Study Examines Influences, Effects of Pandemic on Girls

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by Marta Figueiredo PhD |

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Differences in pre-pandemic mother-daughter relationships, and social and adaptive behavior significantly predicted worries and impact of the COVID-19 pandemic in school-aged girls with fragile X syndrome (FXS), a U.S. study reports.

Notably, this association pattern was distinct from that of matched girls without the condition, whose responses were determined by their prior emotional health.

These findings emphasize the different responses of girls with fragile X to the pandemic relative to their peers and pinpoint the areas where families of affected girls can work on to minimize the pandemic impact, the researchers noted.

The study, “COVID-19 Pandemic: Mental Health in Girls With and Without Fragile X Syndrome,” was published in the Journal of Pediatric Psychology.

The COVID-19 pandemic resulted in widespread restrictions on social interactions and lockdowns, taking a toll on people’s psychological well-being around the world. Due to less-developed coping skills, children and adolescents “may suffer greater stress and trauma than adults after experiencing a disaster” such as a pandemic, the researchers wrote.

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“Emotional and behavioral effects are particularly pronounced during a pandemic-related disaster, when support networks that typically promote healthy coping, such as friends, teachers, and family members, may be less available,” the researchers added.

A previous Italian survey highlighted the COVID-19 pandemic’s negative impact on sleep habits and behavior of children with fragile X, the leading genetic cause of autism and intellectual disability. The syndrome also is associated with a significantly increased risk of anxiety and depression.

While girls with fragile X typically show milder symptoms than boys, many still have “significant developmental, behavioral, and social-emotional challenges,” the researchers wrote.

Notably, mothers of affected children — who often carry a mutated form of the disease-causing gene, but exhibit no obvious signs of the condition — also are more likely to experience anxiety and depression, and evidence from previous pandemics suggests the presence of a strong link between parent and child mental health.

As such, school-aged girls with the condition may be affected differently by the COVID-19 pandemic.

Study design

To address this, a team of researchers in the U.S. asked parents of girls with and without fragile X who were participating in a large longitudinal study to complete a pandemic-specific online survey.

The questionnaire focused on pandemic-related worries — fears, physical and emotional consequences, frequency of pandemic questions and talks — and the impact of pandemic-related restrictions. Those included emotional well-being, difficulties in adhering to restrictions, changes in contact/relationships with others, and/or family financial status.

Parents of 47 school-aged girls with fragile X (mean age 11.9 years) and 33 age- and developmentally-matched girls without the disease (mean age 12.2; used as controls) completed the survey from May 1o July 2020.

All girls had undergone neurodevelopmental assessment before the pandemic, and families were asked to respond to the pandemic-specific questionnaire based on the child’s functioning in April 2020.

The researchers assessed potential associations between responses to the pandemic and pre-pandemic academic, adaptive, behavioral, and emotional functioning, as well as prior maternal mental health and mother-daughter relationship.

Results showed there were no significant differences between girls with and without fragile X in terms of pandemic-related worries and emotional impact, when adjusted for spoken language skills. However, distinct patterns of COVID-19-related associations emerged for the two groups.

For pandemic-related worries, prior academic achievement and emotional health were predictive of outcomes in the control group, while characteristics of the mother–daughter relationship and adaptive skills were the strongest predictors in the fragile X group.

In contrast to the control group, greater maternal communication and involvement among girls with fragile X were associated with worse pandemic-related worries.

This suggests that “a high level of maternal interaction may be a potential risk factor, rather than a protective factor, … such that highly involved, communicative mothers may inadvertently transfer their worries to their daughters,” the researchers wrote.

“Instead of increasing communication and providing children with more information about the pandemic, our results suggest that parents of girls with fragile X should focus on modeling effective coping skills and maintaining a consistent routine to minimize pandemic worries,” they added.

Regarding the main predictors of perceived impact of pandemic-related restrictions, higher anxiety levels prior to the pandemic were linked to a stronger impact in the control group, while prior weaker social skills were associated with a milder impact among girls with fragile X.

This indicates that girls with fragile X and social deficits had less negative impact from the stay-at-home orders, likely because they experienced  pandemic-related relief from in-person social interactions that normally caused them discomfort and anxiety, the team noted.

For affected girls with relatively stronger social skills, the researchers recommended that parents offset the potential impacts of stay-at-home orders by helping them maintain positive peer connections through text messages or phone calls, and creating opportunities of virtual social interactions.

These findings highlighted that pandemic-related worries and emotional impact of stay-at-home orders were predicted by pre-pandemic mental health factors among girls without fragile X, but among girls with the disease it was prior social, behavioral, and relational factors.

The results “provide insight into factors that may confer risk or resilience for youth with special needs, suggesting potential therapeutic targets and informing public health initiatives in response to the pandemic,” the researchers wrote.

They noted, however, that these results reflect only a snapshot in time within the pandemic and that the small number of participants may limit their generalization to girls in other parts of the world.

More studies are needed to evaluate the long-term effects of the pandemic on girls with and without fragile X, the team noted.