Manuscript – School Toilet Facilities Perception of Children with Hirschsprung Disease: A parents perspective

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C. ter Schure, S. P. Streun, C. M.C. Beaufort, J. Leeuwen, and 6 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7906386/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 08 Dec, 2025 Read the published version in Pediatric Surgery International → Version 1 posted 10 You are reading this latest preprint version 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. Hirschsprung Disease school aged children toilet avoidance pediatric continence defecation withholding Introduction Hirschsprung disease (HD) is a rare congenital colorectal disorder characterized by the absence of enteric ganglion cells ( 1 ). Prevalence varies between 1 to 2.6 in 10,000 live born children ( 2 , 3 ). Despite the surgical advancements, long-term gastrointestinal sequelae remain common ( 4 ), including constipation (14%), fecal incontinence (20%), and Hirschsprung associated enterocolitis (HEAC) (23%) ( 4 , 5 ). These sequelae potentially lead to psychological difficulties, and can therefore negatively affect school performance ( 6 – 8 ). Timely defecation is essential to prevent sequelae of stool accumulation and fecal incontinence, to which children with HD are particularly vulnerable ( 9 ). In the general pediatric population, it has been reported that children demonstrate a preference for using the toilet at home for defecation rather than school facilities, and they often choose to withhold defecation until returning home ( 10 ). This withholding behavior leads to abdominal pain, constipation and physician visits ( 11 ). Since children with HD are already vulnerable for these symptoms, the use of the school toilet is essential. Previously, it has been shown that similar problems emerge in children with functional constipation and anorectal malformations (ARM). Parents of school-aged children reported challenges arising from inadequately equipped, poorly maintained, or unhygienic toilet facilities, limited accessibility, and insufficient assistance from teachers. ( 12 , 13 ). This contributes to toilet avoidance at school by these children. Although previous studies addressing the problems of the school toilet facilities and withholding behavior at school have focused on children with functional constipation, ARM, and healthy children, we hypothesize that similar concerns are applicable to children with HD. Therefore, the aim of this study is to gain insight into the school’s toilet perception of parents with children with HD, and the challenges faced at school by their children. This study will also examine the extent to which parents encounter difficulties or ease when enrolling their child in a primary school. Furthermore, it will explore the factors that positively or negatively influence parental experiences with school toilets facilities, including the specific measures taken by schools to support children with HD and to address challenges related to toilet use during school hours. Methods Study design This study used a cross-sectional design surveys with closed- and open-ended questions regarding school toilet facilities. It was performed from October 2023 to January 2024. The questionnaire was administered in Dutch and translated into English for the purpose of this paper. The questionnaire was previously composed by researchers within our research group ( 12 ) and adapted to the HD patient population by a consensus meeting with medical experts and the Patient Organization for Hirschsprung Disease (Vereniging ziekte van Hirschsprung). Ethical approval was obtained by the Amsterdam UMC, Medical Ethical Commission and was not subject to medical scientific research with the humans act statement (ref. no. W22_400 #22.475 on 10 November 2022) Questionnaire The questionnaire was divided into two main domains. The first domain contained general information, including age of children, school description (i.e. region, location and size), number of schools visited before participation, difficulties experienced by parents when enrolling the child into a school. The second domain focused on information on parents’ perception with the school toilet facilities; positive or negative experiences, characteristics of toilet spaces and facilities, specialized toilet and extra help concerning toileting. Information on sex and surgical details were not included to ensure anonymity. An open toilet cubicle was defined as one in which the partition walls and doors did not reach the ceiling. (Questionnaire can be found in supplementary table 1 ) Participants Eligible participants (parents of school attending HD children) were recruited by the Amsterdam Pediatric Abdominal Center of Emma children’s hospital of Amsterdam UMC and the patient organization for HD independently. Participants were eligible if they were 4 to 13 years old at the time of the study, underwent surgery for HD, and were enrolled in a primary school in the Netherlands. Eligible participants were approached through a mailing list and social media. Privacy legislation prevented the exchange of patient listings between the Amsterdam UMC and patient organization. Two months after the first invitation, reminders were send by email, by Amsterdam UMC and the patient representative organization. As a result, parents may have been contacted more than once; in such cases, they were instructed to complete the questionnaire only once. Only questionnaires with a completion rate exceeding 90% were included in the analysis to improve reliability and validity of the acquired data. Statistical analyses Statistical analyses were conducted using IBM SPSS Statistics for Windows, version 28 (IBM Corp., Armonk, NY, USA). For the first domain, only descriptive statistics were used for the analysis. Results are reported as absolute numbers (n) and corresponding percentages (%) for the binary or categorical data. Continues variables are presented as mean or median, with corresponding standard deviations or interquartile ranges, depending on visual data distribution, by using a Q-Q plot and histrogram. We tested for potential differences based on school location (city vs. village), with Chi-square and p-values, as we hypothesized that location might influence the results. If significant differences were identified, analyses would be conducted separately for each group; otherwise, data from city and village schools would be analyzed together. Age of the children was compared by using a Mann-Whitney U test, due to the anticipated skewed distribution. To identify factors potentially associated with negative, respectively positive parental experiences, a univariable logistic regression analysis was conducted. Variables with a p-value < 0.200 were included in the multivariable analysis, corrected for school size ( 500 students) and school location (city or village schools). Odds ratio (OR) and confidence intervals (CI) were reported of both univariable and multivariable analysis. Qualitative analysis No formal qualitative analysis was performed regarding the open-ended questions included in the questionnaire. However, all responses were listed and independently categorized by three researchers (AS, SS, MD) in a blinded manner. Predefined categories were developed based on existing literature on school toilet-related challenges ( 10 , 12 – 16 ). If new themes emerged, they were added, and the other researchers would be informed and asked to take the new theme into the assessment. The results of the three researchers were compared. In case of disagreement, a majority vote determined the final category. If all three categorizations differed, a final decision was made by an independent expert (RG). Within each category an overarching theme or summary would was developed and presented. Results In total, 255 questionnaires were distributed to parents of children with HD. After sending reminders, 66 (25.9%) responses were received. In total, 44 (17.3%) questionnaires were completed with over 90% of items answered. Children had a median age of 7.0 years (IQR 5.3–10.8). 3.1 Admission to primary school A descriptive analysis of school choice and toilet facilities is presented in Table 1 . Most parents visited two or more schools before making a final school selection. Thirty (68.2%) parents reported that school installed admission requirements regarding fecal continence. Eight parents (18.2%) indicated that their child was not granted school admission as they had not yet achieved full fecal continence. Table 1 General characteristics Total n = 44 n = % School admission 1 school visited 2 schools visited 3 schools visited 4 schools visited > 5 schools visited 0 schools visited/ missing 17 8 6 2 3 8 38.6% 18.2% 13.6% 4.5% 6.8% 18.2% Requirements for potty trained 30 68.2% Problem with application 8 18.2% Toilet use Do not use Soley urinating Both urinating and defecating 5 16 23 11.4% 36.6%, 52.3% Parents perception Solely positive experiences 16 36.4%% Solely negative experiences 4 9.1% Both positive and negative 13 29.5% Neither positive or negative 11 25.0% Characteristics of school toilet facilities Clean toilet 30 68.2% Possibility to clean toilet 17 36.8% Accessible toilet 35 79.5% Open cabin Closed cabin 24 20 54.5% 45.5% Child self-cleaning option 21 47.7% Different toilet available Different toilet is spacious Different toilet open 14 11 3 31.8% 84.6% 23.1% Assistance at school 5 11.9% Rules and regulations Toilet rules present 27 61.4% Child specific rules for toilet Specific rules pre-existing 25 2 59.5% 8.0% Special services present 4 9,5% 3.2 Geographical differences Most schools were located in cities (n = 26, 59.1%), and the majority of schools located in the city accommodated between 100 and 500 students (n = 17, 38.6%). Parents reported schools to have admission requirements related to urinary- and fecal continence in 16 (32%) city schools and 14 (36%) village schools (Table 2 ). No statistically significant demographic differences were observed between city and village schools. Table 2 Descriptives divided per school or city Village, n = 18 (49%) City n = 26 (59.1%) p-value Age of child (median) 6.5 yrs (IQR 5.0-8.3) 8.5 yrs (IQR 6.0–11.0) 0.179 Size of school, n (%) 500 children 1 (5.6%) 6 (23.1%) Admission requirements, n(%) 14 (31.8%) 16 (61.5%) 0.256 Parental experiences, n (%) Positive 11 (61.1%) 20 (76.9%) 0.258 Negative 7 (38.9%) 6 (23.1%) 3.2 Toilet use and the school toilet facilities Parental reports indicated that five (11.4%) children refrained from using school toilets entirely. 