Family experience of living with children and adolescents with bladder and bowel dysfunction

Abstract

ABSTRACT Objective: to understand the experience of families of living with children and adolescents with bladder and bowel dysfunction. Methods: a qualitative phenomenological interpretive research carried out through an in-depth open interview with parents of children and adolescents linked to Advanced Practice Nursing clinic in pediatric urology. Results: the following representative categories of the families’ experiences emerged: Knowledge and learning: building family knowledge; Living with the children’s BBD: symbolic representations; Management and adaptation to the children’s BBD: reorganizing family life. Final considerations: the experience of families related to positive and negative meanings, presence or absence of previous experiences, information gaps, learning process and access to specialized professional follow-up. Follow-up by nurses is important in pediatric urology care for the learning and consolidation of specific knowledge about bladder and bowel dysfunction.