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Ek, Ulla
Publications (10 of 35) Show all publications
de Verdier, K., Fernell, E. & Ek, U. (2020). Blindness and Autism: Parents’ Perspectives on Diagnostic Challenges, Support Needs and Support Provision. Journal of autism and developmental disorders, 50(6), 1921-1930
Open this publication in new window or tab >>Blindness and Autism: Parents’ Perspectives on Diagnostic Challenges, Support Needs and Support Provision
2020 (English)In: Journal of autism and developmental disorders, ISSN 0162-3257, E-ISSN 1573-3432, Vol. 50, no 6, p. 1921-1930Article in journal (Refereed) Published
Abstract [en]

Autism spectrum disorder (ASD), with or without intellectual disability (ID), is common in children with congenital blindness. This complex combination of disabilities often involves many challenges for the family. This study explored parents’ experiences of having a child with blindness and ASD (with or without ID), their support needs and experiences of the support provided. Interviews with eight parents, representing six families, were performed. The parents emphasized that assessment and diagnostic procedures must be performed by professionals with expertise in blind children’s development, and ASD. The support was often perceived as fragmented and did not correspond to the families’ needs. The results suggest that national guidelines should be produced, to ensure a more coordinated and tailored support to these families.

Keywords
Autism, Blindness, Children, Assessments, Parents’ experiences, Support
National Category
Educational Sciences
Research subject
Special Education
Identifiers
urn:nbn:se:su:diva-166573 (URN)10.1007/s10803-019-03944-y (DOI)000536416800006 ()
Available from: 2019-03-04 Created: 2019-03-04 Last updated: 2021-11-26Bibliographically approved
Skriapa Manta, A., Olsson, M., Ek, U., Wickström, R. & Teär Fahnehjelm, K. (2019). Optic Disc Coloboma in children - prevalence, clinical characteristics and associated morbidity. Acta Ophthalmologica, 97(5), 478-485
Open this publication in new window or tab >>Optic Disc Coloboma in children - prevalence, clinical characteristics and associated morbidity
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2019 (English)In: Acta Ophthalmologica, ISSN 1755-375X, E-ISSN 1755-3768, Vol. 97, no 5, p. 478-485Article in journal (Refereed) Published
Abstract [en]

Purpose: The aim of the study was to report prevalence, ocular outcome, neurological characteristics, cognitive and behavioural problems in children with optic disc coloboma (ODC).

Methods: This was a population-based, cross-sectional study of 31 children between 2 and 18 years of age diagnosed with ODC. The children were part of a larger cohort of 184 children with congenital optic disc malformations. Clinical ophthalmological examinations, neurological assessments, behavioural and developmental screening were performed.

Results: The prevalence of ODC was 8.9/100 000 children. Of the 31 patients, 18 had unilateral ODC (p = 0.21). The best-corrected visual acuity (BCVA) in the ODC eye ranged from blindness to 1.3 (median 0.3). BCVA was 0.82 in eyes with an isolated ODC (range 0.4-1.3) and 0.15 (range 0-0.5) in eyes with concurrent macular involvement (p < 0.0001). Nystagmus was observed more often in patients with bilateral ODC (9/13 versus 3/17, p = 0.004). Two patients had retinal detachment. Behavioural/psychological screening was performed in 21 patients with severe deficits identified in six cases. Intellectual disability was present in seven patients. Neurological dysfunction was diagnosed in 8/22 cases. All of the above children had already systemic diagnoses before the ODC diagnosis was made.

Conclusions: ODC was the second most common optic disc malformation in this cohort after optic nerve hypoplasia. The children had a wide range of ocular comorbidity. An isolated ODC without macular involvement was not associated with profound vision loss. The ability of screening in the regular child care centres to diagnose extraocular comorbidities was very good and referral to a paediatrician appears redundant in cases of normal development.

Keywords
behaviour, cognition, neurology, optic disc coloboma, prevalence, visual outcome
National Category
Ophthalmology
Identifiers
urn:nbn:se:su:diva-171985 (URN)10.1111/aos.13999 (DOI)000474806400005 ()30549247 (PubMedID)
Available from: 2019-09-02 Created: 2019-09-02 Last updated: 2022-02-26Bibliographically approved
de Verdier, K., Fernell, E. & Ek, U. (2018). Challenges and Successful Pedagogical Strategies: Experiences from Six Swedish Students with Blindness and Autism in Different School Settings. Journal of autism and developmental disorders, 48(2), 520-532
Open this publication in new window or tab >>Challenges and Successful Pedagogical Strategies: Experiences from Six Swedish Students with Blindness and Autism in Different School Settings
2018 (English)In: Journal of autism and developmental disorders, ISSN 0162-3257, E-ISSN 1573-3432, Vol. 48, no 2, p. 520-532Article in journal (Refereed) Published
Abstract [en]

