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Rönnåsen, Berit
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Rönnåsen, B., Möller, K., Möller, C., Lyxell, B. & Anderzén Carlsson, A. (2016). Aspects of learning from the perspective of people with Alström syndrome. Disability and Rehabilitation: Assistive Technology, 38(7), 644-652
Open this publication in new window or tab >>Aspects of learning from the perspective of people with Alström syndrome
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2016 (English)In: Disability and Rehabilitation: Assistive Technology, ISSN 1748-3107, E-ISSN 1748-3115, Vol. 38, no 7, p. 644-652Article in journal (Refereed) Published
Abstract [en]

Purpose: The aim of the study was to explore aspects of learning, from a lifelong perspective, in individuals with Alstro ̈m syndrome (AS). AS is an autosomal recessive disorder causing early blindness, progressive sensorineural hearing loss, cardiomyopathy, endocrine disorders, metabolic dysfunction, and abbreviated lifespan.

Method: Eleven individuals with AS participated. The study had a qualitative explorative design, giving voice to the participants’ perspectives on their situation. Data were collected using semi-structured interviews, which were subjected to conventional (inductive) qualitative content analysis.

Results: The analysis revealed in the participants a quest for independence and an image of themselves as capable people willing to learn, but in constant need of support to continue learning throughout their lives to be as independent as possible.

Conclusion: Based on the levels of functioning, i.e. personal resources, revealed in the interviews, supervisors, caregivers, and teachers are encouraged to allow people with AS to be their own advocates, as they know best how, what, and with whom they learn, and what type of sensory material – tactile, auditory, visual, or a combination – is most helpful. Implications for RehabilitationIndividuals with AS strive for independence, and to be independent they need to continue to learn throughout their lives.Individuals with AS know best how they learn, and should be asked what modalities are the most effective for them.The tactile modality for learning will continue throughout life and should be emphasized early in the individual's education and rehabilitation.

Place, publisher, year, edition, pages
Taylor & Francis, 2016
Keywords
Alström syndrome (AS), deafblindness, dual sensory loss, learning, sensoneural progressive hearing loss, vision loss
National Category
Other Health Sciences Learning
Research subject
Disability Science
Identifiers
urn:nbn:se:oru:diva-47760 (URN)10.3109/09638288.2015.1055381 (DOI)000367902500005 ()26084572 (PubMedID)2-s2.0-84954546359 (Scopus ID)
Funder
Swedish Research Council
Note

Funding Agency:

Swedish Institute for Disability Research, Linnaeus Centre HEAD

Available from: 2016-01-25 Created: 2016-01-25 Last updated: 2017-11-30Bibliographically approved
Rönnåsen, B. (2015). Aspekter på lärande vid dövblindhet: möjligheter och begränsningar för personer med Alström syndrom. (Licentiate dissertation). Örebro: Örebro universitet
Open this publication in new window or tab >>Aspekter på lärande vid dövblindhet: möjligheter och begränsningar för personer med Alström syndrom
2015 (Swedish)Licentiate thesis, comprehensive summary (Other academic)
Place, publisher, year, edition, pages
Örebro: Örebro universitet, 2015. p. 91
Series
Studies from The Swedish Institute for Disability Research, ISSN 1650-1128 ; 70
Keywords
Alström syndrome (AS), learning, vision loss, sensoneural progressive hearing loss, progressive vestibular loss, deafblindness
National Category
Other Health Sciences
Research subject
Disability Research
Identifiers
urn:nbn:se:oru:diva-44667 (URN)978-91-7529-068-3 (ISBN)
Supervisors
Available from: 2015-05-22 Created: 2015-05-20 Last updated: 2017-10-17Bibliographically approved
Frölander, H.-E., Möller, C., Marshall, J. D., Sundqvist, A., Rönnåsen, B., Falkensson, L. & Lyxell, B. (2014). Theory-of-mind in adolescents and young adults with Alström Syndrome. International Journal of Pediatric Otorhinolaryngology, 78(3), 530-537
Open this publication in new window or tab >>Theory-of-mind in adolescents and young adults with Alström Syndrome
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2014 (English)In: International Journal of Pediatric Otorhinolaryngology, ISSN 0165-5876, E-ISSN 1872-8464, Vol. 78, no 3, p. 530-537Article in journal (Refereed) Published
Abstract [en]

