"identity":"a0f41c0c-765e-4cd9-9539-d48e3776ecaf","added_by":"auto","created_at":"2024-07-09 17:12:17","extension":"png","order_by":12,"title":"Figure 12","display":"","copyAsset":false,"role":"figure","size":1610667,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eFigure 12-16: Exhibition of co-creative synthesis through artworks\u003c/em\u003e\u003c/p\u003e","description":"","filename":"12.png","url":"https://assets-eu.researchsquare.com/files/rs-4493670/v1/1af24194e9ebb5d2755d8074.png"},{"id":84726832,"identity":"680b76d1-b7d1-4a24-9309-ea32ff41f053","added_by":"auto","created_at":"2025-06-16 16:08:25","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":20748814,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4493670/v1/81788f24-659c-43f7-aa31-ed22ae18dc78.pdf"},{"id":59950078,"identity":"0a1db8b1-ea06-4b05-874c-5948744a83b0","added_by":"auto","created_at":"2024-07-09 17:20:17","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":44244,"visible":true,"origin":"","legend":"","description":"","filename":"appendix1GRIPPReportingguideline.docx","url":"https://assets-eu.researchsquare.com/files/rs-4493670/v1/ab71653f415cf40d99f84696.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"‘More than a pill’: A qualitative co-exploration of the things that matter in young women's stories of adherence to antiretroviral treatment in South Africa","fulltext":[{"header":"Plain English Summary","content":"\u003cp\u003eThis study explores the factors affecting adherence to antiretroviral treatment (ART) among young women living with perinatal HIV (YWLPHIV) in Cape Town, South Africa. The study used a multisensory arts-based community participatory approach, involving visual and digital mediums, to understand how these women navigate their treatment within their material environments. The research team consisted of academics, young women living with HIV, a counsellor, and visual ethnographers, and they developed the Adherence Assemblage model to guide the study.\u003c/p\u003e\n\u003cp\u003eThe study revealed four main storylines: the secrecy surrounding HIV status, the multisensory experiences of adherence, the significance of material objects in adherence, and the impact of environments. Young women often used non-adherence to exert control over their lives, and material factors, such as the physical characteristics of the pills and the environments in which they lived, played a significant role in their adherence behaviours.\u003c/p\u003e\n\u003cp\u003eThe study highlighted the complex interplay between the physical and social environments and their impact on adherence. It emphasised the need for more research focusing on the material aspects of adherence and the specific needs of YWLPHIV. The findings were synthesised into a research documentary and co-creative artworks, providing a platform for stakeholders to discuss how to support these young women better.\u003c/p\u003e\n\u003cp\u003eThe study concluded that understanding the material environment\u0026apos;s role in adherence is crucial for developing more effective support systems for YWLPHIV. It called for a more holistic approach that includes the perspectives of young women and considers their emotional, cognitive, and psychosocial development.\u003c/p\u003e"},{"header":"Background","content":"\u003cp\u003eHuman immunodeficiency virus (HIV) is a global public health challenge with approximately 38.4\u0026nbsp;million people currently living with HIV globally (Frescura et al., \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e2022\u003c/span\u003e). Perinatal infections of HIV are passed on through vertical transmission from mother to child while pregnant, through childbirth, or breastfeeding. Before the advent of Antiretroviral Treatment (ART), approximately 50% of perinatally infected children were expected to die before the age of 2 years. In December 2020, UNAIDS launched a new set of global targets, called 95-95-95, to address HIV, calling for 95% of all people living with HIV to know their status, 95% of all people living with HIV to receive ART and 95% of people on ART to be virally suppressed by 2025 (Frescura et al., \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e2022\u003c/span\u003e). South Africa (SA) has been trying to eliminate mother-to-child transmission (Peltzer et al., \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e2018\u003c/span\u003e) but still has one of the highest prevalences of pregnant women living with HIV (Simbayi, Zuma and Zungu, \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e2019\u003c/span\u003e). The new ART guidelines recommend that all pregnant and breastfeeding women living with HIV should be initiated on lifelong ART, ideally on the same day that pregnancy is confirmed (Nel et al., \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e2023\u003c/span\u003e). However, there remains a large proportion of children who acquire HIV perinatally and a large cohort who are now reaching adolescence (Slogrove et al., \u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e2018\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe life stage of adolescence into young adulthood (16\u0026ndash;24 years) is one characterized by stress and transition, and this makes young women living with perinatal infections of HIV (YWLPHIV) especially vulnerable. For YWLPHIV, the multiple burdens of this life stage may include economic vulnerabilities, psychosocial challenges and the threat of discrimination and violence, which can be internalized as the rejection of the self (Brown, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e2017\u003c/span\u003e). Young women living in countries like South Africa are considered especially vulnerable due to the added burdens of gender and economic inequality and gender-based violence (Simbayi, Zuma and Zungu, \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e2019\u003c/span\u003e; AVERT, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). YWLPHIV experienced higher levels of suicide ideation, and mental health concerns, and reported different clinical and psychological experiences of using and accessing treatment for HIV as compared to young women who were not vertically infected (Cluver et al., \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e2022\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eART has transformed living with HIV into a chronic disease rather than a progressively fatal one. However, adherence to ART needs to be near-perfect to keep viral loads low and undetectable. This can become burdensome when integrating clinic visits, pill collections, and negotiating the stigma associated with living with HIV. It becomes necessary and important for programmes and interventions tailored specifically to their needs and to consider young women's intersectionality and emotional, cognitive, and psychosocial development. Despite all efforts and the number of studies continuing to be produced on ART adherence (Eshun-Wilson et al., \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e2019\u003c/span\u003e; Rohwer et al., \u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e2021\u003c/span\u003e) the challenges of treatment adherence remain.\u003c/p\u003e \u003cp\u003eAdherence to ART for YWLPHIV is strongly related to a range of social, cultural, political, economic, and environmental factors (Hendricks, Eshun-Wilson and Rohwer, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). Often overlooked in adherence research is the role of the material environment. While the direct health impacts of natural environmental changes like climate change, including the psychological and physiological effects, and the promotion of health through trees, plants, and landscaping in built environments are relatively well understood, (Weinstein, Przybylski and Ryan, \u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e2009\u003c/span\u003e; Kuo, \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e2015\u003c/span\u003e), the influence of things or materials on health behaviours is harder to identify.\u003c/p\u003e \u003cp\u003eIn our prior exploration of the available theoretical models to understand adherence to ART we identified a gap in the role of the material environment on adherence (Hendricks et al., \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e2022\u003c/span\u003e) and proposed the Adherence Assemblage model which is built on the dynamic and fluid integration of the biological, psychological, social, health system, political, natural environment, and material dimensions to make sense of adherence to ART. In this study we aim to co-explore the things, the non-human stuff that matter in young women's stories of adherence to antiretroviral treatment in South Africa.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e We adopted a co-creative, art-based, participatory approach to explore the aim of this qualitative study. We worked with the concept of a \u0026lsquo;third sphere\u0026rsquo; (Hendricks, Dierckx, et al., 2021), a hybrid physical and virtual space that operated under the principle of equal intelligence of all actors and embraced the idea of differing. We defined Patient and Public Involvement (PPI) as relational allyship within a co-research team. This study was reported using the GRIPP2 Checklist (Staniszewska et al., \u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e2011\u003c/span\u003e) (see Additional file 1).