Bereaved relatives' views about participating in cancer research
Bereaved relatives' views about participating in cancer research
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DOI：
10.1177/0269216311405091
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发表时间：
2012-06-01
影响因子：
4.4
通讯作者：
Gomes, Barbara
中科院分区：
文献类型：
--
作者：
Koffman, Jonathan;Higginson, Irene J.;Gomes, Barbara
背景资料：失去亲人的亲属被认为是一个弱势群体，在他们可能很困难的时候让他们参与研究是否合乎道德，这一点存在争议。我们进行了一项使用认知访谈的横断面研究，目的是探索在最近死亡的癌症患者的丧亲亲属中进行死亡率随访调查的可接受性，以告知关于结束的大规模调查的发展。结果：33名最近去世的癌症患者的近亲被邀请参加面对面的采访，或完成邮寄问卷。最后，他们被问及他们对参与研究的看法。9名死者家属参加了面对面的访谈，11人完成了邮寄问卷。11名亲属报告说，参加这项研究是有帮助的;其中6人不认为这是痛苦的，5人说，虽然这是痛苦的，但这是有帮助的。关于带回记忆，利他主义和治疗价值的想法浮现。结论：我们有新的证据表明，虽然从事后续调查可以唤起痛苦，许多参与者报告说，这是一个积极的经验。因此，我们认为，如果谨慎行事，这种做法是可以接受的。
Background: Bereaved relatives are considered to be a vulnerable group and there is debate as to whether it is ethical to engage them in research at a time that can be difficult for them.Aim: We conducted a cross-sectional study using cognitive interviewing with the aim of exploring the acceptability of a mortality follow-back survey among bereaved relatives of recently deceased cancer patients to inform the development of a large-scale survey about end-of-life care.Results: Thirty-three next-of-kin of recently deceased cancer patients were invited to participate in a face-to-face interview, or to complete a postal questionnaire. At the end, they were asked about their views of engaging in the study. Nine bereaved relatives participated in a face-to-face interview and 11 completed the postal questionnaire. Eleven relatives reported it was helpful to take part in the study; of these, six did not consider it distressing, and five stated whilst it had been distressing it had been helpful. Thoughts about bringing back memories, altruism and therapeutic value emerged.Conclusions: We have new evidence that although engaging in follow-back surveys can evoke distress, many participants report it to be a positive experience. We therefore believe that this approach is acceptable when conducted sensitively.