Objective: The study focuses on theory-of-mind in adolescents and young adults with Alström syndrome (ALMS). ALMS, an autosomal recessive syndrome causes juvenile blindness, sensorineural hearing loss, cardiomyopathy, endocrinological disorders and metabolic dysfunction. Theory-of-mind (ToM) refers to the ability to impute mental states to one self and to others. Clinical observations have revealed an increased occurence of deviances in mental state understanding in ALMS. In the present study ToM will be examined and related to working memory (WM), verbal ability and sensory loss.

Methods: Twelve young individuals (16-37 years) with ALMS and 24 nondisabled individuals matched on age, gender and educational level participated. ToM was assessed by means of a multiple task that taxes the ability to understand thoughts and feelings of story chraracters´. WM was examined by means of a reading span task and verbal ability by means of a vocabulary test.

Results: The ALMS group performed at significantly lower levels in ToM tasks and displayed a higher variability in performance than the control group. Individuals with ALMS and a relatively poor level performance provided fewer correct mental state inferences in ToM tasks than ALMS individuals with relatively higher performance levels. ALMS individuals with relatively high performance levels made as many correct inferences in ToM tasks as the control group, but their inferences were more often incomplete. Vocabulary skills and educational level, but not WM-capacity predicted ToM performance. Degree of deafblindness did not have an impact on ToM. Age of onset of visual loss but not hearing loss related to ToM.

Conclusions: The individuals with ALMS display a high degree of heterogeneity in terms of ToM, where some individuals reached performance levels comparable to nondisabled individuals. The results are discussed with respect to how cognitive and verbal abilities and factors related to the disability affect ToM.

Place, publisher, year, edition, pages
Elsevier, 2014
Keywords
Alström syndrome (ALMS), Deafblindness, Theory-of-mind, Working memory, Verbal ability, Dual sensory loss
National Category
Otorhinolaryngology Pediatrics
Identifiers
urn:nbn:se:oru:diva-33957 (URN)10.1016/j.ijporl.2013.12.038 (DOI)000334394400026 ()24485176 (PubMedID)2-s2.0-84893729756 (Scopus ID)
Note

Funding Agencies:

Linnaeus Centre HEAD

JDM

NIH

Available from: 2014-02-27 Created: 2014-02-27 Last updated: 2018-06-05Bibliographically approved
Rönnåsen, B., Möller, K., Möller, C., Lyxell, B. & Anderzen-Carlsson, A.Aspects of Learning from the Perspective of People With Alström Syndrome.
Open this publication in new window or tab >>Aspects of Learning from the Perspective of People With Alström Syndrome
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(English)Manuscript (preprint) (Other academic)
Keywords
Alström syndrome (AS), deafblindness, dual sensory loss, learning, sensoneural progressive hearing loss, vision loss
National Category
Learning Other Health Sciences
Research subject
Disability Science
Identifiers
urn:nbn:se:oru:diva-44682 (URN)
Available from: 2015-05-22 Created: 2015-05-22 Last updated: 2017-10-17Bibliographically approved
Möller, C., Rönnåsen, B., Jutegren, G., Maffei, P., Naggert, J. & Marshall, J.Auditory and vestibular pathology in Alström syndrome.
Open this publication in new window or tab >>Auditory and vestibular pathology in Alström syndrome
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(English)Manuscript (preprint) (Other academic)
National Category
Learning Other Medical Sciences not elsewhere specified
Research subject
Disability Research
Identifiers
urn:nbn:se:oru:diva-44681 (URN)
Available from: 2015-05-22 Created: 2015-05-22 Last updated: 2017-10-17Bibliographically approved
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