\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eSetting and Co-research team\u003c/h2\u003e \u003cp\u003eThe study was conducted in three communities in Cape Town, South Africa. Two communities are considered peri-urban areas located 15 km east of the city centre with a combined population of 76,000 people, with most residents living on less than 167 USD per month. The communities are primarily Afrikaans and English-speaking. The other is an informal housing settlement on the eastern outskirts of Cape Town and has an estimated population of 21,000 people who speak mainly isiXhosa and Afrikaans. Participants were recruited through two community clinics and invited in as co-researchers. Participants consented verbally and in writing, to the study and for their information and pictures to be used for dissemination, in their preferred language (either Afrikaans, isiXhosa, or English). Six (AH, RP, LDB, AM, TR, TM) of seven YWLPHIV stayed engaged as part of the research team for eight months and one (Chloe) dropped out of the study after 4 weeks due to other personal priorities. We shared decision-making on the scope, direction, and dissemination content of the study. \u0026lsquo;We\u0026rsquo; in this manuscript, refers to the combined co-research team.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eParticipant profiles of YWLPHIV (pseudo names)\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"5\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eYoung women\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAge\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eParents/ Caregivers and currently living with\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSchool/ Work\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eAdherence\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eMia\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e22\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMother, sisters, brothers, and 2-year-old son. Father deceased due to TB/AIDS.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eCompleted Grade 12. Unemployed for some time but am currently employed as an intern.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eAdherent consistently.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eCassidy\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e18\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eGrandmother, HIV-negative twin sister, aunt, and nephews. Father and mother deceased due to AIDS.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eGrade 11 (in school)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNot consistently adherent. Grandmother tries to be supportive through reminders\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eTony\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e21\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMother and brother. Father deceased due to TB/AIDS.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eCompleted Grade 12. Searching for work.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eAdherent consistently.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eNora\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e17\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMother, father, and brother.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eGrade 11 (in school)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eAdherent consistently. Parents are supportive and provide reminders\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eThandi\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e21\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFather, stepmother, and stepsisters. Mother deceased due to TB/AIDS.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eDropped out of school due to bullying by teachers in Grade 12. Searching for work.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNot consistently adherent. Mixes medications with traditional medicine.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eManda\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e20\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMother and sisters. Father deceased due to TB/AIDS.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eDropped out of school due to bullying by teachers in Grade 10. Does hairdressing for income and seasonal farmworkers.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNot consistently adherent. Mixes medications with traditional medicine.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eChloe\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e17\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMother and father.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eGrade 10 (in school)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNon-adherent\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eData Collection\u003c/h2\u003e \u003cp\u003eThe six young women were provided with art materials, a journal, a cell phone, a sim card, a memory card, and monthly airtime, as a resource pack upon joining the co-research team. Together, we set up the phones with sim cards, and a Gmail account (to store data), and downloaded WhatsApp as a means of communication, for which training was provided. Due to community violence, we did not feel safe doing walking interviews or using the public transport system alone and worked around this by meeting together outside of the community, commuting to interviews using Uber, and limiting the individual use of audio-visual equipment publicly. We adopted other strategies like driving through the community and video recording, doing interviews inside the boundaries of a building, and capturing film and pictures through house windows, and in the early morning when communities were not as busy. Additionally, we developed a checking system for community violence on the mornings of our engagements to assess the level of safety to leave home, as three of the young women had weekly experiences of gang violence and shooting on their doorsteps.\u003c/p\u003e \u003cp\u003eWe were flexible in our use of multi-modal data collection and analytic techniques, as determined by the young women\u0026rsquo;s choice, time and context. These included methods such as artistic co-creations (Archibald, Caine and Scott, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e2014\u003c/span\u003e), body mapping (Vasquez, \u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e2004\u003c/span\u003e), collaborative filmmaking (Baumann et al., \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e2019\u003c/span\u003e), collecting material objects of meaning (Edwards and I\u0026rsquo;anson, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e2020\u003c/span\u003e), community mapping (Amsden and Vanwynsberghe, \u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e2005\u003c/span\u003e), individual and group conversations including walking and driving interviews (Evans and Jones, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e2011\u003c/span\u003e), journalling (Tuckett and Stewart, \u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e2014\u003c/span\u003e), multisensory home and clinic interviews (Maapalo and \u0026Oslash;stern, \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e2018\u003c/span\u003e), a research camp (Dierckx et al., \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2021\u003c/span\u003e), and storytelling (Archibald, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2022\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eData management and analysis\u003c/h2\u003e \u003cp\u003eGiven the multisensory nature of our data, special care was taken to store and protect the data. Data analysis was an iterative process with the co-research team. At first, we would reflect and journal the main insights individually, and then in joint meetings, we shared them. Together, we identified the main storylines and then created collaborative artworks we called, synthesis creations, in response. We operationalised this as a type of creative work that combines and integrates ideas or elements from multiple sources. It typically involves a process of synthesis, in which different pieces of information or artistic materials are brought together and recombined to form a new whole (Sharp, Pollock and Paddison, \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e2016\u003c/span\u003e; Gerber et al., \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Hannes, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e2023\u003c/span\u003e). Synthesis creative outputs can take many forms, including visual art, music, literature, film, or performance, among others. Interpretations are then made during and after the creation, through reflection. Using this modus of analysis supported our reflexivity and trustworthiness in this study (Morrow, \u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e2005\u003c/span\u003e), as we constantly checked in with one another and discussed all interpretations in depth.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eStorylines\u003c/h2\u003e \u003cp\u003eFocusing our attention on what comes to matter for adherence we co-creatively synthesised four storylines: \u0026lsquo;living with a (un)exposed HIV secret\u0026rsquo;, \u0026lsquo;multisensory experience of adherence\u0026rsquo;, \u0026lsquo;things that matter in adherence\u0026rsquo;, and \u0026lsquo;environments as friends and foes\u0026rsquo;.