Children With Fragile X Struggles With Online School: Learning |… – Fragile X News Today | Team Cansler

Many children with fragile X syndrome are experiencing poorer academic performance, worsening mental health problems and more difficulties with social interaction in the wake of the COVID-19 pandemic, according to a survey of parents.

For children who continued to receive in-person tutoring, problems were generally less severe, and parents tended to view in-person offerings, such as occupational therapy or tutoring, as more helpful than online offerings.

“Based on these results, the perceived benefits of placing school-age children with [fragile X] in their daily routines and staying in person for school and related services is clear,” the researchers wrote. “While online learning was found to have similar academic effects to in-person learning in neurotypical children, this did not appear to be the case in children with neurotypical disorders [fragile X] based on reports from their parents.”

The study, “The impact of the COVID-19 pandemic on school-age children with Fragile X syndrome“, appeared in genes.

The COVID-19 pandemic caused an abrupt change in routines for many school-age children as in-person activities were canceled and schools went online.

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Impact of the pandemic on Fragile X children

A team of US scientists assessed how the pandemic was affecting children with fragile X using an online survey filled out by 33 parents of children with fragile X aged 3 to 20.

“While the mental health and well-being of all school-age children is of paramount importance, it is particularly important to understand the impact of this novel pandemic on children with disabilities, such as: [fragile X] … The aim of this study was to examine the effects of the COVID-19 pandemic on school-age children [fragile X] based on parent-reported behavior changes, adaptability, and daily activities,” the researchers wrote.

Among the affected children, most were male (82%) and white (91%). Most families lived in suburban areas (58%) and the median annual family income was between $100,000 and $150,000.

While the mental health and well-being of all school-age children is of paramount importance, it is particularly important to understand the impact of this novel pandemic on children with disabilities, such as disabilities [fragile X].

Parents were asked to rate how their child’s academic performance had changed as a result of the pandemic on a five-point scale ranging from “significantly improved” to “significantly worsened”. Most (58%) indicated that their child’s performance had deteriorated. Only 18% reported an improvement.

Most parents reported problems sleeping (80%), depression (75%) and attention problems (73%) for their children since the pandemic. It has been reported that some children exhibited less severe anxiety or self-harm behavior during the pandemic, but the problems either remained the same or worsened after the pandemic for most with these problems.

Most children did not experience new difficulties with everyday activities such as bathing or feeding, but the majority – 61% – reported that their child’s social skills had deteriorated.

Online services don’t measure themselves

This was generally more common among children who switched to online school than those who stayed at school in person, and was also reflected in the open-response portions of the survey.

“Parents found that virtual therapy was difficult to navigate, and they saw significant declines in their child’s social skills, particularly with the disparities in social skills required for virtual platforms,” ​​the researchers wrote. “Parents also reported needing more support during the pandemic than they are currently receiving.”

The survey asked parents about services their child had accessed, and the parents rated services they had used based on how helpful they were. Parents said tutoring, speech and language therapy, sensory integration therapy, and occupational therapy were helpful. Physiotherapy, vocational training and counseling were rated less positively.

Services delivered in person had a higher satisfaction rate (76%) than online services (40%) or a mix of both (46%).

Most parents (70%) said their child has not been seen by a Fragile X specialist since the outbreak of the pandemic in early 2020. While some reported their child struggled with having to wear a mask, “[o]Overall, positive reports of being able to wear a mask outweighed negative reports,” the researchers wrote.

The scientists noted that this study was limited by the small number of respondents and reliance on parents to remember how things had changed with the pandemic, which likely led them to be biased.

“While this study has provided a basis for understanding the impact of the pandemic on school-age children [fragile X], there is a lot of future research that is possible on this topic. The data generated in this study and other future studies can be used to inform clinicians, teachers and specialists working with children [fragile X] and … improve their ability to address the key gaps and challenges faced by this demographic.”

“Future research should also examine strategies to help online interventions and education be more successful in individuals with Fragile X,” they said.

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