Care-related distress:: A nationwide study of parents who lost their child to cancer
Care-related distress:: A nationwide study of parents who lost their child to cancer
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DOI：
10.1200/jco.2005.08.557
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发表时间：
2005-12-20
影响因子：
45.3
通讯作者：
Henter, JI
中科院分区：
文献类型：
--
作者：
Kreicbergs, U;Valdimarsdóttir, U;Henter, JI
目的：姑息治疗是癌症治疗的重要组成部分。然而，很少有人知道如何照顾相关的因素影响丧亲之痛的亲密在一个长期的角度来看。我们进行了一项以人口为基础的，全国范围内的研究，解决这个问题，专注于潜在的护理相关的压力在父母失去一个孩子cancer.Methods：在2001年，我们试图联系所有的父母在瑞典谁失去了一个孩子在1992年至1997年癌症。通过匿名邮寄问卷，父母被问及他们对所给予的照顾的经历，以及这些经历在多大程度上仍然影响着他们。结果在561名合格的家长中，449人（80%）提供了信息。在196名无法缓解的儿童家长中，111名（57%）在丧亲后4 ~ 9年仍受其影响。在138名父母中，有78名（57%）在随访时仍然受到影响。如果死亡时工作人员不在场，则父母报告其孩子死亡时有困难的可能性增加（相对风险= 1.4; 95%CI，1.0至1.8）。百分之十的父母（251名家长中有25名）对上个月在儿科疱疹/肿瘤中心提供的护理不满意;其他医院的相应数字为20%（168名家长中有33名; P = .0163）。身体疼痛和死亡的时刻是两个重要的问题，以解决在临终关怀的儿童与癌症，试图减少长期的痛苦，在失去亲人的父母。
Purpose: Palliative care is an important part of cancer treatment. However, little is known about how care-related factors affect bereaved intimates in a long-term perspective. We conducted a population-based, nationwide study addressing this issue, focusing on potential care-related stressors in parents losing a child to cancer.Methods: In 2001, we attempted to contact all parents in Sweden who had lost a child to cancer in 1992 to 1997. The parents were asked, through an anonymous postal questionnaire, about their experience of the care given and to what extent these experiences still affect them today. Results Information was supplied by 449 (80%) of 561 eligible parents. Among 196 parents of children whose pain could not be relieved, 111 (57%) were still affected by it 4 to 9 years after bereavement. Among 138 parents reporting that the child had a difficult moment of death, 78 (57%) were still affected by it at follow-up. The probability of parents reporting that their child had a difficult moment of death was increased (relative risk = 1.4; 95% Cl, 1.0 to 1.8) if staff were not present at the moment of death. Ten percent of the parents (25 of 251 parents) were not satisfied with the care given during the last month at a pediatric hernatology/oncology center; the corresponding figure for care at other hospitals was 20% (33 of 168 parents; P = .0163).Conclusion: Physical pain and the moment of death are two important issues to address in end-of-life care of children with cancer in trying to reduce long-term distress in bereaved parents.