16 (41.0%) used the facilities exclusively for urination, while 23 (52.3%) utilized them for urination and defecation. Toilets were reported to be clean by 30 (68.2%) parents. Seventeen parents (36.8%) described that it was possible to clean the toilet by children, parents or teachers. The percentage open and closed toilet spaces was relatively comparable, 24 (54.5%) and 20 (45.5%), respectively. Toilets were frequently described as spacious and easily accessible (n = 35, 79.5%). Possibilities for a child to clean themselves were lacking in 21 (52.3%) cases. 3.3 Positive and negative parental experiences Overall, 16 (36.4%) of parents reported solely positive experiences with school toilet facilities, 4 (9.1%) reported solely negative experiences, and 13 (29.5%) reported to have both, 11 (25.0%) reported to have neither positive nor negative experiences. There were no significant differences in the perceived positive or negative parental experiences regarding school toilet facilities between these groups (Table 2 ). Descriptions of positive and negative experience follow in the next paragraph. Reasons for avoiding toilet use at school included poor cleanliness, continence problems, lack of assistance, limited time to use the toilet, and feelings of shame. Schools frequently implemented rules and regulations regarding the timing of toilet use (n = 27, 61.4%) or created child-specific rules (n = 25, 59.5%). For 14 (31.8%) children a different adjusted toilet (separate toilet) was available. For only 5 (11.9%) children toilet assistance by somebody at school was provided when using the toilet. The multivariable analysis indicated that positive parental experiences were significantly associated with the possibility for the child to clean themselves at school (OR 5.0; 95% CI: 1.1–23.5) (Tables 3 and 4 ). Positive experiences occurred more frequently (OR 13.0, CI 95% 1.30-131.7) when a different toilet was available for the child (e.g., the teachers’ toilet, toilet for disabled or another designated facility). For negative experiences, the analysis showed a significant association with the absence of child-specific toilet rules (OR 4.8; 95% CI: 1.1–21.9). This absence meant that children with HD had to follow the same toilet rules as other students, without consideration for their individual medical needs. Table 2 Positive parental experiences* Univariable Multivariable OR (95% CI) p-value OR (95% CI) p-value Possibility to clean toilet 4.000 (CI 0,923 − 17,329) 0.064 2.839 (0,591 − 13,638) 0.192 Child self-cleaning option 6.545 (1,504 − 28,490) 0.012 5.088 (1,101 − 23,518) 0.037 Different toilet available 11.375 (1,316 − 98,311) 0.027 13.046 (1,292 − 131,697) 0.029 * Corrected for school size ( 500 students per school), and school location (city schools or village schools) Table 3 Negative parental experiences* Univariable Multivariable OR (95% CI) p-value OR (95% CI) p-value Possibility to clean child 0.436 (0.125–1.525) 0.194 0.434 (0.110–1.713) 0.223 Toilet rules present 3.018 (0.781–11.655) 0.109 2.998 (0.751–11.960) 0.12 Child specific rules for toilet 3.521 (0.896013.828) 0.071 4.840 (1.070–21.900) 0.041 * Corrected for school size ( 500 students per school), and school location (city schools or village schools) 3.4 Parental comments All parents were invited to respond to open-ended questions, providing explanations for their answers. The responses were grouped into positive and negative experiences and categorized into six themes that emerged from the data (see Table 5) (see Supplementary material 2 for a complete overview on all answers). The first and most frequently mentioned theme was personal and medical assistance (mentioned negatively 12 times; positively 16 times). Parents described positive experiences when support was available at school from a nurse, teacher, or teaching assistant. When this assistance was lacking, it was frequently described to be due to budget or staffing constraints and associated with negative experiences. The second theme, possibilities and opportunities , included examples that positively influenced both parents and children. The most important factor mentioned was clear communication among parents, children, and teachers. Positive experiences were also associated with customized agreements or rules developed in collaboration with the school. Parents also reported negative experiences related to the medical nature of HD, particularly regarding avoidance behavior and resulting abdominal symptoms. Toilet facilities were described negatively 13 times and positively 4 times. Positive feedback focused on the availability of a separate toilet and the ability for the child to clean themselves when needed. Negative feedback addressed cleanliness, cramped space, inability to lock the door, small doors, and the absence of a separate toilet. Finally, information and education were mentioned in only two responses: one parent appreciated improved awareness of delayed potty training, while the other noted a lack of understanding among teachers. Table 4 ; Themes emerged from the open-ended questions divided between negative and positive experiences Qualitative themes n = Negative experience Toilet facilities 13 Cleanliness, not spacious, no toilet paper, no ability to close, small doors, no special toilets. Personal and medical assistance 12 No ability of teacher to assist with cleaning, due to lacking time and budget Possibilities and opportunities 4 Parents having to propose possibilities Medical character 4 Child does not want to have defecation at school, causing abdominal pain School rules 3 School requirements for potty trained, and rules concerning specific timing of toilet use Information and education 1 No understanding from teachers Qualitative themes n = Positive experience Personal and medical assistance 16 Assistance (especially during first years) by school nurse, teacher, assistant teacher, and positive coaching for independence. Possibilities and opportunities 14 Potty training reward system and clear communication with teachers School rules 8 Possibility to go to the bathroom when needed Medical character 5 Early continence/ potty trained. Toilet facilities 4 Special toilet for privacy and cleaning when needed. Information and education 1 Knowledge and understanding for delayed potty training Discussion This study explored parents’ perception of parents with children with Hirschsprung disease (HD) regarding school toilet facilities of primary schools in the Netherlands. Parents reported that schools often imposed requirements regarding fecal continence, and in some instances these requirements created substantial difficulties in enrolling their child. Approximately half of the parents indicated that their child refrained from using school toilets for defecation, and a notable proportion emphasized that their child never used the school toilet. Parents experiences of the school toilet facilities were positive due to the possibility for children to clean themselves at school and the availability of a separate toilet. On the other hand, parents experienced the school toilets facilities negatively when no child-specific toilet rules were present. One out of five parents had difficulties with enrolling a child in primary school, which is comparable to the rate reported by parents of children with ARM. This supports our idea, that difficulties with enrollment into primary schools may be faced by many more parents of children with rare and complex gastrointestinal diseases, especially when looking at the requirement “urinary and fecal continent” ( 12 ). As demonstrated by our study, about two third of the parents reported that schools required fecal continence as a condition for enrollment, which is in line with the previously published data on parents of children with ARM ( 12 ). These high proportions are concerning, as Dutch legislation prohibits schools from denying admission based on continence status for children with underlying medical conditions ( 17 ). Comparable regulations exist in other Western countries (e.g., the United Kingdom, France, and the United States), where national policies explicitly state that toilet training is not a prerequisite for school entry and prohibits schools from refusing admission to children with disabilities who are not fully toilet trained ( 18 – 21 ). Besides, since there is no best age for potty training in healthy children universally agreed-upon ( 22 ), being fully toilet trained should not be required before starting school, especially for children with underlying medical conditions like HD. The high frequency of children with HD that do not use the school toilet for defecation (48%), of whom 11% does not use the toilet at all, aligns with previous research in the general pediatric population. Three studies reported the frequency of toilet use at school in healthy children aged between 6–17 years; 38–72% did not use the toilet for defecation and 16–23% did not use toilets at school at all ( 13 – 15 ). The substantial variation in defecation-related toilet use appears to be influenced by gender differences, potentially attributable to variations in toilet facilities. In the study presenting most variation, the boys’ restrooms had the availability of urinals alongside separate cubicles which may have reduced the use of