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Article ; Online: Executive Functions in a Population of Individuals with CHARGE Syndrome: Findings from Performance-Based and Rating Scale Measures According to a 3-Factor Model.

Skei, Lynn / von Tetzchner, Stephen / Hartshorne, Timothy / Skei, Sigmund / Landrø, Nils Inge

2024 Volume 26, Issue 6-7, Page(s) 349–359

Abstract: Purpose: To identify possible predictors of executive functions of individuals with CHARGE syndrome, as these will be important targets for interventions.: Methods: A population-based cross-sectional study investigating the executive functions of a ... ...

Abstract	Purpose: To identify possible predictors of executive functions of individuals with CHARGE syndrome, as these will be important targets for interventions. Methods: A population-based cross-sectional study investigating the executive functions of a representative sample of 35 Norwegians with CHARGE syndrome divided into two subgroups to handle their inherent heterogeneity. Both performance-based measures and rating scale findings were included and organized according to the 3-factor model of Miyake and colleagues. Results: Both measures showed comprehensive executive dysfunctions within the population, which were largely unrelated to deafblindness. Working memory stood out as a strength within the executive domain and the only factor presenting results within the normal range. Verbal working memory was a particular cognitive resource for participants with deafblindness, and, unlike those without deafblindness, unrelated to sensorimotor functions. Conclusions: Individuals with CHARGE syndrome appear to be at risk for underdeveloped executive functions due to neurogenetic and environmental factors. Performance-based measures and ratings from caregivers gave unique and complementary knowledge and implied the need of both when investigating executive functioning in CHARGE syndrome. Participants with deafblindness presented strong verbal working memory despite their auditory impairments, indicating effective compensatory mechanisms The results also indicated an untapped cognitive potential in both subgroups. Because of their relatively advanced working memory significantly correlating with global cognition, the environment should assume equal learning potential of individuals with CHARGE syndrome regardless of their degree of sensory impairments.
MeSH term(s)	Humans ; Executive Function ; CHARGE Syndrome ; Cross-Sectional Studies ; Deaf-Blind Disorders ; Norway ; Cognition ; Memory, Short-Term ; Neuropsychological Tests
Language	English
Publishing date	2024-01-06
Publishing country	England
Document type	Journal Article
ZDB-ID	2280007-4
ISSN	1751-8431 ; 1751-8423
ISSN (online)	1751-8431
ISSN	1751-8423
DOI	10.1080/17518423.2023.2242942
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Article ; Online: Measuring impact of augmentative and alternative communication interventions: adapting the family impact of assistive technology scale for augmentative and alternative communication (FIATS-AAC-No) for use in Norway.

Fjeldvang, Ragnhild Therese / Nordaas, Marit Giske / von Tetzchner, Stephen / Stadskleiv, Kristine

Augmentative and alternative communication (Baltimore, Md. : 1985)

2023 Volume 39, Issue 3, Page(s) 170–180

Abstract: Individuals who require augmentative and alternative communication (AAC) comprise a heterogeneous group, but all need follow-up to assure the appropriateness of implemented interventions. To enable this, outcome measures such as the Family Impact of ... ...

Abstract	Individuals who require augmentative and alternative communication (AAC) comprise a heterogeneous group, but all need follow-up to assure the appropriateness of implemented interventions. To enable this, outcome measures such as the Family Impact of Assistive Technology Scale for Augmentative and Alternative Communication (FIATS-AAC) may be used. However, instrument must be adapted to the language and culture in which they are to be used. The aim of the study was to therefore to explore the suitability of the Norwegian short-form version (FIATS-AAC-No) by investigating the reliability, validity, and perceived clinical usefulness. The study utilized a mixed-method design, including an online survey and two small group interviews. In total, 47 parents responded to the online survey. The online survey was comprised of three questionnaires, where FIATS-AAC-No was one of the questionnaires. Two group interviews, with two parents and two clinicians, were conducted. Findings show satisfactorily reliability, construct validity and content validity. The interviews revealed a need for specification of key concepts, that there are challenges involved in being parents of a child needing AAC, and that completing questionnaires was perceived as stressful by many parents. The clinicians viewed the FIATS-AAC-No as a potentially useful clinical tool and expressed that it brought to attention the need for follow-up parents have.
MeSH term(s)	Child ; Humans ; Communication Aids for Disabled ; Reproducibility of Results ; Communication Disorders ; Self-Help Devices ; Language ; Norway ; Communication
Language	English
Publishing date	2023-03-20
Publishing country	England
Document type	Journal Article
ZDB-ID	2068579-8
ISSN	1477-3848 ; 0743-4618
ISSN (online)	1477-3848
ISSN	0743-4618
DOI	10.1080/07434618.2023.2170276
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Article ; Online: Introduction to the special issue on aided language processes, development, and use: an international perspective.

