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. 2025 Dec 8;42(1):35.
doi: 10.1007/s00383-025-06263-9.

School toilet facilities perception of children with hirschsprung disease: a parents perspective

A C Ter Schure  1   2   3 , S P van Streun  4   5   6 , C M C de Beaufort  4   5   6 , J van Leeuwen  4 , M van Dorp  7 , S van Velsen-Knobbout  7 , J Bols  7 , M A Benninga  8 , J P M Derikx  4   5   6 , R R Gorter  4   5   6
Affiliations

School toilet facilities perception of children with hirschsprung disease: a parents perspective

A C Ter Schure et al. Pediatr Surg Int. .

Abstract

Purpose: Access to appropriate and clean toilet facilities is essential for children with Hirschsprung Disease (HD). This study aims to assess how parents of children with HD perceive school toilet facilities.

Method: A cross-sectional survey was spread among parents of children aged 4-13 years with HD. The questionnaire addressed the frequency of toilet use and reasons for positive or negative experiences, with open- and closed-ended questions, for quantitatively and qualitatively analyses, respectively.

Results: Forty-four parents completed the questionnaire. The median age of the children was 7 years (IQR 5.3-10.8). Five (11.4%) children never used the school toilet, 16 (36.6%) used it for urination only, and 23 (52.3%) used it for urination and defecation. Positive parental experiences (29, 65.9%) were associated with the possibility for the child to clean themselves at school, while negative experiences (15, 38.6%) were linked to the absence of child-specific toilet rules. Qualitative analysis revealed six influencing themes; assistance, possibilities, school rules, medical nature, toilet facilities, and information.

Conclusion: Toilet avoidance for defecation remains common among children with HD. Improvements in toilet facilities, support, and individualized toilet policies may enhance well-being in this population.

Keywords: Defecation withholding; Hirschsprung disease; Pediatric continence; School aged children; Toilet avoidance.

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Conflict of interest statement

Declarations. Conflict of interest: The authors declare no competing interests. Ethical approval: The study, questionnaire and methodology, was approved by the Medical Ethics Committee of the Amsterdam UMC (ref. no. W22_400 #22.475 on 10 November 2022). Consent to participate: Informed consent was obtained from all individual participant included in the study.

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