cubicles, thereby contributing to their relative cleanliness compared to girls’ facilities ( 15 ). Looking at children with rare and complex gastrointestinal diseases, 13% of children with ARM did not use the school toilet at all for both urinating as defecation ( 12 ). Toilet avoidance and defecation withholding is significantly correlated with fecal incontinence and constipation. In a healthy Danish population of 19,577 children aged 5 to 19 years, toilet avoidance had an OR for fecal incontinence of 1.25 (1.00-1.59) and for constipation of 1.28 (1.17–1.40) ( 16 ). Although this study was conducted in a healthy population, its findings are relevant for children with HD, as they are likely to face similar challenges given the higher reported prevalence of constipation and incontinence ( 23 – 25 ). Reported reasons for toilet avoidance included inadequate cleanliness, insufficient space, lack of toilet paper, inability to lock doors, small cubicles, and the absence of designated or specialized toilets. In previous studies, cleanliness has most frequently been reported as one of the primary reasons for avoiding the toilet ( 10 , 13 , 14 ). In ourstudy 17 parents (36%) reported unclean toilet conditions, however, cleanliness was not significantly associated with negative experiences. The differences between previous studies and our findings may be explained by the distinct challenges faced by children with HD compared to healthy children. For children with HD, different problems appear to have a greater impact on toilet use than in the general population. Moreover, our study reflects the parents’ perspective, which may differ from the experiences reported directly by children. Instead, parents experienced the toilet facilities negatively due to the absence of child-specific toilet-use rules, an association that was found in both the multivariate analysis and the qualitative remarks. Among healthy children, restrictive rules regarding toilet access often leads to withholding behavior, as children prefer not to ‘waste’ their break time and toilets are typically overcrowded during permitted periods ( 10 ). Withholding contributes to the development of bladder and bowel dysfunction in otherwise healthy children ( 26 , 27 ). For children with HD, however, specific toilet-use regulations are essential, as bowel dysfunction represents a common long-term sequela of the condition. Factors contributing to positive experiences of the toilet facilities were the ability for the child to clean themselves and the availability to have access to a separate toilet for the child with HD. These findings were supported by responses to the open-ended questions. The most frequently reported positive aspect regarding school toilet use concerned the provision of assistance by school staff. To our knowledge, such positive associations have not been documented in previous research. This indicates a need for further investigation into the types of assistance parents require. Positive parental experiences with disease management and daily care have been shown to enhance the quality of life of children with HD ( 28 ). We hypothesize that increasing teachers’ awareness of HD and their ability to provide appropriate support in the school setting could not only improve parental quality of life but also strengthen children’s self-esteem and reduce psychological distress, consistent with previous findings that psychological support and peer understanding have such effects ( 6 ). This study is the first to specifically explore parental perceptions of school toilet facilities for children with HD, addressing a fundamental and everyday concern that these children, and also their caregivers, encounter, particularly during the challenging transition into the school environment ( 7 ). The difficulties parents encounter when enrolling their child in school, potentially related to toilet training requirements, represent an important consideration for Dutch schools in the formulation and implementation of their admission policies and regulations. Further, the experiences of school toilets for children with HD are particularly important, as they influence toilet avoidance. Toilet avoidance reinforces the risk of the long term sequelae of fecal incontinence and constipation that these children encounter. These sequelae can contribute to increased anxiety, school absenteeism, and impaired school functioning, and are therefore of great importance to prevent ( 29 ). Our findings, and the current literature underscore the need for adequate personal and medical assistance at school, as well as targeted education for school staff to improve their confidence and competence in supporting children with HD. This study should be interpreted in light of certain limitations. First, due to the narrow focus on this specific population, and the rarity of the disease, the sample size was rather limited. However, the responses to the open-ended questions revealed notable similarities between respondents, and provides therefore a meaningful foundation for understanding the issue. However, the response rate in our study was relatively low compared to other research in this field ( 14 , 27 ). While we distributed questionnaires via email through the patient organization, other studies have recruited participants directly through schools, which likely facilitated higher response rates and more comprehensive data collection. The low response rate in our study may have introduced bias, as it relies solely on parental perceptions of their child’s behavior at school. Parents with negative experiences may have been more inclined to participate, potentially leading to an overrepresentation of unfavorable reports. Second, it should be noted that in this study no formal coding strategy for the qualitative data was applied. Instead, categorizing has been done by separate researchers based on predefined categories. Future research could benefit from adopting a comprehensive qualitative approach, such as focus groups or in-depth interviews, to gain deeper insights into the challenges faced by children with HD in school environments and to support the development of targeted interventions. Moreover, including an increased sample comprising healthy children would be valuable (i.g. a case-control study comparing Dutch healthy children with those who have a history of gastrointestinal conditions). Involving different stakeholder, e.g. children, parents, teacher, school board members, would also be beneficial. This could contribute to more tailored approaches for improving school toilet facilities. In conclusion, this study provides novel insights into the perception of parents regarding school admission and toilet behavior of children with HD. One in five parents had difficulties with enrolling their child into a primary school. Half of children did not use the school toilet for defecation. Parental experiences were found to be shaped by physical aspects of the toilet environment and the school’s policies and support structures. Given the long-term sequelae of HD that include continence problems and psychological distress, schools play a critical role in mitigating toileting-related challenges. These findings highlight the need for targeted interventions, including improved facilities, individualized toileting policies, and education for school staff. Supporting children with HD in school settings requires a collaborative effort between healthcare providers, parents, and educators. Declarations Author contribution: AS: A.C. ter Schure – formal analysis, writing original draft, data curation SS: S.P. van Streun – resources, investigation, methodology, data curation, review & editing CB: C.M.C. de Beaufort – project administration, methodology, review & editing JL: J. van Leeuwen – review & editing MD: M. van Dorp – data curation SV: S. van Velsen-Knobbout – resources, review & editing JB: J. Bols – review & editing MB: M.A. Benninga – review & editing JD: J.P.M. Derikx – supervision, review & editing RG: R.R. Gorter – supervision, review & editing Funding information: Non-financial interests: none. Conflict of interest statement: The authors have no relevant financial or non-financial interests to disclose. 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). 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J Pediatr Surg 52(4):549–553 Lundblad B, Hellström AL, Berg M (2010) Children's experiences of attitudes and rules for going to the toilet in school. Scand J Caring Sci 24(2):219–223 Shkalim Zemer V, Cohen HA, Richenberg Y, Gerstein M, Atias I, Gur S et al (2023) Personal hygiene, environmental conditions, and toilet use of children in primary schools: A cohort study. J Pediatr Urol 19(6):721–727 Evans-Barns HM, Hall M, Trajanovska M, Hutson JM, Muscara F, King SK (2024) Psychosocial outcomes of parents of children with Hirschsprung disease beyond early childhood. J Pediatr Surg 59(4):694–700 Filce HG, LaVergne L (2015) Absenteeism, educational plans, and anxiety among children with incontinence and their parents. J Sch Health 85(4):241–250 Additional Declarations No competing interests reported. Supplementary Files SupplementaryMaterial12Surveyandopenendedresponses.docx Cite Share Download PDF Status: Published Journal Publication published 08 Dec, 2025 Read the published version in Pediatric Surgery International → Version 1 posted Editorial decision: Revision requested 04 Nov, 2025 Reviews received at journal 04 Nov, 2025 Reviews received at journal 03 Nov, 2025 Reviewers agreed at journal 03 Nov, 2025 Reviewers agreed at journal 01 Nov, 2025 Reviewers agreed at journal 28 Oct, 2025 Reviewers invited by journal 27 Oct, 2025 Editor assigned by journal 25 Oct, 2025 Submission checks completed at journal 23 Oct, 2025 First submitted to journal 20 Oct, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7906386","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":539940879,"identity":"6a98513b-3441-4781-aadb-041d46504efd","order_by":0,"name":"A. 