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.
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References
Szymanski KM, Misseri R, Carroll AE, et al. 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. JPU in press.
- Quality of life and continence in patients with spina bifida.Quality of Life Research. 2006; 15: 1481-1492
MacNeily AE, Jafari S, Scott h, Dalgetty A, Afshar K. Health related quality of life in patients with spina bifida: a prospective assessment before and after lower urinary tract reconstruction. 2009; 182:1984-1992.
Article Info
Publication History
Accepted:
November 3,
2022
Received:
November 3,
2022
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2022 Published by Elsevier Ltd on behalf of Journal of Pediatric Urology Company.
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- 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 issuesJournal of Pediatric Urology
- PreviewDespite 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.
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