Abstract
Although previous research supports the notion that characteristics of both the child and the mother impact maternal well-being and parenting stress in mothers of children with FXS, more work is needed in which self-report measures are supplemented by physiological measures of stress and well-being. The inclusion of physiological measures, such as heart rate variability (HRV), may provide a window into the biological origins and consequences of maternal perceptions of their experiences, including the challenges of raising a child with developmental challenges. The proposed project, therefore, involved the collection of multimodal assessment data from mothers and their school-aged children with FXS. Further, given the importance of understanding how mothers of youth with FXS are faring in their everyday environment, the present study collected all data using telehealth procedures and wearable technology. Participants were 20 biological mothers and their children with FXS between the ages of 6 and 11 years. We measured maternal mental health and parenting stress through self-report as well as through HRV as a more objective measure of psychological well-being. We also examined the associations between these variables and child characteristics such as externalizing and internalizing behaviors as well as autism symptomatology. We found significant support for an elevated rate of depressive symptoms in the sample of mothers (35%) and some potential indicators for heightened rates of anxiety (15%) when compared to normed samples and rates in the general population. We also found that the mothers presented with an atypical HRV profile akin to those experiencing depression or chronic stress, although limitations of the present measure suggest the need for additional confirmatory research. Further, we found that child externalizing behaviors were the primary correlates of maternal well-being. These findings contribute to the growing body of literature regarding the unique challenges faced by these mother-child dyads and supports the importance of increasing the availability of services available to these mothers, not only for meeting the needs of their children's development and behavior, but in supporting their own well-being as well.
Highlights
Considerable research has shown the importance of parenting in supporting typically developing (TD) children’s development across multiple domains, including academic achievement and social emotional development [1, 2]
We further explored how this sample of mothers compared to the normative samples used to develop the measures using t-tests and a comparison value of 50 as the hypothesized mean based on a normal distribution
For self-report measures of maternal mental health and parenting stress, we found that child externalizing behaviors, as measured by the Child Behavior Checklist for Ages 6–18 (CBCL), were positively correlated with all the maternal variables of interest, and this finding remained significant after FDR correction
Summary
Considerable research has shown the importance of parenting in supporting typically developing (TD) children’s development across multiple domains, including academic achievement and social emotional development [1, 2]. Parents of children with neurodevelopmental disabilities face challenges to parenting, such as increased effort to help their child achieve daily tasks as well as pessimism regarding their child’s future compared to parents of TD children [8, 9] These parents are often engaged in high levels of advocacy on behalf of their children from birth [or receipt of diagnosis; [10]] and persists through adulthood as they advocate for job placements and more [11]. Biological mothers of children with FXS are at risk for poorer mental health and stress, which could affect their parenting, by virtue of both their own genetic vulnerabilities and their children’s characteristics These mother-child dyads could benefit from increased support and services to help achieve optimal outcomes for the entire family system. The study reported here focused on understanding the sources of stress and poor psychological well-being in biological mothers of children with FXS to inform the development and delivery of support and services
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