贝希拉省自闭症谱系障碍儿童照顾者的负担

Nadia Ramadan Ragab Ahmed, Mariam Haggag soleiman, Lucy Ahmed AbuElEla, Hend Abo Elsoud Ahmed
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引用次数: 0

摘要

背景:由于缺乏与自闭症谱系障碍相关的信息、缺乏医疗服务、缺乏社会支持以及经济问题,自闭症谱系障碍儿童的照顾者承受着巨大的压力和负担,这些都加重了照顾者的负担。本研究旨在评估贝希拉省自闭症谱系障碍儿童照顾者所承受的负担。研究设计:采用描述性研究设计。研究地点本研究在贝希拉省的所有公立智力学校和贝希拉省的私立自闭症应对和康复中心进行。研究对象:本研究的研究对象是2019-2020学年上述环境中所有自闭症儿童的照顾者(110名照顾者)。数据收集工具:使用三种工具收集数据:工具(I):自闭症儿童照顾者压力访谈表。工具(II):照顾者负担量表。工具 (III):照顾者调整模式(Adjustment pattern),以改变其子女的行为。结果90.8%的照顾者是自闭症儿童的母亲,约 75.2%的照顾者有较大的生理和心理压力。约 46.6% 的照顾者有较大的社会压力,约 80% 的照顾者有较大的婚姻压力,约 100% 的照顾者有较大的经济压力。此外,约(97.3%)的照顾者有较高程度的负担,平均百分比为 83.75%,约(76.4%)的照顾者有中等程度的适应能力。结论:研究得出的结论是,大多数研究对象的照顾者都有较高的负担水平,他们很容易受到健康危害,因为他们是自闭症儿童的唯一照顾者,忽视了他们的健康,因此大多数照顾者都有较高的生理和心理负担。此外,由于自闭症谱系障碍的治疗费用非常高昂,而且康复过程无止境,他们中的大多数人都面临着经济问题。建议在农村和城市地区开展健康教育活动,宣传自闭症的早期征兆和症状,以及早期识别自闭症征兆和症状的益处。及早发现和筛查自闭症谱系障碍的早期症状和体征。鼓励开展小型项目,为家庭主妇提供增加收入的机会,以帮助她们支付昂贵的治疗费用和应对自闭症的终身过程。
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Burden on Caregivers of Children with Autism Spectrum Disorder in El-Beheira Governorate
Background: Caregiver of Children with Autism Spectrum (ASD) are experienced high level of stressors and burden due to lack of information related to ASD, lack of health service, lack of social support and financial problems which increase the caregiver burden. The aim of this study was to assess the burden experienced by caregivers of child with autism spectrum disorder in El-Beheira Governorate. Research design: a descriptive research design was used. Settings: This study was carried out at all governmental intellectual schools in El-beheira governorate and private centers for autism coping and rehabilitation in El-Beheira governorate . Subjects: this study was carried out on all caregivers of children with ASD at the previous mentioned setting were included into the study (110 caregiver) at 2019-2020 academic years . Data collection tools: data were collected using three tools: Tool (I): Stressors of caregiver having Children with Autism Interview Schedule. Tool (II): Caregiver burden scale. Tool (III): caregivers Adjustment pattern Adapted to modify their child behaviour. Results: The majority of the caregivers 90.8% were the mothers of the autistic child, about 75.2% had high level of physical and psychological stressors. About 46.6% of them had high level of social stressors, about (80%) of them had high level of marital stressors and about 100% of caregivers had high level of financial stressors. Also, about (97.3%) of them had high level of burden with mean percent score 83.75%. about (76.4%) of the caregiver had moderate level of adjustment. Conclusion: the study concluded that majority of the studied caregivers had high level of burden, they were vulnerable to health hazards as the majority of them had high level of physical and psychological burden because they the only provider of care for the autistic child and ignoring their health. Moreover, the majority of them were suffering from financial problems, as the cost of treatment of autism spectrum disorder is very high and endless rehabilitation process. Recommendations: Conduct health education campaigns in rural & urban areas about early sign and symptoms of ASD and benefits that result from early identification of sign and symptoms of ASD. Early case finding & screening of early sign and symptoms of autism spectrum disorder cases. Encourage small projects and provide opportunity for housewives to increase their income to help them in expensive treatment and the lifelong process of coping with autism
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