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Benninga","email":"","orcid":"","institution":"Amsterdam UMC location University of Amsterdam","correspondingAuthor":false,"prefix":"","firstName":"M.","middleName":"A.","lastName":"Benninga","suffix":""},{"id":539940887,"identity":"db44c182-5a07-4a38-9fe4-32a70a384fb2","order_by":8,"name":"J. P.M. Derikx","email":"","orcid":"","institution":"Emma Children’s Hospital Amsterdam UMC, Location University of Amsterdam","correspondingAuthor":false,"prefix":"","firstName":"J.","middleName":"P.M.","lastName":"Derikx","suffix":""},{"id":539940888,"identity":"8c9ce2b5-90b4-4ea9-8a44-288cb6619eaf","order_by":9,"name":"R. R. 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Prevalence varies between 1 to 2.6 in 10,000 live born children (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). Despite the surgical advancements, long-term gastrointestinal sequelae remain common (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e), including constipation (14%), fecal incontinence (20%), and Hirschsprung associated enterocolitis (HEAC) (23%) (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). These sequelae potentially lead to psychological difficulties, and can therefore negatively affect school performance (\u003cspan additionalcitationids=\"CR7\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Timely defecation is essential to prevent sequelae of stool accumulation and fecal incontinence, to which children with HD are particularly vulnerable (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eIn the general pediatric population, it has been reported that children demonstrate a preference for using the toilet at home for defecation rather than school facilities, and they often choose to withhold defecation until returning home (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). This withholding behavior leads to abdominal pain, constipation and physician visits (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). Since children with HD are already vulnerable for these symptoms, the use of the school toilet is essential.\u003c/p\u003e\u003cp\u003ePreviously, it has been shown that similar problems emerge in children with functional constipation and anorectal malformations (ARM). Parents of school-aged children reported challenges arising from inadequately equipped, poorly maintained, or unhygienic toilet facilities, limited accessibility, and insufficient assistance from teachers. (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). This contributes to toilet avoidance at school by these children.\u003c/p\u003e\u003cp\u003eAlthough previous studies addressing the problems of the school toilet facilities and withholding behavior at school have focused on children with functional constipation, ARM, and healthy children, we hypothesize that similar concerns are applicable to children with HD. Therefore, the aim of this study is to gain insight into the school\u0026rsquo;s toilet perception of parents with children with HD, and the challenges faced at school by their children. This study will also examine the extent to which parents encounter difficulties or ease when enrolling their child in a primary school. Furthermore, it will explore the factors that positively or negatively influence parental experiences with school toilets facilities, including the specific measures taken by schools to support children with HD and to address challenges related to toilet use during school hours.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eStudy design\u003c/p\u003e\u003cp\u003eThis study used a cross-sectional design surveys with closed- and open-ended questions regarding school toilet facilities. It was performed from October 2023 to January 2024. The questionnaire was administered in Dutch and translated into English for the purpose of this paper. The questionnaire was previously composed by researchers within our research group (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e) and adapted to the HD patient population by a consensus meeting with medical experts and the Patient Organization for Hirschsprung Disease (Vereniging ziekte van Hirschsprung). Ethical approval was obtained by the Amsterdam UMC, Medical Ethical Commission and was not subject to medical scientific research with the humans act statement (ref. no. W22_400 #22.475 on 10 November 2022)\u003c/p\u003e\u003cp\u003eQuestionnaire\u003c/p\u003e\u003cp\u003eThe questionnaire was divided into two main domains. The first domain contained general information, including age of children, school description (i.e. region, location and size), number of schools visited before participation, difficulties experienced by parents when enrolling the child into a school. The second domain focused on information on parents\u0026rsquo; perception with the school toilet facilities; positive or negative experiences, characteristics of toilet spaces and facilities, specialized toilet and extra help concerning toileting. Information on sex and surgical details were not included to ensure anonymity. An open toilet cubicle was defined as one in which the partition walls and doors did not reach the ceiling. (Questionnaire can be found in supplementary table \u003cspan refid=\"MOESM1\" class=\"InternalRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e\u003cp\u003eParticipants\u003c/p\u003e\u003cp\u003eEligible participants (parents of school attending HD children) were recruited by the Amsterdam Pediatric Abdominal Center of Emma children\u0026rsquo;s hospital of Amsterdam UMC and the patient organization for HD independently. Participants were eligible if they were 4 to 13 years old at the time of the study, underwent surgery for HD, and were enrolled in a primary school in the Netherlands. Eligible participants were approached through a mailing list and social media. Privacy legislation prevented the exchange of patient listings between the Amsterdam UMC and patient organization. Two months after the first invitation, reminders were send by email, by Amsterdam UMC and the patient representative organization. As a result, parents may have been contacted more than once; in such cases, they were instructed to complete the questionnaire only once. Only questionnaires with a completion rate exceeding 90% were included in the analysis to improve reliability and validity of the acquired data.\u003c/p\u003e\u003cp\u003eStatistical analyses\u003c/p\u003e\u003cp\u003eStatistical analyses were conducted using IBM SPSS Statistics for Windows, version 28 (IBM Corp., Armonk, NY, USA). For the first domain, only descriptive statistics were used for the analysis. Results are reported as absolute numbers (n) and corresponding percentages (%) for the binary or categorical data. Continues variables are presented as mean or median, with corresponding standard deviations or interquartile ranges, depending on visual data distribution, by using a Q-Q plot and histrogram. We tested for potential differences based on school location (city vs. village), with Chi-square and p-values, as we hypothesized that location might influence the results. If significant differences were identified, analyses would be conducted separately for each group; otherwise, data from city and village schools would be analyzed together. Age of the children was compared by using a Mann-Whitney U test, due to the anticipated skewed distribution. To identify factors potentially associated with negative, respectively positive parental experiences, a univariable logistic regression analysis was conducted. Variables with a p-value\u0026thinsp;\u0026lt;\u0026thinsp;0.200 were included in the multivariable analysis, corrected for school size (\u0026lt;\u0026thinsp;100, 100\u0026ndash;500, or \u0026gt;\u0026thinsp;500 students) and school location (city or village schools). Odds ratio (OR) and confidence intervals (CI) were reported of both univariable and multivariable analysis.\u003c/p\u003e\u003cp\u003eQualitative analysis\u003c/p\u003e\u003cp\u003eNo formal qualitative analysis was performed regarding the open-ended questions included in the questionnaire. However, all responses were listed and independently categorized by three researchers (AS, SS, MD) in a blinded manner. Predefined categories were developed based on existing literature on school toilet-related challenges (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan additionalcitationids=\"CR13 CR14 CR15\" citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). If new themes emerged, they were added, and the other researchers would be informed and asked to take the new theme into the assessment. The results of the three researchers were compared. In case of disagreement, a majority vote determined the final category. If all three categorizations differed, a final decision was made by an independent expert (RG). Within each category an overarching theme or summary would was developed and presented.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eIn total, 255 questionnaires were distributed to parents of children with HD. After sending reminders, 66 (25.9%) responses were received. In total, 44 (17.3%) questionnaires were completed with over 90% of items answered. Children had a median age of 7.0 years (IQR 5.3\u0026ndash;10.8).\u003c/p\u003e\u003cdiv id=\"Sec4\" class=\"Section2\"\u003e\u003ch2\u003e3.1 Admission to primary school\u003c/h2\u003e\u003cp\u003eA descriptive analysis of school choice and toilet facilities is presented in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e. Most parents visited two or more schools before making a final school selection. Thirty (68.2%) parents reported that school installed admission requirements regarding fecal continence. Eight parents (18.2%) indicated that their child was not granted school admission as they had not yet achieved full fecal continence.