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Schooling experiences in children with long-gap esophageal atresia compared with children with esophageal atresia and primary anastomosis: a Swedish study

BACKGROUND: Children with long-gap esophageal atresia (LGEA) risk living with aerodigestive morbidity and mental health difficulties. No previous study has investigated their experiences of schooling, despite the importance of schools in children’s development, learning and social relationships. We...

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Autores principales: Dellenmark-Blom, M., Reilly, C., Öst, E., Örnö Ax, S., Svensson, J. F., Kassa, A.-M., Jönsson, L., Abrahamsson, K., Gatzinsky, V., Tollne, AM., Omling, E., Stenström, P., Engstrand Lilja, H.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10408199/
https://www.ncbi.nlm.nih.gov/pubmed/37550744
http://dx.doi.org/10.1186/s13023-023-02846-8
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author Dellenmark-Blom, M.
Reilly, C.
Öst, E.
Örnö Ax, S.
Svensson, J. F.
Kassa, A.-M.
Jönsson, L.
Abrahamsson, K.
Gatzinsky, V.
Tollne, AM.
Omling, E.
Stenström, P.
Engstrand Lilja, H.
author_facet Dellenmark-Blom, M.
Reilly, C.
Öst, E.
Örnö Ax, S.
Svensson, J. F.
Kassa, A.-M.
Jönsson, L.
Abrahamsson, K.
Gatzinsky, V.
Tollne, AM.
Omling, E.
Stenström, P.
Engstrand Lilja, H.
author_sort Dellenmark-Blom, M.
collection PubMed
description BACKGROUND: Children with long-gap esophageal atresia (LGEA) risk living with aerodigestive morbidity and mental health difficulties. No previous study has investigated their experiences of schooling, despite the importance of schools in children’s development, learning and social relationships. We aimed to describe experiences of schooling in children with LGEA in Sweden in comparison with children with EA who had primary anastomosis. METHOD: Children with LGEA aged 3–17 were recruited nationwide in Sweden. One parent completed a survey on their child’s school-based supports (according to definitions from the Swedish National Agency for Education), school absence, school satisfaction, school functioning (PedsQL 4.0), mental health (Strength and Difficulties Questionnaire) and current symptomatology. School data were compared between 26 children with LGEA to that from 95 children with EA who had PA, a hypothesized milder affected group. Mental health level was determined using validated norms; abnormal ≥ 90 percentile. Data were analyzed using descriptives, correlation and Mann–Whitney-U test. Significance level was p < 0.05. RESULTS: Formal school-based support was reported in 17 (65.4%) children with LGEA and concerned support with nutritional intake (60%), education (50%) and medical/special health needs (35%). The prevalence of school-based support was significantly higher compared to children with PA overall (36.8%, p = 0.013) and regarding nutritional intake support (20%, p < 0.001). In children with LGEA, school-based support was related to low birth weight (p = 0.036), young child age (p = 0.014), height ≤ −2SD for age/sex (p = 0.024) and an increased number of aerodigestive symptoms (p < 0.05). All children with LGEA who had abnormal mental health scores had school-based support, except for one child. Nine children with LGEA (36%) had school absence ≥ 1times/month the past year, more frequently because of colds/airway infections (p = 0.045) and GI-specific problems compared to PA (p = 0.003). School functioning scores were not significantly different from children with PA (p = 0.34) but correlated negatively with school-based support (< 0.001) and school absence (p = 0.002). One parent out of 26 reported their child’s school satisfaction as “not good”. CONCLUSIONS: Children with LGEA commonly receive school-based support, reflecting multifaceted daily needs and disease severity. School absence is frequent and related to poorer school functioning. Future research focusing on academic achievement in children with EA is needed. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13023-023-02846-8.
