Research with young people raises many ethical and methodological challenges (as highlighted by Garthwaite et al. in this blog series), particularly when exploring sensitive topics. Conducting research with young people online brings further and compounding challenges, as we discovered through our experiences of adapting and undertaking a project which was devised long before the covid-19 pandemic.
Our research project explores young people’s understandings of inequalities in health and the wider social determinants of health. Health inequalities and the impact of these have not stopped during the pandemic. Worryingly, inequalities look to have worsened, and thus the need to research and understand experiences and the impacts of them is now more important than ever.
Before we began our data collection, we tested our methods with a Public Involvement and Engagement (PIE) group, which went some way towards preparing us for the challenges ahead. This blog outlines the methodological and ethical challenges we encountered, and we share some of the ways we sought to navigate these. We hope that sharing our experiences and reflections will help others when discussing topics relevant to health and inequality with young people and when having discussions online. The two biggest challenges we encountered were in developing rapport and relationships ‘at a distance’, and making sure we were able to provide effective support for our participants virtually. A crucial factor in helping us navigate these challenges was the close liaison with our partnering youth organisations, and the involvement of youth workers in the data collection sessions.
Developing rapport at a distance
Developing rapport with research participants is crucial in facilitating effective engagement, but we found that meeting online in a group setting made forming connections difficult. To help address this we developed and shared a short narrated project information video which included mini-biographies of the research team. We also arranged information sessions with the young people before data collection began which gave us the opportunity to introduce ourselves to the groups, helped us feel confident that the young people had a good understanding of what their participation would involve (e.g., consent, confidentiality), and gave time for reflection and direct questions. The information video and session were good substitutes for not being able to have face-to-face discussions with young people before data collection.
We also allocated time to building effective relationships during the data collection sessions and believe that doing so contributed to data quality. We found that ‘sandwiching’ data collection sessions with ‘fun’ icebreaker and cool-down activities which were unrelated to the data collection topic (e.g. ‘what emoji would you use to describe how you’re feeling now?’), worked well to address some of the power dynamics involved in research, and was crucial in engaging participants and building rapport whilst online.
Engagement and rapport seemed to grow with each meeting. This was further facilitated by participating youth workers who were known to, and trusted by the participants, and who went beyond providing access, to encouraging participation in the research and group discussions and helping to minimise online barriers. For example, youth workers encouraged young people to turn their cameras on when they were off and prompted them to engage fully in discussions by drawing on their knowledge of the participants' lived experiences. The youth workers were also crucial in identifying effective group splits for breakout rooms, which helped with group dynamics. In this way, the involvement of the youth workers helped mitigate some of the challenges of building relationships with groups in online settings.
Providing support to young people virtually
Discussions about health and inequalities are potentially sensitive, with the social stigmas of inequality, poverty and disadvantage making it challenging to explore these issues with young people. We recognised that participation could be distressing either directly through discussion of difficult topics with personal relevance, or through a form of vicarious trauma (i.e. adverse effects from the discussions and disclosures of other participants). As such, we felt it was especially important to consider how participants might feel during and after data collection, and how the online research setting would impact on how support can be provided.
The involvement of partnering youth workers in online sessions provided participants with instant access to a trusted source of support if needed. The knowledge of the youth worker helped navigate and recognise when sensitive topics for young people were raised. Their knowledge also allowed them to pick-up on potential signs of young people becoming upset before we could. We worked with the youth worker to put in place a system that would allow participants and youth workers to stay in contact (i.e. through text or WhatsApp) both during and after the data collection sessions. This enabled unobtrusive support to be offered in real-time during sessions, and through post-session check-ins. This was an extremely important protective factor for mitigating the challenges of virtual research with young people.
Whilst the end of session cool-down activity worked well in allowing participants to ‘decompress’ from the discussions, we were left feeling that data collection sessions ended very abruptly as participants disappeared from the screen, unlike face-to-face sessions where participants can linger if they choose. We did not want young people to be left to manage the after effects of complex discussions without support, so the post-session check-in by the youth worker reassured the research team that support was available if required. We also recognised that the option of speaking to a known youth worker (rather than a relatively unknown researcher) would make them more likely to seek support should they need it at any point after the session.
Navigating the challenges we encountered moving our research online: Key learning points
Data collection online is different and brings challenges to ensuring young people’s safe and effective participation. These challenges require consideration and reflection to be effectively navigated. We found that youth organisations and youth workers helped to facilitate engagement from young people around tricky and sensitive topics, and provided support during and beyond the project in ways we as researchers would not have been able to. Our approach permitted us to put structures in place which helped counter the absence of some of the protections which face-to-face contact provides.
Dr Nicholas Woodrow is a Research Associate at the University of Sheffield in the School of Health and Related Research.
Mary Crowder is a Research Associate at the University of Sheffield in the School of Health and Related Research.
Dr Hannah Fairbrother is a Lecturer in Public Health at the University of Sheffield in the Health Sciences School.
Dr Naomi Griffin is a Fuse SPHR Post-Doctoral Research Associate at Durham University in the Department of Sport and Exercise Science.
Eleanor Holding is a Research Associate at the University of Sheffield in the School of Health and Related Research.
Dr Helen Quirk is a NIHR SPHR Launching Fellow at the University of Sheffield in the School of Health and Related Research.
You can find more information about the project this blog discusses here.
We are grateful to the Association for Young People's Health (AYPH) for bringing their expertise in youth engagement to the project which included facilitating discussions on the potential challenges of carrying out focus groups with young people online in advance of data collection and sense-checking our focus group topic guides. We thank members of the youth organisations who piloted and provided feedback on our data collection tools and methods. Finally, we thank the children, young people and youth organisations that took part in the research for their contributions, insights and support.
This project is funded by the National Institute for Health Research (NIHR) School for Public Health Research (SPHR) (SPHR- PROG-CYP-WP4). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
The NIHR School for Public Health Research is a partnership between the Universities of Sheffield; Bristol; Cambridge; Imperial; and University College London; The London School for Hygiene and Tropical Medicine (LSHTM); LiLaC – a collaboration between the Universities of Liverpool and Lancaster; and Fuse - The Centre for Translational Research in Public Health collaboration between Newcastle, Durham, Northumbria, Sunderland and Teesside Universities.