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幼儿患癌日常生活经历——一项为期三年的访谈研究。

Young children's experiences of living an everyday life with cancer - A three year interview study.

作者信息

Darcy Laura, Enskär Karin, Björk Maria

机构信息

Faculty of Caring Science, Work Life and Social Welfare, University of Boras, S-508 00, Boras, Sweden.

School of Health Science, Jonkoping University, PO Box 1026, S-551 11, Jonkoping, Sweden.

出版信息

Eur J Oncol Nurs. 2019 Apr;39:1-9. doi: 10.1016/j.ejon.2018.12.007. Epub 2018 Dec 23.

Abstract

PURPOSE

The young child's experiences of living with cancer are crucial to providing evidence based care. This study explores and describes experiences of everyday life of young children with cancer, over a three year period from diagnosis.

METHOD

This is a longitudinal, inductive interview study with young children with cancer, and their parents. Interviews from shortly after diagnosis, six and 12 months after diagnosis have been reanalysed. Interviews with the same children and their parents from 18 to 36 months after diagnosis have been analysed for the first time in the present paper. A longitudinal temporal analysis at category level for five synchronic data sets forms the basis for the results.

RESULTS

The child living with cancer over a three year period is described as a child apart, striving to live an everyday life. This description is built on three categories: I want to be a child like any other, I need security and control and I feel lonely and left out. Young children with cancer actively strive to understand their illness, participate in care and live an ordinary everyday life- but with ongoing feelings of social isolation and loneliness.

CONCLUSIONS

Young children with cancer need access to and ongoing contact with peers and preschool. A structured follow-up throughout the cancer trajectory and not just during active treatment, is necessary. A child-centred philosophy of care would guide the child towards attainment of health and wellbeing.

摘要

目的

幼儿患癌后的生活经历对于提供循证护理至关重要。本研究探讨并描述了患癌幼儿从确诊起三年内的日常生活经历。

方法

这是一项针对患癌幼儿及其父母的纵向归纳性访谈研究。对确诊后不久、确诊后6个月和12个月时的访谈进行了重新分析。本文首次分析了对同一批儿童及其父母在确诊后18至36个月时进行的访谈。对五个同步数据集在类别层面进行纵向时间分析构成了结果的基础。

结果

在三年时间里,患癌儿童被描述为一个与众不同的孩子,努力过着正常生活。这一描述基于三个类别:我想和其他孩子一样、我需要安全感和掌控感、我感到孤独和被排斥。患癌幼儿积极努力去理解自己的病情,参与护理并过上普通的日常生活,但持续存在社会孤立感和孤独感。

结论

患癌幼儿需要与同龄人及幼儿园接触并保持持续联系。在整个癌症病程中,而不仅仅是在积极治疗期间,进行结构化随访是必要的。以儿童为中心的护理理念将引导儿童实现健康和幸福。

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