Survey: COVID-19 Lockdowns Affected Sleep, Well-being of Fragile X Children

The survey focused on the children’s sleep quality, emotions, and behaviors, and how their caregivers dealt with any related problems. It targeted a specific time window, from April 16 to May 4, 2020. The period immediately before the lockdown was used as a comparison for retrospective analysis.

A total of 48 mothers, with a mean age of 44.8 and a range of 30-51, answered the survey. Five of the mothers had more than one child with fragile X syndrome, so the total number of children involved in the study was 53. Their ages ranged from 2 to 16, and almost all (45) were boys.

When asked about sleep, the mothers said their children’s sleeping habits had changed during the lockdown. Specifically, the children had a harder time falling asleep, took longer to fall asleep, and woke up more often during the night during the lockdown than before it.

Many of the activities that children used to do during the day also were affected. The proportion of children going to speech, psychomotor, and occupational therapies was lower than it was before the lockdown. Additionally, fewer children were able to participate in sports, and in educational and group activities, such as scouting.

Furthermore, and importantly, the researchers said, the mothers reported a significant reduction in getting help from grandparents, friends, and support groups such as fragile X associations, due to measures put in place to contain the pandemic. Interactions with and support from educators, teachers, and doctors and other care providers also were greatly reduced amid the lockdowns, the mothers reported.

Using the Italian version of a tool called Child Adjustment and Parent Efficacy Scale-Developmental Disability (CAPES-DD) — which assesses a parent’s self-efficacy in managing specific child problem behaviors — the mothers reported more behavioral problems during the lockdown than during the period immediately before it. Notably, the mothers did not report additional emotional or prosocial behaviors during lockdown, the researchers said.

Despite the greater behavioral problems, however, the mothers considered themselves as capable of managing them as before.

According to the team, this observation might have important positive consequences for the children because of its effects on the parents.

“Parents with high self-efficacy experience less anxiety and stress, are more optimistic, effective in problem-solving and collaborative with services,” the researchers wrote.

Overall, “the results suggested that the lockdown is particularly challenging for mothers and their children with special needs, given the reliance on carefully established daily-routines, relationships, healthcare services and external support,” the researchers wrote.

Thus “effective measures need to be in place to mitigate the lockdown effects,” they added.

The team recommended managing sleep problems as best as possible during lockdowns to reduce stress, and trying to maintain a structured routine of daily life activities.

In addition, programs to improve psychological well-being should be implemented, the researchers suggested, noting also that “parents would benefit from professionally supported interventions targeting parenting competence, in order to maintain and/or improve their self-efficacy as caregivers.”

Such interventions, the researchers concluded, “would positively affect the adaptive capacities of children and reduce child-related parenting stress.”