von Tetzchner, Stephen

Augmentative and alternative communication (Baltimore, Md. : 1985)

2018 Volume 34, Issue 1, Page(s) 1–15

Abstract: This introduction to the Special Issue discusses current theoretical approaches to language development and their application to aided language development. It also discusses some conceptual issues and aspects of aided language development that are ... ...

Abstract	This introduction to the Special Issue discusses current theoretical approaches to language development and their application to aided language development. It also discusses some conceptual issues and aspects of aided language development that are relevant for the articles, and gives a short overview of the articles.
MeSH term(s)	Communication Aids for Disabled ; Humans ; Internationality ; Language Development
Language	English
Publishing date	2018-01-22
Publishing country	England
Document type	Introductory Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2068579-8
ISSN	1477-3848 ; 0743-4618
ISSN (online)	1477-3848
ISSN	0743-4618
DOI	10.1080/07434618.2017.1422020
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Article ; Online: The assessment and diagnosis of intellectual disability when development is atypical. A Norwegian population study of individuals with CHARGE syndrome.

Skei, Lynn / Skei, Sigmund / von Tetzchner, Stephen / Hartshorne, Timothy / Landrø, Nils Inge

The International journal of neuroscience

2023 , Page(s) 1–14

Abstract: Aim: This paper aimed to answer how psychometric methods based on neurotypical populations can serve as valid instruments in the assessment and diagnosis of intellectual disability in individuals with atypical development. The genetic, structural, and ... ...

Abstract	Aim: This paper aimed to answer how psychometric methods based on neurotypical populations can serve as valid instruments in the assessment and diagnosis of intellectual disability in individuals with atypical development. The genetic, structural, and functional features of CHARGE make it uniquely suited to address this question. Method: A Norwegian population of individuals with CHARGE ( Result: Significant differences emerged between the participants and the norm samples. Global cognition obtained from Wechsler revealed a bimodal distribution, suggesting a two-group sample, with the youngest children forming their own subgroup. Comparisons of the different age-groups' performances demonstrated the lowest results among the preschoolers while the adults scored the highest. The global adaptive behavior score turned out significantly lower than the performance-based scores, thereby deflating the overall estimate of global intellectual abilities. Conclusion: For individuals with CHARGE, the effect of the atypicality seemed most apparent during early childhood, stabilizing and subsiding towards adulthood. The test results' interpretability was weakest for the preschoolers progressively increasing until peaking in adulthood, emphasizing the importance of delaying the assessment and diagnosis of intellectual disability. Because of several validity issues connected to the observation-based measure, complementary testing should precede clinical evaluations when possible in the diagnostics of individuals with CHARGE.
Language	English
Publishing date	2023-09-07
Publishing country	England
Document type	Journal Article
ZDB-ID	3061-2
ISSN	1563-5279 ; 1543-5245 ; 0020-7454
ISSN (online)	1563-5279 ; 1543-5245
ISSN	0020-7454
DOI	10.1080/00207454.2023.2240485
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Article ; Online: Communication partner strategies in negotiation for meaning in interactions involving aided communication.

Neuvonen, Kirsi A / Smith, Martine M / Launonen, Kaisa / von Tetzchner, Stephen

Clinical linguistics & phonetics

2022 Volume 37, Issue 12, Page(s) 1104–1123

Abstract: Co-constructing meaning is acommon feature of all conversationsbut may have amore specific role in interactions where one of the participants uses aided communication. The present study applies qualitative descriptive analysis supported by quantitative ... ...

