Learning from researching vulnerable populations and sensitive topics in lockdown – Dr Sophie King-Hill, Richard Barrie, Amelia Anning & Kieran McCartan

Over the last 18 months we have had to radically adjust our approaches to research and data collection, with the COVID-19 pandemic meaning that we could only collect data remotely, rather than in person. Remote data collection impacts some methodologies more than others and impacts qualitative approaches the most. While telephone interviews and online focus groups existed pre-pandemic, they were always seen as not as good, or methodologically sound, as in person qualitative research. However, the pandemic has made us question many things about our lives and working practices, are social science research methodologies and data collection one of these? This is an important question in the field of sexual abuse research where participants may be vulnerable, the topic is sensitive and the researchers potentially at risk.

In pre–COVID-19 times, the impact of participating in research was not considered to cause any significant harm or distress to the participant; any potential distress was considered to have a short-term impact; and, the overall benefits of the research thought to offset any concerns (Vindrola-Padros, et al, 2020; Sashidharan and Gul, 2020). During the COVID-19 pandemic, this notion has been questioned (Sashidharan and Gul, 2020).       

There are many challenges to researching vulnerable populations and topics, and these were heightened through lockdown. The research process moving online, and the theoretical and methodological considerations associated, are significant because there were very few studies which have considered the practical elements of carrying out research during a pandemic (Vindrola-Padros et al, 2020). The authors of this article were research leads on a funded empirical qualitative project that was planned in pre-COVID times and then had to be researched and delivered during the lockdown, which meant a lot of rethinking and adaption. We are now going to talk through some of the considerations that we made in adapting the research and what, if anything, should remain post-COVID.

Access to & location of technology: There is an issue of inequality to consider, whilst many people do have access to smart phones and the internet, some disadvantaged groups do not (CPAG, 2020; Holmes and Burgess, 2020). This raises a serious question about the viability of online research and makes for some creative thinking – so for instance, could you send the questions over to the participant and get them to record and return their answers, could the interview be undertaken via telephone? Research in this area may therefore unintentionally discriminate against this group by preventing or hampering their participation. The digital divide is significant and is made more concerning given that the participant may be in a dangerous home situation with their technology being restricted, monitored and/or accessed. Yet the data collected is valuable and could go some way in combatting these adverse situations. So, there are additional questions about ethics and safeguarding that need to be asked.

Safety & safeguarding: Safety measures should be considered deeply when carrying out interviews with vulnerable participants (Williamson et al, 2020). This should include attention to what the impact of being interviewed over video/phone in their own homes would be on both the participant and the researcher. There is a distinct lack of ability to adequately evaluate the safety of the participant when engaging with them in these ways, both physically and emotionally. It has been suggested that gauging the emotional impact of the pandemic upon participants wellbeing is important (Sashidharan and Gul, 2020) and that carrying out a pre- and post-mood measurement of participants’ moods is good ethical practice (Sashidharan and Gul, 2020).  Establishing who is in the home with the participant during the interview, and considering how the research will impact upon their mental health and whether they will require support afterwards. Unlike face-to-face research, the researcher has no influence over the participant’s environment. This raises important questions on how to debrief and support the participant after the interviews have taken place.

Ethics: Research ethics is a time-consuming process in general, but especially with vulnerable populations and sensitive topics, and this increased significantly during the lockdown. The lockdown forced ethical boards to really focus on whether applications were appropriate given the circumstances and if not what should be done in place. The pandemic has allowed ethics boards to alter their perspectives on good and bad guidance when doing research. It has meant that applicants need to be more specific with more detailed information being required regarding data collection, working with colleagues and protection of data, participants and researchers. Extra precautions must be implemented to ensure safety which may not have been considered prior to COVID-19.

Gaining and evidencing consent: Virtual methods of data collection mean that gaining consent is no longer as simple as getting a participant to sign a consent form prior to something such as a focus group; it means adapting to new and creative ways of doing something that was once simpler.

Language & communication: Consideration needs to be given to the interviews themselves. These may require pre-work to support the participant before the interview and also give more time to account for technical issues, discussions about COVID-19, and the lack of social cues that are present when face-to-face. There are some additional challenges for researchers, such as managing technology and interviewing participants on sensitive topics, simultaneously. In addition, thought needs to be given to the way in which questions are asked and the actual language used.  It is important that the language is thoughtful, respectful and sensitive so that the interview does not confuse or trigger participants, especially as they are participating in isolation and may not be able to immediate support.   These communication challenges are not just linked to interactions with participants, but also for the research team’s communication with colleagues and stakeholders.  Not everybody has access to a work phone which not only complicates researcher/participant interaction, but means additional time needs to be spent emailing colleagues, rather than the often speedier task of picking up the phone. 

