Children with an Anorectal Malformation Going to Primary School: The Parent’s Perspective
Background: Continence problems occur often in children with anorectal malformations (ARM). The aim of this study was to evaluate parental experiences with toilet facilities at Dutch primary schools and their experience with how schools deal with ARM children. Methods: This survey was developed in c...
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| Format: | Article |
| Language: | English |
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MDPI AG
2023-05-01
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| Series: | Children |
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| Online Access: | https://www.mdpi.com/2227-9067/10/6/924 |
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| author | Cunera M. C. de Beaufort Joep P. M. Derikx Marijke E. Voskeuil Josef Atay Caroline F. Kuijper Sjoerd A. de Beer Justin R. de Jong Arnout de Bos Svenja Vennink L. W. Ernest van Heurn Ramon R. Gorter |
| author_facet | Cunera M. C. de Beaufort Joep P. M. Derikx Marijke E. Voskeuil Josef Atay Caroline F. Kuijper Sjoerd A. de Beer Justin R. de Jong Arnout de Bos Svenja Vennink L. W. Ernest van Heurn Ramon R. Gorter |
| author_sort | Cunera M. C. de Beaufort |
| collection | DOAJ |
| description | Background: Continence problems occur often in children with anorectal malformations (ARM). The aim of this study was to evaluate parental experiences with toilet facilities at Dutch primary schools and their experience with how schools deal with ARM children. Methods: This survey was developed in collaboration with the national patient advocacy group (PAG). Recruitment for participation was conducted by the PAG (email listing and social media) and one expertise center for ARM. Participants were parents of school-attending ARM children aged 3 to 12 years. Results: Sixty-one participants (31.9%) responded to the survey. The median age of the children was 7.0 years (IQR 5.0–9.0). Schools were often located in a village (63.9%) and encompassed 100–500 children (77.0%). In total, 14 parents (23.0%) experienced difficulties in finding a primary school. Experiences with the school were described as solely positive (37.7%), solely negative (9.8%), positive and negative (34.4%), and neither positive nor negative (16.4%). Regarding school toilet facilities, 65.6% of the toilets were reported clean and 78.7% were easily accessible. Conclusions: About 25% of parents reported difficulties in enrolling their children into primary school, and 45% reported negative experiences. This highlights the need for improved guidance and the optimization of education in schools when dealing with ARM children. |
| first_indexed | 2024-03-11T02:37:27Z |
| format | Article |
| id | doaj.art-02783ae71d63412181b0e90727b15b8c |
| institution | Directory Open Access Journal |
| issn | 2227-9067 |
| language | English |
| last_indexed | 2024-03-11T02:37:27Z |
| publishDate | 2023-05-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Children |
| spelling | doaj.art-02783ae71d63412181b0e90727b15b8c2023-11-18T09:49:07ZengMDPI AGChildren2227-90672023-05-0110692410.3390/children10060924Children with an Anorectal Malformation Going to Primary School: The Parent’s PerspectiveCunera M. C. de Beaufort0Joep P. M. Derikx1Marijke E. Voskeuil2Josef Atay3Caroline F. Kuijper4Sjoerd A. de Beer5Justin R. de Jong6Arnout de Bos7Svenja Vennink8L. W. Ernest van Heurn9Ramon R. Gorter10Department of Pediatric Surgery, Emma Children’s Hospital Amsterdam UMC, Location University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The NetherlandsDepartment of Pediatric Surgery, Emma Children’s Hospital Amsterdam UMC, Location University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The NetherlandsDepartment of Pediatric Surgery, Emma Children’s Hospital Amsterdam UMC, Location University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The NetherlandsDepartment of Pediatric Surgery, Emma Children’s Hospital Amsterdam UMC, Location University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The NetherlandsDepartment of Pediatric Urology, Emma Children’s Hospital Amsterdam UMC, Location University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The NetherlandsDepartment of Pediatric Surgery, Emma Children’s Hospital Amsterdam UMC, Location University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The NetherlandsDepartment of Pediatric Surgery, Emma Children’s Hospital Amsterdam UMC, Location University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The NetherlandsVereniging Anusatresie, 1273 ST Huizen, The NetherlandsVereniging Anusatresie, 1273 ST Huizen, The NetherlandsDepartment of Pediatric Surgery, Emma Children’s Hospital Amsterdam UMC, Location University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The NetherlandsDepartment of Pediatric Surgery, Emma Children’s Hospital Amsterdam UMC, Location University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The NetherlandsBackground: Continence problems occur often in children with anorectal malformations (ARM). The aim of this study was to evaluate parental experiences with toilet facilities at Dutch primary schools and their experience with how schools deal with ARM children. Methods: This survey was developed in collaboration with the national patient advocacy group (PAG). Recruitment for participation was conducted by the PAG (email listing and social media) and one expertise center for ARM. Participants were parents of school-attending ARM children aged 3 to 12 years. Results: Sixty-one participants (31.9%) responded to the survey. The median age of the children was 7.0 years (IQR 5.0–9.0). Schools were often located in a village (63.9%) and encompassed 100–500 children (77.0%). In total, 14 parents (23.0%) experienced difficulties in finding a primary school. Experiences with the school were described as solely positive (37.7%), solely negative (9.8%), positive and negative (34.4%), and neither positive nor negative (16.4%). Regarding school toilet facilities, 65.6% of the toilets were reported clean and 78.7% were easily accessible. Conclusions: About 25% of parents reported difficulties in enrolling their children into primary school, and 45% reported negative experiences. This highlights the need for improved guidance and the optimization of education in schools when dealing with ARM children.https://www.mdpi.com/2227-9067/10/6/924anorectal malformationsfecal continenceprimary schoolparental experiences |
| spellingShingle | Cunera M. C. de Beaufort Joep P. M. Derikx Marijke E. Voskeuil Josef Atay Caroline F. Kuijper Sjoerd A. de Beer Justin R. de Jong Arnout de Bos Svenja Vennink L. W. Ernest van Heurn Ramon R. Gorter Children with an Anorectal Malformation Going to Primary School: The Parent’s Perspective Children anorectal malformations fecal continence primary school parental experiences |
| title | Children with an Anorectal Malformation Going to Primary School: The Parent’s Perspective |
| title_full | Children with an Anorectal Malformation Going to Primary School: The Parent’s Perspective |
| title_fullStr | Children with an Anorectal Malformation Going to Primary School: The Parent’s Perspective |
| title_full_unstemmed | Children with an Anorectal Malformation Going to Primary School: The Parent’s Perspective |
| title_short | Children with an Anorectal Malformation Going to Primary School: The Parent’s Perspective |
| title_sort | children with an anorectal malformation going to primary school the parent s perspective |
| topic | anorectal malformations fecal continence primary school parental experiences |
| url | https://www.mdpi.com/2227-9067/10/6/924 |
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