Abstract	Co-constructing meaning is acommon feature of all conversationsbut may have amore specific role in interactions where one of the participants uses aided communication. The present study applies qualitative descriptive analysis supported by quantitative measures in exploring meaning-negotiation strategies of speaking communication partners in task-related aided conversations. The study focuses on identifying and exploring strategies that the communication partners utilise when attempting to interpret the meaning and resolve potential ambiguities of aided utterances in the context of event descriptions. The participants of the study were three aided communicators (age 8 to 11 years), who used graphic communication systems as their main means of communication, and familiar adult communication partners. The results demonstrate that the communication partners employed several strategies in attempting to comprehend, interpret and co-construct the meaning of aided utterances at various phases of interaction. The primary strategy involved clarifying the lexical properties of the aided constructions, reflecting the multidimensional and polysemous nature of graphic communication systems. Structural and referential complexities affected how the elements produced were understood as part of the ongoing context. The study highlights the participants´ shared responsibility in developing and utilising effective meaning-negotiation and repair strategies to support successful communication.
MeSH term(s)	Adult ; Humans ; Child ; Negotiating ; Communication Aids for Disabled ; Communication ; Communication Disorders
Language	English
Publishing date	2022-11-25
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	639459-0
ISSN	1464-5076 ; 0269-9206
ISSN (online)	1464-5076
ISSN	0269-9206
DOI	10.1080/02699206.2022.2148130
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Article: Pupillary Responses to Illusions of Brightness in Autism Spectrum Disorder.

Laeng, Bruno / Færevaag, Fredrik Svartdal / Tanggaard, Stine / von Tetzchner, Stephen

i-Perception

2018 Volume 9, Issue 3, Page(s) 2041669518771716

Abstract: Previous studies indicate that individuals with autism spectrum disorder (ASD) do not experience optical illusions in the same manner as individuals with typical development. This study uses pupillary responses as an objective measure of perception of ... ...

Abstract	Previous studies indicate that individuals with autism spectrum disorder (ASD) do not experience optical illusions in the same manner as individuals with typical development. This study uses pupillary responses as an objective measure of perception of visual illusions, with the hypothesis that adults with ASD will show weaker pupillary constrictions to the illusions than adults without ASD. An eye-tracker was used to investigate the spontaneous pupillary changes to brightness illusions in adults diagnosed with ASD (
Language	English
Publishing date	2018-05-17
Publishing country	United States
Document type	Journal Article
ZDB-ID	2619696-7
ISSN	2041-6695
ISSN	2041-6695
DOI	10.1177/2041669518771716
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Article ; Online: Medical Issues in Adults with Rett Syndrome - A National Survey.

Henriksen, Mari Wold / Breck, Hilde / von Tetzchner, Stephen / Paus, Benedicte / Skjeldal, Ola H

Developmental neurorehabilitation

2019 Volume 23, Issue 2, Page(s) 106–112

Abstract: ... ...

Abstract	Objectives
MeSH term(s)	Adolescent ; Adult ; Aged ; Child ; Child, Preschool ; Epilepsy/epidemiology ; Female ; Gastrointestinal Diseases/epidemiology ; Humans ; Infant ; Middle Aged ; Parents ; Respiratory Tract Diseases/epidemiology ; Rett Syndrome/complications ; Rett Syndrome/epidemiology ; Scoliosis/epidemiology ; Surveys and Questionnaires ; Walking
Language	English
Publishing date	2019-07-25
Publishing country	England
Document type	Journal Article
ZDB-ID	2280007-4
ISSN	1751-8431 ; 1751-8423
ISSN (online)	1751-8431
ISSN	1751-8423
DOI	10.1080/17518423.2019.1646341
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Article ; Online: Neuropsychological profiles of children with cerebral palsy.

Stadskleiv, Kristine / Jahnsen, Reidun / Andersen, Guro L / von Tetzchner, Stephen

Developmental neurorehabilitation

2018 Volume 21, Issue 2, Page(s) 108–120

Abstract: Purpose: To explore factors contributing to variability in cognitive functioning in children with cerebral palsy (CP).: Method: A geographical cohort of 70 children with CP was assessed with tests of language comprehension, visual-spatial reasoning, ... ...

