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

机译:无所作为的伦理。自杀行为与研究:伦理学和方法论上的考虑

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摘要

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.
机译:背景:如果没有仔细权衡向参与者询问创伤事件的风险与参加研究的好处之间的关系,那么与创伤有关的有价值的研究可能会受到阻碍。方法我们基于人群的调查的总体目标是通过确定可以改变的照料方式来改善自杀丧亲父母的专业照料。研究人群包括666名自杀丧亲的父母和377名匹配(2:1)的未丧亲父母。在本文中,我们描述了父母对与我们联系以及参与调查的看法。我们还介绍了创伤性损失后流行病学调查的道德规范。结果:我们能够联系1423名合格父母中的1410名;这些父母中有八位对这种接触表示不满。一些参与者和非参与者描述了他们的心理痛苦,并由于接触而得到了帮助。共有666名自杀丧亲者和377名非丧亲父母返回了问卷。在1043个中只有两个回答说,从长远来看,他们可能会因参与研究而受到负面影响;一个人丧亲,另一个人丧命。少数父母报告称,他们在参加活动结束时受到了暂时的负面影响,其中大多数是悲伤和痛苦的回忆。同时,积极的经历被广泛表达,大多数父母认为这项研究有价值。结论:鉴于研究设计在伦理上是合理的,我们的研究结果表明,自杀受益的父母应纳入研究范围,因为其收益明显大于风险。

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