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首页> 美国卫生研究院文献>Journal of Pediatric Oncology Nursing >Participation in Online Research Examining End-of-Life Experiences: Is It Beneficial Burdensome or Both for Parents Bereaved by Childhood Cancer?
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Participation in Online Research Examining End-of-Life Experiences: Is It Beneficial Burdensome or Both for Parents Bereaved by Childhood Cancer?

机译：参加在线研究以检验生命终结的经验：对于儿童癌症的父母来说这是有益的负担重的还是两者兼而有之？

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It is important for the health care community to understand the impact of a child’s death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them. The current study examines the perceived benefit and burden of parents participating in a survey exploring their perceptions of their child’s end-of-life (EoL) and bereavement experiences. Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates through a closed social media (Facebook) group. One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. More than three quarters of parents reported at least “a little benefit” and half reported at least “a little burden” associated with participation. Less burden was perceived by younger and female parents, parents of younger children, those who had felt prepared to meet their children’s emotional needs at EoL, and those not using bereavement services at the time of the survey. With the increasing use of social media as a source for bereaved parents to receive and provide emotional support, it is important for clinicians and researchers to understand the perceived benefits and risks of participating in research about EoL experiences via online recruitment. Our findings suggest that the benefit and burden of online research participation may vary for bereaved parents, but further research is necessary to replicate the findings and explore ways to optimize the use of this approach.
机译：对于医疗保健界来说，重要的是要了解孩子的死亡对父母运作的影响。然而，让丧亲的父母参与调查生活中如此紧张的时刻的研究可能会对他们造成伤害。这项最新研究调查了参加调查的父母的感知收益和负担，该调查探讨了他们对孩子的临终（EoL）和丧亲经历的看法。邀请其孩子因癌症或癌症治疗并发症而死亡的父母完成由儿童心理社会肿瘤学专业人士开发的调查，并由亲人拥护者通过封闭的社交媒体（Facebook）组提供意见。 178名死于0至37岁（平均年龄12岁）儿童的父母参加了比赛。超过四分之三的父母报告至少“一点好处”，一半的父母报告至少“一点负担”。年龄较小的父母，较年幼的孩子的父母，那些准备在EoL满足孩子情感需求的人以及在调查时不使用丧亲服务的人，负担都减少了。随着越来越多地使用社交媒体作为失去亲人的父母获得并提供情感支持的来源，对于临床医生和研究人员而言，重要的是要了解通过在线招聘参与EoL体验研究的感知收益和风险。我们的研究结果表明，失去亲人的父母在线研究的利益和负担可能会有所不同，但是需要进一步的研究来复制研究结果并探索优化使用这种方法的方法。

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