The prevalence of autism in children with blindness is much higher than in the general population. There are many challenges regarding the school situation for children with this complex dual disability. This study explored challenges and successful strategies in school for a sample of six Swedish children with blindness and autism, with and without intellectual disability, through qualitative interviews with students, teachers and parents. All students displayed executive functioning deficits, and the teaching situation entailed several challenges. Our research points to the importance of adopting evidence-based practices for ASD, but adapted according to the students lack of vision. For this to be possible, close collaboration between teachers, parents and specialists in the field of visual impairment and autism is necessary.

Keywords
Autism, Blindness, Children, School, Executive functions, Support, Education
National Category
Educational Sciences
Research subject
Special Education
Identifiers
urn:nbn:se:su:diva-152096 (URN)10.1007/s10803-017-3360-5 (DOI)000424669000017 ()
Available from: 2018-01-24 Created: 2018-01-24 Last updated: 2022-02-28Bibliographically approved
de Verdier, K., Ek, U., Löfgren, S. & Fernell, E. (2018). Children with blindness – major causes, developmental outcomes and implications for habilitation and educational support: a two‐decade, Swedish population‐based study. Acta Ophthalmologica Scandinavica, 96(3), 295-300
Open this publication in new window or tab >>Children with blindness – major causes, developmental outcomes and implications for habilitation and educational support: a two‐decade, Swedish population‐based study
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.

Keywords
autism spectrum disorder, blindness, causes, children, developmental outcomes, intellectual disability
National Category
Educational Sciences
Research subject
Special Education
Identifiers
urn:nbn:se:su:diva-152093 (URN)10.1111/aos.13631 (DOI)000430912700038 ()
Available from: 2018-01-24 Created: 2018-01-24 Last updated: 2022-02-28Bibliographically approved
Dahl, S., Wickström, R., Ek, U. & Fahnehjelm, K. T. (2018). Children with optic nerve hypoplasia face a high risk of neurodevelopmental disorders. Acta Paediatrica, 107(3), 484-489
Open this publication in new window or tab >>Children with optic nerve hypoplasia face a high risk of neurodevelopmental disorders
2018 (English)In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 107, no 3, p. 484-489Article in journal (Refereed) Published
Abstract [en]

Aim: Optic nerve hypoplasia (ONH) is a congenital ocular malformation that has been associated with neurodevelopmental disorders, but the prevalence in unilateral disease and less severe visual impairment is unknown. We studied intellectual disability and autism spectrum disorders (ASDs) in patients with ONH.

Methods: This was a population-based cross-sectional cohort study of 65 patients (33 female) with ONH below 20 years of age, living in Stockholm in December 2009, with data analysed in January 2016. Of these 35 were bilateral and 30 were unilateral. Neurodevelopmental disorders were diagnosed or confirmed by neurological assessments, the Five to Fifteen parent questionnaire and reviewing previous neuropsychological investigations or conducting neuropsychological tests.

Results: Bilateral ONH patients had lower mean full scale intelligence quotient scores than unilateral patients (84.4 and 99.4, respectively, p = 0.049). We assessed intellectual disability in 55 eligible patients, and it was more common in patients with bilateral ONH (18 of 32, 56%) than unilateral ONH (two of 23, 9%, p < 0.001). ASDs were diagnosed in seven of 42 (17%) patients.

Conclusion: Children with bilateral ONH had a high risk of neurodevelopmental disorders, especially intellectual disability. The risk was lower in unilateral ONH, but the levels of neurodevelopmental disorders warrant screening of both groups.

Keywords
Autism, Intellectual disability, Neurodevelopmental disorder, Optic nerve hypoplasia, Visual impairment
National Category
Neurology
Identifiers
urn:nbn:se:su:diva-153603 (URN)10.1111/apa.14163 (DOI)000424884000022 ()29172231 (PubMedID)
Available from: 2018-03-14 Created: 2018-03-14 Last updated: 2022-02-28Bibliographically approved
Teär Fahnehjelm, K., Törnquist, A. L., Olsson, M., Winiarski, J. & Ek, U. (2018). Visual perceptual skills and visual motor integration in children and adolescents after allogeneic hematopoietic stem cell transplantation. Pediatric Transplantation, 22(2), Article ID e13117.
Open this publication in new window or tab >>Visual perceptual skills and visual motor integration in children and adolescents after allogeneic hematopoietic stem cell transplantation
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2018 (English)In: Pediatric Transplantation, ISSN 1397-3142, E-ISSN 1399-3046, Vol. 22, no 2, article id e13117Article in journal (Refereed) Published
Abstract [en]

