“In for the Long Haul”: Responses of Parents Caring for Children With Sturge-Weber Syndrome

Abstract

This descriptive study explores from a family perspective the positive and negative reactions of parents caring for children with Sturge-Weber Syndrome, a rare, progressive, congenital disease. The study, using three standardized instruments, considers perceptions of family functioning and the degree of the children’s independence. In addition, parental perceptions of their children’s disease, their stressors, and their unique caregiving roles were elicited through four open-ended items. A total of 125 primary care-givers and 89 secondary caregivers returned mailed questionnaires, of which 539 were mailed; their responses are reported and discussed within the perspective of the caregiver literature. Quantitative and qualitative data were triangulated for a more extensive picture of parental caregiver reaction. The findings contribute to knowledge on the manner in which families manage the challenges of a chronically ill child’s care and implications for ways nurses can help families achieve optimal family health are discussed.