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  • 1.
    Frölander, Hans Erik
    et al.
    Örebro University, School of Health Sciences. Örebro Audiological Research Centre, Örebro, Sweden; The Swedish Institute for Disability Research, Linköping, Sweden; The Linnaeus Centre HEAD, Linköping, Sweden; Research on Hearing and Deafness (HEAD) Graduate School, Linköping, Sweden .
    Lyxell, Björn
    Department of Behavioral Science and Learning, Linköping University, Linköping; The Swedish Institute for Disability Research, Linköping, Sweden; The Linnaeus Centre HEAD, Linköping, Sweden.
    Marshall, Jan D
    Jackson laboratory, Bar Harbor, Maine, ME, USA; Alstrom Syndrome international, Mt. Desert, Maine, ME, USA.
    Piacentini, Heather
    Alstrom Syndrome international, Mt. Desert, Maine, ME, USA.
    Möller, Claes
    Örebro University, School of Health Sciences. Örebro Audiological Research Centre, Örebro, Sweden; Department of Audiology, Örebro University Hospital, Örebro, Sweden; The Swedish Institute for Disability Research, Sweden; The Linnaeus Centre HEAD, Linköping, Sweden.
    Theory-of-mind in young adults with Alström syndrome is affected by social relationshipsManuscript (preprint) (Other academic)
  • 2.
    Frölander, Hans-Erik
    Örebro University, School of Health Sciences.
    Deafblindness: Theory-of-mind, cognitive functioning and social network in Alström syndrome2016Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    This thesis addresses young adults with Alström syndrome (AS). AS causes acquired deafblindness, a severe, progressive, combined auditory and visual impairment affecting daily life and self-reliance to a degree that full participation depends on help from others and society. AS is an autosomal, recessively inherited single-gene disorder that affects the ALMS1 gene. AS has a multi-systemic pathology including a high incidence of additional multiple endocrine abnormalities, cardiomyopathy, pulmonary fibrosis, restrictive lung disease and progressive hepatic and renal failure leading to reduced life expectancy. The focus in the present thesis is on the development of Theory-of-mind (ToM) and on how ToM relates to the development of certain cognitive skills and the characteristics of the individual social network. ToM refers to the ability to understand the thoughts and feelings of others.

    The results reveal that individuals with AS displayed a significantly higher degree of heterogeneity in the performance of ToM tasks, and some individuals with AS performed on an equal level with nondisabled individuals. ToM performance was predicted by verbal ability and executive functioning (EF), whereas working memory capacity (WM) proved to be an indirect predictor. Later onset of visual loss further characterized AS individuals with better ToM. The sizes of the social networks of individuals with AS were smaller relative to those of nondisabled individuals, and many of the acquaintances were professionals working with individuals with AS. The number of friends correlated with ToM performance.

    Methods to improve verbal ability and EF, and interventions to enhance social participation in childhood of individuals with AS might prove to be fruitful. In addition assistive technology to establish and maintain friendships in adulthood is required.

    List of papers
    1. Theory-of-mind in adolescents and young adults with Alström Syndrome
    Open this publication in new window or tab >>Theory-of-mind in adolescents and young adults with Alström Syndrome
    Show others...
    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
    2. Theory of mind and cognitive function in adults with Usher or Alström syndrome
    Open this publication in new window or tab >>Theory of mind and cognitive function in adults with Usher or Alström syndrome
    (English)Manuscript (preprint) (Other academic)
    National Category
    Other Health Sciences
    Research subject
    Disability Research
    Identifiers
    urn:nbn:se:oru:diva-49433 (URN)
    Available from: 2016-03-18 Created: 2016-03-18 Last updated: 2017-10-17Bibliographically approved
    3. Theory-of-mind in individuals with Alström syndrome is related to executive functions, and verbal ability
    Open this publication in new window or tab >>Theory-of-mind in individuals with Alström syndrome is related to executive functions, and verbal ability
    Show others...
    2015 (English)In: Frontiers in Psychology, ISSN 1664-1078, E-ISSN 1664-1078, Vol. 6, article id 1426Article in journal (Refereed) Published
    Abstract [en]

    Objective: This study focuses on cognitive prerequisites for the development of theory-of-mind (ToM), the ability to impute mental states to self and others in young adults with Alström syndrome (AS). AS is a rare and quite recently described recessively inherited ciliopathic disorder which causes progressive sensorineural hearing loss and juvenile blindness, as well as many other organ dysfunctions. Two cognitive abilities were considered; Phonological working memory (WM) and executive functions (EF), both of importance in speech development.                                                                                              

    Methods: Ten individuals (18–37 years) diagnosed with AS, and 20 individuals with no known impairment matched for age, gender, and educational level participated. Sensory functions were measured. Information about motor functions and communicative skills was obtained from responses to a questionnaire. ToM was assessed using Happés strange stories, verbal ability by a vocabulary test, phonological WM by means of an auditory presented non-word serial recall task and EF by tests of updating and inhibition.                                           

