After the intensive care nursery experience: families' perceptions of their well being

This article describes family well being after a child's intensive care nursery experience. Thirty families of children who were graduates of intensive care nurseries participated in the study. Fifteen families of children with identifiable disabilities and 15 families of children with no identifiable disabilities were interviewed and completed standardized questionnaires. A comparison of family well being was done across three dimensions: the child's characteristics and caregiving needs, the family's support resources and needs, and the family's values and beliefs regarding their child's hospitalization and resulting special needs. Both groups of families had realized a renewed sense of meaning concerning family, children, and life itself due to their child's medical crises or disability. Families of children with disabilities, however, noted their financial concerns, burdens with their child's caregiving, and their difficulty in locating services for their child. These families' experiences underscore the need for a coordinated transition from the hospital to the community for the family and child.