Abstract	Purpose: To explore factors contributing to variability in cognitive functioning in children with cerebral palsy (CP). Method: A geographical cohort of 70 children with CP was assessed with tests of language comprehension, visual-spatial reasoning, attention, working memory, memory, and executive functioning. Mean age was 9;9 years (range 5;1-17;7), 54.3% were girls, and 50.0% had hemiplegic, 25.7% diplegic, 12.9% quadriplegic, and 11.4% dyskinetic CP. For the participants with severe motor impairments, assessments were adapted for gaze pointing. A cognitive quotient (CQ) was computed. Results: Mean CQ was 78.5 (range 19-123). Gross motor functioning, epilepsy, and type of brain injury explained 35.5% of the variance in CQ (F = 10.643, p = .000). Conclusion: Twenty-four percent had an intellectual disability, most of them were children with quadriplegic CP. Verbal comprehension and perceptual reasoning scores did only differ for the 21% with an uneven profile, of whom two-thirds had challenges with perceptual reasoning.
MeSH term(s)	Aptitude ; Cerebral Palsy/complications ; Cerebral Palsy/diagnosis ; Cerebral Palsy/epidemiology ; Child ; Child Development ; Child, Preschool ; Comprehension ; Female ; Humans ; Intellectual Disability/epidemiology ; Male ; Memory, Short-Term ; Neuropsychological Tests/standards
Language	English
Publishing date	2018-02
Publishing country	England
Document type	Journal Article
ZDB-ID	2280007-4
ISSN	1751-8431 ; 1751-8423
ISSN (online)	1751-8431
ISSN	1751-8423
DOI	10.1080/17518423.2017.1282054
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Article ; Online: Aided communication, mind understanding and co-construction of meaning.

Stadskleiv, Kristine / Batorowicz, Beata / Sandberg, Annika Dahlgren / Launonen, Kaisa / Murray, Janice / Neuvonen, Kirsi / Oxley, Judith / Renner, Gregor / Smith, Martine M / Soto, Gloria / van Balkom, Hans / Walter, Catia / Yang, Chih-Kang / von Tetzchner, Stephen

Developmental neurorehabilitation

2022 Volume 25, Issue 8, Page(s) 518–530

Abstract: Mind understanding allows for the adaptation of expressive language to a listener and is a core element when communicating new information to a communication partner. There is limited knowledge about the relationship between aided language and mind ... ...

Abstract	Mind understanding allows for the adaptation of expressive language to a listener and is a core element when communicating new information to a communication partner. There is limited knowledge about the relationship between aided language and mind understanding. This study investigates this relationship using a communication task. The participants were 71 aided communicators using graphic symbols or spelling for expression (38/33 girls/boys) and a reference group of 40 speaking children (21/19 girls/boys), aged 5;0-15;11 years. The task was to describe, but not name, drawings to a communication partner. The partner could not see the drawing and had to infer what was depicted from the child's explanation. Dyads with aided communicators solved fewer items than reference dyads (64% vs 93%). The aided spellers presented more precise details than the symbol users (46% vs 38%). In the aided group, number of correct items correlated with verbal comprehension and age.
MeSH term(s)	Child ; Communication ; Communication Aids for Disabled ; Female ; Humans ; Language ; Male
Language	English
Publishing date	2022-07-16
Publishing country	England
Document type	Journal Article
ZDB-ID	2280007-4
ISSN	1751-8431 ; 1751-8423
ISSN (online)	1751-8431
ISSN	1751-8423
DOI	10.1080/17518423.2022.2099030
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Article ; Online: Mental Disorders in Deaf and Hard of Hearing Adult Outpatients: A Comparison of Linguistic Subgroups.

Øhre, Beate / Volden, Maj / Falkum, Erik / von Tetzchner, Stephen

Journal of deaf studies and deaf education

2017 Volume 22, Issue 1, Page(s) 105–117

Abstract: Deaf and hard of hearing (DHH) individuals who use signed language and those who use spoken language face different challenges and stressors. Accordingly, the profile of their mental problems may also differ. However, studies of mental disorders in this ... ...

Abstract	Deaf and hard of hearing (DHH) individuals who use signed language and those who use spoken language face different challenges and stressors. Accordingly, the profile of their mental problems may also differ. However, studies of mental disorders in this population have seldom differentiated between linguistic groups. Our study compares demographics, mental disorders, and levels of distress and functioning in 40 patients using Norwegian Sign Language (NSL) and 36 patients using spoken language. Assessment instruments were translated into NSL. More signers were deaf than hard of hearing, did not share a common language with their childhood caregivers, and had attended schools for DHH children. More Norwegian-speaking than signing patients reported medical comorbidity, whereas the distribution of mental disorders, symptoms of anxiety and depression, and daily functioning did not differ significantly. Somatic complaints and greater perceived social isolation indicate higher stress levels in DHH patients using spoken language than in those using sign language. Therefore, preventive interventions are necessary, as well as larger epidemiological and clinical studies concerning the mental health of all language groups within the DHH population.
Language	English
Publishing date	2017-01
Publishing country	United States
Document type	Journal Article
ZDB-ID	1494621-x
ISSN	1465-7325 ; 1081-4159
ISSN (online)	1465-7325
ISSN	1081-4159
DOI	10.1093/deafed/enw061
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