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先天性肾上腺皮质增生症患儿父母的心理影响:一项来自斯里兰卡的研究。

Psychological impact on parents of children with congenital adrenal hyperplasia: a study from Sri Lanka.

作者信息

de Silva K S H, de Zoysa Piyanjali, Dilanka W M S, Dissanayake B S

出版信息

J Pediatr Endocrinol Metab. 2014 May;27(5-6):475-8. doi: 10.1515/jpem-2013-0267.

DOI:10.1515/jpem-2013-0267
PMID:24468601
Abstract

INTRODUCTION

Congenital adrenal hyperplasia (CAH) is a group of autosomal recessively inherited disorders with significant morbidity. The long-term implications result in immense psychological stress to the parents. This study assessing the psychological impact on the parents is a first in Sri Lanka and one of the few worldwide.

OBJECTIVE

Document the presence of depressive symptoms in parents of children with CAH.

DESIGN

Study participants were 37 parents of children diagnosed with CAH who were attending an endocrinology clinic of the largest children's hospital in Sri Lanka. Centre for Epidemiological Studies-Depression scale (CES-D), a psychometrically sound scale for assessing depressive symptomatology, was used.

RESULTS

The study classified 59% of the parents as being affected, and the psychological impact on them did not reduce with time.

CONCLUSION

Parents of children with CAH demonstrated symptoms of depression that did not abate with the passage of time.

摘要

引言

先天性肾上腺皮质增生症(CAH)是一组常染色体隐性遗传疾病,发病率较高。其长期影响会给父母带来巨大的心理压力。本研究评估对父母的心理影响,这在斯里兰卡尚属首次,在全球范围内也为数不多。

目的

记录先天性肾上腺皮质增生症患儿父母中抑郁症状的存在情况。

设计

研究参与者为37名被诊断患有先天性肾上腺皮质增生症患儿的父母,他们在斯里兰卡最大儿童医院的内分泌科就诊。使用了流行病学研究中心抑郁量表(CES-D),这是一种评估抑郁症状的心理测量学上可靠的量表。

结果

该研究将59%的父母归类为受影响者,并且对他们的心理影响并未随时间减轻。

结论

先天性肾上腺皮质增生症患儿的父母表现出抑郁症状,且这些症状不会随时间减轻。

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