The aim of the study was to study visual acuity, visual perceptual, and VMI skills in patients after HSCT in childhood. Tests of visual perceptual skills, VMI, and visual acuity were performed in 102 children/adolescents (age range 4.3-20.9years). Mean time from HSCT to testing was 6.0years (0.9-17.5years). Visual acuity was median 1.0 decimal (range 0.16-1.6). Visual perceptual skills (memory, form constancy, visual sequential memory) and VMI were low compared to age-equivalent normative data with, respectively, 36%, 45%, 60%, and 46% of all patients performing below the 25 percentile. All patients performed significantly lower than the 50 percentile in the reference material in visual sequential memory, P<.001 (boys P<.001 and girls P<.05). All patients also performed significantly lower than the 50 percentile in VMI (P<.01) (boys P<.05). Pretransplant conditioning regimen did not affect outcome if the results were corrected for age at HSCT. Visual perceptual skill problems and VMI problems frequently occur in patients after HSCT in childhood. Age at HSCT and original diagnosis influence the outcome. Neuropsychological assessment including visual perception is recommended in children after HSCT.

Keywords
adverse effects, hematopoietic stem cell transplantation
National Category
Pediatrics
Identifiers
urn:nbn:se:su:diva-154835 (URN)10.1111/petr.13117 (DOI)000425596000016 ()
Available from: 2018-04-10 Created: 2018-04-10 Last updated: 2022-02-26Bibliographically approved
Ahlström, M., Berthén, D. & Ek, U. (2015). Behovs- och kunskapsinventering av bedömningsstöd i särskolan. Stockholm: Skolverket
Open this publication in new window or tab >>Behovs- och kunskapsinventering av bedömningsstöd i särskolan
2015 (Swedish)Report (Other academic)
Place, publisher, year, edition, pages
Stockholm: Skolverket, 2015. p. 46
National Category
Educational Sciences
Research subject
Special Education
Identifiers
urn:nbn:se:su:diva-215384 (URN)
Available from: 2023-03-12 Created: 2023-03-12 Last updated: 2023-03-27Bibliographically approved
Ceynowa, D. J., Wickström, R., Olsson, M., Ek, U., Eriksson, U., Kristoffersen Wiberg, M. & Tear Fahnehjelm, K. (2015). Morning Glory Disc Anomaly in childhood - a population-based study. Acta Ophthalmologica, 93(7), 626-634
Open this publication in new window or tab >>Morning Glory Disc Anomaly in childhood - a population-based study
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2015 (English)In: Acta Ophthalmologica, ISSN 1755-375X, E-ISSN 1755-3768, Vol. 93, no 7, p. 626-634Article in journal (Refereed) Published
Abstract [en]

Purpose: To report prevalence, ocular characteristics and coexisting neurological, behavioural, somatic and neuroradiological abnormalities in children and adolescents with morning glory disc anomaly (MGDA).

Methods: In a cross-sectional population-based study, 12 patients with MGDA, aged 2-20years, were identified. All 12 agreed to ophthalmological assessments including visual functions, refraction, fundus photography, optical coherence tomography (OCT) and ocular motor score (OMS). Neurological examinations and behavioural/developmental screening were carried out. Data from previous or new neuroradiological investigations were collected.

Results: The prevalence of MGDA was 2.6/100000. MGDA was unilateral in 11/12 patients with a best-corrected visual acuity (BCVA) in the MGDA eye ranging from hand motion to 0.65 (median 0.06). Severe microphthalmus prevented unilaterality to be determined in one adolescent. All patients had a binocular BCVA of 0.5. OMS showed abnormalities in pupil response, vestibulo-ocular reflex, stereo visual acuity, strabismus and convergence. OCT revealed peripapillary or macular oedema in 5/8 patients and foveal aplasia in 3/8 patients. Three patients had extensive capillary hemangiomas, of which one had PHACES syndrome and one had additional cerebrovascular anomalies and corpus callosum agenesis. Neuroradiology showed craniovascular anomalies in two patients. Neurology was mostly normal. Behavioural/developmental screening showed attention deficit hyperactivity disorder in one patient.

Conclusions: The prevalence data, previously not reported, of morning glory disc anomaly was 2.6/100 000. Coexisting retinal peripapillary or macular oedema was common, as were cerebral abnormalities and/or cutaneous vascular malformations. The associated findings may not be discovered through routine ophthalmological examination why OCT and neuroimaging are called for.

