title: Aspects of learning from the perspective of people with Alström syndrome.
abstract: OBJECTIVE
  The aim of the study was to explore aspects of learning, from a lifelong perspective, in individuals with Alström syndrome (AS). AS is an autosomal recessive disorder causing early blindness, progressive sensorineural hearing loss, cardiomyopathy, endocrine disorders, metabolic dysfunction, and abbreviated lifespan.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
  
  
  CONCLUSIONS
  Individuals 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.
authors.affiliation: a School of Health and Medical Sciences, Örebro University, The Swedish Institute for Disability Research , Örebro , Sweden .|b Audiological Research Centre, Örebro University Hospital , Örebro , Sweden , and.
authors.forename: Berit
authors.initials: B
authors.lastname: Rönnåsen
authors.affiliation: a School of Health and Medical Sciences, Örebro University, The Swedish Institute for Disability Research , Örebro , Sweden .|b Audiological Research Centre, Örebro University Hospital , Örebro , Sweden , and.
authors.forename: Kerstin
authors.initials: K
authors.lastname: Möller
authors.affiliation: a School of Health and Medical Sciences, Örebro University, The Swedish Institute for Disability Research , Örebro , Sweden .|b Audiological Research Centre, Örebro University Hospital , Örebro , Sweden , and.
authors.forename: Claes
authors.initials: C
authors.lastname: Möller
authors.affiliation: c Department of Behavioural Science and Learning , Linköping University , Linköping , Sweden.
authors.forename: Björn
authors.initials: B
authors.lastname: Lyxell
authors.affiliation: a School of Health and Medical Sciences, Örebro University, The Swedish Institute for Disability Research , Örebro , Sweden .|b Audiological Research Centre, Örebro University Hospital , Örebro , Sweden , and.
authors.forename: Agneta
authors.initials: A
authors.lastname: Anderzen-Carlsson
mesh_terms: D000293:Adolescent; D000328:Adult; D017668:Age of Onset; D056769:Alstrom Syndrome / Q000150:complications* / Q000534:rehabilitation*; D001766:Blindness / Q000534:rehabilitation*; D005260:Female; D006319:Hearing Loss, Sensorineural / Q000534:rehabilitation*; D006801:Humans; D007407:Interviews as Topic; D007858:Learning; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D057566:Self Report; D055815:Young Adult
keywords: Alström syndrome (AS); deafblindness; dual sensory loss; learning; sensoneural progressive hearing loss; vision loss