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The ethics of doing nothing. Suicide-bereavement and research: ethical and methodological considerations
Karolinska institutet.ORCID iD: 0000-0003-1835-1960
Karolinska institutet; Sahlgrenska akademin Göteborgs universitet.
The Center for Crisis Psychology, Bergen, Norway; The Norwegian Institute of Public Health, Oslo, Norway .
Karolinska institutet.
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2014 (English)In: Psychological Medicine, ISSN 0033-2917, E-ISSN 1469-8978, Vol. 44, no 16, 3409-3420 p.Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2014. Vol. 44, no 16, 3409-3420 p.
Keyword [en]
bereavement, epidemiologic methods, ethics, research design, suicide
National Category
Other Medical Sciences not elsewhere specified
URN: urn:nbn:se:esh:diva-4128DOI: 10.1017/S0033291713001670PubMedID: 23867073OAI: diva2:755549
Available from: 2014-10-14 Created: 2014-10-14 Last updated: 2015-09-18Bibliographically approved
In thesis
1. Parents who have lost a son or daughter through suicide: towards improved care and restored psychological health
Open this publication in new window or tab >>Parents who have lost a son or daughter through suicide: towards improved care and restored psychological health
2014 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background Parents that have lost a son or daughter through suicide are at risk of developing psychological morbidity that may become long-lasting and even life-threatening. Despite this the aftermath of a suicidal loss is yet to be carefully studied. One reason for the lack of studies is that trauma-related surveys may be hindered when the risks of asking participants are overestimated and the benefits not considered. Another reason is methodological difficulties. The goal of our studies is to provide knowledge that may be used to improve the professional care of suicide-bereaved parents. This thesis describes the first steps towards the goal.

Methods We developed hypotheses, questionnaires and an ethical protocol in a qualitative preparatory study with 46 suicide-bereaved parents (paper I). In a population-based survey we then collected data from parents who lost a child (15 to 30 years of age) to suicide, two to five years earlier. In all, 666 of 915 (73%) bereaved and 508 of 666 (74%) non-bereaved (matched 2:1) parents participated.

Results We found that 633 (95%) of the bereaved parents thought the study was valuable and that 604 (91%) would recommend another parent to participate. Among the bereaved 334 (50%) reported being positively affected by their participation, whereas 70 (11%) reported being temporary negatively affected (most referring to sadness). The bereaved parents’ need for sharing their experiences regarding the suicide of their child was widely expressed and 639 (96%) thought the healthcare should contact parents bereaved through suicide to offer information and support (paper II). In all, 167 (25%) of the bereaved parents were currently taking antidepressants or were moderate-to severely depressed according to PHQ-9 versus 35 (9%) of the non-bereaved (RR 2.7). Fourteen percent of the bereaved reported they had had psychological morbidity more than 10 years earlier, versus 14% among the non-bereaved (RR 1.0). The highest levels of current psychological morbidity were found among the group of bereaved parents with psychological premorbidity (paper III). Of the bereaved parents 460 had (69%) viewed the body at a formal setting, among these parents 430 of 446 (96%) answered “no” to the question “Do you regret that you viewed your child after the death”. Among the parents that had not viewed 99 of 159 (62%) answered “no” to the question “Do you wish that you had viewed your child after the death” (paper IV).

Conclusions We found that most parents perceived the research participation as something positive and that the contact was welcomed. Bereavement was associated with high prevalence of psychological morbidity two to five years after the loss. We found no difference in prevalence of premorbidity between the bereaved and the non-bereaved parents. The significant minority that had premorbidity before the loss did however report the highest levels of current psychological morbidity. By and large everyone that had viewed their deceased child in a formal setting did not regret the viewing. Of equal importance, more than half of those who did not view the body did not wish that they had.

Place, publisher, year, edition, pages
Stockholm: Karolinska institutet, 2014. 85 p.
National Category
Research subject
urn:nbn:se:esh:diva-4816 (URN)9789175492827 (ISBN)
Public defence
2014-01-20, 10:00
Available from: 2015-09-18 Created: 2015-08-31 Last updated: 2015-09-18Bibliographically approved

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