\u003c/p\u003e \u003cp\u003e \u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003eStoryline 1: Living with a (un)exposed HIV secret.\u003c/span\u003e \u003c/p\u003e \u003cp\u003eDescribing 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 \u0026ndash; 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.\u0026nbsp;\u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eMia 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, \u0026ldquo;\u003cem\u003ehe told me I am here because I cannot control myself. Like I was sleeping around. He judged me, and he was a pastor!\u0026rdquo;.\u003c/em\u003e 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.\u003c/p\u003e \u003cp\u003eShe recalls, \u0026ldquo;\u003cem\u003eI went into the room to feed him and had to hide his clinic card away from them when they\u003c/em\u003e (her in laws and other family) \u003cem\u003evisited\u0026rdquo;\u003c/em\u003e.\u003c/p\u003e \u003cp\u003eTony 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, \u0026ldquo;\u003cem\u003eI tell them I am there because of TB because my neighbour who works at the clinic will tell people I have HIV\u003c/em\u003e\u0026rdquo;.\u003c/p\u003e \u003cp\u003eNora 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\u0026rsquo;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.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;My mommy went to the school and told the teacher, and the teacher told the children. My friends all know\u0026hellip;It doesn\u0026rsquo;t matter to them because they knew long ago.\u0026rdquo;\u003c/em\u003e (Nora)\u003c/p\u003e \u003cp\u003eDating 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 \u0026ldquo;\u003cem\u003eif they get HIV, it\u0026rsquo;s their own fault, I told them I didn\u0026rsquo;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\u0026rsquo;s not my fault\u0026rdquo;\u003c/em\u003e.\u003c/p\u003e \u003cp\u003eSome 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.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eStoryline 2: The multisensory experience of adherence\u003c/h2\u003e \u003cp\u003eWhen first asked about adherence most said they take their medication because \u0026lsquo;\u003cem\u003eit is routine\u0026rsquo;\u003c/em\u003e (Mia), \u0026lsquo;\u003cem\u003eEk het dit altyd geneem\u0026rsquo;\u003c/em\u003e (\u0026lsquo;\u003cem\u003eI have always taken it\u0026rsquo;\u003c/em\u003e) (Tony), \u0026lsquo;\u003cem\u003eI don\u0026rsquo;t know I am just used to it now\u0026rsquo;\u003c/em\u003e (Nora).\u003c/p\u003e \u003cp\u003eHowever, 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\u0026rsquo;s responses were varied, with each young women feeling differently; some questioning themselves, or thankful, or in need, or tired or angry, saying:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Cure me\u0026rdquo; (Mia)\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Why me?\u0026rdquo; (Nora)\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Dankie dat jy my gesond maak\u0026rdquo; (Thank you for healing me) (Tony)\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;When I see you, I feel tired. You make me so sleepy\u0026rdquo; (Thandi)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eMia observed that she did not like the colour of the tablet, saying, \u003cem\u003e\u0026ldquo;I just don\u0026rsquo;t like the colour I wish it was white\u0026rdquo;\u003c/em\u003e (Fig.\u0026nbsp;\u003cspan refid=\"Fig3\" class=\"InternalRef\"\u003e3\u003c/span\u003e). Through reflective art we uncovered that a white pill would make the tablet seem almost invisible, \u003cem\u003e\u0026ldquo;It would be like I am taking a normal pain pill, like Panado\u0026rdquo;\u003c/em\u003e, Mia said.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eCassidy 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.\u0026nbsp;\u003cspan refid=\"Fig4\" class=\"InternalRef\"\u003e4\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eIn the excerpt from our conversation, her anger is obvious:\u003c/p\u003e \u003cp\u003eLynn: \u003cem\u003eCan you look at the bottle in your hand? We are going to talk to it now\u003c/em\u003e.\u003c/p\u003e \u003cp\u003eCassidy: \u003cem\u003eOk\u003c/em\u003e (she starts squeezing the bottle in her hand and tears start rolling down)\u003c/p\u003e \u003cp\u003eLynn: \u003cem\u003eWhat is the medication doing to you right now? Tell it what you want to say.\u003c/em\u003e\u003c/p\u003e \u003cp\u003eCassidy: \u003cem\u003eI hate you (the pill)! You make me so angry\u003c/em\u003e. (Throws the bottle across the room)\u003c/p\u003e \u003cp\u003eAnger 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.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I was doing my matric, 2020, and there was a problem with my eyes\u0026hellip;sometimes they were changing like white or blue\u0026hellip;so they said there was nothing they can do, I was damaged when I was young\u0026rdquo;\u003c/em\u003e (Thandi)\u003c/p\u003e \u003cp\u003eManda 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: \u003cem\u003e\u0026lsquo;I feel stressed, and I feel bad in my heart\u0026rsquo;\u003c/em\u003e. Cassidy in her reflection of ART shared, \u003cem\u003e\u0026ldquo;Dit maak my hart seer\u0026rdquo; (It makes my heart hurt).\u003c/em\u003e\u003c/p\u003e \u003cp\u003eTaking ART was seeing as more than just taking a pill but an embodied experience that was determined by choice, memories, and reflective emotions.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eStoryline 3: The matter of adherence\u003c/h2\u003e \u003cp\u003eThroughout 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.\u0026nbsp;\u003cspan refid=\"Fig5\" class=\"InternalRef\"\u003e5\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eAs 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\u0026rsquo;s desk, food, burglar bars on bedroom windows, traditional medicines, and one another.\u003c/p\u003e \u003cp\u003eWe asked young women, \u0026lsquo;do the things around you have any role to play in your adherence journey?\u0026rsquo; They responded:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Yes, it does matter. I need my watch. And as I told you I take my medication when the moon is out\u0026rdquo;\u003c/em\u003e (Mia).\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;You see the people and the community tells you where you can and can\u0026rsquo;t go. So, when I look outside then it makes me feel something\u0026rdquo;\u003c/em\u003e (Tony)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;No, I don\u0026rsquo;t think so, everything we do is just normal. Even if I forget my parents will remind me to go to the cupboard\u0026rdquo;\u003c/em\u003e (Nora)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Ja, it does, because without food I can\u0026rsquo;t take this medication you see. I need stuff to survive\u0026rdquo;\u003c/em\u003e (Thandi)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;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\u0026rsquo;t always important it\u0026rsquo;s the people who you have to lift you up\u0026rdquo;\u003c/em\u003e (Cassidy).\u003c/p\u003e \u003cp\u003eThe young women felt a connection towards religious institutions, spiritual beliefs, rituals and traditional medicines or healing artifacts. Mia believed in \u0026lsquo;\u003cem\u003epraying daily and having faith\u0026rsquo;\u003c/em\u003e and regularly attended church services like Tony. Thandi and Manda believed in the power of traditional medicines and shared that some believed in \u003cem\u003e\u0026lsquo;idliso\u0026rsquo;\u003c/em\u003e (spiritual pollution or poison), or witchcraft could result in HIV. Although adherent to ART, both Thandi and Manda continued to take traditional medications to \u0026lsquo;\u003cem\u003eclean out your system\u0026rsquo;\u003c/em\u003e. Manda shared that her mother is a \u0026lsquo;\u003cem\u003eamaxhwele\u003c/em\u003e\u0026rsquo; (traditional healer and herbalist) and that she herself is considered as \u003cem\u003eamagqirha\u003c/em\u003e (having a divine spirit), showing her traditional cotton bracelets and anklets (Fig.\u0026nbsp;\u003cspan refid=\"Fig6\" class=\"InternalRef\"\u003e6\u003c/span\u003e). \u003cem\u003e\u0026ldquo;Yes, I got this bracelet on my ankles and feet from my mom, she is a traditional healer. It gives me strength\u0026rdquo;\u003c/em\u003e (Manda)\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eIn collectively piecing together, the story on what mattered for adherence (Fig.\u0026nbsp;\u003cspan refid=\"Fig7\" class=\"InternalRef\"\u003e7\u003c/span\u003e), 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.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eStoryline 4: Engaging spaces and places\u003c/h2\u003e \u003cp\u003eActivating 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.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eIn rooms, in homes\u003c/h2\u003e \u003cp\u003eNora 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.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;At night I hear them talking\u0026hellip; 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.\u003c/em\u003e When asked how it made her feel, she replied, \u003cem\u003e\u0026ldquo;Frustrated, my daddy runs the lead for them so we can have extra money\u0026rdquo;\u003c/em\u003e (Fig.