title: The experience of finding an effective bowel management program for children with spina bifida: the parent's perspective.
abstract: Many families who have a child with spina bifida identify establishing an effective bowel program as one of the major challenges they face; yet, we know little about a family's experience with this process. The purpose of this qualitative study was to describe the parent's experience. Seven parents were interviewed by telephone. Content analysis yielded four themes: (a) long complicated journey, (b) the impact of the journey on the child, (c) the family struggle, and (d) the promise of the future. The major contribution of this study is a compelling description of one of the most difficult areas for these children and their families. A better understanding of this issue enhances the health care providers' ability to deliver optimal health care.
authors.affiliation: Children's Hospital of Wisconsin, Milwaukee, WI, USA. sawin@uwm.edu
authors.forename: Kathleen J
authors.initials: KJ
authors.lastname: Sawin
authors.forename: Nancy M
authors.initials: NM
authors.lastname: Thompson
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D005242:Fecal Incontinence / Q000451:nursing*; D005260:Female; D006801:Humans; D007223:Infant; D007407:Interviews as Topic; D008297:Male; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D016135:Spinal Dysraphism / Q000503:physiopathology* / Q000523:psychology*; D055815:Young Adult