Faculty of Health Sciences
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Item Ethical and methodological reflections : digital storytelling of self-care with students during the COVID-19 pandemic at a South African University(Public Library of Science (PLoS), 2023-01) Gumede, Dumile; Sibiya, Maureen NokuthulaThe enforcement of the coronavirus disease 2019 (COVID-19) pandemic restrictions disrupted the traditional face-to-face qualitative data collection in public health. The pandemic forced qualitative researchers to transition to remote methods of data collection such as digital storytelling. Currently, there is a limited understanding of ethical and methodological challenges in digital storytelling. We, therefore, reflect on the challenges and solutions for implementing a digital storytelling project on self-care at a South African university during the COVID-19 pandemic. Guided by Salmon's Qualitative e-Research Framework, reflective journals were used in a digital storytelling project between March and June 2022. We documented the challenges of online recruitment, obtaining informed consent virtually, and collecting data using digital storytelling as well as the efforts of overcoming the challenges. Our reflections identified major challenges, namely online recruitment and informed consent compromised by asynchronous communication; participants' limited research knowledge; participants' privacy and confidentiality concerns; poor internet connectivity; quality of digital stories; devices with a shortage of storage space; participants' limited technological skills; and time commitment required to create digital stories. Strategies adopted to address these challenges included an ongoing informed consent process; flexible timelines for the creation of digital stories; one-on-one guidance on creating digital stories; and multiple online platforms to share digital stories. Our critical reflection offers practical guidance for the ethical conduct of digital storytelling in public health research and makes a significant contribution to methodological considerations for use in future pandemics. These ethical and methodological challenges should be recognized as features of the context of the research setting including restrictions imposed by the COVID-19 pandemic than disadvantages of digital storytelling.Item A qualitative exploration into the presence of TB stigmatization across three districts in South Africa(Springer Science and Business Media LLC, 2023-03-15) DeSanto, Daniel; Velen, Kavindhran; Lessells, Richard; Makgopa, Sewele; Gumede, Dumile; Fielding, Katherine; Grant, Alison D.; Charalambous, Salome; Chetty-Makkan, Candice M.Tuberculosis (TB) stigma is a barrier to active case finding and delivery of care in fighting the TB epidemic. As part of a project exploring different models for delivery of TB contact tracing, we conducted a qualitative analysis to explore the presence of TB stigma within communities across South Africa.Methods
We conducted 43 in-depth interviews with 31 people with TB and 12 household contacts as well as five focus group discussions with 40 ward-based team members and 11 community stakeholders across three South African districts.Results
TB stigma is driven and facilitated by fear of disease coupled with an understanding of TB/HIV duality and manifests as anticipated and internalized stigma. Individuals are marked with TB stigma verbally through gossip and visually through symptomatic identification or when accessing care in either TB-specific areas in health clinics or though ward-based outreach teams. Individuals' unique understanding of stigma influences how they seek care.Conclusion
TB stigma contributes to suboptimal case finding and care at the community level in South Africa. Interventions to combat stigma, such as community and individual education campaigns on TB treatment and transmission as well as the training of health care workers on stigma and stigmatization are needed to prevent discrimination and protect patient confidentiality.Item A qualitative investigation of facilitators and barriers to DREAMS uptake among adolescents with grandparent caregivers in rural KwaZulu-Natal, South Africa(Public Library of Science (PLoS), 2022) Gumede, Dumile; Meyer-Weitz, Anna; Zuma, Thembelihle; Shahmanesh, Maryam; Seeley, JanetAdolescents with grandparent caregivers have experienced challenges including the death of one or both parents due to HIV in sub-Saharan Africa. They may be left out of existing HIV prevention interventions targeting parents and children. We investigated the facilitators and barriers to DREAMS (Determined, Resilient, Empowered, AIDS-free, Mentored and Safe) programme uptake among adolescents with grandparent caregivers across different levels of the socio-ecological model in rural South Africa. Data were collected in three phases (October 2017 to September 2018). Adolescents (13–19 years old) and their grandparent caregivers (≥50 years old) (n = 12) contributed to repeat in-depth interviews to share their perceptions and experiences regarding adolescents’ participation in DREAMS. Data were triangulated using key informant interviews with DREAMS intervention facilitators (n = 2) to give insights into their experiences of delivering DREAMS interventions. Written informed consent or child assent was obtained from all individuals before participation. All data were collected in isiZulu and audio-recorded, transcribed verbatim and translated into English. Thematic and dyadic analysis approaches were conducted guided by the socio-ecological model. Participation in DREAMS was most effective when DREAMS messaging reinforced existing norms around sex and sexuality and when the interventions improved care relationships between the adolescents and their older caregivers. DREAMS was less acceptable when it deviated from the norms, raised SRH information that conflicts with abstinence and virginity, and when youth empowerment was perceived as a potential threat to intergenerational power dynamics. While DREAMS was able to engage these complex families, there were failures, about factors uniquely critical to these families, such as in engaging children and carers with disabilities and failure to include adolescent boys in some interventions. There is a need to adapt HIV prevention interventions to tackle care relationships specific to adolescent-grandparent caregiver communication.Item Understanding older peoples’ chronic disease self-management practices and challenges in the context of grandchildren caregiving : a qualitative study in rural KwaZulu-Natal, South Africa(Public Library of Science (PLoS), 2022) Gumede, Dumile; Meyer-Weitz, Anna; Edwards, Anita; Seeley, JanetWhile chronic diseases are amongst the major health burdens of older South Africans, the responsibilities of caring for grandchildren, by mostly grandmothers, may further affect older people’s health and well-being. There is a paucity of information about chronic disease self-management for older people in the context of grandchildren caregiving in sub-Saharan Africa. Guided by the Self-Management Framework, the purpose of this qualitative methods study was to explore the chronic disease self-management practices and challenges of grandparent caregivers in rural KwaZulu-Natal, South Africa. Eighteen repeat in-depth interviews were carried out with six grandparent caregivers aged 56 to 80 years over 12 months. Thematic analysis was conducted based on the Self-Management Framework. Pathways into self-management of chronic illnesses were identified: living with a chronic illness, focusing on illness needs, and activating resources. Self-perceptions of caregiving dictated that grandmothers, as women, have the responsibility of caring for grandchildren when they themselves needed care, lived in poverty, and with chronic illnesses that require self-management. However, despite the hardship, the gendered role of caring for grandchildren brought meaning to the grandmothers’ lives and supported self-management due to the reciprocal relationship with grandchildren, although chronic illness self-management was complicated where relationships between grandmothers and grandchildren were estranged. The study findings demonstrate that grandchildren caregiving and self-management of chronic conditions are inextricably linked. Optimal self-management of chronic diseases must be seen within a larger context that simultaneously addresses chronic diseases, while paying attention to the intersection of socio-cultural factors with self-management.