Maternal Mental Health and Parenting Stress and Their Relationships to Characteristics of the Child With Fragile X Syndrome

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