Tathgur Manmeet Kaur, Kang Harmeet Kaur
Chitkara School of Health Sciences, Chitkara University, Punjab, India.
Indian J Psychol Med. 2021 Sep;43(5):416-421. doi: 10.1177/02537176211000769. Epub 2021 Apr 12.
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.
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.
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.
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.
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.
自闭症谱系障碍（ASD）是一种复杂的神经疾病，会导致社交互动受损以及理解言语和非言语交流困难。照顾患有自闭症谱系障碍的儿童对孩子及其照顾者来说都具有挑战性。患有自闭症谱系障碍的儿童在2.5至3岁早期开始显现出发育结果，并在此后持续存在，直至儿童成年。许多照顾者面临严重的财务危机、高额的自付医疗费用和失业问题。先前的研究报告了大量影响自闭症谱系障碍儿童照顾者的心理社会问题，包括压力、抑郁、焦虑、活动受限、婚姻关系紧张以及身体健康下降。
本文旨在探讨自闭症谱系障碍儿童照顾者所关心的问题。基于科利和乔亚的数据构建方法准备了汇总主题。
在制定并验证访谈提纲后，将七名自闭症谱系障碍儿童照顾者的逐字记录导入到Atlas.ti 8版本中。在进行初始编码和最终编码后提取汇总主题。林肯和古巴的框架被用作定性分析的一部分来评估质量标准。
照顾者在照顾自闭症谱系障碍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。照顾者报告了与自闭症谱系障碍服务可及性、难以应对诊断和疾病过程相关的担忧。
照顾者在照顾自闭症谱系障碍儿童时会遇到很多问题。卫生专业人员必须了解这些问题，并必须提供教育和信息以实现更好的管理。此外，本研究的结果对卫生当局为被诊断患有自闭症谱系障碍的儿童提供更好的卫生服务具有政策意义。
