Parental experiences with outpatient care for daytime urinary incontinence in children: a mixed methods study

Daytime urinary incontinence (DUI) is a prevalent condition in children that can have a negative impact on both their quality of life and their parents' psychosocial wellbeing. Parents play a central role in care and often initiate referrals. Despite this, parental experiences are underexplored.

The aim of this study was to explore how parents perceive and manage their child's DUI and the associated healthcare process.

A mixed-methods study was set up. In the qualitative phase, semi-structured interviews were conducted with parents of children aged 4-12 years who had completed treatment for DUI at our outpatient clinic. Based on these interviews, a questionnaire was developed and distributed to all parents of children aged 4-18 years who were treated by a paediatrician or paediatric urologist between January 2016 and August 2019.

Saturation was reached after seven interviews, revealing three domains influencing care experience. The questionnaire was completed by 85 respondents (response rate 29.5%). 1. Diagnostics/therapy: Diagnostic procedures were generally well tolerated by children, and voiding diaries were not burdensome for parents. Most parents aimed for complete dryness, 64% felt treatment aligned with their goals and 43% reported achieving their goal. 2. Social context: Most parents (75.3%) were concerned about UI. Family life was affected in 36.5% of cases, and 42.4% felt unable to adequately support their child. 3. Interaction between professional and parent/child: Care was perceived as child-centred by 87.1%, and 78.8% felt stimulated to discuss their own concerns. According to parents, 64.8% of children felt comfortable discussing UI with the care professional. Most parents (85.7%) felt involved in treatment planning. However, when asked about their ability to choose a treatment, 49.4% responded 'neutral' and 22,9% disagreed. The mean overall satisfaction score from parents was 7.5 out of 10 (with 1 being the lowest and 10 the highest possible score).

While overall satisfaction was high, experiences varied, and less than half of parents achieved their goal at the end of the treatment. Some parents primarily sought guidance rather than complete dryness. A lack of dialogue about goals or treatment options may leave needs (like guidance) unmet and lead to unnecessary care (e.g. treatment for total dryness).

Parents' experiences overall are positive, but can vary widely, affected by their goals and expectations. These findings highlight the importance of discussing expectations to improve outcomes and reduce healthcare use.