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南非自闭症谱系障碍儿童父母的生活质量。

Quality of life among parents of South African children with autism spectrum disorder.

机构信息

1Department of Developmental Paediatrics,Department of Paediatrics and Child Health,University of Cape Town,Red Cross War Memorial Children's Hospital,Cape Town,South Africa.

出版信息

Acta Neuropsychiatr. 2018 Aug;30(4):226-231. doi: 10.1017/neu.2018.5. Epub 2018 Mar 22.

DOI:10.1017/neu.2018.5
PMID:29565002
Abstract

OBJECTIVE

To describe the quality of life (QOL) of South African parents caring for children with autism spectrum disorder (ASD) as compared with parents of typically developing (TD) children from the same community.

METHODS

A cross-sectional study was done evaluating the QOL of parents of 52 children (26 parents of children with ASD versus 26 parents of TD children) using a structured measure, (World Health Organization Quality of Life Assessment-BREF).

RESULTS

The mean age of the children with ASD was 64.9 months (SD 14.5) versus 60.1 months (SD 13.5) for TD group. There was a male predominance among group of children with ASD (48 boys, four girls). The mean parental age of the ASD group was 32.9 years (SD 7.8) compared with 33.8 years (SD 6.8) for the TD group. As compared with parents of the TD children, parents of children with ASD had lower mean QOL scores in the four QOL domains: physical, psychological, social and environmental health (p<0.0001). the domain where the discrepancy between groups was greatest was the physical domain Where the mean score was 52.1 (SD 18.7) in the ASD group and 92 (SD 10.4) in the TD group. Lower income, severity level of ASD and lack of access to school placement of children with ASD were found significantly associated with parents' QOL domains.

CONCLUSION

QOL of parents of children with ASD is significant lower than that of the parents of their TD peers across all domains and is an important component in management of the family which needs to be explored and addressed.

摘要

目的

描述南非照顾自闭症谱系障碍(ASD)儿童的父母的生活质量(QOL)与来自同一社区的典型发育(TD)儿童的父母相比。

方法

采用横断面研究评估了 52 名儿童的父母的 QOL(26 名 ASD 儿童的父母与 26 名 TD 儿童的父母),使用结构化量表(世界卫生组织生活质量评估简表)。

结果

ASD 儿童的平均年龄为 64.9 个月(SD 14.5),TD 组为 60.1 个月(SD 13.5)。ASD 组中男孩居多(48 名男孩,4 名女孩)。ASD 组父母的平均年龄为 32.9 岁(SD 7.8),TD 组为 33.8 岁(SD 6.8)。与 TD 儿童的父母相比,ASD 儿童的父母在四个 QOL 领域的平均 QOL 评分较低:身体、心理、社会和环境卫生(p<0.0001)。两组之间差异最大的领域是身体领域,ASD 组的平均得分为 52.1(SD 18.7),TD 组为 92(SD 10.4)。收入较低、ASD 严重程度水平以及 ASD 儿童无法获得学校安置与父母的 QOL 领域显著相关。

结论

ASD 儿童的父母的 QOL 明显低于其 TD 同龄人在所有领域的 QOL,这是家庭管理的一个重要组成部分,需要进行探讨和解决。

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