Ethical and methodological reflections: Digital storytelling of self-care with students during the COVID-19 pandemic at a South African University.

The 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.

A qualitative exploration into the presence of TB stigmatization across three districts in South Africa.

BACKGROUND: 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.

A qualitative investigation of facilitators and barriers to DREAMS uptake among adolescents with grandparent caregivers in rural KwaZulu-Natal, South Africa.

Adolescents 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.

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.

While 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.

Exploring the promise and reality of ward-based primary healthcare outreach teams conducting TB household contact tracing in three districts of South Africa.

BACKGROUND: Tuberculosis (TB) household contact tracing is a form of targeted active case-finding for which community health workers ('outreach teams') in South Africa are primarily responsible for its implementation. We conducted an exploratory qualitative study to understand the role of outreach teams in delivering TB household contact tracing. METHODS: The study took place in three districts of South Africa between May 2016 and February 2017. We conducted 78 in-depth interviews (IDI) (comprising 35 key stakeholders, 31 TB index patients and 12 HHCs) and five focus group discussions (FGD) (40 outreach team members in four FGDs and 12 community stakeholders in one FGD). RESULTS: Outreach teams contributed positively by working across health-related programmes, providing home-based care and assisting with tracing of persons lost to TB care. However, outreach teams had a limited focus on TB household contact tracing activities, likely due to the broad scope of their work and insufficient programmatic support. Outreach teams often confused TB household contact tracing activities with finding persons lost to TB care. The community also had some reservations on the role of outreach teams conducting TB household contact tracing activities. CONCLUSIONS: Creating awareness among outreach workers and clinic personnel about the importance of and activities related to TB household contact tracing would be required to strengthen the delivery of TB household contact tracing through the community-based primary health care teams. We need better monitoring and evaluation systems, stronger integration within a realistic scope of work, adequate training on TB household contact tracing and TB infection prevention control measures. Involving the community and educating them on the role of outreach teams could improve acceptance of future activities. These timely results and lessons learned should inform contact tracing approaches in the context of COVID-19.

A reflection on ethical and methodological challenges of using separate interviews with adolescent-older carer dyads in rural South Africa.

BACKGROUND: This article discusses our reflections on ethical and methodological challenges when conducting separate interviews with individuals in dyads in the uMkhanyakude district, South Africa. Our work is embedded in an ethnographic study exploring care relationships between adolescents and their older carers in the context of a large-donor funded HIV programme. We use these reflections to discuss some of the challenges and present possible management strategies that may be adopted in conducting dyadic health research in resource-poor settings. METHODS: Drawing from the relational agency, three rounds of separate interviews and participant observation were undertaken with dyads of adolescents aged between 13 and 19 and their older carers aged 50+ from October 2017 to September 2018. A reflexive journal was kept to record the interviewer's experiences of the whole research process. We identified methodological and ethical challenges from these data during the thematic analysis. RESULTS: A total of 36 separate interviews were conducted with six pairs of adolescent-older carer dyads (n = 12 participants). Five themes emerged: recruitment of dyads, consenting dyads, confidentiality, conducting separate interviews with adolescents and older carers, and interviewer-dyad interaction. We also illustrated how we dealt with these challenges. CONCLUSIONS: Results from this study can guide the recruitment, consenting and collecting data for health studies that employ a similar form of enquiry in LMICs. However, ethical and methodological challenges should be recognised as features of the relationships between cross-generation dyads rather than weaknesses of the method.

Exploring adolescents and young people's candidacy for utilising health services in a rural district, South Africa.

BACKGROUND: We use the 'candidacy framework' to describe adolescents' and young people's (AYP) experiences of health services in a rural KwaZulu-Natal district, South Africa. METHODS: A qualitative approach was used including group discussions, in-depth and key informant interviews with a purposive sample of AYP (n = 70), community leaders (n = 15), school health teams (n = 10), and health service providers (n = 6). RESULTS: Findings indicate tacit understanding among AYP that they are candidates for general health services. However, HIV stigma, apprehensions and misconceptions about sexual and reproductive health, and socio-cultural views which disapprove of AYP pre-marital sex undermine their candidacy for sexual and reproductive services. CONCLUSION: Consideration and understanding of the vulnerabilities and reasons AYP exclude themselves will inform interventions to address their health needs. AYP's participation in the design of health services will increase their acceptability and encourage uptake of services.

Value and Limitations of Broad Brush Surveys Used in Community-Randomized Trials in Southern Africa.

We describe and reflect on a rapid qualitative survey approach called "Broad Brush Survey" (BBS) used in six community-randomized trials (CRTs)/studies in Zambia and South Africa (2004-2018) to document, compare, classify, and communicate community features systematically for public health and multidisciplinary research ends. BBS is based on a set sequence of participatory qualitative methods and fieldwork carried out prior to a CRT intervention and/or research by social scientists to generate rapid community profiles using four key indicators: physical features, social organization, networks, and community narratives. Profiling makes apparent similarities and differences, enabling comparison across communities and can be facilitated by an ideal model of open-closed systems. Findings have provided practical outputs (e.g., community profiles) and academic opportunities (e.g., community typologies). The BBS approach enables complex social landscapes to be incorporated in CRTs. This method has proven to be useful, adaptable and to have multidisciplinary appeal.

