Bowel management toward continence has been identified as one of the most challanging self-care behaviors to transition for children and their families. Developmental transition periods from birth through high school are especially demanding for children with spina bifida and their caregivers. Furthermore, obtaining bowel continence, which includes bowel management, has been difficult for health-care providers in their efforts to support primary caregivers and their child in promoting independence. The effort becomes increasingly challenging when the child with spina bifida reaches the developmental milestone for achieving bowel-management care and, yet, has not obtained it. A qualitative study using grounded theory was performed to investigate the process of transitioning neurogenic-bowel-continence management from the primary caregiver to the child. The transitional process was examined from the perspective of the primary caregiver. The study’s sample included 10 primary caregivers of preadolescents (8-13 years old) with spina bifida. The present investigation was the first step in a three-part study to explore how primary caregivers, children, and professionals can work together to promote neurogenic-bowel continence. Subsequent studies will focus on the perspective of the child with spina bifida and of health-care providers prompting bowel management. Primary caregivers in the present study were recruited from parent participation at Illinois Spina Bifida Association activities. Guided interviews were conducted with the primary caregivers in their homes or, when possible, an informal environment to investigate factors in the process of transitioning neurogenic-bowel management from the primary caregiver to the preadolescent’s self-care continence practices. Sample size was determined by saturation of information received in the interviews. All interviews were audiotaped. Content analysis was completed to identify themes and concepts. By studying the primary caregivers’ perspectives, the researcher identified factors that either promote or hinder the efforts of primary caregivers and their preadolescents in transitioning neurogenic-bowel management to the children. Identified themes and categories may be helpful in determining supportive interventions for children and their primary caregivers.
