A qualitative exploration of the experiences of children with spina bifida and their parents around incontinence and social participation

Abstract

Background: Urinary incontinence is frequently experienced by children with spina bifida, putting them at increased risk for low self-esteem and impacting upon participation in home, school and leisure activities. However, little is known about children's experiences of these continence issues.

Objective: This study explored the experiences of children and young people with spina bifida around continence issues, social participation and peer relationships, in order to identify potential areas of support healthcare professionals can provide.

Methods: Children and youth aged 6-18 years with diagnoses of spina bifida and neurogenic bladder and their parents were invited to participate in semi-structured interviews. Descriptive thematic analysis was employed.

Results: Eleven children (with a range of mobility levels, types of spina bifida and degrees of bladder control) and their parents participated in the study. Three broad themes were identified, which encompassed the following: (1) normal versus different; (2) independence, ownership and the road to continence; and (3) peer relationships and acceptance.

Discussion: The experiences discussed by the children and parents in this study ranged from minimal impact of incontinence on their day-to-day living to significant social isolation and rejection. The stigma of incontinence was apparent in all interviews. Children and youth who were able to control their bladder with minimal accidents had greater independence and more opportunities for social participation. Healthcare professionals need to take into account that parents and their children may differ in attitudes and desires about the management of incontinence.

Keywords: friendship; inclusion; incontinence; social participation; spina bifida.