    Results: The AS group performed at a significantly lower level than the control group in both the ToM task and the EF tasks. A significant correlation was observed between recall of non-words and EF in the AS group. Updating, but not inhibition, correlated significantly with verbal ability, whereas both updating and inhibition were significantly related to the ability to initiate and sustain communication. Poorer performance in the ToM and EF tasks were related to language perseverance and motor mannerisms.                                                     

    Conclusion: The AS group displayed a delayed ToM as well as reduced phonological WM, EF, and verbal ability. A significant association between ToM and EF, suggests a compensatory role of EF. This association may reflect the importance of EF to perceive and process input from the social environment when the social interaction is challenged by dual sensory loss. We argue that limitations in EF capacity in individuals with AS, to some extent, may be related to early blindness and progressive hearing loss, but maybe also to gene specific abnormalities.

    Keywords
    Alström syndrome (AS), ciliopathy, deafblindness, theory-of-mind, verbal ability, executive functions
    National Category
    Psychology (excluding Applied Psychology)
    Research subject
    Psychology
    Identifiers
    urn:nbn:se:oru:diva-46002 (URN)10.3389/fpsyg.2015.01426 (DOI)000361813000001 ()26441796 (PubMedID)
    Funder
    NIH (National Institute of Health), HDO36878
    Note

    Funding Agency:

    Linnaeus Centre HEAD

    Available from: 2015-10-02 Created: 2015-10-02 Last updated: 2018-07-02Bibliographically approved
    4. Theory-of-mind in young adults with Alström syndrome is affected by social relationships
    Open this publication in new window or tab >>Theory-of-mind in young adults with Alström syndrome is affected by social relationships
    Show others...
    (English)Manuscript (preprint) (Other academic)
    National Category
    Other Health Sciences
    Research subject
    Disability Research
    Identifiers
    urn:nbn:se:oru:diva-49434 (URN)
    Available from: 2016-03-18 Created: 2016-03-18 Last updated: 2017-10-17Bibliographically approved
  • 3.
    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.

  • 4.
    Frölander, Hans-Erik
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Audiological Research Centre, Örebro University Hospital, Örebro, Sweden; Swedish Institute for Disability Research, Linköping, Sweden; Linnaeus Centre HEAD, Linköping, Sweden; Research on Hearing and Deafness (HEAD) graduate School, Linköping University, Linköping, Sweden.
    Möller, Claes
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Audiological Research Centre, Örebro; Swedish Institute for Disability Research, Linköping University, Linköping, Sweden; Linnaeus Centre HEAD, Linköping University, Linköping, Sweden; Department of Audiology, Örebro University Hospital, Örebro, Sweden.
    Rudner, Mary
    Swedish Institute for Disability Research, Linköping University, Linköping, Sweden; Linnaeus Centre HEAD, Linköping University, Linköping, Sweden; Department of Behavioral Sciences and Learning, Linköping University, Linköping, Sweden.
    Mishra, Sushmit
    Institute of Health Sciences, Utkal University, Bhubaneswar, India.
    Marshall, Jan D.
    Jackson Laboratory, Bar Harbor ME, USA; Alstrom Syndrome International, Mount Desert ME, USA.
    Piacentini, Heather
    Alstrom Syndrome International, Mount Desert ME, USA.
    Lyxell, Björn
    Swedish Institute for Disability Research, Linköping University, Linköping, Sweden; Linnaeus Centre HEAD, Linköping University, Linköping, Sweden; Department of Behavioral Sciences and Learning, Linköping University, Linköping, Sweden.
    Theory-of-mind in individuals with Alström syndrome is related to executive functions, and verbal ability2015In: Frontiers in Psychology, ISSN 1664-1078, E-ISSN 1664-1078, Vol. 6, article id 1426Article in journal (Refereed)
    Abstract [en]

    Objective: This study focuses on cognitive prerequisites for the development of theory-of-mind (ToM), the ability to impute mental states to self and others in young adults with Alström syndrome (AS). AS is a rare and quite recently described recessively inherited ciliopathic disorder which causes progressive sensorineural hearing loss and juvenile blindness, as well as many other organ dysfunctions. Two cognitive abilities were considered; Phonological working memory (WM) and executive functions (EF), both of importance in speech development.                                                                                              

    Methods: Ten individuals (18–37 years) diagnosed with AS, and 20 individuals with no known impairment matched for age, gender, and educational level participated. Sensory functions were measured. Information about motor functions and communicative skills was obtained from responses to a questionnaire. ToM was assessed using Happés strange stories, verbal ability by a vocabulary test, phonological WM by means of an auditory presented non-word serial recall task and EF by tests of updating and inhibition.                                           

