Psychological Issues in Mothers of Children with Hemophilia

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Abstract
Twenty-four mothers of boys, ages 3 to 18 years, with hemophilia were studied using a semistructured interview regarding their experiences with their sons' hemophilia. Rating scales were developed to assess the mothers' psychological response to the presence of hemophilia in their sons, and their perception of their child's social and emotional adjustment. Statistical analyses were performed to determine whether relationships existed between Maternal Psychological Response to Hemophilia and Child Adjustment and between ratings in both of these areas to the degree of physical impairment as judged by the staff of the Hemophilia Center. Results indicated a wide variety of responses by mothers to the presence of hemophilia in their sons, ranging from acceptance to severe psychological distress. The existence of available social support for the mothers was associated with their acceptance of the disease. Fear related to the physical consequences of the disease was a more prominent concern for these mothers than was guilt over genetic transmission. A strong relationship was found between the mothers' psychological response to presence of hemophilia and their sons' social and emotional adjustment; maternal acceptance and minimal denial predicted good child adjustment. No relationships were found between Maternal Psychological Response and the severity of hemophilia or between Child Adjustment and severity of hemophilia. Because of the self-report nature of the data and the lack of a control group, these findings must be considered tentative.

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