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eGeneral characteristics\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"4\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTotal n\u0026thinsp;=\u0026thinsp;44\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003en =\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c4\"\u003e\u003cp\u003e%\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e\u003cp\u003eSchool admission\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 school visited\u003c/p\u003e\u003cp\u003e2 schools visited\u003c/p\u003e\u003cp\u003e3 schools visited\u003c/p\u003e\u003cp\u003e4 schools visited\u003c/p\u003e\u003cp\u003e\u0026gt;\u0026thinsp;5 schools visited\u003c/p\u003e\u003cp\u003e0 schools visited/ missing\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e17\u003c/p\u003e\u003cp\u003e8\u003c/p\u003e\u003cp\u003e6\u003c/p\u003e\u003cp\u003e2\u003c/p\u003e\u003cp\u003e3\u003c/p\u003e\u003cp\u003e8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e38.6%\u003c/p\u003e\u003cp\u003e18.2%\u003c/p\u003e\u003cp\u003e13.6%\u003c/p\u003e\u003cp\u003e4.5%\u003c/p\u003e\u003cp\u003e6.8%\u003c/p\u003e\u003cp\u003e18.2%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eRequirements for potty trained\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e30\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e68.2%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eProblem with application\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e18.2%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eToilet use\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eDo not use\u003c/p\u003e\u003cp\u003eSoley urinating\u003c/p\u003e\u003cp\u003eBoth urinating and defecating\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e5\u003c/p\u003e\u003cp\u003e16\u003c/p\u003e\u003cp\u003e23\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e11.4%\u003c/p\u003e\u003cp\u003e36.6%, \u003c/p\u003e\u003cp\u003e52.3%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"3\" rowspan=\"4\"\u003e\u003cp\u003eParents perception\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSolely positive experiences\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e16\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e36.4%%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSolely negative experiences\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e9.1%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eBoth positive and negative\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e13\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e29.5%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eNeither positive or negative\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e11\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e25.0%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"6\" rowspan=\"7\"\u003e\u003cp\u003eCharacteristics of school toilet facilities\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eClean toilet\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e30\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e68.2%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003ePossibility to clean toilet\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e17\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e36.8%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eAccessible toilet\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e35\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e79.5%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eOpen cabin\u003c/p\u003e\u003cp\u003eClosed cabin\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e24\u003c/p\u003e\u003cp\u003e20\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e54.5%\u003c/p\u003e\u003cp\u003e45.5%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eChild self-cleaning option\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e21\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e47.7%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eDifferent toilet available\u003c/p\u003e\u003cp\u003eDifferent toilet is spacious\u003c/p\u003e\u003cp\u003eDifferent toilet open\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e14\u003c/p\u003e\u003cp\u003e11\u003c/p\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e31.8%\u003c/p\u003e\u003cp\u003e84.6%\u003c/p\u003e\u003cp\u003e23.1%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eAssistance at school\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e11.9%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e\u003cp\u003eRules and regulations\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eToilet rules present\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e27\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e61.4%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eChild specific rules for toilet\u003c/p\u003e\u003cp\u003eSpecific rules pre-existing\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e25\u003c/p\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e59.5%\u003c/p\u003e\u003cp\u003e8.0%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSpecial services present\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e9,5%\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec5\" class=\"Section2\"\u003e\u003ch2\u003e3.2 Geographical differences\u003c/h2\u003e\u003cp\u003eMost schools were located in cities (n\u0026thinsp;=\u0026thinsp;26, 59.1%), and the majority of schools located in the city accommodated between 100 and 500 students (n\u0026thinsp;=\u0026thinsp;17, 38.6%). Parents reported schools to have admission requirements related to urinary- and fecal continence in 16 (32%) city schools and 14 (36%) village schools (Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e2\u003c/span\u003e). No statistically significant demographic differences were observed between city and village schools.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eDescriptives divided per school or city\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"4\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eVillage, n\u0026thinsp;=\u0026thinsp;18 (49%)\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eCity n\u0026thinsp;=\u0026thinsp;26 (59.1%)\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c4\"\u003e\u003cp\u003ep-value\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eAge of child (median)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e6.5 yrs (IQR 5.0-8.3)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e8.5 yrs (IQR 6.0\u0026ndash;11.0)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e0.179\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSize of school, n (%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026lt;\u0026thinsp;100 children\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e4 (22.2%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3 (11.5%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e0.236\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e100\u0026ndash;500 children\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e13 (72.2%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e17 (65.3%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026gt;\u0026thinsp;500 children\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (5.6%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e6 (23.1%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eAdmission requirements, n(%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e14 (31.8%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e16 (61.5%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e0.256\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eParental experiences, n (%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePositive\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e11 (61.1%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e20 (76.9%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e\u003cp\u003e0.258\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNegative\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e7 (38.9%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e6 (23.1%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec6\" class=\"Section2\"\u003e\u003ch2\u003e3.2 Toilet use and the school toilet facilities\u003c/h2\u003e\u003cp\u003eParental reports indicated that five (11.4%) children refrained from using school toilets entirely. 16 (41.0%) used the facilities exclusively for urination, while 23 (52.3%) utilized them for urination and defecation. Toilets were reported to be clean by 30 (68.2%) parents. Seventeen parents (36.8%) described that it was possible to clean the toilet by children, parents or teachers. The percentage open and closed toilet spaces was relatively comparable, 24 (54.5%) and 20 (45.5%), respectively. Toilets were frequently described as spacious and easily accessible (n\u0026thinsp;=\u0026thinsp;35, 79.5%). Possibilities for a child to clean themselves were lacking in 21 (52.3%) cases.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec7\" class=\"Section2\"\u003e\u003ch2\u003e3.3 Positive and negative parental experiences\u003c/h2\u003e\u003cp\u003eOverall, 16 (36.4%) of parents reported solely positive experiences with school toilet facilities, 4 (9.1%) reported solely negative experiences, and 13 (29.5%) reported to have both, 11 (25.0%) reported to have neither positive nor negative experiences. There were no significant differences in the perceived positive or negative parental experiences regarding school toilet facilities between these groups (Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e2\u003c/span\u003e). Descriptions of positive and negative experience follow in the next paragraph.