Stress, Health, and Mental Health in Mothers of Children with Prader-Willi Syndrome and Other Types of Disabilities

Elisabeth Dykens, Rebecca Kossler, Elizabeth Roof

Vanderbilt Kennedy Center, 230 Appleton Way, Nashville, TN 37205

Introduction: Raising children with intellectual or developmental disabilities is consistently associated with heightened parental stress, and previous studies find that levels of stress are relatively high in parents of children with PWS. While chronic, high stress is associated with a host of health and mental health concerns, these have yet to be examined in mothers of children with PWS. This study identified the stress levels, coping styles, and psychiatric and health status of mothers of children with PWS, along with cortisol, a biomarker of stress. We first compared these measures in mothers of children with PWS to mothers of children with Williams syndrome or autism spectrum disorder (ASD). We then identified correlates of cortisol levels within each group.

Method: Participants included 88 mothers of children with either PWS (n = 23), Williams syndrome (n = 26) or ASD (n = 39) aged 30 to 62 years (M = 38 years). Mean ages of offspring were similar across groups (9 to 11 years). Mothers completed a battery of measures tapping their health, mental health, stress, coping, and positive perceptions of their child and family. They also completed measures of child maladaptive behavior. Salivary samples were collected 6 times during a typical 8-hour day for each mother.

Results: The 3 groups were similar in their depressive symptoms, psychiatric histories, life satisfaction, and positive perceptions. Nonetheless, mothers of children with PWS had a significant, 2-fold increase in distress relative to remaining groups, and they also had significantly higher mean levels of cortisol (p’s < .01 to .05). Cortisol in the PWS group was associated with maternal anxiety, avoidant coping, and child compulsivity (r’s .49 to .73). In the ASD group, cortisol was associated with maternal depression and health problems, and in the Williams group, with maternal depression and child factors related to the regulation of moods and states.

Discussion: Implications are discussed for parent support, and the need for evidence-based practices to reduce maternal stress and promote well-being. Future research will include fathers, and the impact of long-term caregiving on health/mental health.

Acknowledgements. We are grateful to the families who participated in this project, some with the help of the PWSA. This work was supported by NICHD (R01HD135681 and P30HD15052 to the Vanderbilt Kennedy Center), and by the Vanderbilt General Clinical Research Center.