Stressors of Parents of Children with Epilepsy and Intellectual Disability

Abstract

Past research suggested that parents of children who have both epilepsy and intellectual disability are at risk for increased stress, but the specific causes of stress have not been studied. Descriptions of the specific stressors are needed before effective interventions can be designed. The purpose of this study was to identify and explore these sources of stress. We invited parents of children with a diagnosis of both epilepsy and mild intellectual disability (i.e., estimated IQ of 55-75) to participate in one open-ended interview that was tape recorded and transcribed verbatim. Data analyses revealed five categories of sources of stress: concern about the child, communication with healthcare providers, changes in family relationships, interactions with the school, and support within the community. This study is a first step in developing a more thorough understanding of sources of stress for parents of children with epilepsy and intellectual disability. The identification of stressors provided a foundation for an assessment checklist and suggested avenues for future intervention.

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