Skip to main content
Sign In
 

Colorado Fragile X Consortium

Caregivers of Those with Fragile X Syndrome


 

Caring for a child or adult with a developmental disability can be stressful. Research indicates that parents of developmentally disabled children often experience depression, anxiety, and low self-esteem. Feelings of isolation from one's family and community are common.

Although little research has focused specifically on the experiences of parents of children with fragile X syndrome, one recent study found that mothers of children with fragile X syndrome had higher levels of parenting stress than did parents of children without developmental delays (Johnston et al., 2003). Although not all women experience such feelings, approximately 25% of mothers participating in the study reported diminished parenting confidence and significant feelings of isolation. Those women who described their family members as being very committed to and supportive of one another experienced a lower level of stress and isolation. For many families affected by fragile X syndrome, the stress of caregiving is compounded as a result of having more than one disabled child, a situation that is less common for families affected by other developmental disabilities (e.g., Down syndrome).

Resources are available to help families control the stress of caring for a child with fragile X syndrome. As a child's behavioral problems are an important contributor to parenting stress (Johnston et al., 2003), professional services geared toward helping parents to manage problematic behavior can be effective in reducing both behavior problems and parental stress. Typically, a combination of medication and behavior modification therapy are employed to address problems with hyperactivity, anxiety, depression, aggression, and interpersonal relationships in children with fragile X syndrome.

Involvement in a support group of families affected by fragile X syndrome can reduce parents' sense of isolation by providing them with a network of individuals who understand the special challenges of parenting a child, or children, with fragile X. Support groups can be an important source of information and advice for parents of newly diagnosed children. A list of fragile X support groups around the country is available on the website of the National Fragile X Foundation.

References
Johnston, C., Hessl, D., Blasey, C., Eliez, S., Erba, H., Dyer-Friedman, J., Glaser, B., & Reiss, A. L. (2003). Factors associated with parenting stress in mothers of children with fragile X syndrome. Developmental and Behavioral Pediatrics, 24, 267-275.