Conducting ethical internet-based research with vulnerable populations: a qualitative study of bereaved participants’ experiences of online questionnaires

Abstract

Background: Bereavement can be considered a potentially traumatic experience, and concerns have been raised about conducting grief research responsibly online. Objective: Given that online research introduces new methodological opportunities and challenges, we aimed to develop a greater understanding of how bereaved individuals experience participation in online research. Method: One day after participation in an online grief study, 876 participants, bereaved on average for 40 months, received a ‘check-in’ email to support well-being and offer further contact if needed. Although not explicitly asked to respond if no help was needed, 300 participants sent email replies, with only six requesting support. These responses were analysed qualitatively using content analysis. Results: Results suggested that participants found it acceptable to be asked about their grief and while difficult emotions were frequently described in response to the questionnaires, these reactions were temporary. A range of positive reactions was also reported, including new realizations arising from completing the research and changes in thinking related to grief. Participants also wrote about their appreciation for the study and how it was carried out, as well as a desire to contribute more to the study and to help others in a similar position. Conclusions: We suggest that the use of the check-in email to support well-being following study completion, along with advice on preparing to take part, contributed to positive experiences of participation and we recommend these strategies for future studies. These findings could allay clinical concerns about conducting online research with vulnerable populations, as well as raising questions about the possible therapeutic impact of measurement.

Prolonged grief and posttraumatic stress disorder following the loss of a significant other: An investigation of cognitive and behavioural differences

“…Participants completed self-report symptom measures and the Oxford Grief Study measures of memory characteristics, negative appraisals, maladaptive coping strategies, social disconnection, and grief resilience as well as validated measures of attachment and dependency and psychopathology online in accordance with ethical guidelines [ 47 ]. Informed consent was obtained from participants electronically and the study was approved by the University of Oxford Medical Sciences Inter-Divisional Research Ethics Committee MS-IDREC-C1-2015-230.…”

The Masking of Mourning: Social Disconnection After Bereavement and Its Role in Psychological Distress

“…Participants completed symptom measures and the OG-SD online in accordance with ethical guidelines (Smith, Thew, & Graham, 2018). Participants were compensated for their time.…”

A qualitative analysis of loss-related memories after cancer loss: a comparison of bereaved people with and without prolonged grief disorder

“…After data collection, participants were debriefed and given a research support leaflet detailing relevant free services. Participants were sent a ‘check in’ email the next day to see if there were any aspects of the session or their reaction that they would like to discuss (Smith, Thew, & Graham, 2018 ).…”