A recent study (https://doi.org/10.1080/20008198.2018.1506231) from Dr Kirsten Smith, Dr Graham Thew and Dr Belinda Graham at the department’s Oxford Centre for Anxiety Disorders and Trauma (OxCADAT) looks at how participating in online research about grief affects people who have lost a loved one.
Internet-based studies can be a useful way of learning about how people grieve, as they allow people to respond in their own time and from their own preferred location. However, concerns have been raised about the ethics of using the internet for this research, citing possible emotional risks to people who are already in a vulnerable position due to their loss.
To learn more, researchers worked in collaboration with bereavement charity The Loss Foundation. They recruited more than 850 people who had experienced the loss of a close friend or family member. They included people in the first few months after losing a partner, those who had lost a child, and those who were bereaved through violent means. Informed consent for the use of all data arising from the study was given by all participants. After completing a standard online questionnaire on their thoughts and feelings about their loss, the participants were sent a check-in email 24 hours later. In the email, researchers thanked people for their participation, offered their condolences, and explained that it is normal to experience difficult emotions after answering questions about grief. The email also offered free further support from the psychologists in charge of the study if needed. No response was required – but 300 participants, over one-third of the total study, did choose to respond.
People also wrote about a range of positive reactions to participating in the research... As one participant said, "I have actually found reflecting on and specifying my feelings helpful in making some sense of the turmoil."
The vast majority of those who responded reported either no new negative emotions, or temporary negative feelings that had subsided by the time they responded to the follow-up email. 46% reported their emotional state as “okay” or “no change” and 23% reported “temporary negative” feelings. Only 2% reported a negative impact without indicating how long it had lasted, while just 6 out of 300 email responses requested further support.
People also wrote about a range of positive reactions to participating in the research. These included new realisations about their experiences and changes in their thinking related to grief. Many also reported feeling an increase in self-awareness, a sense of “seeing where they were at”, and finding it helpful to reflect on the process of grieving. As one patient (who has given permission for their words to be quoted) said, “I have actually found reflecting on and specifying my feelings helpful in making some sense of the turmoil”. The majority of emails also expressed appreciation for the study and how it was carried out and/or a wish to contribute more to the study and to help others in a similar position.
Psychologist Dr Kirsten Smith, part of the team who conducted the study, comments that “People appreciated being checked in with after answering emotional questions about their loss. This step allowed us to monitor risk and offer additional support if needed. We recommend that future studies incorporate a check-in message as an additional step”. She also pointed out that “these findings could allay clinical concerns about conducting online research with vulnerable populations” as the large majority of people did not report feeling any lasting negative effects from taking part in the research.
This study forms just one of many strands of research currently underway at OxCADAT: other projects include studies on the use of the internet to deliver psychological therapies, the development of training techniques to prevent PTSD in emergency workers and the development of the Improving Access to Psychological Therapies programme.