The ethics of doing nothing. Suicide-bereavement and research: ethical and methodological considerations

Abstract

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.

Fig. 1.

Participation and non-participation among suicide-bereaved and non-bereaved parents. All information in this figure is based on information from the registries (only group level) or from the parents themselves. Due to the requirements of the Swedish ‘act of secrecy’ the researchers did not know if the parent was bereaved or non-bereaved until he or she chose to reveal this personally. ^a The non-bereaved parents were matched with the suicide-bereaved parents in a ratio of 2:1 on the following variables: marital status, age, gender, living area and number of children. All the non-bereaved participants had a child born the same year as the deceased child's age. All fulfilled the same inclusion criteria as the suicide-bereaved parents: was born in a Nordic country and had a listed telephone number and address. ^b A total of 26 parents declined due to psychological distress or ill-health and four to somatic disease or conditions. The same reasons could be found among the partners who declined. ^c Other reasons were mainly related to unwillingness to participate in research per se (n = 22), ‘lack of time’ (n = 7) or the cause of death being something other than suicide (n = 6). ^d In all, 31 parents ended participation due to psychological distress or ill-health and two to a somatic disease or conditions. The same reasons could be found among the partners who declined. ^e Around 50 parents ended their participation without given reasons and about 50 referred to ‘lack of time’ or a ‘complicated life situation’.