\u003c/p\u003e\u003cp\u003eReasons for avoiding toilet use at school included poor cleanliness, continence problems, lack of assistance, limited time to use the toilet, and feelings of shame. Schools frequently implemented rules and regulations regarding the timing of toilet use (n\u0026thinsp;=\u0026thinsp;27, 61.4%) or created child-specific rules (n\u0026thinsp;=\u0026thinsp;25, 59.5%). For 14 (31.8%) children a different adjusted toilet (separate toilet) was available. For only 5 (11.9%) children toilet assistance by somebody at school was provided when using the toilet. The multivariable analysis indicated that positive parental experiences were significantly associated with the possibility for the child to clean themselves at school (OR 5.0; 95% CI: 1.1\u0026ndash;23.5) (Tables\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e3\u003c/span\u003e and \u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e4\u003c/span\u003e). Positive experiences occurred more frequently (OR 13.0, CI 95% 1.30-131.7) when a different toilet was available for the child (e.g., the teachers\u0026rsquo; toilet, toilet for disabled or another designated facility). For negative experiences, the analysis showed a significant association with the absence of child-specific toilet rules (OR 4.8; 95% CI: 1.1\u0026ndash;21.9). This absence meant that children with HD had to follow the same toilet rules as other students, without consideration for their individual medical needs.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003ePositive parental experiences*\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"5\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eUnivariable\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colspan=\"2\" nameend=\"c5\" namest=\"c4\"\u003e\u003cp\u003eMultivariable\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eOR (95% CI)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003ep-value\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eOR (95% CI)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003ep-value\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePossibility to clean toilet\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e4.000 (CI 0,923\u0026thinsp;\u0026minus;\u0026thinsp;17,329)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0.064\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e2.839 (0,591\u0026thinsp;\u0026minus;\u0026thinsp;13,638)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e0.192\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eChild self-cleaning option\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e6.545 (1,504\u0026thinsp;\u0026minus;\u0026thinsp;28,490)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0.012\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e5.088 (1,101\u0026thinsp;\u0026minus;\u0026thinsp;23,518)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e0.037\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eDifferent toilet available\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e11.375 (1,316\u0026thinsp;\u0026minus;\u0026thinsp;98,311)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0.027\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e13.046 (1,292\u0026thinsp;\u0026minus;\u0026thinsp;131,697)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e0.029\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003ctfoot\u003e\u003ctr\u003e\u003ctd colspan=\"5\"\u003e\u003cem\u003e* Corrected for school size (\u0026lt;\u0026thinsp;100, 100\u0026ndash;500, \u0026gt;\u0026thinsp;500 students per school), and school location (city schools or village schools)\u003c/em\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tfoot\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eNegative parental experiences*\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"5\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eUnivariable\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMultivariable\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eOR (95% CI)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003ep-value\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eOR (95% CI)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003ep-value\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePossibility to clean child\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0.436 (0.125\u0026ndash;1.525)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0.194\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0.434 (0.110\u0026ndash;1.713)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e0.223\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eToilet rules present\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3.018 (0.781\u0026ndash;11.655)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0.109\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e2.998 (0.751\u0026ndash;11.960)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e0.12\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eChild specific rules for toilet\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3.521 (0.896013.828)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0.071\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e4.840 (1.070\u0026ndash;21.900)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e0.041\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003e* Corrected for school size (\u0026lt;\u0026thinsp;100, 100\u0026ndash;500, \u0026gt;\u0026thinsp;500 students per school), and school location (city schools or village schools)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003e3.4 Parental comments\u003c/h2\u003e\u003cp\u003e All parents were invited to respond to open-ended questions, providing explanations for their answers. The responses were grouped into positive and negative experiences and categorized into six themes that emerged from the data (see Table\u0026nbsp;5) (see Supplementary material 2 for a complete overview on all answers). The first and most frequently mentioned theme was \u003cem\u003epersonal and medical assistance\u003c/em\u003e (mentioned negatively 12 times; positively 16 times). Parents described positive experiences when support was available at school from a nurse, teacher, or teaching assistant. When this assistance was lacking, it was frequently described to be due to budget or staffing constraints and associated with negative experiences. The second theme, \u003cem\u003epossibilities and opportunities\u003c/em\u003e, included examples that positively influenced both parents and children. The most important factor mentioned was clear communication among parents, children, and teachers. Positive experiences were also associated with customized agreements or rules developed in collaboration with the school. Parents also reported negative experiences related to the medical nature of HD, particularly regarding avoidance behavior and resulting abdominal symptoms. \u003cem\u003eToilet facilities\u003c/em\u003e were described negatively 13 times and positively 4 times. Positive feedback focused on the availability of a separate toilet and the ability for the child to clean themselves when needed. Negative feedback addressed cleanliness, cramped space, inability to lock the door, small doors, and the absence of a separate toilet. Finally, \u003cem\u003einformation and education\u003c/em\u003e were mentioned in only two responses: one parent appreciated improved awareness of delayed potty training, while the other noted a lack of understanding among teachers.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab5\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003e; Themes emerged from the open-ended questions divided between negative and positive experiences\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"3\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eQualitative themes\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003en =\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eNegative experience\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eToilet facilities\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e13\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eCleanliness, not spacious, no toilet paper, no ability to close, small doors, no special toilets.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003ePersonal and medical assistance\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eNo ability of teacher to assist with cleaning, due to lacking time and budget\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003ePossibilities and opportunities\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eParents having to propose possibilities\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eMedical character\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eChild does not want to have defecation at school, causing abdominal pain\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eSchool rules\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eSchool requirements for potty trained, and rules concerning specific timing of toilet use\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eInformation and education\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eNo understanding from teachers\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Taba\" border=\"1\"\u003e\u003ccolgroup cols=\"3\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cem\u003eQualitative themes\u003c/em\u003e\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cem\u003en =\u003c/em\u003e\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003e\u003cem\u003ePositive experience\u003c/em\u003e\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003ePersonal and medical assistance\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e16\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eAssistance (especially during first years) by school nurse, teacher, assistant teacher, and positive coaching for independence.