Many children with fragile X syndrome have had poorer academic performance, worsening mental health problems, and more difficulties with social interaction after the COVID-19 pandemic, according to a survey of parents.
Problems were generally less severe among children who continued to be schooled in person and parents tended to view in-person services such as occupational therapy or tutoring as more helpful than online services.
“Based on these results, the perceived benefit of keeping school-aged children with [fragile X] in their daily routines and remaining in person for school and related services is clear,” the researchers wrote. “While online learning has been found to have similar academic effects to in-person learning for neurotypical children, this did not seem to be the case for children with [fragile X] based on their parent’s reports.”
The study, “The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X Syndrome,” was published in Genes.
The COVID-19 pandemic caused an abrupt shift in routines for many school-aged children, with the cancellation of in-person activities and schools going online.
Impact of pandemic on Fragile X children
A team of U.S. scientists assessed how the pandemic affected children with fragile X with an online survey that was completed by 33 parents of children with fragile X who ranged in age from 3 to 20.
“While the mental health and wellbeing of all school-aged children is paramount, it is especially important to understand the impact of this novel pandemic on children with disabilities, such as [fragile X] … This study aimed to explore the effects of the COVID-19 pandemic on school-aged children with [fragile X] based on parent-reported changes in behaviors, adaptive skills, 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 average annual family income was between $100,000 and $150,000.
While the mental health and wellbeing of all school-aged children is paramount, it is especially important to understand the impact of this novel pandemic on children with disabilities, such as [fragile X].
Parents were asked to rate how their child’s academic performance changed due to the pandemic on a five-point scale that ranged from “significantly improved” to “significantly worsened.” Most (58%) reported their child’s performance had worsened. Just 18% reported improvement.
Most parents reported sleep problems (80%), depression (75%), and attention issues (73%) for their children since the pandemic. A few children were reported to have less severe anxiety or self-injuring behavior during the pandemic, but the issues either stayed the same or got worse after the pandemic for most with these problems.
Most children didn’t have any new difficulties with day-to-day activities such as bathing or feeding, according to the parents, however, the majority — 61% — reported their child’s social skills had gotten worse.
Online services don’t measure up
This was generally more common among children who switched to online schooling, compared to those who remained at school in person, and was also reflected in free-response portions of the survey.
“Parents noted that virtual therapies were difficult to navigate and they saw significant regressions in their child’s social skills, especially with the difference in social skills necessary for virtual platforms,” the researchers wrote. “Parents also reported that they need more support than what they are currently obtaining during the pandemic.”
The survey asked parents about services their child had accessed and the parents rated services they’d used based on how helpful they’d been. Parents said tutoring, speech and language therapy, sensory integration therapy, and occupational therapy were helpful. Physical therapy, vocational training, and counseling were viewed less favorably.
Services delivered in-person had a higher satisfaction rate (76%) compared to those online (40%) or a hybrid of the two (46%).
Most parents (70%) said their child hadn’t been seen by a fragile X specialist since the pandemic hit in early 2020. While some reported their child had problems with having to wear a mask, “[o]verall, positive reports of ability to wear a mask outweighed negative reports,” the researchers wrote.
The scientists noted this study was limited by the small number of respondents and relying on parents to recall how things changed with the pandemic likely subjected it to bias.
“While this study created a foundation for understanding the impact of the pandemic on school-aged children with [fragile X], there is a lot of future research that is possible on this topic. The data obtained in this study and other future studies can be used to inform clinicians, teachers, and specialists who work with children with [fragile X] and … improve their ability to target the main deficits and challenges that have faced this population.”
“Future research should also explore strategies to help online interventions and education to be more successful with individuals with” fragile X, they said.