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

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Abstract

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.

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Using Zoom Videoconferencing for Qualitative Data Collection: Perceptions and Experiences of Researchers and Participants

Mandy Archibald, Rachel Ambagtsheer, Mavourneen G. Casey … (2019)

Advances in communication technologies offer new opportunities for the conduct of qualitative research. Among these, Zoom—an innovative videoconferencing platform—has a number of unique features that enhance its potential appeal to qualitative and mixed-methods researchers. Although studies have explored the use of information and communication technologies for conducting research, few have explored both researcher and participant perspectives on the use of web and videoconferencing platforms. Further, data are lacking on the benefits and challenges of using Zoom as a data collection method. In this study, we explore the feasibility and acceptability of using Zoom to collect qualitative interview data within a health research context in order to better understand its suitability for qualitative and mixed-methods researchers. We asked 16 practice nurses who participated in online qualitative interviews about their experiences of using Zoom and concurrently recorded researcher observations. Although several participants experienced technical difficulties, most described their interview experience as highly satisfactory and generally rated Zoom above alternative interviewing mediums such as face-to-face, telephone, and other videoconferencing services, platforms, and products. Findings suggest the viability of Zoom as a tool for collection of qualitative data because of its relative ease of use, cost-effectiveness, data management features, and security options. Further research exploring the utility of Zoom is recommended in order to critically assess and advance innovations in online methods.

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Carrying Out Rapid Qualitative Research During a Pandemic: Emerging Lessons From COVID-19

Cecilia Vindrola-Padros, Georgia Chisnall, Silvie Cooper … (2020)

Social scientists have a robust history of contributing to better understandings of and responses to disease outbreaks. The implementation of qualitative research in the context of infectious epidemics, however, continues to lag behind in the delivery, credibility, and timeliness of findings when compared with other research designs. The purpose of this article is to reflect on our experience of carrying out three research studies (a rapid appraisal, a qualitative study based on interviews, and a mixed-methods survey) aimed at exploring health care delivery in the context of COVID-19. We highlight the importance of qualitative data to inform evidence-based public health responses and provide a way forward to global research teams who wish to implement similar rapid qualitative studies. We reflect on the challenges of setting up research teams, obtaining ethical approval, collecting and analyzing data in real-time and sharing actionable findings.

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Maintaining HIV care during the COVID-19 pandemic

Hongbo Jiang, Yi Zhou, Weiming Tang (2020)

Coronavirus disease 2019 (COVID-19) has spread rapidly around the world since the first reports from Wuhan in China in December, 2019, and the outbreak was characterised as a pandemic by WHO on March 12, 2020. 1 Approximately 37·9 million people living with HIV 2 are at risk of infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), which causes COVID-19. Although some international institutions, in collaboration with governments and community partners, are working to sustain HIV service provision for people living with HIV, the COVID-19 pandemic presents several barriers and challenges to the HIV care continuum. 3 First, implementation of quarantine, social distancing, and community containment measures have reduced access to routine HIV testing, which challenges completion of UNAIDS' first 90-90-90 target globally, that 90% of all people living with HIV will know their HIV status. HIV testing is the vital first step towards initiation into the HIV care continuum. 3 Even with availability of HIV self-testing kits in some areas, 4 testing remains a big challenge in settings with scarce access to these kits. Therefore, increased efforts are needed to augment access and to facilitate testing. Second, timely linkage to HIV care could be hindered during the COVID-19 pandemic. People living with HIV who should have initiated antiretroviral therapy (ART) in hospital might be deterred or delayed because hospitals are busy treating patients with COVID-19. Furthermore, because many public health authorities globally are focused on COVID-19 control, allocation of resources for HIV care could be diminished, and circumstances surrounding the HIV care continuum could worsen. Third, the COVID-19 pandemic might also hinder ART continuation. Hospital visits could be restricted because of implementation of city lockdowns or traffic controls. UNAIDS and the BaiHuaLin alliance of people living with HIV, with support of the Chinese National Center for AIDS/STD Control and Prevention, did a survey among people living with HIV in China in February, 2020.5, 6 Among this population, 32·6% were at risk of ART discontinuation and about 48·6% did not know where to get antiviral drugs in the near future.5, 6 People living with HIV who are faced with ART discontinuation not only could undergo physical health deterioration but also might suffer great psychological pressure. In response to these challenges, WHO, UNAIDS, and the Global Network of People Living With HIV are working together to ensure continued provision of HIV prevention, testing, and treatment services.6, 7, 8 The Chinese National Center for AIDS/STD Control and Prevention issued a notice guaranteeing free antiviral drugs for selected treatment management agencies in China, and released a list of ART clinics. 6 People living with HIV can refill antiviral drugs either at the nearest local Center for Disease Control and Prevention or by post, to maintain enrolment in treatment programmes and to continue ART. 6 Hospitals in Thailand are to dispense antiviral drugs in 3–6-month doses to meet the needs of people living with HIV and reduce facility visits. 9 The US Department of Health and Human Services released interim guidance for COVID-19 and people living with HIV on March 20, 2020, 10 which emphasised that people living with HIV should maintain at least a 30-day supply and ideally a 90-day supply of ART and all other drugs, by mail-order delivery if possible. Community-based organisations have also played an important part in maintaining HIV services. UNAIDS is working with the BaiHuaLin alliance of people living with HIV and other community partners to reach and help those who will run out of antiviral drugs in the near future. 6 Since the lock down of Wuhan on Jan 23, 2020, a community-based organisation (Wuhan TongZhi Center) has dedicated resources to ensure the supply of antiviral drugs and opened a hotline to provide consultations. As of March 31, 2020, this organisation has had more than 5500 consultations with people living with HIV and has helped more than 2664 individuals obtain antiviral drugs. The Thai Red Cross AIDS Research Centre set up a visible platform outside their anonymous clinic with a screening system for every client, providing HIV testing and prevention supplies (eg, condoms, postexposure prophylaxis, and pre-exposure prophylaxis). 9 As COVID-19 continues to spread around the world, many locations are facing the risk of SARS-CoV-2 infection and barriers and challenges for maintaining the HIV care continuum. The situation could be worse in places with weak health-care systems. We recommend that governments, community-based organisations, and international partners should work together to maintain the HIV care continuum during the COVID-19 pandemic, with particular efforts made to ensure timely access to, and to avoid disruption of, routine HIV services.

