Caregivers’ voices: From the world of autism spectrum disorder

Patience M.M. Dira, R. Machailo, Suegnet Scholtz
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Abstract

Background: Caring for a child with autism spectrum disorder (ASD) is a challenging and stressful task, especially in countries with limited resources. Additional research is necessary, considering the increasing prevalence of children with ASD, to gain increased knowledge of the complex difficulties faced by caregivers of ASD children and to offer insights into the coping strategies and support networks that parents utilise.Objectives: The objective of this study was to explore and describe the experiences and coping mechanisms of caregivers of children with ASD in Dr Kenneth Kaunda district, North West province, South Africa.Method: Qualitative explorative, contextual and descriptive design with purposive sampling technique and semi-structured interviews were conducted. Data were analysed following the six steps of reflexive thematic analysis.Results: Two themes were identified: Caregivers’ experiences in raising a child with autism, and caregivers’ coping in raising a child with autism.Conclusion: The research established caregivers’ experiences and coping mechanisms in raising a child with ASD and the effects on different aspects of their lives including emotional, social and financial aspects, which contribute negatively to their holistic well-being. These impediments warrant the establishment of emotional support groups, empowerment of caregivers and awareness-raising through campaigns to educate the family and the community on the diverse challenges.Contribution: The findings of this study contribute to a deeper understanding of the multifaceted challenges faced by caregivers of children with ASD and provide insights into the support systems and coping mechanisms employed by these caregivers within the socio-ecological context.
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照顾者的心声来自自闭症谱系障碍的世界
背景:照顾自闭症谱系障碍(ASD)儿童是一项充满挑战和压力的任务,尤其是在资源有限的国家。考虑到自闭症谱系障碍儿童的发病率越来越高,有必要开展更多的研究,以进一步了解自闭症谱系障碍儿童照护者所面临的复杂困难,并深入了解家长所采用的应对策略和支持网络:本研究旨在探索和描述南非西北省肯尼思-卡翁达博士区 ASD 儿童照顾者的经历和应对机制:方法:采用定性探索、情境和描述性设计,采用目的性抽样技术,并进行了半结构化访谈。按照反思性主题分析的六个步骤对数据进行了分析:结果:确定了两个主题:结果:确定了两个主题:照顾者抚养自闭症儿童的经验,以及照顾者在抚养自闭症儿童过程中的应对措施:研究确定了照顾者在抚养自闭症儿童过程中的经验和应对机制,以及这些经验和机制对他们生活各个方面的影响,包括情感、社会和经济方面,这对他们的整体福祉产生了负面影响。针对这些障碍,有必要建立情感支持小组,增强照顾者的能力,并通过宣传活动提高家庭和社区对各种挑战的认识:本研究的结果有助于深入了解自闭症儿童照顾者所面临的多方面挑战,并有助于深入了解这些照顾者在社会生态环境中所采用的支持系统和应对机制。
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