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Face to Face With Sturge-Weber Syndrome |
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| Authors: | Mary B Walker Gail A Hilbert Joan Rinehart |
| Institution: | Mary B. Walker, EdD, RN, is Assistant Dean for Graduate Studies, Widener University School of Nursing, Chester, PA;Gail A. Hilbert, DNSc, RN, CS, is Co-Chair, Division of Advanced Nursing Education and Practice, School of Nursing, The College of New Jersey, Ewing, NJ;Joan Rinehart, PhD, RN, is retired. |
| Abstract: | issues and purpose . Chronic illness is a way of life for parents of children with Sturge-Weber syndrome (SWS), a rare progressive congenital disease that has as its defining feature a port wine stain. This case study describes the experience of one family living with a child with SWS. conclusions . This family's struggle with a devastating syndrome and the ways in which they coped and maintained hope inform all those who care for families living with a chronically ill, disabled child. practice implications . Social support is critical for families facing overwhelming care needs. Families also need anticipatory guidance about child rearing, developmental milestones, decision making, and coping strategies. Additionally, families may need help in mobilizing professional and family resources and in effectively using available services. |
| Keywords: | Caregiver reaction parenting disabled children research-based case study Sturge-Weber syndrome |