\u0026nbsp;\u003cspan refid=\"Fig8\" class=\"InternalRef\"\u003e8\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eEven 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 \u003cem\u003e\u0026lsquo;my room is dark, I can\u0026rsquo;t even open the window\u0026rsquo;.\u003c/em\u003e\u003c/p\u003e \u003cp\u003eThe 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.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eAt the clinic\u003c/h2\u003e \u003cp\u003eThe clinic space prompted different reactions from the young women (Fig.\u0026nbsp;\u003cspan refid=\"Fig9\" class=\"InternalRef\"\u003e9\u003c/span\u003e). The clinic felt like a place where they did not have to hide their status and the nurses knew them. While in the nurses\u0026rsquo; room and allowing themselves to sense their surroundings Thandi said, \u0026ldquo;\u003cem\u003eIt is good to come here, they know us here. We can just be free\u003c/em\u003e\u0026rdquo;. For them, the clinic provided a sense of belonging and safety. However, Thandi later shared how \u0026lsquo;\u003cem\u003ethe nurses make you feel like you going to die if you say you missed your medication. Sometimes they can judge us.\u003c/em\u003e\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eMia\u0026rsquo;s clinic embodied experience led to her exclaiming, \u0026lsquo;\u003cem\u003edie kliniek ruik soos verkoue\u003c/em\u003e\u0026rsquo; \u003cem\u003e(It\u0026rsquo;s smells like a cold, like illness)\u0026hellip;but there isn\u0026rsquo;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\u0026hellip;I can\u0026rsquo;t say happy, but \u0026hellip;what\u0026rsquo;s the word now\u0026hellip;relieved\u0026hellip;it\u0026rsquo;s as if my mind like\u0026hellip;ek voel kalm (I feel calm)\u003c/em\u003e (Fig.\u0026nbsp;\u003cspan refid=\"Fig10\" class=\"InternalRef\"\u003e10\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eNavigating 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.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eIn the community\u003c/h2\u003e \u003cp\u003eThe 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 \u0026lsquo;\u003cem\u003etsotsi\u0026rsquo;s that steal your medication and smoke it if they see you coming from the clinic\u0026rsquo;\u003c/em\u003e, 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:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;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\u0026hellip;I ran home with him. Praying the bullets wouldn\u0026rsquo;t touch him\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003eCassidy lives close to the clinic she accesses, but as we stood outside her house, she ushered us into the car and said, \u003cem\u003e\u0026ldquo;It is not safe here, I walk around because I don\u0026rsquo;t have a choice\u0026rdquo;.\u003c/em\u003e 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.\u0026nbsp;\u003cspan refid=\"Fig11\" class=\"InternalRef\"\u003e11\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eCo-creative artworks\u003c/h2\u003e \u003cp\u003eThe storylines and findings of this study were synthesised co-creatively into a one research documentary and five other collaborative artworks. The research documentary, \u0026lsquo;More than a pill\u0026rsquo;, is 45 minutes long and is available freely to the public on YouTube (Hendricks et al., \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e2022\u003c/span\u003e). 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. \u003cem\u003eEmbodied frames\u003c/em\u003e (Fig.\u0026nbsp;12) \u0026ndash; 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. \u003cem\u003eAdherence (Un)Exposed\u003c/em\u003e (Fig.\u0026nbsp;13) \u0026ndash; 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. \u003cem\u003eIn my body, with my body\u003c/em\u003e (Fig.\u0026nbsp;14) \u0026ndash; 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.\u0026nbsp;15) \u0026ndash; Using the storyboard from a related systematic review about adherence (Hendricks et al., \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e2022\u003c/span\u003e) 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. \u003cem\u003eI am her\u003c/em\u003e (Fig.\u0026nbsp;16) \u0026ndash; 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.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eThere were 126 people in attendance at the exhibition, and they were representative of the young women\u0026rsquo;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.\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThrough the co-creative synthesis of a research documentary and five other collaborative artworks, this study reported on four storylines: \u0026lsquo;living with an (un)exposed HIV secret\u0026rsquo;, the \u0026lsquo;multisensory experience of adherence\u0026rsquo;, \u0026lsquo;the matter of adherence\u0026rsquo;, and \u0026lsquo;engaging spaces and places\u0026rsquo;. Drawing on the findings of multiple types of qualitative data, which captured the perspectives of YWLPHIV about the things that matter for adherence to ART, we found that the material environments had agency in the treatment adherence decision making and behaviours of YWLPHIV.\u003c/p\u003e \u003cp\u003eOne of the hardest challenges young women reported was maintaining the secrecy of their positive HIV status in lieu of a public health narrative which urges disclosure, in the context of persistent community stigma. This led to feelings of anxiety and shame, and which were internalised and prompted negative feelings towards treatment adherence. Reluctance to adhere for psychological reasons may not be for a lack of agency but rather \u003cem\u003ebounded agency\u003c/em\u003e (Evans, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e2007\u003c/span\u003e), which situates young women in a space open for action but limited by the social climate. Young women may then adopt secrecy as a strategy of resistance to norms of HIV disclosure as encouraged by the health system, to assimilate into the social landscapes (Mackworth-Young, Bond and Wringe, \u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). Disclosure research has often emphasised the disclosure of their positive HIV status (Nichols, Paintsil and Steinmetz, \u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e2017\u003c/span\u003e). Young women shared multiple traumatic experiences that were said to be too painful to share with their mothers, because of their perinatal infections. In the case of YWLPHIV it was more layered, leading to anger, increasing self-stigma, and tensions within families and in their maternal relationships or feelings towards their deceased parents. As in other literature (Madiba and Mokgatle, 2017; Navarra et al., 2020), disclosure is associated with fear of judgment. Secret keeping is complex and the associated psychosomatic experience of maintaining difficult secrets may present through lowered immune systems, pain, and depressive symptoms (Zerbe, \u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e2019\u003c/span\u003e), which can compromise the virality of ART. More culturally appropriate understandings of disclosure and supporting of young women in their own decision making is needed.\u003c/p\u003e \u003cp\u003eThe young women in this study experience/d multiple traumas including loss of parents, gender-based violence, the turbulent period of young adulthood, generalised community violence, and social, economic and health inequities. When exploring the multisensory experience of adherence, young women experienced the resurfacing of repressed emotions and traumas, which can be triggered by smell, sight, taste, hearing, or touch (Steimer, \u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e2022\u003c/span\u003e). The powerful exercise allowed us to journey back into their experiences of loss, fears, joys, and successes related to adherence; to remain in the present; and the journey forward (Harris and Guillemin, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e2011\u003c/span\u003e; Pink, \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e2012\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eRethinking adherence as a behaviour affected by matter clarifies the distinction between the physical and social worlds (Barad, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2003\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2007\u003c/span\u003e) and the possibility to explore how things and other than human living organisms on the planet can make things happen or affect (Fox and Alldred, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e2016\u003c/span\u003e). \u0026lsquo;Affect\u0026rsquo; \u0026ndash; defined by Deleuze (1988: 127\u0026ndash;128) as a \u0026lsquo;capacity to affect and be affected\u0026rsquo;, is a feature of all matter: human and non-human, animate and inanimate. Findings of this study showcased matter - such as medical equipment, clinic benches, running water, our own hands, people gathering at a food kitchen in the road, the empty vials on the nurse\u0026rsquo;s desk, food, burglar bars on bedroom windows, traditional medicines, and one another \u0026ndash; are affective on adherence to ART. Not for lack of will power or motivation (Brittain et al., \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e2019\u003c/span\u003e), but in an act of control and power, young women at times resisted the pills. The pill held meaning and the young women perceived it as controllable \u0026ndash; something of importance that they had the agency to control. It is important that this is acknowledged and brought to awareness so that it does not become a barrier to adherence.