The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X Syndrome.
The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X Syndrome.
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由新型冠状病毒（COVID-19）传播引起的疫情于二零二零年初开始，其影响超出近代历史所经历的任何事件。患有脆性X综合征（FXS）的人是ASD和智力残疾的主要已知遗传原因，他们特别容易受到流行病相关变化的影响。本研究调查了33名FXS学龄儿童的父母对日常生活技能，教育，治疗，行为，健康访问和口罩佩戴的影响。大多数儿童（58%）的学习成绩被认为有所下降。在线学校的学生有最多的下降报告，而那些人有最多的改善报告。家长们对亲自提供的服务的满意度明显高于在线或混合设置提供的服务。此外，抑郁症（75%），睡眠问题（80%），注意力问题（73%）和社交技能（61%）据报道恶化最严重。家长们报告说，除了继续有组织的时间表外，最有帮助的策略是增加面对面的社交互动和户外活动。未来的研究应该探索策略，以帮助在线干预和教育与FXS的个人更成功，因为这可能成为家庭的资源，在地理上无法获得面对面的资源。
The pandemic caused by the spread of the coronavirus disease (COVID-19), beginning in early 2020, had an impact beyond anything experienced in recent history. People with Fragile X Syndrome (FXS), the leading known heritable cause of ASD and intellectual disability, were uniquely vulnerable to pandemic-related changes. This study surveyed parent perspectives of the impact on 33 school-aged children with FXS across daily living skills, education, therapies, behaviors, health visits, and mask wearing. Academic performance was perceived to have decreased in most of the children (58%). Students in online school had the most reports of decline and those in person had the most reported improvement. Parents were significantly more satisfied with services that remained in person compared to those delivered online or in hybrid settings. Additionally, depression (75%), sleep problems (80%), attention problems (73%), and social skills (61%) were reported to have worsened the most. Parents reported that in addition to continuing with a structured schedule, the most helpful strategies were increasing face-to-face social interactions and outdoor activities. Future research should explore strategies to help online interventions and education to be more successful with individuals with FXS, given this may become a resource for families not geographically able to access in-person resources.
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DOI：
10.3390/ijerph18115752
发表时间：
2021-05-27
影响因子：
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作者：
Di Giorgio E;Polli R;Lunghi M;Murgia A
通讯作者：
Murgia A
DOI：
10.3390/life11111188
发表时间：
2021-11-05
期刊：
Life (Basel, Switzerland)
影响因子：
--
作者：
Śniadach J;Szymkowiak S;Osip P;Waszkiewicz N
通讯作者：
Waszkiewicz N
影响因子：
3.6
作者：
Neece, C.;McIntyre, L. L.;Fenning, R.
通讯作者：
Fenning, R.
影响因子：
3.3
作者：
Colizzi, Marco;Sironi, Elena;Zoccante, Leonardo
通讯作者：
Zoccante, Leonardo
影响因子：
--
作者：
Guimond, Fanny-Alexandra;Smith, Jonathan;Maclachlan, Madison
通讯作者：
Maclachlan, Madison