在低资源环境中养育自闭症谱系障碍(ASD)儿童时,了解并应对家长压力和耻辱感的影响

Mugisha Samuel, Edward Bantu, Faith Nakalema
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摘要

在全球范围内,抚养自闭症谱系障碍(ASD)儿童的父母所承受的负担日益加重,尤其是在资源和支持有限的中低收入国家。本研究旨在调查乌干达坎帕拉 Kawempe 区自闭症儿童家长的压力、耻辱感和应对策略水平。研究人员从卡塔莱姆瓦-切希尔之家抽取了 28 名家长作为样本,使用自填式问卷收集数据,并使用描述性统计进行分析。结果显示,家长的压力和耻辱感水平非常高,压力总平均值为 3.71(标准差 = 0.79),耻辱感总平均值为 3.57(标准差 = 0.55)。这些压力因素涉及多个领域,包括经济困难、婚姻矛盾以及社会歧视造成的心理压力。据报告,家长们感到羞耻、尴尬和绝望,而社会的误解和支持系统的缺乏又加剧了这种情绪。值得注意的是,父母中焦虑症状的流行率(45.9%)超过了之前的估计,这表明这一人群的心理健康负担很重。此外,研究还发现,家长采用的应对机制并不完善,应对策略的总平均值为 1.78(标准差 = 0.77)。积极的应对策略有限,如为子女寻找新的工作机会,而消极的应对机制则更为普遍,包括滥用药物和粗鲁无礼。这些研究结果突出表明,迫切需要采取有针对性的干预措施,让家长掌握有效的应对策略和压力管理技巧。这项研究强调了在资源匮乏的环境中抚养患有 ASD 儿童的父母所面临的挑战,揭示了他们所承受的心理、社会和经济负担。应对这些挑战需要全面的支持系统,包括培训计划、研讨会和获取资源的途径,目的是增强家长的能力,提高他们的幸福感。通过了解和解决这一群体的特殊压力和应对机制,可以制定干预措施,减轻家长的负担,最终改善他们的生活质量,促进 ASD 儿童的全面发展。关键词压力 耻辱 应对策略 自闭症谱系障碍 养育子女
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Understanding and Addressing the Impact of Parental Stress and Stigma in Raising Children with Autism Spectrum Disorder (ASD) in Low-Resource Settings
The burden on parents raising children with Autism Spectrum Disorder (ASD) is escalating globally, particularly in middle and low-income countries, where access to resources and support is limited. This study aimed to investigate the levels of stress, stigma, and coping strategies among parents of children with ASD in Kawempe Division, Kampala, Uganda. Through a sample of 28 parents drawn from Katalemwa Cheshire Home, data was collected using self-administered questionnaires and analyzed using descriptive statistics. The results revealed very high levels of stress and stigma among parents, as evidenced by a grand mean of 3.71 (SD = 0.79) for stress and 3.57 (SD = 0.55) for stigma. These stressors encompassed various domains, including financial difficulties, marital conflicts, and psychological strain resulting from societal discrimination. Parents reported experiencing feelings of shame, embarrassment, and hopelessness, exacerbated by societal misconceptions and the lack of support systems. Notably, the prevalence of anxiety symptoms among parents (45.9%) surpassed previous estimates, indicating a significant mental health burden within this population. Furthermore, the coping mechanisms employed by parents were found to be inadequate, with a grand mean of 1.78 (SD = 0.77) for coping strategies. Positive coping strategies, such as seeking new job opportunities for their children, were limited, while negative coping mechanisms, including substance abuse and rudeness, were more prevalent. These findings underscore the urgent need for tailored interventions to equip parents with effective coping strategies and stress management techniques. The study highlights the challenges faced by parents raising children with ASD in low resource settings, shedding light on the psychological, social, and economic burdens they endure. Addressing these challenges requires comprehensive support systems, including training programs, workshops, and access to resources aimed at empowering parents and enhancing their well-being. By understanding and addressing the specific stressors and coping mechanisms within this population, interventions can be developed to alleviate the burdens faced by parents, ultimately improving their quality of life and promoting the holistic development of children with ASD. Keywords: Stress, Stigma, Coping Strategies, Autism Spectrum Disorder, Raising children
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