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003ePossibilities and opportunities\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e14\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003ePotty training reward system and clear communication with teachers\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eSchool rules\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003ePossibility to go to the bathroom when needed\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eMedical character\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eEarly continence/ potty trained.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eToilet facilities\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eSpecial toilet for privacy and cleaning when needed.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eInformation and education\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eKnowledge and understanding for delayed potty training\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study explored parents\u0026rsquo; perception of parents with children with Hirschsprung disease (HD) regarding school toilet facilities of primary schools in the Netherlands. Parents reported that schools often imposed requirements regarding fecal continence, and in some instances these requirements created substantial difficulties in enrolling their child. Approximately half of the parents indicated that their child refrained from using school toilets for defecation, and a notable proportion emphasized that their child never used the school toilet. Parents experiences of the school toilet facilities were positive due to the possibility for children to clean themselves at school and the availability of a separate toilet. On the other hand, parents experienced the school toilets facilities negatively when no child-specific toilet rules were present.\u003c/p\u003e\u003cp\u003e One out of five parents had difficulties with enrolling a child in primary school, which is comparable to the rate reported by parents of children with ARM. This supports our idea, that difficulties with enrollment into primary schools may be faced by many more parents of children with rare and complex gastrointestinal diseases, especially when looking at the requirement \u0026ldquo;urinary and fecal continent\u0026rdquo; (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). As demonstrated by our study, about two third of the parents reported that schools required fecal continence as a condition for enrollment, which is in line with the previously published data on parents of children with ARM (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). These high proportions are concerning, as Dutch legislation prohibits schools from denying admission based on continence status for children with underlying medical conditions (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). Comparable regulations exist in other Western countries (e.g., the United Kingdom, France, and the United States), where national policies explicitly state that toilet training is not a prerequisite for school entry and prohibits schools from refusing admission to children with disabilities who are not fully toilet trained (\u003cspan additionalcitationids=\"CR19 CR20\" citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). Besides, since there is no best age for potty training in healthy children universally agreed-upon (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e), being fully toilet trained should not be required before starting school, especially for children with underlying medical conditions like HD.\u003c/p\u003e\u003cp\u003eThe high frequency of children with HD that do not use the school toilet for defecation (48%), of whom 11% does not use the toilet at all, aligns with previous research in the general pediatric population. Three studies reported the frequency of toilet use at school in healthy children aged between 6\u0026ndash;17 years; 38\u0026ndash;72% did not use the toilet for defecation and 16\u0026ndash;23% did not use toilets at school at all (\u003cspan additionalcitationids=\"CR14\" citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). The substantial variation in defecation-related toilet use appears to be influenced by gender differences, potentially attributable to variations in toilet facilities. In the study presenting most variation, the boys\u0026rsquo; restrooms had the availability of urinals alongside separate cubicles which may have reduced the use of cubicles, thereby contributing to their relative cleanliness compared to girls\u0026rsquo; facilities (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). Looking at children with rare and complex gastrointestinal diseases, 13% of children with ARM did not use the school toilet at all for both urinating as defecation (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). Toilet avoidance and defecation withholding is significantly correlated with fecal incontinence and constipation. In a healthy Danish population of 19,577 children aged 5 to 19 years, toilet avoidance had an OR for fecal incontinence of 1.25 (1.00-1.59) and for constipation of 1.28 (1.17\u0026ndash;1.40) (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). Although this study was conducted in a healthy population, its findings are relevant for children with HD, as they are likely to face similar challenges given the higher reported prevalence of constipation and incontinence (\u003cspan additionalcitationids=\"CR24\" citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eReported reasons for toilet avoidance included inadequate cleanliness, insufficient space, lack of toilet paper, inability to lock doors, small cubicles, and the absence of designated or specialized toilets. In previous studies, cleanliness has most frequently been reported as one of the primary reasons for avoiding the toilet (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). In ourstudy 17 parents (36%) reported unclean toilet conditions, however, cleanliness was not significantly associated with negative experiences. The differences between previous studies and our findings may be explained by the distinct challenges faced by children with HD compared to healthy children. For children with HD, different problems appear to have a greater impact on toilet use than in the general population. Moreover, our study reflects the parents\u0026rsquo; perspective, which may differ from the experiences reported directly by children. Instead, parents experienced the toilet facilities negatively due to the absence of child-specific toilet-use rules, an association that was found in both the multivariate analysis and the qualitative remarks. Among healthy children, restrictive rules regarding toilet access often leads to withholding behavior, as children prefer not to \u0026lsquo;waste\u0026rsquo; their break time and toilets are typically overcrowded during permitted periods (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Withholding contributes to the development of bladder and bowel dysfunction in otherwise healthy children (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). For children with HD, however, specific toilet-use regulations are essential, as bowel dysfunction represents a common long-term sequela of the condition.\u003c/p\u003e\u003cp\u003eFactors contributing to positive experiences of the toilet facilities were the ability for the child to clean themselves and the availability to have access to a separate toilet for the child with HD. These findings were supported by responses to the open-ended questions. The most frequently reported positive aspect regarding school toilet use concerned the provision of assistance by school staff. To our knowledge, such positive associations have not been documented in previous research. This indicates a need for further investigation into the types of assistance parents require. Positive parental experiences with disease management and daily care have been shown to enhance the quality of life of children with HD (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). We hypothesize that increasing teachers\u0026rsquo; awareness of HD and their ability to provide appropriate support in the school setting could not only improve parental quality of life but also strengthen children\u0026rsquo;s self-esteem and reduce psychological distress, consistent with previous findings that psychological support and peer understanding have such effects (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThis study is the first to specifically explore parental perceptions of school toilet facilities for children with HD, addressing a fundamental and everyday concern that these children, and also their caregivers, encounter, particularly during the challenging transition into the school environment (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). The difficulties parents encounter when enrolling their child in school, potentially related to toilet training requirements, represent an important consideration for Dutch schools in the formulation and implementation of their admission policies and regulations. Further, the experiences of school toilets for children with HD are particularly important, as they influence toilet avoidance. Toilet avoidance reinforces the risk of the long term sequelae of fecal incontinence and constipation that these children encounter. These sequelae can contribute to increased anxiety, school absenteeism, and impaired school functioning, and are therefore of great importance to prevent (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e). Our findings, and the current literature underscore the need for adequate personal and medical assistance at school, as well as targeted education for school staff to improve their confidence and competence in supporting children with HD.