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Project

Envisioning enabling environments for young women with perinatal infections of HIV in Africa: A participatory creative new-materialist approach.

Background: Targeted due to gender and age in South Africa, young women often must negotiate health and safety in their homes and communities – this is even more challenging for young women living with perinatal infections of Human Immunodeficiency Virus (YWLPHIV). Young people living with perinatal infections face a chronic disease, with treatment including adherence to lifelong ART. We set out to learn more about young women perinatally infected with HIV in Cape Town, their experience with Human Immunodeficiency Virus (HIV), how they negotiated adherence to antiretroviral treatment (ART) regimens within their environments, and how environments could be enabled to support their adherence.  Further, we wanted to explore how allyship could be enhanced in participatory research by including multimodal methods and creative and artistic visual approaches.

Methods: This study used qualitative evidence synthesis (QES) and multisensory arts-based community participatory research methods, working together with six young women as allies. In phase 1, we synthesised the evidence landscape on adherence to ART. In phase 2, we conceptualised the Adherence Assemblage conceptual model of ART and the methodological approach of the third sphere for allyship. In phase 3, we co-explored with YWLPHIV their experiences and co-produced creative artworks and a research documentary, More than a pill. In phase 4, we focused on recommendations for enabling environments. Our multimodal approach included methods such as QES, artistic co-creations, body mapping, collaborative filmmaking, collecting material objects of meaning, community mapping, individual and group conversations including walking and driving interviews, journalling, multisensory home and clinic interviews, a research camp, and storytelling. Analytically, we used a new materialist lens to develop a new enabling environments framework from the innovative Adherence Assemblage model and applied analysis such as mega-aggregation framework synthesis, synthesis by storyboarding, creative synthesis, and thematic analysis.

Results: Drawing on the findings of multiple types of qualitative data, which captured the perspectives of various role players, and amplified the voices of YWLPHIV, while considering the social-material-natural environment context in Africa, this PhD delivers: an innovative method of Mega-Aggregation Framework synthesis, a new qualitative evidence synthesis analytic method called Analysis by Storyboarding, a new conceptual model for adherence – the Adherence Assemblage, advances allyship in qualitative methods with the concept of the third sphere, actualised collaborative film production and creative works as synthesis, had a sustainable impact for both researchers and participants alike, and provides tangible recommendations for enabling environments to support adherence to ART for YWLPHIV. To enable environments for YWLPHIV, recommendations included, supportive disclosure practices, self-efficacy and self-acceptance, supportive relationships and caring communities, mitigating violence as a barrier to adherence and safe outdoor spaces, acknowledging the material dimension, integrated and holistic health care, compassionate educational systems, and advancing knowledge systems and research practices.

Conclusion: This study is one of the first to go beyond barriers and facilitators to adherence for people living with HIV and explores the role of the socio-natural-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. The findings of this PhD contribute to the African evidence that future research and interventions can be built to support young women and their families as they navigate their journeys of adherence to ART.

Date:9 Oct 2018 →  22 Jun 2023
Keywords:Enabling environment, perinatal, adolescent, HIV, South Africa, Qualitative
Disciplines:Applied sociology, Policy and administration, Social psychology, Social stratification, Social theory and sociological methods, Sociology of life course, family and health, Other sociology and anthropology, Urban sociology and community studies
Project type:PhD project