More Than a Pill: Producing the story of adherence to ART for young women living with perinatal HIV
Abstract
Due to their gender and age, young women in South Africa must often negotiate health and safety in their homes and communities. This is even more challenging for young women living with HIV. This study explores the in-depth role of the physical, social and material environment as one of the first studies to go beyond barriers and facilitators to adherence for people living with HIV. We set out to learn more about young women perinatally infected with HIV in Cape Town: their experience with HIV and how they negotiated their adherence to their treatment regimens within their environments. Using a multisensorial arts-based community participatory study, we co-produced a film with the help of young women, community clinics, governmental decision-makers, the National Museum, and videographers. We navigated the Cape townships together and shared our work through curated community exhibitions and film screenings at the University.
Introduction
This project was inspired by a culmination of evidence-informed gaps in HIV adherence research, a passion for innovative research, and a need for me to give back to my community of origin in a very tangible way: through my work. My role was PI, friend, videographer, and project manager. The project was tailored to be an inclusive, educational, and beneficial experience for all who participated. Two community clinics assisted us with recruitment and provided access to conduct filming and interviews at the clinic, as well as allowing consultation with medical staff throughout the project. We partnered with the Ward Councilors of the City of Cape Town to provide safety and security and to open access to municipal facilities and media throughout the project. We also partnered with community members as liaisons to learn how different perspectives contribute to the environmental experience. We partnered with the National IZIKO Museum who taught the young women about curating exhibitions, as well as the Dollie House, available to the young women to assist with their home recordings and community filming. Most importantly, we partnered with young women as the co-decision-makers on the implementation plan, film production, and dissemination throughout.
Who should benefit?
Due to economic and educational inequality, young people in South Africa are especially vulnerable. Amid disproportionate health inequalities, young women - especially those living with infectious diseases - navigate discriminatory societies that are a barrier to life-saving health care treatments such as ART. In this study, we relied on arts-based methods of filmmaking, storytelling, multisensorial interviews, and a community exhibition. We worked with 7 young women with perinatal infections of HIV, aged 17-24 and living in 3 violent and challenging township communities in Cape Town, South Africa. We recruited participants through community clinics and invited them onto the project as co-researchers. Using snowball sampling, we extended our inquiry to other stakeholders including family members, partners, peers, community members, medical staff, academics, political decision makers, and funders. In total, we conducted 74 interviews with 31 participants over 2 years and co-produced 2 documentaries.
Much research has gone into the barriers and facilitators of medication adherence to ART for young people living with HIV, but rarely has there been precedence on theoretical innovation and the holistic systemic approach which acknowledges the Anthropocene and consequential climate change. At the forefront of our findings were the social determinants of health inequity in terms of unsafe communities: poverty, food insecurity, economic instability, and educational inequalities. On a daily basis, young women navigate a variety of things in their environment, such as dead bodies from gang violence, guns and drugs on the porch of the front doors, travelling in overcrowded taxis with people who live close by, the high risk of unwanted disclosure when travelling to the clinic, the hard benches, or waiting in the cold and rain at the clinic to collect medicines. These factors were very real realities of adherence to ART, and are often not critically explored in health research. To innovate impactful interventions that can respond on a larger scale, we must start delving deeper. This research highlights how global systemic responses can uplift communities, cultivate safe environments, and address health inequities.
Engagement
This project used the values of the third sphere, inviting participants as allies and co-researchers. We developed connections and friendships and abandoned our individual agendas in favour of a joint one. In the proposal, we clearly outlined the data collection plan would be flexible and open to the decision of the co-research team.
Once we joined as a team with our participants, we decided what we wanted to explore, what we wanted to learn, what we wanted to share with others, and what we would keep private just for our group. In a few days, we had trust in our group and we communicated daily - we still do. We met at parks, cafes, each other’s houses, the University - anywhere we decided would be fitting for the day - and we had the freedom to tailor our individual contributions to the larger project. Because we became personally connected, the families of the young women got to know the academic researchers and quickly became comfortable, inviting us to family gatherings and events in their broader circle. This was fascinating to other researchers in the medical faculty who are not accustomed to personal engagement, and it was appreciated by the community.
At the end of the project, we held a community screening of the video we co-produced and invited political leaders, health care workers, academics, and family members of the young women. The screening event was personal, professional, and red carpet. We also had an art exhibition that showcased the digital prints and body maps from the study, which was made by our co-research team and curated by the National Museum. At the event, we gave the audience a chance to ask questions and make comments. Mothers, fathers, brothers, and peers shared tears of pride for the young women.
The video has been included now as a part of medical students’ early training, and the Department of Health has included it in their recommended videos for school learners. The impact of this project has been visible in the co-research team’s lives, but also beyond in the communities, academia, and national department. The co-research team is acknowledged in the credit of the videos and on conference proceedings. Furthermore, all our names will be included as part of the author team of a forthcoming novella.
Research
Working with young women as co-researchers introduced a depth of research often at risk when researchers go in with a very focused question. We did not ask the young women what the barriers or facilitators of adherence was: we asked what it is like to take your medication, and what life with HIV is like. From there, we explored whichever direction their story took us - first individually, and then within the group. We found a lot more pertaining to the social determinants of health and these insights contributed to the evolution of a new model of adherence we propose in an upcoming paper. We based the model on existing evidence in the literature and through our 4-year study. Though our discussions with medical staff found them well-informed of the social stigmas and myths attached to young women living with HIV, there was almost no attention paid to the relationship between housing structures, pill size, colour, types of food accessible, the physical features of the clinic, roads, and pathways, or how these affect the assemblage or configuration of the behaviour of adherence.
Although these may be out of the control of health care professionals, there are some with which they can support, such as the experience within the clinic and clinic room, the opening and closing times for young women, how services are managed to protect young women, and the holistic counselling and services that can be provided. This study provides an opportunity for patients, their families, communities, academia, NGOs, governments, and media to come together and share their experiences and perceptions of how environments for young women can support the health and health care decision-making. Using a personal transformative research approach and using film, art, and participatory research, we were able to create research outputs that provoked reflection and allowed for easy uptake for others to spark conversation and action. This research approach was engaging for all stakeholders, and we aim to conduct more studies using this approach as well as mentor emerging researchers and community-led researchers in the method.