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Author and article information

Contributors

Dumile Gumede:

ORCID: https://orcid.org/0000-0002-8628-5726

Role: ConceptualizationRole: Data curationRole: Formal analysisRole: Funding acquisitionRole: MethodologyRole: Project administrationRole: Writing – original draft

Maureen Nokuthula Sibiya:

ORCID: https://orcid.org/0000-0003-1220-1478

Role: ConceptualizationRole: Data curationRole: Formal analysisRole: MethodologyRole: SupervisionRole: Writing – review & editing

Lucinda Manda-Taylor: Role: Editor

Journal

Journal ID (nlm-ta): PLOS Glob Public Health

Journal ID (iso-abbrev): PLOS Glob Public Health

Journal ID (publisher-id): plos

Title: PLOS Global Public Health

Publisher: Public Library of Science (San Francisco, CA USA )

ISSN (Electronic): 2767-3375

Publication date (Electronic): 14 June 2023

Publication date Collection: 2023

Volume: 3

Issue: 6

Electronic Location Identifier: e0001682

Affiliations

[1 ] Centre for General Education, Durban University of Technology, Berea, Durban, South Africa

[2 ] Division of Research, Innovation and Engagement, Mangosuthu University of Technology, Umlazi, Durban, South Africa

Kamuzu University of Health Sciences (KUHes), MALAWI

Author notes

The authors have declared that no competing interests exist.

* E-mail: dumileg@ 123456dut.ac.za

Author information

Dumile Gumede https://orcid.org/0000-0002-8628-5726

Maureen Nokuthula Sibiya https://orcid.org/0000-0003-1220-1478

Article

Publisher ID: PGPH-D-23-00030

DOI: 10.1371/journal.pgph.0001682

PMC ID: 10266614

PubMed ID: 37315009

SO-VID: 4db24cae-37f8-425c-834c-2e47abbc32bd

License:

This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

History

Date received : 8 January 2023

Date accepted : 15 May 2023

Page count

Figures: 2, Tables: 0, Pages: 16

Funding

Funded by: National Research Foundation of South Africa

Award ID: 138175

Award Recipient :

ORCID: https://orcid.org/0000-0002-8628-5726

Dumile Gumede

This study was supported by the National Research Foundation of South Africa (Grant No: 138175). The funding body had no role in the design of the study and collection, analysis, and interpretation of data and in writing the manuscript.

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Data Availability The datasets generated and/or analysed during the current study are not publicly available due to confidentiality agreements but data requests can be made to the research ethics committee ( irec@ 123456dut.ac.za ).

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

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Novel Coronavirus Disease COVID-19

Most cited references 58

Using Zoom Videoconferencing for Qualitative Data Collection: Perceptions and Experiences of Researchers and Participants

Carrying Out Rapid Qualitative Research During a Pandemic: Emerging Lessons From COVID-19

Maintaining HIV care during the COVID-19 pandemic

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