Parental Stress in Families of Children with a Genetic Disorder/Disability and the Resiliency Model of Family Stress, Adjustment, and Adaptation

Abstract

Background: Research suggests that parents of children with disabilities endure increased amounts of stress but also experience positive outcomes. Purpose: To further investigate findings from focus group interviews that explored parental stress in families of children with disabilities using a sequential mixed methods design. Method: This study sought to model parental stress using the McCubbin and McCubbin (1993) Resiliency Model of Stress, Adjustment, and Adaptation using qualitative and quantitative data collected sequentially. Twenty-five parents of children with autism spectrum disorder, cerebral palsy, Down syndrome, and sickle cell disease participated in a 2-step study that encompassed qualitative followed by quantitative data ascertainment. Results: Parents who quantitatively experienced high stress or low stress used different behavioral themes to describe their experience qualitatively. Positive appraisals, resources, and ability to engage in problem solving and coping were associated with family resiliency.