Keywords
malformation, morning glory, optic disc, nerve, retina
National Category
Ophthalmology Neurology
Identifiers
urn:nbn:se:su:diva-123505 (URN)10.1111/aos.12778 (DOI)000363890500027 ()
Available from: 2015-12-01 Created: 2015-11-27 Last updated: 2022-02-23Bibliographically approved
de Verdier, K. & Ek, U. (2014). A Longitudinal Study of Reading Development, Academic Achievement, and Support in Swedish Inclusive Education for Students with Blindness or Severe Visual Impairment. Journal of Visual Impairment & Blindness, 108(6), 461-472
Open this publication in new window or tab >>A Longitudinal Study of Reading Development, Academic Achievement, and Support in Swedish Inclusive Education for Students with Blindness or Severe Visual Impairment
2014 (English)In: Journal of Visual Impairment & Blindness, ISSN 0145-482X, E-ISSN 1559-1476, Vol. 108, no 6, p. 461-472Article in journal (Refereed) Published
Abstract [en]

Introduction: This longitudinal study examined reading development, academic achievement and support in school for six students with blindness or severe visual impairments in inclusive educational settings. Methods: School grades and results from reading observations and decoding skills tests were collected, and interviews were conducted with students, parents, and teachers. Results: The results show that the outcome of these students' schooling varied a great deal regarding both levels of academic achievement and reading development, as well as in the support needed and received. Students with additional disabilities had less positive experiences in school, and the parents of these students were more critical of the support provided by the schools. Discussion: Important aspects of the outcomes concerned the attitudes held by school management and teachers and the competence of teachers. In some cases, teachers lacked sufficient knowledge about braille and teaching methods for students with visual impairments. Implications for practitioners: The findings imply that the support system for students with visual impairments in Sweden needs to be more systematized in order to secure equal educational opportunities for all students.

National Category
Educational Sciences
Research subject
Special Education
Identifiers
urn:nbn:se:su:diva-114764 (URN)10.1177/0145482X1410800603 (DOI)000349189900003 ()
Available from: 2015-03-10 Created: 2015-03-09 Last updated: 2022-02-23Bibliographically approved
Tear Fahnehjelm, K., Dahl, S., Martin, L. & Ek, U. (2014). Optic nerve hypoplasia in children and adolescents; prevalence, ocular characteristics and behavioural problems. Acta Ophthalmologica, 92(6), 563-570
Open this publication in new window or tab >>Optic nerve hypoplasia in children and adolescents; prevalence, ocular characteristics and behavioural problems
2014 (English)In: Acta Ophthalmologica, ISSN 1755-375X, E-ISSN 1755-3768, Vol. 92, no 6, p. 563-570Article in journal (Refereed) Published
Abstract [en]

Purpose: To report prevalence, ocular characteristics and coexisting behavioural problems in children and adolescents with optic nerve hypoplasia (ONH), which is a common cause of visual impairment in children in western countries, often associated with neurological or endocrinological problems and where autism has been reported in severe cases with blindness. Methods: This is a population-based cross-sectional study of patients <20 years of age who had been diagnosed with NH and lived in the county of Stockholm in December 2009. Ophthalmological assessments including fundus photographs with optic disc analyses were made. A questionnaire was used to screen for behaviour and development. Results: The prevalence of ONH in all living children <18 years of age in Stockholm was 17.3/100 000 with a prevalence of visual impairment (<0.3) of 3.9/100 000. In total, 66 patients, median age 9.3 years (0.6-19.4), 36 with bilateral and 30 with unilateral ONH, were included in the current study; 53 were re-examined clinically, group A, and 13 agreed to retrospective analyses of existing medical records, group B. Analyses of the optic discs were made in fundus photographs from 53 patients comparing a semi-automated (Retinal Size Tool) and a manual method (Zeki). There was a strong curvilinear correlation (r(S) = 0.91 p < 0.0001 for both eyes). Behavioural problems were more common (p < 0.05) in bilateral ONII. Conclusion: Optic nerve hypoplasia is a common ocular malformation with a prevalence of 17.3/100 000 children and adolescents <18 years of age in Stockholm. Unilateral ONH seems as common as bilateral.

Keywords
behaviour disc, area optic nerve hypoplasia, prevalence
National Category
Medical and Health Sciences Pedagogy
Identifiers
urn:nbn:se:su:diva-101314 (URN)10.1111/aos.12270 (DOI)000340585800033 ()
Available from: 2014-03-04 Created: 2014-03-04 Last updated: 2022-02-24Bibliographically approved
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