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spelling pubmed-104081992023-08-09 Schooling experiences in children with long-gap esophageal atresia compared with children with esophageal atresia and primary anastomosis: a Swedish study Dellenmark-Blom, M. Reilly, C. Öst, E. Örnö Ax, S. Svensson, J. F. Kassa, A.-M. Jönsson, L. Abrahamsson, K. Gatzinsky, V. Tollne, AM. Omling, E. Stenström, P. Engstrand Lilja, H. Orphanet J Rare Dis Research BACKGROUND: Children with long-gap esophageal atresia (LGEA) risk living with aerodigestive morbidity and mental health difficulties. No previous study has investigated their experiences of schooling, despite the importance of schools in children’s development, learning and social relationships. We aimed to describe experiences of schooling in children with LGEA in Sweden in comparison with children with EA who had primary anastomosis. METHOD: Children with LGEA aged 3–17 were recruited nationwide in Sweden. One parent completed a survey on their child’s school-based supports (according to definitions from the Swedish National Agency for Education), school absence, school satisfaction, school functioning (PedsQL 4.0), mental health (Strength and Difficulties Questionnaire) and current symptomatology. School data were compared between 26 children with LGEA to that from 95 children with EA who had PA, a hypothesized milder affected group. Mental health level was determined using validated norms; abnormal ≥ 90 percentile. Data were analyzed using descriptives, correlation and Mann–Whitney-U test. Significance level was p < 0.05. RESULTS: Formal school-based support was reported in 17 (65.4%) children with LGEA and concerned support with nutritional intake (60%), education (50%) and medical/special health needs (35%). The prevalence of school-based support was significantly higher compared to children with PA overall (36.8%, p = 0.013) and regarding nutritional intake support (20%, p < 0.001). In children with LGEA, school-based support was related to low birth weight (p = 0.036), young child age (p = 0.014), height ≤ −2SD for age/sex (p = 0.024) and an increased number of aerodigestive symptoms (p < 0.05). All children with LGEA who had abnormal mental health scores had school-based support, except for one child. Nine children with LGEA (36%) had school absence ≥ 1times/month the past year, more frequently because of colds/airway infections (p = 0.045) and GI-specific problems compared to PA (p = 0.003). School functioning scores were not significantly different from children with PA (p = 0.34) but correlated negatively with school-based support (< 0.001) and school absence (p = 0.002). One parent out of 26 reported their child’s school satisfaction as “not good”. CONCLUSIONS: Children with LGEA commonly receive school-based support, reflecting multifaceted daily needs and disease severity. School absence is frequent and related to poorer school functioning. Future research focusing on academic achievement in children with EA is needed. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13023-023-02846-8. BioMed Central 2023-08-07 /pmc/articles/PMC10408199/ /pubmed/37550744 http://dx.doi.org/10.1186/s13023-023-02846-8 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Dellenmark-Blom, M.
Reilly, C.
Öst, E.
Örnö Ax, S.
Svensson, J. F.
Kassa, A.-M.
Jönsson, L.
Abrahamsson, K.
Gatzinsky, V.
Tollne, AM.
Omling, E.
Stenström, P.
Engstrand Lilja, H.
Schooling experiences in children with long-gap esophageal atresia compared with children with esophageal atresia and primary anastomosis: a Swedish study
title Schooling experiences in children with long-gap esophageal atresia compared with children with esophageal atresia and primary anastomosis: a Swedish study
title_full Schooling experiences in children with long-gap esophageal atresia compared with children with esophageal atresia and primary anastomosis: a Swedish study
title_fullStr Schooling experiences in children with long-gap esophageal atresia compared with children with esophageal atresia and primary anastomosis: a Swedish study
title_full_unstemmed Schooling experiences in children with long-gap esophageal atresia compared with children with esophageal atresia and primary anastomosis: a Swedish study
title_short Schooling experiences in children with long-gap esophageal atresia compared with children with esophageal atresia and primary anastomosis: a Swedish study
title_sort schooling experiences in children with long-gap esophageal atresia compared with children with esophageal atresia and primary anastomosis: a swedish study
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10408199/
https://www.ncbi.nlm.nih.gov/pubmed/37550744
http://dx.doi.org/10.1186/s13023-023-02846-8
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