The experience of finding an effective bowel management program for children with spina bifida: the parent's perspective.

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.