The perspectives of adolescents with urinary incontinence on their health service needs.

AIM: Urinary incontinence in adolescents is an under-recognized, chronic condition despite the availability of effective interventions. Adolescents with urinary incontinence experience greater social, emotional, and psychological difficulties and more school-related distress compared to their peers with normal bladder control. This study aims to describe the health care needs of adolescents with urinary incontinence, through their lived experiences with continence services. METHODS: This study employed a phenomenological approach within an interpretivist paradigm to explore the lived experiences of adolescents with urinary incontinence and their interactions with continence services. A qualitative study design using semi-structured interviews was conducted with high-school students attending an adolescent bladder clinic (ABC) or an all-age continence clinic (AACC) at a tertiary children's hospital in Australia. Predefined interview prompts were used to explore their perspectives on "What matters?" and "What makes it work?" with their urinary incontinence treatment. Parents' responses as part of the interview were also included. Interviews were transcribed verbatim and analyzed thematically with co-investigators. The final sample size was based on thematic data saturation that was established when no new theme was generated in two subsequent interviews. RESULTS: Of the 25 young people approached, 13 agreed to participate. Interviews continued until data saturation was reached, which occurred after 13 interviews. Seven of the thirteen participants were recruited from the AACC, three from the ABC, and three of the thirteen participants had attended both clinics. Participants were interviewed face to face (n = 8), via Zoom (n = 4), or telephone (n = 1). Five main themes were identified: Stigma of urinary incontinence (UI); Disruption of adolescent goals (with sub-themes of challenges engaging in societal norms, threatened autonomy, disconnection, interruption to learning, leisure and life); Treatment despair (chronicity, rigidity, uncertainty, demotivated by setbacks); Personal coping strategies; Improving continence services (recognition of needs, communication with clinicians, merge treatment with life goals, access to services). CONCLUSIONS: This study highlighted the significant disruption that incontinence and the management of incontinence have on the lives of young people. They want to be like their peers, be treated age appropriately and have treatments that are flexible to their lifestyles in a clinical setting specific for adolescents. Our study may provide a framework for designing future adolescent continence services.