title: [Arduous navigation: the life story of a family raising a young child with Prader-Willi syndrome].
abstract: The purpose of this narrative research was to explore the life experience of a family with a son suffering from congenital Prader-Willi syndrome (PWS). Difficulties associated with raising a PWS child led the mother to leave the family with her afflicted son. The author analyzed the story of this family and applied metaphors to describe the course of the family's life in terms of a "navigational map of life". This map included the six components of: 1. Leaving port (sailing toward an unknown future); 2. Facing a tsunami (undergoing a trial from God); 3. Striking a reef (a fragile boat in a vast ocean); 4. Isolated on an island (the interdependent relationship between mother and child); 5. Transformation (adjustment and starting over); and 6. Hoisting the sails (staying to the course of making dreams come true). In this study, the researcher served as the nu rse case manager and interacted with family members to provide health care, consultation and support as needed. The mother of this young PWS child has empowered herself, overcome her suffering and prepared herself well to face the challenges of the future.
authors.affiliation: Family Maternity Center, Carle Foundation Hospital, Urbana, IL, USA.
authors.forename: I-Ju
authors.initials: IJ
authors.lastname: Chen
authors.forename: Chih-Huey
authors.initials: CH
authors.lastname: Chou
mesh_terms: D002675:Child, Preschool; D006801:Humans; D008297:Male; D011218:Prader-Willi Syndrome / Q000451:nursing / Q000523:psychology* / Q000628:therapy