Maintaining boundaries:  With online research, neither the participant nor researcher may be in neutral settings; which may impact on the content of the research.    For researchers, it can be difficult to maintain the boundary between home and work life when they are undertaking interviews from their own home.  Bringing sensitive material into their home environment can be challenging, and without good strategies for managing the boundaries, may leave researchers with little time for personal reflection and an opportunity to ‘recharge’.   Therefore, it is important that both the researcher and the interviewee create distinct boundaries between their home life and the interview, whether that is through the choice of location in the house, or  a conversation at the start of the interview that defines the process as being distinct.

Balance in the interview process:  Despite the challenges above, conducting interviews online may serve to reduce the power imbalance that is sometimes found with face-to-face interviews.  (It may be that the COVID-19 restrictions give a feeling of equality as everyone is ‘in it together’).  Dodds and Hess (2020) state that there are four key benefits to interviewing vulnerable people online in their own environment:

• participant being more comfortable in their own environment,
• the interviews feeling safe and non-intrusive,
• convenience of setting and conducting the interviews and
• the ease of setting up online interactions.

These factors may negate the feelings of vulnerability, lack of trust and intimidation that are often felt by participants when discussing sensitive and personal issues (Flanagan and Hancock, 2010; Hepi et al., 2017; Newman et al., 2017; Kirkevold and Bergland, 2007).

Conclusion

As we emerge from lockdown and enter into the “new normal” it is important to consider the challenges of conducting online research and if there are any good practices that have emerged and should be kept, moving forward? The pandemic has highlighted that we need to adapt our research practices, especially qualitative research practices, to account for the lived experience of vulnerable and challenging groups. It demonstrates that necessity drives invention, therefore, what have we learned and what should we take forward?

The main learning point has been that we always need to think about the process and practice of research, that the participant always needs to be considered and in order to do that we need to be reflecting upon the ways in which we are conducting research. The move to collecting data online throughout the COVID-19 pandemic has demonstrated that this is a viable methodology, but that we need to think through the best way of framing, conducting, and facilitating the research. It is not simply as case of transplanting in person data collection to online data collection, rather it’s an evolution in the way that we collect data. In developing research projects in the future, we need to think about what the best way is to collect data from the perspective of the participant – in other words thinking about:

• Context: Where the research is taking place? Where is the best place for the individual participant and why? Can you male sure that they are in a safe and sure location if you can’t be there to confirm it?
• Adaptability: Can you change the nature and flow of the interview to suit the context, or as the situation changes? Are you, and the tools adaptable?
• Language: What language should be used in the interview, as well as the related materials, especially if there is no support structure present for the participant or if they are in a risky situation?
• Safeguarding: How can you make sure that the participants get access to the support and help that they need, if you are not able to offer that directly? What can we learn for remote working practices or safeguarding for researchers?
• Connectivity: Doing research online has may benefits but it is dependent upon access to technology, understanding of technology, and the participant’s digital footprint. How can we make sure that all potential participants have access and are not excluded by the process?

Dr Sophie King-Hill, Senior Fellow, Health Services Management Centre, University of Birmingham

Richard Barrie, Research Assistant, Health Services Management Centre,  University of Birmingham

Amelia Anning, Associate Lecturer and Research Associate for the University of the West of England

Kieran McCartan, Professor in Criminology, University of West of England

 

References

Child Poverty Action Group (2020). The Cost of Learning in Lockdown: Family Experiences of School Closures. Child Poverty Action Group, London, United Kingdom

Dodds, C., & Hess, A. C. (2020). Adapting research methodology during COVID-19: lessons for transformative service research. School of Communication, Journalism and Marketing, Massey University, Auckland, New Zealand

Flanagan, S., and Hancock, B. (2010), “‘Reaching the hard to reach’ – lessons learned from the VCS (voluntary and community sector): a qualitative study”, BMC Health Services Research, Vol. 10 No. 1, pp. 92-99.

Hepi, M., Foote, J., Finsterwalder, J., Carswell, S. and Baker, V. (2017), “An integrative transformative service framework to improve engagement in a social service ecosystem: the case of He Waka Tapu”, Journal of Services Marketing, Vol. 31 Nos 4/5, pp. 423-437.

Holmes, H., and Burgess, G. (2020), 2Pay the wifi or feed the children: Coronavirus has intensified the UK’s digital divide” University of Cambridge. https://www.cam.ac.uk/stories/digitaldivide.

Kirkevold, M. and Bergland, A. (2007), “The quality of qualitative data: issues to consider when interviewing participants who have difficulties providing detailed accounts of their experiences”, International Journal of Qualitative Studies on Health and Well-Being, Vol. 2 No. 2, pp. 68-75.