Sources of social support and sexual behaviour advice for young adults in rural South Africa.

INTRODUCTION: While young people in sub-Saharan Africa (SSA) are at greatest risk of HIV acquisition, uptake of HIV prevention interventions among them has been limited. Interventions delivered through social connections have changed behaviour in many settings, but not to date in SSA. There is little systematic evidence on whom young SSA adults turn to for advice. We therefore conducted an exploratory cross-sectional study from whom young rural South Africans received support and sexual behaviour-specific advice. METHODS: We asked 119 18-34 year olds in rural KwaZulu-Natal about the important people in their lives who provided emotional, informational, financial, physical, social or other support. We also asked whether they had discussed sex or HIV prevention with each contact named. We used descriptive statistics and logistic regression to analyse support and advice provision patterns. RESULTS: Respondents named 394 important contacts, each providing a mean of 1.7 types of support. Most contacts were relatives, same-gender friends or romantic partners. Relatives provided most informational, financial and physical support; friends and partners more social support and sexual advice. Respondents reported discussing sexual matters with 60% of contacts. Sources of support changed with age, from friends and parents, towards siblings and partners. DISCUSSION: Sexual health interventions for young adults in rural South Africa may be able to harness friend and same-generation kin social ties through which sex is already discussed, and parental ties through which other forms of support are transmitted. The gender-segregated nature of social connections may require separate interventions for men and women.

"If you are here at the clinic, you do not know how many people need help in the community": Perspectives of home-based HIV services from health care workers in rural KwaZulu-Natal, South Africa in the era of universal test-and-treat.

BACKGROUND: Limited engagement in clinic-based care is affecting the HIV response. We explored the field experiences and perceptions of local health care workers regarding home-based strategies as opportunities to improve the cascade of care of people living with HIV in rural South Africa as part of a Universal Test-and-Treat approach. METHODS: In Hlabisa sub-district, home-based HIV services, including rapid HIV testing and counselling, and support for linkage to and retention in clinic-based HIV care, were implemented by health care workers within the ANRS 12249 Treatment-as-Prevention (TasP) trial. From April to July 2016, we conducted a mixed-methods study among health care workers from the TasP trial and from local government clinics, using self-administrated questionnaires (n = 90 in the TasP trial, n = 56 in government clinics), semi-structured interviews (n = 13 in the TasP trial, n = 5 in government clinics) and three focus group discussions (n = 6-10 health care workers of the TasP trial per group). Descriptive statistics were used for quantitative data and qualitative data were analysed thematically. RESULTS: More than 90% of health care workers assessed home-based testing and support for linkage to care as feasible and acceptable by the population they serve. Many health care workers underlined how home visits could facilitate reaching people who had slipped through the cracks of the clinic-based health care system and encourage them to successfully access care. Health care workers however expressed concerns about the ability of home-based services to answer the HIV care needs of all community members, including people working outside their home during the day or those who fear HIV-related stigmatization. Overall, health care workers encouraged policy-makers to more formally integrate home-based services in the local health system. They promoted reshaping the disease-specific and care-oriented services towards more comprehensive goals. CONCLUSION: Because home-based services allow identification of people early during their infection and encourage them to take actions leading to viral suppression, HCWs assessed them as valuable components within the panel of UTT interventions, aiming to reach the 90-90-90 UNAIDS targets, especially in the rural Southern African region. TRIAL REGISTRATION: The registration number of the ANRS 12249 TasP trial on ClinicalTrials.gov is NCT01509508.

Community perceptions of the socio-economic structural context influencing HIV and TB risk, prevention and treatment in a high prevalence area in the era of antiretroviral therapy.

Following calls for targeted HIV prevention interventions in so-called "hotspots", we explored subjective perceptions of community members in places considered to be high HIV and tuberculosis (TB) transmission areas and those with low prevalence. Although more people now have access to antiretroviral therapy (ART), some areas are still experiencing high HIV transmission rates, presenting a barrier to the elimination of HIV. A rapid qualitative assessment approach was used to access a sample of 230 people who contributed narratives of their experiences and perceptions of transmission, treatment and prevention of HIV and TB in their communities. Theoretical propositions case study strategy was used to inform and guide the thematic analysis of the data with Research Department of Epidemiology & Public Health, University College London, London, UK. Our results support the concept of linking perceived control to health through the identification of structural factors that increase communities' sense of agency. People in these communities did not feel they had the efficacy to effect change in their milieu. The few socio-economic opportunities promote social mobility in search of better prospects which may have a negative impact on community cohesion and prevention strategies. Communities were more concerned with improving their immediate social and economic situations and prioritised this above the prevention messages. Therefore approaches that focus on changing the structural and environmental barriers to prevention may increase people's perceived control. Multifaceted strategies that address the identified constructs of perceived control may influence the social change necessary to make structural interventions successful.

