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父母接受透析治疗的儿童和青少年:他们所报告的生活质量。

Children and adolescents of parents undergoing dialysis therapy: their reported quality of life.

作者信息

Molzahn A E, Kikuchi J F

机构信息

Faculty of Human and Social Development, University of Victoria, British Columbia, Canada.

出版信息

ANNA J. 1998 Aug;25(4):411-7; discussion 418.

PMID:9791313
Abstract

OBJECTIVE

The objective of this study was to describe one aspect of the reported quality of life (QOL) (according to the Aristotelian-Thomistic philosophical theory of the good life) of a selected group of children and adolescents whose parents were being treated by dialysis therapy for renal failure.

DESIGN

An exploratory descriptive design was used.

SAMPLE/SETTING: Twenty-five children and adolescents ranging in age from 8 to 16 years, selected on a convenience basis, participated in the study. The setting was a major renal treatment program in Western Canada.

METHODS

Semi-structured interviews were held with children and adolescents privately, in their homes, once a week for two to three weeks. The interview data were subjected to content analysis.

RESULTS

Generally, the children and adolescents seemed to possess the real goods necessary for a good life. However, they appeared to need more goods of the mind: (a) an intellective good--more information about how their various family members were feeling, and (b) decreased fear in relation to their parents' condition and treatments. Also, they discussed the need for carefree family vacations, an instrumental means to sensory pleasure--a bodily good.

CONCLUSION

Overall, the QOL of this group of children and adolescents seemed to be good. The parents' renal disease and dialysis therapy had an impact on the children's lives in that sometimes it interfered with and sometimes it facilitated attainment of real goods. Further study is required to examine the effects on the QOL of children and adolescents regarding dialysis modality, age/gender of the child or adolescent, and stage of treatment.

摘要

目的

本研究的目的是描述一组特定儿童和青少年的生活质量(QOL)报告的一个方面(根据亚里士多德 - 托马斯主义关于美好生活的哲学理论),这些儿童和青少年的父母正在接受肾衰竭透析治疗。

设计

采用探索性描述性设计。

样本/地点:25名年龄在8至16岁之间的儿童和青少年,基于便利原则选取,参与了本研究。地点是加拿大西部的一个主要肾脏治疗项目。

方法

在儿童和青少年家中与他们单独进行半结构化访谈,每周一次,持续两到三周。对访谈数据进行内容分析。

结果

总体而言,儿童和青少年似乎拥有美好生活所需的真正的善。然而,他们似乎需要更多精神层面的善:(a)一种理智的善——更多关于他们各个家庭成员感受的信息,以及(b)减少对父母病情和治疗的恐惧。此外,他们还讨论了需要无忧无虑的家庭度假,这是获得感官愉悦(一种身体层面的善)的一种手段。

结论

总体而言,这组儿童和青少年的生活质量似乎良好。父母的肾病和透析治疗对儿童的生活产生了影响,有时会干扰,有时会促进真正的善的获得。需要进一步研究以考察透析方式、儿童或青少年的年龄/性别以及治疗阶段对儿童和青少年生活质量的影响。

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