\u003c/p\u003e \u003cp\u003eThis study also showcased how the materials in a spaces and places such as the home, the community, and the clinic (including the structural build) need further exploration in the study of adherence. The constitution of the physical elements their places of living had an intra-active affect on young women's health care decision making. The findings of this study have brought to awareness the agency of the material environment for adherence to ART for YWLPHIV. In doing so, it has provided new insights to move to a sharing of the responsibility of adherence to ART for young women with their family members, partners, peers, community members, social and health care institutions, governments, educational institutions, spiritual organisations, and funding bodies to support enabling environments. Further research, using deep inquiry and multimodal methods of data collection and creative synthesis is needed to explore how environments can be (dis)enabling for young women and what can be done to support enabling environments, is needed.\u003c/p\u003e \u003cp\u003eAlthough our study findings were based on the lived experiences of 6 YWLPHIV, we situate the findings in terms of data adequacy rather than sample size (Konstantina Vasileiou et al., \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e2018\u003c/span\u003e). Data adequacy is described by Erickson ( Erikson, 1985) as evidentiary adequacy, which includes adequate amounts of evidence, a variety in kinds of evidence (Fugard and Potts, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e2015\u003c/span\u003e), and sufficient interpretation, which may refer to this as thick description (Barroso and Sandelowski, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e2016\u003c/span\u003e), which we have provided in the reporting of this study.\u003c/p\u003e \u003cp\u003eThe strengths of this study lie in the methodological application of multimodal approaches for research design, data collection, data analysis and dissemination, which followed a para-cyclical process with no defined linear process. The process was open and flexible and could be contextualised for each individual co-researcher. Adopting the approach of deep inquiry and configurations of matter with multimodal research techniques allowed us a window into the repressed feelings and emotions of young women regarding adherence. As in the cases of Nora and Cassidy, who struggled with the verbalisation of their stories and even though they were able to use their senses to navigate their space, they could not release it until we introduced arts-based outlets such as drawing and dancing in which their experiences materialized themselves. The routine of taking medication for many years and not exploring the associated feeling became clear as we wrestled with describing the experience in words.\u003c/p\u003e \u003cp\u003eThis study challenged the often-top-down approach taken to inform young people about the relevance and importance of ART that might not always consider the challenges faced by young people, especially young women. Interpreting PPI as participants being allies and co-researchers fostered a sense of ownership and empowerment among the participants, as they were actively engaged in the research process. This engagement helped to build trust and rapport between the researchers and the participants, creating a collaborative and supportive environment. The co-research approach also allowed for richer, more authentic data collection, as participants were more willing to share their experiences and insights openly. Additionally, involving participants as co-researchers helped to ensure that the study was grounded in the lived realities and needs of the community, thereby enhancing the relevance and impact of the findings​​.\u003c/p\u003e \u003cp\u003e Despite the numerous benefits, there were also some challenges associated with interpreting PPI as participants being allies and co-researchers. One of the main drawbacks was the approach required significant time and resources to train and support participants in their roles as co-researchers. Ensuring that all participants were equally engaged and contributed meaningfully to the research process was also challenging, especially given the varying levels of education and experience among the participants. Furthermore, the emotional burden on participants who relived traumatic experiences during the research process posed ethical concerns and required careful management by the research team. The participants had a history of stigma and trauma related to rejection, which made ending the research process particularly challenging. The conclusion of the study risked re-traumatizing participants or causing feelings of abandonment. Ensuring a sensitive and supportive transition at the end of the study was essential, requiring additional care and resources to mitigate the potential negative emotional impact on the participants​​.\u003c/p\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eImpact of PPI\u003c/h2\u003e \u003cp\u003eUsing a multisensory arts-based community participatory approach engaged participants in the co-creation of visual and digital mediums, allowing them to express their experiences and perspectives on adherence to ART. The research team, comprising young women living with HIV, academics, a counsellor, and visual ethnographers, collaboratively developed the Adherence Assemblage model to guide the study. Data collection methods were diverse and included artistic co-creations, body mapping, collaborative filmmaking, collecting material objects of meaning, community mapping, individual and group conversations, journalling, and multisensory home and clinic interviews. These methods provided a rich, narrative-driven exploration of the participants' lived experiences, ensuring a comprehensive understanding of the impact of PPI.\u003c/p\u003e \u003cp\u003eTo ensure the robustness of the qualitative methods used in this study we employed a multimodal approach, relied heavily on PPI, emphasised data adequacy over sample size, and creative synthesis. Multimodalities incorporate a variety of data collection techniques to ensure a comprehensive understanding of participants' experiences. This included visual arts, digital media, and physical artefacts, which together provided a multi-faceted view of the impact of ART adherence. The research methodology was highly participatory and reflexive, involving continuous reflection and journalling by both researchers and participants. This iterative process ensured that the data collected was thorough and reflective of the participants' genuine experiences. The study emphasised data adequacy over sample size, focusing on the depth and variety of evidence collected, which aligns with qualitative research principles that prioritise rich, detailed data over numerical generalisability. Finally, the use of creative synthesis, where different pieces of information and artistic materials were combined to form new wholes, allowed for deep interpretation, and understanding of the data. This method supported the reflexivity and trustworthiness of the study findings, ensuring a robust and credible exploration of the impact of PPI on young women's adherence to ART.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study is one of the first to go beyond barriers and facilitators to adherence for people living with HIV to explore the role of the material environment in depth. Young women living in challenging communities in Cape Town, South Africa, struggled with adherence due to environmental and community-level factors such as violence, economic inequities, lack of social support, inadequate health systems, and disadvantageous structural community layouts. Risking their lives to travel to clinics in unsafe communities, silencing their voices in their households, and being at high risk for domestic violence and femicide in their romantic relationships demands of us to bring to light their experiences, which is in line with Sustainable Development Goals (SDG) 5 (gender equality) and ending all forms of discrimination against all women and girls in private and public spheres. Working from a multimodal perspective allowed us to venture deeper together and to open the research space for multiple stakeholders for rich engagement throughout the research process. There is a myriad of reasons to adhere or not adhere and each reason carrying varying weightings. Ultimately, understanding how these reasons come together in an assemblage, dependent on context and the moment in time, that provides new insights in how the complexity of adherence to therapy should be addressed. Young women perceived that regardless of their circumstances the final decision was theirs to make, and their motivations \u0026lsquo;to live\u0026rsquo; could trump any barrier. Adopting a co-production and multimodal approach in our participatory methodology enabled deeper relationships between research team members, leading to in depth introspection and disclosure, and a safe, transparent, and socially just research environment. We implore researchers to pay more attention to the material environment of the people they study and invite more transdisciplinary and multimodal methods to understand and respond to the unique needs of YWLPHIV.