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父母关于养育患癌孩子所带来的变化和挑战的报告。

Parental reports of changes and challenges that result from parenting a child with cancer.

作者信息

Enskär K, Carlsson M, Golsäter M, Hamrin E, Kreuger A

机构信息

Department of Caring Sciences, Faculty of Health Sciences, University of Linköping, Sweden.

出版信息

J Pediatr Oncol Nurs. 1997 Jul;14(3):156-63. doi: 10.1016/s1043-4542(97)90051-5.

Abstract

Cancer in a child leads to a more stressful family life, including problems in adjusting to the situation. The aim of this study was to identify the parents' experience of problems related to their child's/adolescent's cancer and the effect of those problems on the parents' life situation. Swedish parents of 15 children and adolescents with varying diagnoses and treatments were interviewed using qualitative methods. The interview data were analyzed by two researchers using a constant comparative method. The results included eight categories of problems influencing the parents' life situation: watching our child suffer; being governed by our child's disease; behaving differently as a family member; experiencing strong feelings and reactions; trying to cope; dealing with the reactions of others; finding support from others; and evaluating the quality of care. Seven of these categories validate previously reported parental concerns, but one, evaluating the quality of care, has not been previously reported. Study findings can be used to help sensitize health care personnel to the problems experienced by parents of children and adolescents with cancer and the capacity parents have to deal with the problems.

摘要

儿童患癌症会导致家庭生活压力更大,包括在适应这种情况方面存在问题。本研究的目的是确定父母在其子女/青少年患癌症相关问题上的经历,以及这些问题对父母生活状况的影响。采用定性方法对15名患有不同诊断和接受不同治疗的儿童及青少年的瑞典父母进行了访谈。两位研究人员使用持续比较法对访谈数据进行了分析。结果包括影响父母生活状况的八类问题:看着我们的孩子受苦;受孩子疾病的支配;作为家庭成员行为方式不同;经历强烈的情感和反应;努力应对;应对他人的反应;从他人那里获得支持;以及评估护理质量。其中七类问题证实了之前报道的父母的担忧,但有一类,即评估护理质量,此前尚未有报道。研究结果可用于帮助医护人员认识到患癌症儿童及青少年的父母所经历的问题,以及父母应对这些问题的能力。

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