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  • 1.
    Frölander, Hans-Erik
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. School of Health and Medical Sciences, Örebro; Audiological Research Centre, Örebro University Hospital, Örebro, Sweden; Research on Hearing and Deafness (HEAD) Graduate School, The Swedish Institute for Disability Research, Linköping University, Linköping, Sweden;.
    Möller, Claes
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. School of Health and Medical Sciences, Örebro University, Örebro, Sweden; Audiological Research Centre, Örebro University Hospital, Örebro, Sweden; Department of Audiology, Örebro University Hospital, Örebro, Sweden; The Linnaeus Centre HEAD, The Swedish Institute for Disability Research, Linköping, Sweden.
    Marshall, Jan D.
    The Jackson laboratory, Bar Harbor ME, USA.
    Sundqvist, Annette
    Department of Behavioral Science and Learning, Linköping University, Linköping, Sweden; Linnaeus Ctr HEAD, Linköping, Sweden; The Linnaeus Centre HEAD, The Swedish Institute for Disability Research, Linköping University, Linköping, Sweden.
    Rönnåsen, Berit
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. School of Health and Medical Sciences, Örebro; Audiological Research Centre, Örebro University Hospital, Örebro, Sweden; Research on Hearing and Deafness (HEAD) Graduate School, The Swedish Institute for Disability Research, Linköping University, Linköping, Sweden.
    Falkensson, Lil
    The Swedish National Expert Team for the Diagnoses of Deafblindness, National Resource Centre, Lund, Sweden.
    Lyxell, Björn
    Department of Behavioral Science and Learning, Linköping University, Linköping, Sweden; The Linnaeus Centre HEAD, The Swedish Institute for Disability Research, Linköping University, Linköping, Sweden.
    Theory-of-mind in adolescents and young adults with Alström Syndrome2014In: International Journal of Pediatric Otorhinolaryngology, ISSN 0165-5876, E-ISSN 1872-8464, Vol. 78, no 3, p. 530-537Article in journal (Refereed)
    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.

  • 2.
    Möller, Claes
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital, Örebro, Sweden; Linneus –Head Swedish Institute for disabilty research, Sweden.
    Rönnåsen, Berit
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital, Örebro, Sweden; Linneus –Head Swedish Institute for disabilty research, Sweden.
    Jutegren, Göran
    University of Borås, Sweden.
    Maffei, Pietro
    Department of Medicine University of Padua, Italy.
    Naggert, Jurgen
    Jackson Laboratories, Bar Harbor, ME, USA.
    Marshall, Jan
    Jackson Laboratories, Bar Harbor, ME, USA.
    Auditory and vestibular pathology in Alström syndromeManuscript (preprint) (Other academic)
  • 3.
    Rönnåsen, Berit
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Aspekter på lärande vid dövblindhet: möjligheter och begränsningar för personer med Alström syndrom2015Licentiate thesis, comprehensive summary (Other academic)
    List of papers
    1. Auditory and vestibular pathology in Alström syndrome
    Open this publication in new window or tab >>Auditory and vestibular pathology in Alström syndrome
    Show others...
    (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
    2. 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
    Show others...
    (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
  • 4.
    Rönnåsen, Berit
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. The Swedish Institute for Disability Research, Linköping, Sweden; Audiological Research Centre, Örebro University Hospital.
    Möller, Kerstin
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. The Swedish Institute for Disability Research, Linköping, Sweden; Audiological Research Centre, Örebro University Hospital.
    Möller, Claes
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. The Swedish Institute for Disability Research, Linköping, Sweden; Audiological Research Centre, Örebro University Hospital; Department of Behavioural Science and Learning, Linköping University.
    Lyxell, Björn
    Department of Behavioural Science and Learning, Linköping University.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. The Swedish Institute for Disability Research, Linköping, Sweden; Audiological Research Centre, Örebro University Hospital.
    Aspects of Learning from the Perspective of People With Alström SyndromeManuscript (preprint) (Other academic)
  • 5.
    Rönnåsen, Berit
    et al.
    School of Health and Medical Sciences, Örebro University, The Swedish Institute for Disability Research, Örebro, Sweden; Audiological Research Centre, Örebro University Hospital, Örebro, Sweden.
    Möller, Kerstin
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Audiological Research Centre, Örebro University Hospital, Örebro, Sweden.
    Möller, Claes
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Audiological Research Centre, Örebro University Hospital, Örebro, Sweden.
    Lyxell, Björn
    Department of Behavioural Science and Learning, Linköping University, Linköping, Sweden.
    Anderzén Carlsson, Agneta
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Audiological Research Centre, Örebro University Hospital, Örebro, Sweden.
    Aspects of learning from the perspective of people with Alström syndrome2016In: Disability and Rehabilitation: Assistive Technology, ISSN 1748-3107, E-ISSN 1748-3115, Vol. 38, no 7, p. 644-652Article in journal (Refereed)
    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.

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