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eART: Antiretroviral Treatment\u003c/p\u003e\n\u003cp\u003eHIV: Human Immunodeficiency Virus\u003c/p\u003e\n\u003cp\u003ePPI: Patient and Public Involvement\u003c/p\u003e\n\u003cp\u003eSA: South Africa\u003c/p\u003e\n\u003cp\u003eSDG: Sustainable Development Goals\u003c/p\u003e\n\u003cp\u003eTB: Tuberculosis\u003c/p\u003e\n\u003cp\u003eUNAIDS: The Joint United Nations Programme on HIV/AIDS\u003c/p\u003e\n\u003cp\u003eYWLPHIV: Young Women Living with Perinatal Human Immunodeficiency Syndrome\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study was approved by the Stellenbosch University Health Research Ethics Committee (S20/03/070). Co-researcher participants were provided with a Participant Information Sheet outlining the study and the use and storage of their data. Participants had to consent to taking part prior to participation in the study.\u003c/p\u003e\n\n\u003cp\u003e\u003cstrong\u003eConsent for publication.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants consented to the publication of the anonymous data they provided and visual data collected during the study, prior to the data collection. The details of this were indicated on the Participant Information Sheet and Participant Consent Form.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMost data generated or analysed during this study are included in this published article [and its supplementary information files]. The larger datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe Author(s) declare(s) that there is no conflict of interest.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis work was supported by the Global Minds Scholarship, KU Leuven [grant number 3H180579]. The funder had no role in the design of the study and in writing the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eConceptualisation: LH, KH, TY, RJ, RD, RD, [Anonymised Co-researchers: AH, RP, LDB, AM, TR, TM]. Data collection: LH, RJ, RD, RD, [Anonymised Co-researchers: AH, RP, LDB, AM, TR, TM]. Analysis: LH, RJ, RD, RD, [Anonymised Co-researchers: AH, RP, LDB, AM, TR, TM]. Writing \u0026ndash; original draft: LH, KH, TY. Supervision: KH, TY. Funding acquisition: LH, KH, TY. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgments\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe would like to acknowledge Prof Catharina Mathei (1966-2021) who was a part of the research team that contributed to the research proposal. We are indebted to the co-research team and their families whose real names we cannot mention here to protect their identities \u0026ndash;Mia, Cassidy, Tony, Nora, Thandi, Manda, and Chloe (pseudo names). We are especially grateful to the curators of IZIKO Museum Lynn Abrahams, Jeffery Mottie, and Jeanine van Wyk, clinic managers, doctors, nurses, and support staff who assisted us with recruitment and helped us to produce our story.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; information\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eLynn Hendricks conducts research and teaches in the Division of Health Systems and Public Health in the Department of Global Health, Faculty of Medicine and Health Sciences at Stellenbosch University and the Social, Methodological, Theoretical and Kreative research group in the Department of Social Sciences, KU Leuven. She is a practising Research Psychologist and previous Global Minds PhD fellow at KU Leuven and Stellenbosch University. Currently, she holds a fellowship with Gilead Public Health and with Microsoft Africa. Her interests are in the conduct of creative, transdisciplinary, and co-productive research within communities.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTaryn Young, a distinguished Professor at Stellenbosch University, has a passion to enhance capacity to advance the conduct of and use of relevant research. She has experience in coordinating international and national collaborative projects which facilitate the use of best evidence in healthcare policy and practice. She leads the Centre for Evidence-Based Health Care, Division of Epidemiology and Biostatistics, and the Department of Global Health, at the Faculty of Medicine and Health Sciences, Stellenbosch University, South Africa.\u003c/p\u003e\n\u003cp\u003eRobin Julies has a Master\u0026apos;s degree in Psychology and a professional Mental Health degree (BPsych Hons). She has worked with key populations in various communities. She conducts research with a gender focus, Intimate Partner Violence (IPV) and HIV prevention in AGYW. She is published in these areas. Her Masters focused on men\u0026rsquo;s experiences of IPV and the available literature. She runs a research and capacity-building consultancy, African Population (Behavioural) Research Institute.\u003c/p\u003e\n\u003cp\u003eRizqah Dollie is an applied visual anthropologist boasting a journalism qualification. Rizqah has lectured History of Art, Photography and Visual Anthropology at several tertiary institutions and conducts Photovoice workshops for academic research projects. She has worked on a multitude of community engagement and media initiatives for the past twenty years. Rizqah is a practicing visual anthropologist, social documentarian, photographer, lecturer, and videographer. Innovative storytelling and informing communities is key to her projects.\u003c/p\u003e\n\u003cp\u003eReshaan is an applied visual anthropologist with an honours in community newspapers and their influence on society from the University of the Western Cape. He has worked as a practising researcher and visual anthropologist for thirteen years. Reshaan is a practising social engagement visualist with a vested interest in the mysticism of spiritual practices and ritual content. His current focus area is documentary filmmaking. He is completing a Masters which was converted to a PhD in Visual Ethnographies at The Desmond Tutu Centre for Religion and Social Justice.\u003c/p\u003e\n\u003cp\u003eKarin Hannes is a professor at the Faculty of Social Sciences, KU Leuven and specializes in transdisciplinary studies. She applies an inclusive, co-creative perspective to the development of methods and models for positive change in society in fields such as urban and sustainable development, socially engaged artistic practice, public health, and community-based research. She approaches health and social welfare topics through arts-based, multi-sensory, place-based and future based research inquiry. Prof. Hannes is particularly known for her contributions to the development of qualitative evidence synthesis approaches and the inclusion of art in systematic reviews.\u003c/p\u003e\n"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eAmsden, J. and Vanwynsberghe, R. (2005) \u0026lsquo;Community mapping as a research tool with youth\u0026rsquo;, \u003cem\u003ehttp://dx.doi.org/10.1177/1476750305058487\u003c/em\u003e, 3(4), pp. 357\u0026ndash;381. doi: 10.1177/1476750305058487.\u003c/li\u003e\n\u003cli\u003eArchibald, M. M. (2022) \u0026lsquo;Interweaving Arts-Based, Qualitative and Mixed Methods Research: Showcasing Integration and Knowledge Translation Through Material and Narrative Reflection\u0026rsquo;, \u003cem\u003ehttps://doi.org/10.1177/19408447221097063\u003c/em\u003e, 15(2), pp. 168\u0026ndash;198. doi: 10.1177/19408447221097063.\u003c/li\u003e\n\u003cli\u003eArchibald, M. M., Caine, V. and Scott, S. D. (2014) \u0026lsquo;The Development of a Classification Schema for Arts-Based Approaches to Knowledge Translation\u0026rsquo;, \u003cem\u003eWorldviews on Evidence-Based Nursing\u003c/em\u003e, 11(5), pp. 316\u0026ndash;324. doi: 10.1111/WVN.12053.\u003c/li\u003e\n\u003cli\u003eAVERT (2021) \u003cem\u003eGlobal HIV and AIDS statistics | Avert\u003c/em\u003e. Available at: https://www.avert.org/global-hiv-and-aids-statistics (Accessed: 21 November 2021).\u003c/li\u003e\n\u003cli\u003eBarad, K. (2003) \u0026lsquo;Posthumanist performativity: Toward an understanding of how matter comes to matter\u0026rsquo;, \u003cem\u003eSigns\u003c/em\u003e, 28(3), pp. 801\u0026ndash;831. doi: 10.1086/345321.\u003c/li\u003e\n\u003cli\u003eBarad, K. (2007) \u003cem\u003eMeeting the Universe Halfway: Quantum Physics and the Entanglement of Matter\u003c/em\u003e. Duke University Press. Available at: https://books.google.co.za/books/about/Meeting_the_Universe_Halfway.html?id=H41WUfTU2CMC\u0026amp;printsec=frontcover\u0026amp;source=kp_read_button\u0026amp;hl=en\u0026amp;redir_esc=y#v=onepage\u0026amp;q\u0026amp;f=false (Accessed: 22 November 2021).\u003c/li\u003e\n\u003cli\u003eBarroso, J. and Sandelowski, M. (2016) \u0026lsquo;Sample Reporting in Qualitative Studies of Women with HIV Infection\u0026rsquo;, \u003cem\u003ehttp://dx.doi.org/10.1177/1525822X03257392\u003c/em\u003e, 15(4), pp. 386\u0026ndash;404. doi: 10.1177/1525822X03257392.\u003c/li\u003e\n\u003cli\u003eBaumann, S. E. \u003cem\u003eet al.\u003c/em\u003e (2019) \u0026lsquo;Is Film as a Research Tool the Future of Public Health? A Review of Study Designs, Opportunities, and Challenges\u0026rsquo;, \u003cem\u003ehttps://doi.org/10.1177/1049732319871251\u003c/em\u003e, 30(2), pp. 250\u0026ndash;257. doi: 10.1177/1049732319871251.