Community perceptions of the socio-economic structural context influencing HIV and TB risk, prevention and treatment in a high prevalence area in the era of antiretroviral therapy

Following calls for targeted HIV prevention interventions in so-called "hotspots", we explored subjective perceptions of community members in places considered to be high HIV and tuberculosis (TB) transmission areas and those with low prevalence. Although more people now have access to antiretroviral therapy (ART), some areas are still experiencing high HIV transmission rates, presenting a barrier to the elimination of HIV. A rapid qualitative assessment approach was used to access a sample of 230 people who contributed narratives of their experiences and perceptions of transmission, treatment and prevention of HIV and TB in their communities. Theoretical propositions case study strategy was used to inform and guide the thematic analysis of the data with Research Department of Epidemiology & Public Health, University College London, London, UK. Our results support the concept of linking perceived control to health through the identification of structural factors that increase communities' sense of agency. People in these communities did not feel they had the efficacy to effect change in their milieu. The few socio-economic opportunities promote social mobility in search of better prospects which may have a negative impact on community cohesn and prevention strategies. Communities were more concerned with improving their immediate social and economic situations and prioritised this above the prevention messages. Therefore approaches that focus on changing the structural and environmental barriers to prevention may increase people's perceived control. Multifaceted strategies that address the identified constructs of perceived control may influence the social change necessary to make structural interventions successful

Implementing universal HIV treatment in a high HIV prevalence and rural South African setting - Field experiences and recommendations of health care providers.

BACKGROUND: We aimed to describe the field experiences and recommendations of clinic-based health care providers (HCP) regarding the implementation of universal antiretroviral therapy (ART) in rural KwaZulu-Natal, South Africa. METHODS: In Hlabisa sub-district, the local HIV programme of the Department of Health (DoH) is decentralized in 18 clinics, where ART was offered at a CD4 count ≤500 cells/µL from January 2015 to September 2016. Within the ANRS 12249 TasP trial, implemented in part of the sub-district, universal ART (no eligibility criteria) was offered in 11 mobile clinics between March 2012 and June 2016. A cross-sectional qualitative survey was conducted in April-July 2016 among clinic-based nurses and counsellors providing HIV care in the DoH and TasP trial clinics. In total, 13 individual interviews and two focus groups discussions (including 6 and 7 participants) were conducted, audio-recorded, transcribed, and thematically analyzed. RESULTS: All HCPs reported an overall good experience of delivering ART early in the course of HIV infection, with most patients willing to initiate ART before being symptomatic. Yet, HCPs underlined that not feeling sick could challenge early ART initiation and adherence, and thus highlighted the need to take time for counselling as an important component to achieve universal ART. HCPs also foresaw logistical challenges of universal ART, and were especially concerned about increasing workload and ART shortage. HCPs finally recommended the need to strengthen the existing model of care to facilitate access to ART, e.g., community-based and integrated HIV services. CONCLUSIONS: The provision of universal ART is feasible and acceptable according to HCPs in this rural South-African area. However their experiences suggest that universal ART, and more generally the 90-90-90 UNAIDS targets, will be difficult to achieve without the implementation of new models of health service delivery.

The impact of self-interviews on response patterns for sensitive topics: a randomized trial of electronic delivery methods for a sexual behaviour questionnaire in rural South Africa.

BACKGROUND: Self-interviews, where the respondent rather than the interviewer enters answers to questions, have been proposed as a way to reduce social desirability bias associated with interviewer-led interviews. Computer-assisted self-interviews (CASI) are commonly proposed since the computer programme can guide respondents; however they require both language and computer literacy. We evaluated the feasibility and acceptability of using electronic methods to administer quantitative sexual behaviour questionnaires in the Somkhele demographic surveillance area (DSA) in rural KwaZulu-Natal, South Africa. METHODS: We conducted a four-arm randomized trial of paper-and-pen-interview, computer-assisted personal-interview (CAPI), CASI and audio-CASI with an age-sex-urbanicity stratified sample of 504 adults resident in the DSA in 2015. We compared respondents' answers to their responses to the same questions in previous surveillance rounds. We also conducted 48 cognitive interviews, dual-coding responses using the Framework approach. RESULTS: Three hundred forty (67%) individuals were interviewed and covariates and participation rates were balanced across arms. CASI and audio-CASI were significantly slower than interviewer-led interviews. Item non-response rates were higher in self-interview arms. In single-paper meta-analysis, self-interviewed individuals reported more socially undesirable sexual behaviours. Cognitive interviews found high acceptance of both self-interviews and the use of electronic methods, with some concerns that self-interview methods required more participant effort and literacy. CONCLUSIONS: Electronic data collection methods, including self-interview methods, proved feasible and acceptable for completing quantitative sexual behaviour questionnaires in a poor, rural South African setting. However, each method had both benefits and costs, and the choice of method should be based on context-specific criteria.