\u003c/p\u003e\u003cp\u003eThis study should be interpreted in light of certain limitations. First, due to the narrow focus on this specific population, and the rarity of the disease, the sample size was rather limited. However, the responses to the open-ended questions revealed notable similarities between respondents, and provides therefore a meaningful foundation for understanding the issue. However, the response rate in our study was relatively low compared to other research in this field (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). While we distributed questionnaires via email through the patient organization, other studies have recruited participants directly through schools, which likely facilitated higher response rates and more comprehensive data collection. The low response rate in our study may have introduced bias, as it relies solely on parental perceptions of their child\u0026rsquo;s behavior at school. Parents with negative experiences may have been more inclined to participate, potentially leading to an overrepresentation of unfavorable reports. Second, it should be noted that in this study no formal coding strategy for the qualitative data was applied. Instead, categorizing has been done by separate researchers based on predefined categories.\u003c/p\u003e\u003cp\u003eFuture research could benefit from adopting a comprehensive qualitative approach, such as focus groups or in-depth interviews, to gain deeper insights into the challenges faced by children with HD in school environments and to support the development of targeted interventions. Moreover, including an increased sample comprising healthy children would be valuable (i.g. a case-control study comparing Dutch healthy children with those who have a history of gastrointestinal conditions). Involving different stakeholder, e.g. children, parents, teacher, school board members, would also be beneficial. This could contribute to more tailored approaches for improving school toilet facilities.\u003c/p\u003e\u003cp\u003eIn conclusion, this study provides novel insights into the perception of parents regarding school admission and toilet behavior of children with HD. One in five parents had difficulties with enrolling their child into a primary school. Half of children did not use the school toilet for defecation. Parental experiences were found to be shaped by physical aspects of the toilet environment and the school\u0026rsquo;s policies and support structures. Given the long-term sequelae of HD that include continence problems and psychological distress, schools play a critical role in mitigating toileting-related challenges. These findings highlight the need for targeted interventions, including improved facilities, individualized toileting policies, and education for school staff. Supporting children with HD in school settings requires a collaborative effort between healthcare providers, parents, and educators.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAuthor contribution:\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAS: A.C. ter Schure \u0026ndash; formal analysis, writing original draft, data curation\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSS: S.P. van Streun \u0026ndash; resources, investigation, methodology, data curation, review \u0026amp; editing\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eCB: C.M.C. de Beaufort \u0026ndash; project administration, methodology, review \u0026amp; editing\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eJL: J. van Leeuwen \u0026ndash; review \u0026amp; editing\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eMD: M. van Dorp \u0026ndash; data curation\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSV: S. van Velsen-Knobbout \u0026ndash; resources, review \u0026amp; editing\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eJB: J. Bols \u0026ndash; review \u0026amp; editing\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eMB: M.A. Benninga \u0026ndash; review \u0026amp; editing\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eJD: J.P.M. Derikx \u0026ndash; supervision, review \u0026amp; editing\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eRG: R.R. Gorter \u0026ndash; supervision, review \u0026amp; editing\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eFunding information:\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eNon-financial interests: none.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eConflict of interest statement:\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe authors have no relevant financial or non-financial interests to disclose.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eEthical approval: \u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe 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).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eConsent to participate: informed consent was obtained from all individual participant included in the study.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eLevin MD (2021) Diagnosis and pathophysiology of Hirschsprung\u0026rsquo;s disease\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eMontalva L, Cheng LS, Kapur R, Langer JC, Berrebi D, Kyrklund K et al (2023) Hirschsprung disease. Nat Reviews Disease Primers 9(1):54\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eBest KE, Addor MC, Arriola L, Balku E, Barisic I, Bianchi F et al (2014) Hirschsprung's disease prevalence in Europe: a register based study. 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J Pediatr Surg 52(4):549\u0026ndash;553\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eLundblad B, Hellstr\u0026ouml;m AL, Berg M (2010) Children's experiences of attitudes and rules for going to the toilet in school. Scand J Caring Sci 24(2):219\u0026ndash;223\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eShkalim Zemer V, Cohen HA, Richenberg Y, Gerstein M, Atias I, Gur S et al (2023) Personal hygiene, environmental conditions, and toilet use of children in primary schools: A cohort study. J Pediatr Urol 19(6):721\u0026ndash;727\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eEvans-Barns HM, Hall M, Trajanovska M, Hutson JM, Muscara F, King SK (2024) Psychosocial outcomes of parents of children with Hirschsprung disease beyond early childhood. J Pediatr Surg 59(4):694\u0026ndash;700\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eFilce HG, LaVergne L (2015) Absenteeism, educational plans, and anxiety among children with incontinence and their parents. J Sch Health 85(4):241\u0026ndash;250\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"pediatric-surgery-international","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pesi","sideBox":"Learn more about [Pediatric Surgery International](http://link.springer.com/journal/383)","snPcode":"383","submissionUrl":"https://submission.nature.com/new-submission/383/3","title":"Pediatric Surgery International","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"Hirschsprung Disease, school aged children, toilet avoidance, pediatric continence, defecation withholding","lastPublishedDoi":"10.21203/rs.3.rs-7906386/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7906386/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003ePurpose\u003c/h2\u003e\u003cp\u003eAccess 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.\u003c/p\u003e\u003ch2\u003eMethod\u003c/h2\u003e\u003cp\u003e\u003cb\u003eA\u003c/b\u003e cross-sectional survey was spread among parents of children aged 4\u0026ndash;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.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003e Forty-four parents completed the questionnaire. The median age of the children was 7 years (IQR 5.3\u0026ndash;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.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e\u003cp\u003eToilet 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.\u003c/p\u003e","manuscriptTitle":"Manuscript – School Toilet Facilities Perception of Children with Hirschsprung Disease: A parents perspective","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-11-07 06:35:55","doi":"10.21203/rs.3.rs-7906386/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-11-04T15:59:26+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-11-04T15:53:52+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-11-03T14:31:59+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"127912216661113128426205487489190906688","date":"2025-11-03T14:14:20+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"282340452798172176662625779205819574844","date":"2025-11-01T13:54:30+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"255442006152275673493996666774988770356","date":"2025-10-28T07:34:04+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-10-27T18:06:18+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-10-25T11:24:42+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-10-23T07:47:38+00:00","index":"","fulltext":""},{"type":"submitted","content":"Pediatric Surgery International","date":"2025-10-20T13:47:31+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"pediatric-surgery-international","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pesi","sideBox":"Learn more about [Pediatric Surgery International](http://link.springer.com/journal/383)","snPcode":"383","submissionUrl":"https://submission.nature.com/new-submission/383/3","title":"Pediatric Surgery International","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"0fcb976d-8c9f-4c9e-a803-dba3fa3e1a2d","owner":[],"postedDate":"November 7th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-12-15T16:08:10+00:00","versionOfRecord":{"articleIdentity":"rs-7906386","link":"https://doi.org/10.1007/s00383-025-06263-9","journal":{"identity":"pediatric-surgery-international","isVorOnly":false,"title":"Pediatric Surgery International"},"publishedOn":"2025-12-08 15:58:45","publishedOnDateReadable":"December 8th, 2025"},"versionCreatedAt":"2025-11-07 06:35:55","video":"","vorDoi":"10.1007/s00383-025-06263-9","vorDoiUrl":"https://doi.org/10.1007/s00383-025-06263-9","workflowStages":[]},"version":"v1","identity":"rs-7906386","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7906386","identity":"rs-7906386","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}