\u003c/li\u003e\n\u003cli\u003eBrittain, K. \u003cem\u003eet al.\u003c/em\u003e (2019) \u0026lsquo;Behavioural health risks during early adolescence among perinatally HIV-infected South African adolescents and same-age, HIV-uninfected peers\u0026rsquo;, \u003cem\u003eAIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV\u003c/em\u003e. doi: 10.1080/09540121.2018.1533233.\u003c/li\u003e\n\u003cli\u003eBrown, C. S. (2017) \u003cem\u003eDiscrimination in childhood and adolescence: A developmental intergroup approach\u003c/em\u003e, \u003cem\u003eDiscrimination in Childhood and Adolescence: A Developmental Intergroup Approach\u003c/em\u003e. Taylor and Francis. doi: 10.4324/9781315208381/DISCRIMINATION-CHILDHOOD-ADOLESCENCE-CHRISTIA-SPEARS-BROWN.\u003c/li\u003e\n\u003cli\u003eCluver, L. D. \u003cem\u003eet al.\u003c/em\u003e (2022) \u0026lsquo;From surviving to thriving: integrating mental health care into HIV, community, and family services for adolescents living with HIV\u0026rsquo;, \u003cem\u003eThe Lancet. Child \u0026amp; adolescent health\u003c/em\u003e, 6(8), pp. 582\u0026ndash;592. doi: 10.1016/S2352-4642(22)00101-8.\u003c/li\u003e\n\u003cli\u003eDierckx, C. \u003cem\u003eet al.\u003c/em\u003e (2021) \u0026lsquo;The third sphere: Reconceptualising allyship in community-based participatory research praxis\u0026rsquo;, \u003cem\u003eQualitative Research in Psychology\u003c/em\u003e, 18(4), pp. 473\u0026ndash;497. doi: 10.1080/14780887.2020.1854402.\u003c/li\u003e\n\u003cli\u003eEdwards, R. and I\u0026rsquo;anson, J. (2020) \u0026lsquo;Using Artifacts and Qualitative Methodology to Explore Pharmacy Students\u0026rsquo; Learning Practices\u0026rsquo;, \u003cem\u003eAmerican Journal of Pharmaceutical Education\u003c/em\u003e, 84(1), pp. 47\u0026ndash;59. doi: 10.5688/AJPE7082.\u003c/li\u003e\n\u003cli\u003eEshun-Wilson, I. \u003cem\u003eet al.\u003c/em\u003e (2019) \u0026lsquo;Being HIV positive and staying on antiretroviral therapy in Africa: A qualitative systematic review and theoretical model\u0026rsquo;, \u003cem\u003ePLoS ONE\u003c/em\u003e, 14(1). doi: 10.1371/journal.pone.0210408.\u003c/li\u003e\n\u003cli\u003eEvans, J. and Jones, P. (2011) \u0026lsquo;The walking interview: Methodology, mobility and place\u0026rsquo;, \u003cem\u003eApplied Geography\u003c/em\u003e, 31(2), pp. 849\u0026ndash;858. doi: 10.1016/J.APGEOG.2010.09.005.\u003c/li\u003e\n\u003cli\u003eEvans, K. (2007) \u0026lsquo;Concepts of bounded agency in education, work, and the personal lives of young adults\u0026rsquo;, \u003cem\u003eInternational Journal of Psychology\u003c/em\u003e, 42(2), pp. 85\u0026ndash;93. doi: 10.1080/00207590600991237.\u003c/li\u003e\n\u003cli\u003eFox, N. J. and Alldred, P. (2016) \u0026lsquo;Sociology, environment and health: a materialist approach\u0026rsquo;, \u003cem\u003ePublic Health\u003c/em\u003e, 141, pp. 287\u0026ndash;293. doi: 10.1016/j.puhe.2016.09.015.\u003c/li\u003e\n\u003cli\u003eFrederick Erikson (1985) \u003cem\u003eQualitative Methods in Research on Teaching\u003c/em\u003e. 81. Michigan: The Institute for Research on Teaching. Available at: https://edwp.educ.msu.edu/research/wp-content/uploads/sites/10/2020/11/op081.pdf.\u003c/li\u003e\n\u003cli\u003eFrescura, L. \u003cem\u003eet al.\u003c/em\u003e (2022) \u0026lsquo;Achieving the 95 95 95 targets for all: A pathway to ending AIDS\u0026rsquo;, \u003cem\u003ePLOS ONE\u003c/em\u003e, 17(8), p. e0272405. doi: 10.1371/JOURNAL.PONE.0272405.\u003c/li\u003e\n\u003cli\u003eFugard, A. J. B. and Potts, H. W. W. (2015) \u0026lsquo;Supporting thinking on sample sizes for thematic analyses: a quantitative tool\u0026rsquo;, \u003cem\u003eInternational Journal of Social Research Methodology\u003c/em\u003e, 18(6), pp. 669\u0026ndash;684. doi: 10.1080/13645579.2015.1005453.\u003c/li\u003e\n\u003cli\u003eGerber, N. \u003cem\u003eet al.\u003c/em\u003e (2022) \u003cem\u003eSustaining life on earth: Arts-based responses to the lived experiences of COVID-19 -Part II\u003c/em\u003e.\u003c/li\u003e\n\u003cli\u003eHaluza, D., Sch\u0026ouml;nbauer, R. and Cervinka, R. (2014) \u0026lsquo;Green perspectives for public health: A narrative review on the physiological effects of experiencing outdoor nature\u0026rsquo;, \u003cem\u003eInternational Journal of Environmental Research and Public Health\u003c/em\u003e, 11(5), pp. 5445\u0026ndash;5461. doi: 10.3390/IJERPH110505445.\u003c/li\u003e\n\u003cli\u003eHannes, K. (2023) \u0026lsquo;Tactics in Support of the Strategy to Include Artistic Research as Evidence in Systematic Reviews\u0026rsquo;, \u003cem\u003eInternational Journal of Qualitative Methods\u003c/em\u003e, 22, pp. 1\u0026ndash;11. doi: 10.1177/16094069231176391.\u003c/li\u003e\n\u003cli\u003eHarris, A. and Guillemin, M. (2011) \u0026lsquo;Developing Sensory Awareness in Qualitative Interviewing\u0026rsquo;, \u003cem\u003ehttp://dx.doi.org/10.1177/1049732311431899\u003c/em\u003e, 22(5), pp. 689\u0026ndash;699. doi: 10.1177/1049732311431899.\u003c/li\u003e\n\u003cli\u003eHeestermans, T. \u003cem\u003eet al.\u003c/em\u003e (2016) \u0026lsquo;Determinants of adherence to antiretroviral therapy among HIV-positive adults in sub-Saharan Africa: a systematic review\u0026rsquo;, \u003cem\u003eBMJ Global Health\u003c/em\u003e, 1(4), p. e000125. doi: 10.1136/bmjgh-2016-000125.\u003c/li\u003e\n\u003cli\u003eHendricks, L. \u003cem\u003eet al.\u003c/em\u003e (2022) \u003cem\u003eMore than a pill\u003c/em\u003e. South Africa: YouTube. Available at: https://www.youtube.com/watch?v=zJVrhuNDuO0.\u003c/li\u003e\n\u003cli\u003eHendricks, L. A. \u003cem\u003eet al.\u003c/em\u003e (2022) \u0026lsquo;Storyboarding HIV Infected Young People\u0026rsquo;s Adherence to Antiretroviral Therapy in Lower- to Upper Middle-Income Countries: A New-Materialist Qualitative Evidence Synthesis\u0026rsquo;, \u003cem\u003eInternational Journal of Environmental Research and Public Health\u003c/em\u003e, 19(18), p. 11317. doi: 10.3390/IJERPH191811317/S1.\u003c/li\u003e\n\u003cli\u003eHendricks, L., Eshun-Wilson, I. and Rohwer, A. (2021) \u0026lsquo;A mega-aggregation framework synthesis of the barriers and facilitators to linkage, adherence to ART and retention in care among people living with HIV\u0026rsquo;, \u003cem\u003eSystematic Reviews\u003c/em\u003e, 10(1), pp. 1\u0026ndash;28. doi: 10.1186/s13643-021-01582-z.\u003c/li\u003e\n\u003cli\u003eKondo, M. C. \u003cem\u003eet al.\u003c/em\u003e (2018) \u0026lsquo;Urban Green Space and Its Impact on Human Health\u0026rsquo;, \u003cem\u003eInternational Journal of Environmental Research and Public Health 2018, Vol. 15, Page 445\u003c/em\u003e, 15(3), p. 445. doi: 10.3390/IJERPH15030445.\u003c/li\u003e\n\u003cli\u003eKonstantina Vasileiou \u003cem\u003eet al.\u003c/em\u003e (2018) \u0026lsquo;Characterising and justifying sample size sufficiency in interview-based studies: systematic analysis of qualitative health research over a 15-year period\u0026rsquo;, \u003cem\u003eBMC Medical Research Methodology\u003c/em\u003e, 18(1), pp. 1\u0026ndash;18.\u003c/li\u003e\n\u003cli\u003eKuo, M. (2015) \u0026lsquo;How might contact with nature promote human health? Promising mechanisms and a possible central pathway\u0026rsquo;, \u003cem\u003eFrontiers in Psychology\u003c/em\u003e, 6. doi: 10.3389/FPSYG.2015.01093.\u003c/li\u003e\n\u003cli\u003eLaurenzi, C. A. \u003cem\u003eet al.\u003c/em\u003e (2020) \u0026lsquo;Preventing mental health conditions in adolescents living with HIV: an urgent need for evidence\u0026rsquo;, \u003cem\u003eJournal of the International AIDS Society\u003c/em\u003e, 23(Suppl 5). doi: 10.1002/JIA2.25556.\u003c/li\u003e\n\u003cli\u003eMaapalo, P. and \u0026Oslash;stern, P. (2018) \u0026lsquo;Education Inquiry The agency of wood: multisensory interviews with Art and Crafts teachers in a post-humanistic and new-materialistic perspective Pauliina Maapalo \u0026amp; Tone Pernille \u0026Oslash;stern The agency of wood: multisensory interviews with Art and Crafts teachers in a post-humanistic and new-materialistic perspective\u0026rsquo;. doi: 10.1080/20004508.2018.1424492.\u003c/li\u003e\n\u003cli\u003eMackworth-Young, C. R. S., Bond, V. and Wringe, A. (2020) \u0026lsquo;Medical Anthropology Cross-Cultural Studies in Health and Illness ISSN: (Print) (Online) Journal homepage: https://www.tandfonline.com/loi/gmea20 Secrets and Silence: Agency of Young Women Managing HIV Disclosure\u0026rsquo;. doi: 10.1080/01459740.2020.1764551.\u003c/li\u003e\n\u003cli\u003eMorrow, S. L. (2005) \u0026lsquo;Quality and trustworthiness in qualitative research in counseling psychology.\u0026rsquo;, \u003cem\u003eJournal of Counseling Psychology\u003c/em\u003e, 52(2), p. 250. doi: 10.1037/0022-0167.52.2.250.\u003c/li\u003e\n\u003cli\u003eNel, J. \u003cem\u003eet al.\u003c/em\u003e (2023) \u003cem\u003eSouthern African HIV Clinicians Society Guidelines for Antiretroviral Therapy in Adults : 2023 update\u003c/em\u003e. Available at: file:///C:/Users/lynnah/Dropbox/PC (2)/Downloads/SAHCS Adult ART 2023 Guidelines.pdf.\u003c/li\u003e\n\u003cli\u003eNichols, J., Paintsil, E. and Steinmetz, A. (2017) \u0026lsquo;Impact of HIV-Status Disclosure on Adherence to Antiretroviral Therapy Among HIV-Infected Children in Resource-Limited Settings: A Systematic Review\u0026rsquo;, \u003cem\u003eAIDS \u0026amp; Behavior\u003c/em\u003e, 21(1 PG-59\u0026ndash;69), pp. 59\u0026ndash;69. doi: 10.1007/s10461-016-1481-z.\u003c/li\u003e\n\u003cli\u003eNyogea, D. \u003cem\u003eet al.