A patient- and parent-centered approach to urinary and fecal incontinence in children and adolescents with spina bifida: understanding experiences in the context of other competing care issues

Introduction Despite significant and known challenges to urinary and fecal incontinence (UI and FI, respectively) among children with spina bifida (SB) and their families, few studies have identified patient -centered measures and approaches to assessing them. This study represents the first stage of a larger study to develop a patient-centered goal -setting tool to guide incontinence management (Figure). Our aim was to understand patient expe-riences of UI and FI, and what goals should be included in the tool. Methods We used a qualitative research approach integrated with human-centered design methods. We recruited, in clinic and online, children with SB (8-17 years old) and parents (>Z18 years old) of children with SB (8-17 years old). Online activities were analyzed by four experienced design re-searchers using affinity diagramming, group analysis and modeling activities (mind maps, challenge maps, experience maps). Recruitment and thematic qualitative analysis continued until saturation was reached. Results Seventeen children with SB participated (9 female, 12 shunted, 13 using bladder catheterizations, 6 using Malone antegrade continence enema, median age: 15 years old). Fifteen parents participated (13 mothers/2 fathers, median age: 42 years old), including six mother-child dyads. Five major themes each were identified for UI and FI experiences: (1) negative emotional impact of incontinence, (2) unpredictability of incontinence, (3) challenging/ unpleasant incontinence management, (4) inconve-nient/unreliable incontinence management, (5) UI management having unpleasant complications and FI putting much responsibility on parents. We identi-fied six UI goal domains and five FI goal domains. Four overlapping domains included: accidents, in-dependence, interruptions at school and social/ friends. Unique domains were: urinary tract in-fections (UI), catheterizations (UI) and enemas (FI). Comment Findings of our study improve our understanding of children's and parents' experiences associated with incontinence in SB and potential continence goals. Conclusions Children with SB experience incontinence as dis-tressing and unpredictable. Incontinence manage-ment can be challenging and unreliable. Patient -centered continence goals cluster in domains, indi-cating how incontinence intermeshes with other life areas and offering potential approaches to structure continence goals in a goals-selection tool.