Background:

Autism spectrum disorder (ASD) is a complex neurological condition resulting in impaired social interaction and difficulty in understanding verbal and nonverbal communication. Caring for children with ASDs is challenging for both children and their caregivers. The child suffering from ASD starts to show the developmental outcome during early 2.5–3 years and continues thereafter till the child turns to an adult. Many caregivers face severe financial crises, high out-of-pocket healthcare expenses, and unemployment. Previous studies have reported a plethora of psychosocial problems affecting caregivers of children with ASD, ranging from stress, depression, anxiety, restrictions of activities, strain in marital relationships, and diminished physical health.

Objective:

This article aims to explore the concerns of the caregivers of children suffering from ASD. Aggregate themes were prepared based upon Corley and Gioia’s method of data structuring.

Methods:

After development and validation of an interview schedule, verbatim of seven caregivers of children with ASD were imported on the Atlas.ti version 8. Initial coding and final coding were followed by extracting the aggregate themes. Lincoln and Guba’s framework was used to assess the quality criteria as a part of qualitative analysis.

Results:

Caregivers face various challenges while caring for a child with ASD, with a negative impact on physical health, psychological well-being, societal reactions, and financial balance. Caregivers reported concerns related to service availability for ASD, poorly coping with the diagnostics, and disease processes.

Conclusions:

Caregivers undergo a lot of problems while taking care of a child with ASD. Health professionals must have an understanding of these problems and must provide the education and information for a better management. Furthermore, the findings of this study have policy implications for the health authorities for providing better health services to children diagnosed with ASD.

中文翻译：

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照顾者在管理自闭症谱系障碍儿童方面的挑战——定性分析

背景：

自闭症谱系障碍 (ASD) 是一种复杂的神经系统疾病，会导致社交互动受损以及难以理解语言和非语言交流。照顾自闭症儿童对儿童及其照顾者来说都是一项挑战。患有 ASD 的儿童在 2.5-3 岁早期开始表现出发育结果，此后一直持续到儿童成年。许多护理人员面临严重的财务危机、高昂的自付费用医疗保健费用和失业。以前的研究报告了影响自闭症儿童照顾者的大量心理社会问题，包括压力、抑郁、焦虑、活动限制、婚姻关系紧张和身体健康下降。

客观的：

本文旨在探讨自闭症儿童的看护者所关心的问题。聚合主题是根据 Corley 和 Gioia 的数据结构化方法准备的。

方法：

在制定和验证访谈时间表后，将七名自闭症儿童看护人的逐字记录导入 Atlas.ti 第 8 版。初始编码和最终编码之后是提取聚合主题。作为定性分析的一部分，林肯和古巴的框架被用来评估质量标准。

结果：

照顾者在照顾患有 ASD 的儿童时面临各种挑战，对身体健康、心理健康、社会反应和财务平衡产生负面影响。护理人员报告了与 ASD 服务可用性、诊断处理能力差和疾病过程相关的担忧。

结论：

照顾者在照顾患有 ASD 的孩子时会遇到很多问题。卫生专业人员必须了解这些问题，并且必须为更好的管理提供教育和信息。此外，这项研究的结果对卫生当局为被诊断患有 ASD 的儿童提供更好的卫生服务具有政策意义。