Near-perfect adherence to antiretroviral therapy (ART) is required to achieve the best possible prevention and treatment outcomes. Yet, there have been particular concerns about the challenges of adherence among patients living in resource-limited settings in sub-Saharan Africa. The primary objective of this study was to explore adherence in a low-resourced, rural community of high HIV prevalence in South Africa and to identify specific individual and structural factors that can either challenge or support adherence in this context. We applied digital stories as a qualitative research tool to gain insights into personal contexts of HIV and ART adherence. Through an inductive thematic analysis of twenty story texts, soundtracks and drawings, we explored experiences, understandings, and contexts of the participants and identified potential barriers and facilitators for those on lifelong treatment. We found that many of the stories reflected a growing confidence in the effectiveness of ART, which should be viewed as a key facilitator to successful adherence since this attitude can promote disclosure and boost access to social support. Nevertheless, stories also highlighted the complexity of the issues that individuals and households face as they deal with HIV and ART in this setting and it is clear that an overburdened local healthcare system has often struggled to meet the demands of a rapidly expanding epidemic and to provide the necessary medical and emotional support. Our analysis suggests several opportunities for further research and the design of novel health interventions to support optimal adherence. Firstly, future health promotion campaigns should encourage individuals to test together, or at least accompany each other for testing, to encourage social support from the outset. Additionally, home-based testing and ART club interventions might be recommended to make it easier for individuals to adhere to their treatment regimens and to provide a sense of support and solidarity.
Digital storytelling (DST) is an emerging participatory visual method which combines storytelling traditions with computer and video production technology. In this project, at the heart of the HIV epidemic in KwaZulu-Natal, South Africa, we used DST to create a culturally grounded community engagement intervention. Our aim was to use narratives of people living with HIV on antiretroviral therapy (ART) to stimulate dialogue among the wider community and to encourage reflection on the contextual factors that influence ART adherence in this setting. We also wanted to explore whether exposure to the personal narratives might influence health literacy around HIV and ART. We ran two DST workshops, where 20 community participants were supported to create short digital stories about personal experiences of adherence. We then hosted 151 screenings of the digital stories at seven local health facilities and evaluated the impact of the intervention using a three-tiered mixed methods approach. We conducted two independent quantitative surveys of healthcare users (852 respondents during the preintervention round and 860 people during the postintervention round), five focus group discussions and observation of practice. Exposure to the digital stories did stimulate rich dialogue among community members, which broadened from the focus on ART adherence to other aspects around the impact of HIV and its treatment on individuals and the community. In the independently conducted surveys, we found no clear difference in knowledge or understanding of HIV and ART between the people exposed to the digital stories and those who were not exposed. Our findings provide support for the use of DST as an engagement intervention, but highlight some of the challenges in delivering this type of intervention and in evaluating the impact of this approach.
Sexual violence in the higher education is an epidemic of global proportions. Scholars conclude that the individual and collective silence that surrounds such violence enables its perpetration and that violence will only be eradicated when we break this silence. In this paper, we used two participatory visual methods (PVM), collage and storytelling, to explore what sexual violence at university looks like and what it means to woman students. Two groups of student teachers in two South African universities were engaged in collage and storytelling workshops in late 2017 and early 2018, respectively. We thematically analyzed the issues that emerged from the data, drawing on transformative learning theory to explore how our approach might help women students to break the silence around sexual violence and stimulate critical dialogue to address it. Our analysis suggests that these visual tools enabled deep reflections on the meaning and impact of sexual violence, particularly for women. In addition, the participatory process supported introspection about their experiences of sexual violence and their responses to it as bystanders in and around campus. More importantly, they discussed how they, as young women, might break the silence and sustain new conversations about gender and gender equality in institutions and beyond.
Increasingly, researchers and policymakers recognize the ability of girls to effect social change in their daily lives. Scholars working across diverse settings also acknowledge the key influence of individual, family, and societal structures on such activism. Drawing on our work with girls in a participatory visual research project in a rural community in South Africa, we consider examples of partnership and collaboration between the adult research team and the young participants. We highlight their agency in mobilizing adults to partner and support community and policy change to address traditional practices of early and forced marriage in this setting. We conclude that collaborative engagement with adults as partners can support activism and advocacy led by girls in contexts of traditional leadership.
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