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大龄自闭症成年子女父母的故事:平衡之术。

The stories of older parents of adult sons and daughters with autism: a balancing act.

机构信息

The University of Sydney, Sydney, New South Wales, Australia.

出版信息

J Appl Res Intellect Disabil. 2014 Mar;27(2):163-73. doi: 10.1111/jar.12063. Epub 2013 Jun 17.

Abstract

BACKGROUND

Researchers acknowledge the importance of understanding how families of children with autism cope. Yet, little is known about the experiences of older parents of adults with autism.

MATERIALS AND METHODS

In-depth interviews were conducted with 16 older parents of adults with autism. Narrative analysis was used to gain insights into their lived experiences.

RESULTS

Participants' narratives reflected the notion that much of their experience was a delicate balancing act as they attempted to manage their offspring's symptoms of autism whilst achieving a degree of fulfilment in their own lives. Parents did not believe that formal services had adequately supported their ability to provide care whilst meeting other needs within the family context.

CONCLUSIONS

The findings have implications for services that attempt to support older parents' abilities to provide care, including the need for tailored intervention strategies that match each family's unique needs.

摘要

背景

研究人员认识到了解自闭症儿童家庭如何应对的重要性。然而,对于成年自闭症患者的年长父母的经历知之甚少。

材料与方法

对 16 名成年自闭症患者的年长父母进行了深入访谈。采用叙事分析来深入了解他们的生活经历。

结果

参与者的叙述反映了这样一种观点,即他们的大部分经历都是一种微妙的平衡行为,他们试图在管理子女自闭症症状的同时,在自己的生活中实现一定程度的满足感。父母们认为,正规服务并没有充分支持他们在满足家庭环境中的其他需求的同时提供护理的能力。

结论

这些发现对试图支持年长父母提供护理能力的服务具有影响,包括需要制定与每个家庭独特需求相匹配的定制干预策略。

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