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Correspondence to: Konrad M. Szymanski, Division of Pediatric Urology, Riley Hospital for Children at IU Health, 705 Riley Hospital Dr., Suite 4230, Indianapolis, IN 46202, USA, Tel.: +1 317 944 7446; fax: +1 317 944 7481
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
experiences of UI and FI, and what goals should be included in the tool.
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
(>=18 years old) of children with SB (8–17 years old). Online activities were analyzed
by four experienced design researchers using affinity diagramming, group analysis
and modeling activities (mind maps, challenge maps, experience maps). Recruitment
and thematic qualitative analysis continued until saturation was reached.
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) inconvenient/unreliable incontinence management, (5)
UI management having unpleasant complications and FI putting much responsibility on
parents. We identified six UI goal domains and five FI goal domains. Four overlapping
domains included: accidents, independence, interruptions at school and social/friends.
Unique domains were: urinary tract infections (UI), catheterizations (UI) and enemas
Findings of our study improve our understanding of children’s and parents’ experiences
associated with incontinence in SB and potential continence goals.
The utilization of a qualitative research approach integrated with human centered design methods in understanding the sequel of incontinence secondary to spina bifida (SB) represents a novel approach to treatment. The use of mind, challenge and experience mapping is intriguing and “shines light’ on connections which may otherwise have gone unnoticed.