The comparison of expressed emotion of parents of individuals with fragile X syndrome to other intellectual disabilities

Abstract

Background Parenting children and young adults with intellectual disabilities, including individuals with fragile X syndrome and Down syndrome, is challenging, joyful, and complicated. Exploring how parents talk about their children, and the quality of the parent/child relationship can provide insight into the home environment and interactional patterns of the family. Method Expressed emotion (EE) is a measurement of a family's emotional climate based on a parent or caregiver's report of warmth, emotional overinvolvement, hostility, and criticism. The purpose of this study was to describe EE for a sample of parents of individuals with intellectual disabilities and to determine any differences in EE amongst individuals within subgroups. Based on previous research about fragile X syndrome and family systems, we hypothesized that there would be significant differences between the disability groups (higher EE in families with children/young adults with fragile X syndrome). Results Results showed relatively high proportions of EE across groups of individuals with intellectual disabilities, however, there were no significant differences between the subgroups. Null findings suggest that differences in EE may not relate directly to a child's specific genetic condition. Rather, increased EE in caregiver populations may simply reflect well‐documented stressors related to stigma, caregiver burden, and limited community supports. Critical statements were infrequent, however, over half of the participants reported dissatisfaction with their situation, and many were categorized as having emotional overinvolvement, as measured by frequent statements of intense worry and self‐sacrifice. Conclusion Findings point to potential utility in family‐level interventions focused on providing structured caregiver therapy to manage excessive worry and grief related to a diagnosis of intellectual disability, and respite care to encourage caregiver independence and pursuit of personal care.

Research Gaps in Fragile X Syndrome: An Updated Literature Review to Inform Clinical and Public Health Practice

“…In a study exploring expressed emotion, mothers with FXS were described as having high levels of worry and emotional overinvolvement. 110 This increased anxiety may have a negative impact on the outcomes of the child; lower closeness in the mother-child relationship and higher maternal distress were found to be associated with higher levels of withdrawal. In female patients with FXS, the closeness of the mother-child relationship predicted greater fluid and crystallized intelligence.…”

Effect of counselling intervention on stress and expressed emotions among family caregivers of children with autism

“…Expressed emotions (EE) reflect the quality of the family atmosphere and are reflected in the attitudes and communication styles of relatives towards an individual. EE can serve as an indicator of the emotional climate experienced by family members, encompassing criticism, hostility, emotional over-involvement, positive remarks, and warmth [ 6 ]. The levels of EE in families with children with ASD have been linked to the behavioral problems of children, with negative dimensions of EE being associated with increased maladaptive behavior and decreased social interaction and communication.…”