Parent-youth interactions: Transitioning to toileting self-management in spina bifida patients

Spina bifida (SB) involves neurogenic bladder and bowel deficits. While parents manage the bladder and bowel disorders of their youth in the early years, the youth themselves must eventually take responsibility for their own management. However, the experience of shifting responsibility for complex toilet management from the parents to the youth has not been thoroughly investigated. Therefore, as exploratory research, the present study aimed to reveal the interactions between parents and youths with SB during the time of increasing responsibility for bladder and bowel management (i.e., the transition phase).

Twelve parent-youth pairs (youths with SB aged 11-18 years) participated in dyadic interviews, and a parent-youth transition experience was categorized by the context of parent-youth interactions and analyzed using the grounded theory approach.

The results indicated that parents provide professional, complete bladder and bowel management until their youth reach physical and mental maturity. During the transitional phase, they work together to master youth self-management in interactions described as "share, try, and decide through parent-youth interactions". Finally, the youth are able to master control of their own bladder and bowel management without requiring assistance from their parents.

Although parent-youth interactions are not always present during the pre- and post-transition phases, the parent-youth relationship acts to facilitate the independence of the youth by taking advantage of the parent-youth subsystem during the transitional phase. Interventions during these challenging periods could help facilitate the transition to bladder and bowel self-management among the youth.