Schooling experiences in children with long-gap esophageal atresia compared with children with esophageal atresia and primary anastomosis : a Swedish study
(2023) In Orphanet Journal of Rare Diseases 18(1).- Abstract
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... (More)
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.
(Less)
- 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.
LU
; Stenström, P.
LU
and Engstrand Lilja, H.
(Less) - organization
- publishing date
- 2023-12
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- Esophageal atresia, Rare disease, School support, Schooling experiences, Special education mental health
- in
- Orphanet Journal of Rare Diseases
- volume
- 18
- issue
- 1
- article number
- 233
- publisher
- BioMed Central (BMC)
- external identifiers
-
- pmid:37550744
- scopus:85166785596
- ISSN
- 1750-1172
- DOI
- 10.1186/s13023-023-02846-8
- language
- English
- LU publication?
- yes
- id
- 679148e7-822f-4a18-b245-b0f683b326a0
- date added to LUP
- 2023-10-19 16:03:32
- date last changed
- 2024-04-19 02:38:44
@article{679148e7-822f-4a18-b245-b0f683b326a0,
abstract = {{<p>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.</p>}},
author = {{Dellenmark-Blom, M. and Reilly, C. and Öst, E. and Örnö Ax, S. and Svensson, J. F. and Kassa, A. M. and Jönsson, L. and Abrahamsson, K. and Gatzinsky, V. and Tollne, Am and Omling, E. and Stenström, P. and Engstrand Lilja, H.}},
issn = {{1750-1172}},
keywords = {{Esophageal atresia; Rare disease; School support; Schooling experiences; Special education mental health}},
language = {{eng}},
number = {{1}},
publisher = {{BioMed Central (BMC)}},
series = {{Orphanet Journal of Rare Diseases}},
title = {{Schooling experiences in children with long-gap esophageal atresia compared with children with esophageal atresia and primary anastomosis : a Swedish study}},
url = {{http://dx.doi.org/10.1186/s13023-023-02846-8}},
doi = {{10.1186/s13023-023-02846-8}},
volume = {{18}},
year = {{2023}},
}