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Children with blindness – major causes, developmental outcomes and implications for habilitation and educational support: a two‐decade, Swedish population‐based study
Stockholm University, Faculty of Social Sciences, Department of Special Education. Swedish National Agency for Special Needs Education and Schools, Sweden.ORCID iD: 0000-0001-8576-0153
Stockholm University, Faculty of Social Sciences, Department of Special Education.
2018 (English)In: Acta Ophthalmologica Scandinavica, ISSN 1395-3907, E-ISSN 1600-0420, Vol. 96, no 3, p. 295-300Article in journal (Refereed) Published
Abstract [en]

Purpose

The aim was to describe the population of children with congenital or early infancy blindness in Sweden, with regard to causes of blindness and prevalence of neurodevelopmental impairments.

Methods

Medical, psychological and pedagogical records of Swedish children with congenital or early infancy blindness (total blindness or light perception at the most) born in 1988–2008 were analysed regarding year of birth, gender, cause of blindness, gestational age, associated neurological disorders/syndromes, associated neurodevelopmental impairments, cognitive level and type of school placement.

Results

A total of 150 individuals, 80 girls and 70 boys, were identified, corresponding to a prevalence of 7/100 000. Five causes of blindness dominated, constituting 76% of all represented aetiologies: retinopathy of prematurity (ROP), optic nerve hypoplasia (ONH), Leber congenital amaurosis (LCA), optic nerve atrophy (ONA) and microphthalmia/anophthalmia. Nearly three of four children in the study population had at least one additional disability besides blindness; the most common being intellectual disability (ID) and autism spectrum disorder (ASD). More than half of the population had more than one additional disability. Autism spectrum disorder (ASD) was most common in children with ONH, ROP, LCA and microphthalmia/anophthalmia.

Conclusion

In children born within the last decades, isolated blindness is uncommon and the rate of multidisabilities is high. Autism spectrum disorder (ASD) seems to be more strongly associated with specific aetiological subgroups. Further development of the support to families and schools should be based on knowledge about the considerable heterogeneity of the population of children with blindness, and the common occurrence of coexisting neurodevelopmental disorders, especially ID and ASD.

Place, publisher, year, edition, pages
2018. Vol. 96, no 3, p. 295-300
Keywords [en]
autism spectrum disorder, blindness, causes, children, developmental outcomes, intellectual disability
National Category
Educational Sciences
Research subject
Special Education
Identifiers
URN: urn:nbn:se:su:diva-152093DOI: 10.1111/aos.13631ISI: 000430912700038OAI: oai:DiVA.org:su-152093DiVA, id: diva2:1177220
Available from: 2018-01-24 Created: 2018-01-24 Last updated: 2018-05-28Bibliographically approved
In thesis
1. Children with blindness: Developmental aspects, comorbidity and implications for education and support
Open this publication in new window or tab >>Children with blindness: Developmental aspects, comorbidity and implications for education and support
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this research is to deepen the knowledge about developmental aspects, comorbidity and implications for education and support provision, regarding children with blindness. Special focus is directed towards children with blindness and autism spectrum disorder (ASD).

The research comprises three different projects, reported in five papers. The studies adopt different designs; one is record-based and explores clinical characteristics and etiologies of Swedish children with blindness, one has a longitudinal design with collection of qualitative as well as quantitative data, and explores the school outcome for braille reading students in inclusive education; and one has a mainly qualitative design and explores diagnostic challenges and support to children with blindness and ASD and their families. Both children’s, parents’ and teachers’ perspectives are included in the research.

The results show that children with blindness are very rare; in average seven blind children per year are born in Sweden. Moreover, isolated blindness is unusual in children, and the rate of multidisability is high. The comorbidity with ASD and intellectual disability (ID) is high, especially in certain etiological groups. Competence about children with blindness is necessary in assessment and diagnostic procedures, to differentiate between effects of blindness and possible additional disabilities. The results also highlight the fact that the support provided to children with blindness, with and without additional disabilities, is perceived as insufficient and does not correspond to the complex needs of the population. Teachers need more competence in braille and teaching methods, especially regarding blindness and additional disabilities such as ASD. Parents ask for a more coordinated support with a life-long scope, provided by professionals with expertise in children with blindness.

The opinions about inclusive education differ in the studies; both students, parents and teachers point to advantages as well as challenges. However, for the schools to be able provide equal educational opportunities for children with blindness in the inclusive setting, the support must be further developed and the national responsibility for unusual disability groups must be extended.

 

Place, publisher, year, edition, pages
Stockholm: Department of Special Education, Stockholm University, 2018. p. 115
Keywords
Blindness, comorbidity, autism, intellectual disability, inclusive education, support, braille, children, parents, teachers
National Category
Educational Sciences
Research subject
Special Education
Identifiers
urn:nbn:se:su:diva-156384 (URN)978-91-7797-328-7 (ISBN)978-91-7797-329-4 (ISBN)
Public defence
2018-08-31, Sal 108, Frescati Hagväg 9B, Stockholm, 13:00 (Swedish)
Opponent
Supervisors
Note

At the time of the doctoral defense, the following paper was unpublished and had a status as follows: Paper 5: Manuscript.

Available from: 2018-06-07 Created: 2018-05-15 Last updated: 2018-06-04Bibliographically approved

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