Researching people who are bereaved: Managing risks to participants and researchers

Abstract

Conducting qualitative research, especially in areas considered 'sensitive', presents many challenges. The processes involved in such research often expose both participants and the research team to a vast array of risks, which may cause damage to their personal, professional, social and cultural worlds. Historically, these risks have been considered independent of each other, with most studies exploring only the risks to participants or only risks to researchers. Additionally, most researchers only consider risks during data collection, frequently overlooking risks that might be present during other phases of the research project. We aim, therefore, to bring together this fractured literature to enable an integrated exploration of the current academic discourse relating to risks to participants with the literature exploring risks to researchers across all phases of the research process. This article draws on personal experiences to highlight ethical issues and risks encountered by both participants and researchers throughout all phases of a research project. Beginning in recruitment, we discuss the risk of secondary distress in participants arising from researcher contact and then explore the concept of informed consent during grief and bereavement research. We then focus on risks present during data collection, examining risks for participants, such as emotional distress, and potential safety risks for the research team. Finally, we consider the risks which arise in data analysis, including both confidentiality and the possibility of researcher burnout. Previous recommendations are summarised, with new management strategies suggested based on lessons learned along the way.

Secondary Trauma: Emotional Safety in Sensitive Research

“…Of course, these are not unique considerations for those researching GBV, researchers working with trauma in other fields may encounter similar. In fact, a brief scoping of the literature indicates that secondary distress has been raised as an issue in recent years by researchers working in a number of fields, including suicide (McKenzie et al 2016), cancer (Benoot and Bilsen 2016;), and bereavement (Butler et al 2017), in addition to those working on topics relating to violence and abuse (Nikischer 2019). These topics have risk of serious harm or death in common and, as a recent revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) also indicates, extend the populations seen as potentially vulnerable to developing ST to include anyone with indirect exposure to aversive details of events where a person has been 'exposed to: death, threatened death, actual or threatened serious injury, or actual or threatened sexual violence' (APA 2013).…”

The Evolutionary Nature of Parent–Provider Relationships at Child’s End of Life With Cancer

“…In this study, we described the dynamic nature of relationships through interviews with parents in their homes and observations within the hospital. The changing nature of parents and providers’ interactions has previously been reported with children dying in ICU across illness trajectories (Butler et al, 2017). Dynamicity has previously been described as involving beliefs, resilience, coping, and relationships embedded in anticipatory grief of mothers’ lived experience when losing a child with cancer (Lou et al, 2015).…”

“…The discussions with these experts during the entire process were essential to gaining awareness of hermeneutic concepts, distinguish prejudices, achieve the fusion of horizons, and engage in the hermeneutic circle. The process also facilitated assessment of quality during the data collection and analysis process and reduced potential risks for participants and researchers due to the sensitive topics involved in this study (Butler et al, 2017).…”

Exploring the experiences and perspectives of substitute decision-makers involved in decisions about deceased organ donation: a qualitative study protocol

“…We will also have escalation (eg, confidential helpline to at each site) and debrief (eg, postinterview reflection forms, regular debrief meetings with the interview team) processes in place to protect the well-being of our interview team in case they are emotionally affected by anything discussed during the interviews and to identify potential researcher burnout 35…”