The Experience of Finding an Effective Bowel Management Program for Children With Spina

Sawin KJ, Thompson NM, The Experience of Finding an Effective Bowel Management Program for Children With Spina Bifida: The Parent's Perspective Journal of Pediatric Nursing, In Press

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.


Key words: Bowel management; Spina bifida; Children; Family struggle