    Results: The AS group performed at a significantly lower level than the control group in both the ToM task and the EF tasks. A significant correlation was observed between recall of non-words and EF in the AS group. Updating, but not inhibition, correlated significantly with verbal ability, whereas both updating and inhibition were significantly related to the ability to initiate and sustain communication. Poorer performance in the ToM and EF tasks were related to language perseverance and motor mannerisms.                                                     

    Conclusion: The AS group displayed a delayed ToM as well as reduced phonological WM, EF, and verbal ability. A significant association between ToM and EF, suggests a compensatory role of EF. This association may reflect the importance of EF to perceive and process input from the social environment when the social interaction is challenged by dual sensory loss. We argue that limitations in EF capacity in individuals with AS, to some extent, may be related to early blindness and progressive hearing loss, but maybe also to gene specific abnormalities.

  • 5.
    Henricson, Cecilia
    et al.
    Linköping university.
    Frölander, Hans Erik
    Örebro University, School of Health Sciences. Örebro Audiological Research Centre, Örebro SE 701 85, Sweden; The Swedish Institute for Disability Research, Linköping, Sweden; The Linnaeus Centre HEAD, Linköping, Sweden; Research on Hearing and Deafness (HEAD) Graduate School, Linköping, Sweden .
    Möller, Claes
    Örebro University, School of Health Sciences. Örebro Audiological Research Centre, Örebro, Sweden; Department of Audiology, Örebro University Hospital, Örebro, Sweden; The Swedish Institute for Disability Research, Linköping, Sweden.
    Lyxell, Björn
    Linköping university.
    Theory of mind and cognitive function in adults with Usher or Alström syndromeManuscript (preprint) (Other academic)
  • 6.
    Henricson, Cecilia
    et al.
    Department of Behavioral Science and Learning, Linköping University, Linköping, Sweden; The Swedish Institute for Disability Research, Linköping University, Linköping, Sweden; The Linnaeus Centre HEAD, Linköping University, Linköping, Sweden; Research on Hearing and Deafness (HEAD) Graduate School, Linköping University, Linköping, Sweden.
    Frölander, Hans-Erik
    School of Health, Örebro University, Örebro, Sweden; Audiological Research Centre, Örebro University Hospital, Örebro, Sweden.
    Möller, Claes
    Örebro University, School of Health Sciences. Audiological Research Centre, Örebro University Hospital, Örebro, Sweden.
    Lyxell, Björn
    Department of Behavioral Science and Learning, Linköping University, Linköping, Sweden; The Swedish Institute for Disability Research, Linköping University, Linköping, Sweden; The Linnaeus Centre HEAD, Linköping University, Linköping, Sweden.
    Theory of Mind and Cognitive Function in Adults with Alstrom or Usher Syndrome2016In: Journal of Visual Impairment & Blindness, ISSN 0145-482X, E-ISSN 1559-1476, Vol. 110, no 5, p. 349-366Article in journal (Refereed)
    Abstract [en]

    Objective: Theory of mind (ToM) refers to the ability to impute mental states to one's self and others. ToM was investigated in adults with Usher syndrome type 2 (USH2) or Alstrom syndrome (AS). Both syndromes cause deafblindness, but differ with regard to onset and degree of sensory loss. Individuals with AS, furthermore, display additional physical diseases. Comparisons were made with individuals with typical hearing and vision.

    Methods: Thirteen people with USH2, 12 people with AS, and 33 people with typical hearing and vision performed tests of working memory capacity and verbal ability. ToM was tested via Happe's Strange Stories, assessing ability to understand the emotions and actions of story characters. The test also included matched physical stories to evaluate understanding of the logical outcomes associated with everyday situations.

    Results: Significant differences were identified in problem solving regarding physical conditions, with higher scores for the typical hearing and vision group, H(2) = 22.91, p < 0.01. The two groups with deafblindness also demonstrated poorer ToM than the typical hearing and vision group, H(2) = 21.61, p < 0.01, and the USH2 group outperformed the AS group, U(34), z = 2.42, p = 0.016. Intra-group variability was related to working memory capacity, verbal ability, visual status, and to a minor extent auditory capacity. The prevalence of the additional physical diseases was not related to ToM performance.

    Conclusions: Limited access to information due to visual loss may have reduced the degree of social experience, thereby negatively affecting the development of ToM. That working memory capacity and verbal ability displayed an impact implies that hearing also contributes to ToM development. Differences between the two groups might be a function of genetic conditions, in which the gene causing USH2 only affects the ears and the eyes, whereas AS has a multisystemic pathology.

    Implications for practitioners: Advice and support technology should emphasize ease of communication and boost the development of the communication required to develop ToM.

1 - 6 of 6
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