Aspects of learning from the perspective of people with Alström syndrome

Berit Rönnåsen*, Kerstin Möller, Claes Möller, Björn Lyxell, Agneta Anderzen-Carlsson

*Corresponding author for this work

Research output: Contribution to journalArticle

4 Citations (Scopus)

Abstract

Purpose: 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. 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 Rehabilitation 

• 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 individuals education and rehabilitation.

Original languageEnglish
Pages (from-to)644-652
Number of pages9
JournalDisability and Rehabilitation
Volume38
Issue number7
DOIs
Publication statusPublished - 26 Mar 2016
Externally publishedYes

Keywords

  • Alström syndrome (AS)
  • deafblindness
  • dual sensory loss
  • learning
  • sensoneural progressive hearing loss
  • vision loss

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