Parenting young children with congenital heart disease

Lynn Kay Carey, Marquette University

Abstract

The purpose of the present study was to explore the effect of chronic illness on maternal parenting and childrearing practices. The method included a comparative study of parenting practices, developmental expectations, parenting stress, perceptions of child behavior, and maternal-child interactions between mothers of young children with congenital heart disease and mothers of healthy young children. The sample was 30 mothers of children with moderate to severe congenital heart disease age 2 to 5 years and 30 mothers of healthy children ages 2 to 5 years. The sample was matched for maternal marital status and age and gender of child. During a home visit, the mother was asked to complete a series of measures including the Parenting Behavior Checklist, Parenting Stress Index, Eyberg Child Behavior Inventory, and the Behavior Screening Questionnaire. These tools measure the parenting practices of discipline, nurturing and developmental expectations, parental stress, and maternal perceptions of their child's behavior. A videotaped interaction of a guided play session also was included and analyzed using the Dyadic Parent-Child Interaction Coding System to assess maternal-child interactions. An interview question " How is parenting (child's name ) different from what you expected ?" was included to capture qualitative parenting data. A series of data analyses indicated that there were no significant differences between the two groups on discipline, nurturing, developmental expectations, stress, perceptions of child behavior, or maternal-child interactions. This study suggests that having a child with moderate to severe congenital heart disease does not alter parenting outcomes. However, there were qualitative differences in the maternal responses to the interview question with mothers of children with congenital heart disease reporting increased vigilance, uncertainty, fear, and discussion of the unexpected (surgeries, hospitalization).

This paper has been withdrawn.