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一项针对患有慢性残疾儿童的兄弟姐妹的纵向研究。

A longitudinal study of siblings of children with chronic disabilities.

作者信息

Fisman S, Wolf L, Ellison D, Freeman T

机构信息

Division of Child and Adolescent Psychiatry, Children's Hospital of Western Ontario, London.

出版信息

Can J Psychiatry. 2000 May;45(4):369-75. doi: 10.1177/070674370004500406.

Abstract

OBJECTIVE

To examine the unaffected siblings of 2 different groups with chronic disabilities, pervasive developmental disorder (PDD) and Down syndrome (DS), over 3 years, comparing their adjustment with each other and with the siblings of a nondisabled group.

METHOD

This study examines 137 siblings of children with PDD, children with DS, and developmentally normal children (control group) initially and 127 siblings at follow-up 3 years later. Their adjustment is measured by the Survey Diagnostic Instrument (SDI), completed by caregivers and teachers. Predictor variables include sibling self-perception, social support, and relationship with sibling, as indicated by siblings; caregiver psychosocial factors such as parental stress, caregiver depression, and marital relationship; family systems characteristics as viewed by both caregiver and sibling; and difficulty that disabled child causes as perceived by the primary caregiver.

RESULTS

Significantly more adjustment problems are found in the siblings of PDD children at both times when compared with siblings of DS and control children. Caregivers of PDD children report the highest levels of distress and depression, and this persists over time. Parent distress was found, at both times, to be related to sibling adjustment problems, regardless of study group.

CONCLUSION

These results have implications for preventive intervention for the unaffected siblings of PDD children.

摘要

目的

在3年时间里对两组不同的慢性残疾儿童(广泛性发育障碍[PDD]和唐氏综合征[DS])的未受影响的兄弟姐妹进行研究,比较他们之间以及与非残疾组兄弟姐妹的适应情况。

方法

本研究最初对137名PDD儿童、DS儿童和发育正常儿童(对照组)的兄弟姐妹进行了调查,3年后随访时为127名兄弟姐妹。他们的适应情况通过由照顾者和教师完成的调查诊断工具(SDI)来衡量。预测变量包括兄弟姐妹的自我认知、社会支持以及兄弟姐妹所表明的与兄弟姐妹的关系;照顾者的心理社会因素,如父母压力、照顾者抑郁和婚姻关系;照顾者和兄弟姐妹所认为的家庭系统特征;以及主要照顾者所感知到的残疾儿童造成的困难。

结果

与DS儿童和对照组儿童的兄弟姐妹相比,PDD儿童的兄弟姐妹在两个时间点都存在明显更多的适应问题。PDD儿童的照顾者报告的痛苦和抑郁程度最高,且这种情况随时间持续存在。在两个时间点都发现,无论研究组如何,父母的痛苦都与兄弟姐妹的适应问题有关。

结论

这些结果对PDD儿童未受影响的兄弟姐妹的预防性干预具有启示意义。

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