a1 Stockholm Centre for Psychiatric Research and Education, Department of Clinical Neuroscience, Karolinska Institutet, Sweden
a2 Division of Clinical Cancer Epidemiology, Department of Oncology–Pathology, Karolinska Institutet, Stockholm, Sweden
a3 Division of Clinical Cancer Epidemiology, Department of Oncology, Institute of Clinical Sciences, Sahlgrenska Academy, Gothenburg, Sweden
a4 The Center for Crisis Psychology, Bergen, Norway
a5 The Norwegian Institute of Public Health, Oslo, Norway
Background. Valuable trauma-related research may be hindered when the risks of asking participants about traumatic events are not carefully weighed against the benefits of their participation in the research.
Method. The overall aim of our population-based survey was to improve the professional care of suicide-bereaved parents by identifying aspects of care that would be amenable to change. The study population included 666 suicide-bereaved and 377 matched (2:1) non-bereaved parents. In this article we describe the parents' perceptions of their contacts with us as well as their participation in the survey. We also present our ethical-protocol for epidemiological surveys in the aftermath of a traumatic loss.
Results. We were able to contact 1410 of the 1423 eligible parents; eight of these parents expressed resentment towards the contact. Several participants and non-participants described their psychological suffering and received help because of the contact. A total of 666 suicide-bereaved and 377 non-bereaved parents returned the questionnaire. Just two out of the 1043 answered that they might, in the long term, be negatively affected by participation in the study; one was bereaved, the other was not. A significant minority of the parents reported being temporarily negatively affected at the end of their participation, most of them referring to feelings of sadness and painful memories. In parallel, positive experiences were widely expressed and most parents found the study valuable.
Conclusions. Our findings suggest, given that the study design is ethically sound, that suicide-bereaved parents should be included in research since the benefits clearly outweigh the risks.
(Received March 08 2013)
(Revised May 31 2013)
(Accepted June 06 2013)
(Online publication July 19 2013)