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儿童因恶性肿瘤死亡后父母对医疗保健不足的认知及内疚感:一项基于人群的长期随访

Perceptions of inadequate health care and feelings of guilt in parents after the death of a child to a malignancy: a population-based long-term follow-up.

作者信息

Surkan Pamela J, Kreicbergs Ulrika, Valdimarsdóttir Unnur, Nyberg Ullakarin, Onelöv Erik, Dickman Paul W, Steineck Gunnar

机构信息

Division of Clinical Cancer Epidemiology, Department of Oncology and Pathology, Karolinska Institutet, Karolinska Hospital, Stockholm, Sweden.

出版信息

J Palliat Med. 2006 Apr;9(2):317-31. doi: 10.1089/jpm.2006.9.317.

DOI:10.1089/jpm.2006.9.317
PMID:16629562
Abstract

BACKGROUND

Parental feelings of guilt can be a serious problem after the death of a child to a malignancy. This study identified predictors of feelings of guilt in parents during the year after a child's death.

METHODS

The Swedish Cause of Death Register and Swedish Cancer Register were used to identify all parents in Sweden who had a child who died of a malignancy between 1992-1997.

RESULTS

Among parents not reporting recent depression, those who were not confident that their child would immediately receive help from the staff in the hospital while he or she was sick with a malignancy (compared to those who felt partly or entirely sure, relative risk [RR] 4.0; 95% confidence interval [CI] 2.1-7.6), were at increased risk for reporting daily or weekly feelings of guilt in the year after the child's death. Parents who perceived that the staff in the pediatric cancer ward were incompetent were at increased risk (compared to parents reporting partial or total competence, RR 3.7; 95% CI 1.6-8.6). Compared to parents reporting that their children had moderate or much access, those who felt their children had little or no access to pain relief, dietary advice, anxiety relief, and relief of other psychological symptoms beside anxiety were at more than two times greater risk for reporting feelings of guilt.

CONCLUSIONS

Bereaved parents' perceptions of inadequate health care were associated with subsequent feelings of guilt during the year following their child's death due to a malignancy.

摘要

背景

孩子因恶性肿瘤去世后,父母的内疚感可能会成为一个严重问题。本研究确定了孩子去世后一年内父母产生内疚感的预测因素。

方法

利用瑞典死亡原因登记册和瑞典癌症登记册,确定1992年至1997年间瑞典所有孩子因恶性肿瘤去世的父母。

结果

在未报告近期有抑郁情绪的父母中,那些不确定孩子在患恶性肿瘤生病时能否立即得到医院工作人员帮助的父母(与那些部分确定或完全确定的父母相比,相对风险[RR]为4.0;95%置信区间[CI]为2.1 - 7.6),在孩子去世后的一年内报告每天或每周有内疚感的风险增加。认为儿科癌症病房工作人员不称职的父母风险增加(与报告部分或完全称职的父母相比,RR为3.7;95%CI为1.6 - 8.6)。与报告孩子有适度或大量机会获得相关帮助的父母相比,那些觉得孩子很少或根本没有机会获得疼痛缓解、饮食建议、焦虑缓解以及除焦虑外其他心理症状缓解的父母,报告有内疚感的风险高出两倍多。

结论

痛失孩子的父母对医疗保健不足的认知与孩子因恶性肿瘤去世后一年内随后产生的内疚感有关。

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