\u003c/em\u003e (2015) \u0026lsquo;Determinants of antiretroviral adherence among HIV positive children and teenagers in rural Tanzania: A mixed methods study\u0026rsquo;, \u003cem\u003eBMC Infectious Diseases\u003c/em\u003e, 15(1), pp. 1\u0026ndash;13. doi: 10.1186/s12879-015-0753-y.\u003c/li\u003e\n\u003cli\u003ePeltzer, K. \u003cem\u003eet al.\u003c/em\u003e (2018) \u0026lsquo;Fertility intentions of prenatal and postpartum HIV-positive women in primary care in Mpumalanga province, South Africa: A longitudinal study\u0026rsquo;, \u003cem\u003eHIV/AIDS - Research and Palliative Care\u003c/em\u003e. doi: 10.2147/HIV.S153212.\u003c/li\u003e\n\u003cli\u003ePink, S. (2012) \u0026lsquo;Interpreting Multisensory Research: The Place of Analysis in Sensory Ethnography\u0026rsquo;, \u003cem\u003eDoing Sensory Ethnography\u003c/em\u003e, pp. 119\u0026ndash;131. doi: 10.4135/9781446249383.N8.\u003c/li\u003e\n\u003cli\u003eRohwer, A. \u003cem\u003eet al.\u003c/em\u003e (2021) \u0026lsquo;Testing for saturation in qualitative evidence syntheses: An update of HIV adherence in Africa\u0026rsquo;, \u003cem\u003ePLOS ONE\u003c/em\u003e, 16(10), p. e0258352. doi: 10.1371/JOURNAL.PONE.0258352.\u003c/li\u003e\n\u003cli\u003eSharp, J., Pollock, V. and Paddison, R. (2016) \u0026lsquo;Just Art for a Just City: Public Art and Social Inclusion in Urban Regeneration\u0026rsquo;, \u003cem\u003ehttp://dx.doi.org/10.1080/00420980500106963\u003c/em\u003e, 42(5\u0026ndash;6), pp. 1001\u0026ndash;1023. doi: 10.1080/00420980500106963.\u003c/li\u003e\n\u003cli\u003eShepley, M. \u003cem\u003eet al.\u003c/em\u003e (2019) \u0026lsquo;The Impact of Green Space on Violent Crime in Urban Environments: An Evidence Synthesis\u0026rsquo;, \u003cem\u003eInternational Journal of Environmental Research and Public Health\u003c/em\u003e, 16(24). doi: 10.3390/IJERPH16245119.\u003c/li\u003e\n\u003cli\u003eSimbayi, L., Zuma, K. and Zungu, N. (2019) \u003cem\u003eSouth African National HIV Prevalence, Incidence, Behaviour and Communication Survey, 2017: towards achieving the UNAIDS 90-90-90 targets\u003c/em\u003e. Edited by S. Randall. Cape Town: Human Sciences Research Council Press. Available at: https://repository.hsrc.ac.za/handle/20.500.11910/15052.\u003c/li\u003e\n\u003cli\u003eSlogrove, A. L. \u003cem\u003eet al.\u003c/em\u003e (2018) \u0026lsquo;The epidemiology of adolescents living with perinatally acquired HIV: A cross-region global cohort analysis.\u0026rsquo;, \u003cem\u003ePLoS Medicine\u003c/em\u003e.\u003c/li\u003e\n\u003cli\u003eStaniszewska, S., Brett, J., Mockford, C., \u0026amp; Barber, R. (2011). The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. \u003cem\u003eInternational journal of technology assessment in health care\u003c/em\u003e, \u003cem\u003e27\u003c/em\u003e(4), 391\u0026ndash;399. https://doi.org/10.1017/S0266462311000481\u003c/li\u003e\n\u003cli\u003eSteimer, T. (2022) \u0026lsquo;The biology of fear- and anxiety-related behaviors\u0026rsquo;, \u003cem\u003ehttps://doi.org/10.31887/DCNS.2002.4.3/tsteimer\u003c/em\u003e, 4(3), pp. 231\u0026ndash;249. doi: 10.31887/DCNS.2002.4.3/TSTEIMER.\u003c/li\u003e\n\u003cli\u003eTuckett, A. G. and Stewart, D. E. (2014) \u0026lsquo;Collecting qualitative data: Part I Journal as a method: experience, rationale and limitations\u0026rsquo;, \u003cem\u003ehttp://dx.doi.org/10.5172/conu.16.1-2.104\u003c/em\u003e, 16(1\u0026ndash;2), pp. 104\u0026ndash;113. doi: 10.5172/CONU.16.1-2.104.\u003c/li\u003e\n\u003cli\u003eUN General Assembly (2015) \u003cem\u003eTransforming our World: The 2030 Agenda for Sustainable Development | Department of Economic and Social Affairs\u003c/em\u003e. Available at: https://sdgs.un.org/publications/transforming-our-world-2030-agenda-sustainable-development-17981 (Accessed: 28 February 2022).\u003c/li\u003e\n\u003cli\u003eVasquez, G. (2004) \u003cem\u003eCentre For Social Science Research Body Perceptions of HIV And Aids: The Memory Box Project\u003c/em\u003e. Available at: http://www.uct.ac.za/depts/cssr/pubs.html (Accessed: 20 March 2023).\u003c/li\u003e\n\u003cli\u003eWeinstein, N., Przybylski, A. K. and Ryan, R. M. (2009) \u0026lsquo;Can nature make us more caring? Effects of immersion in nature on intrinsic aspirations and generosity\u0026rsquo;, \u003cem\u003ePersonality and Social Psychology Bulletin\u003c/em\u003e, 35(10), pp. 1315\u0026ndash;1329. doi: 10.1177/0146167209341649.\u003c/li\u003e\n\u003cli\u003eZerbe, K. J. (2019) \u0026lsquo;The Secret Life of Secrets: Deleterious Psychosomatic Effects on Patient and Analyst\u0026rsquo;, \u003cem\u003ehttps://doi.org/10.1177/0003065119826624\u003c/em\u003e, 67(1), pp. 185\u0026ndash;214. doi: 10.1177/0003065119826624.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"research-involvement-and-engagement","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"riae","sideBox":"Learn more about [Research Involvement and Engagement](http://researchinvolvement.biomedcentral.com/)","snPcode":"40900","submissionUrl":"https://submission.nature.com/new-submission/40900/3","title":"Research Involvement and Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Adherence, perinatal HIV, new materialism, young women, participatory research, patient and public involvement","lastPublishedDoi":"10.21203/rs.3.rs-4493670/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4493670/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground:\u003c/strong\u003e Young women living with perinatal infections of the Human Immunodeficiency Virus (YWLPHIV) in low- and middle-income countries are more likely to be challenged by social and health inequities, which can make adherence to life-long treatment difficult. We aimed to learn more about how YWLPHIV in Cape Town negotiated their adherence to antiretroviral treatment (ART) within their material environments.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods: \u003c/strong\u003eWe adopted a multisensory arts-based community participatory approach and used visual and digital mediums for data-collection and analytical purposes. We developed an Adherence Assemblage model to guide our study. The co-research team consisted of three academics, seven YWLPHIV (although they approved the study they could not be named as authors to protect their identities), one counsellor and two visual ethnographers.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults: \u003c/strong\u003eWe co-creatively synthesised our findings into one research documentary and five co-creative artworks. We synthesised four storylines: ‘living with a (un)exposed HIV secret’, ‘multisensory experience of adherence’, ‘things that matter in adherence’, and ‘engaging spaces and places’. Things such as the pill itself were perceived as triggers for associated memories and evoked emotional responses, impacting the adherence behaviours of YWLPHIV. At times, non-adherence was used as an act of control, with young women claiming power by rejecting the pills. Besides the more obvious lines of argument on power dynamics, the findings suggest that materiality influences adherence too. However, it is seldom used as an analytical concept to investigate challenges related to ART.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions:\u003c/strong\u003e In conclusion, understanding the material environment's role in adherence is crucial for developing more effective support systems for YWLPHIV. Further research that prioritises the specific needs of YWLPHIV emotional, cognitive, and psychosocial development, while paying attention to the material environment is needed.\u003c/p\u003e","manuscriptTitle":"‘More than a pill’: A qualitative co-exploration of the things that matter in young women's stories of adherence to antiretroviral treatment in South Africa","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-07-09 17:12:12","doi":"10.21203/rs.3.rs-4493670/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-06-21T17:45:52+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-06-21T17:42:07+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-06-20T04:48:23+00:00","index":"","fulltext":""},{"type":"submitted","content":"Research Involvement and Engagement","date":"2024-05-29T02:01:45+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"research-involvement-and-engagement","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"riae","sideBox":"Learn more about [Research Involvement and Engagement](http://researchinvolvement.biomedcentral.com/)","snPcode":"40900","submissionUrl":"https://submission.nature.com/new-submission/40900/3","title":"Research Involvement and Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"492700a1-1944-40c2-8371-dbbd1954624d","owner":[],"postedDate":"July 9th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-06-16T16:06:21+00:00","versionOfRecord":{"articleIdentity":"rs-4493670","link":"https://doi.org/10.1186/s40900-025-00712-4","journal":{"identity":"research-involvement-and-engagement","isVorOnly":false,"title":"Research Involvement and Engagement"},"publishedOn":"2025-06-12 15:57:43","publishedOnDateReadable":"June 12th, 2025"},"versionCreatedAt":"2024-07-09 17:12:12","video":"","vorDoi":"10.1186/s40900-025-00712-4","vorDoiUrl":"https://doi.org/10.1186/s40900-025-00712-4","workflowStages":[]},"version":"v1","identity":"rs-4493670","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4493670","identity":"rs-4493670","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}