oru.sePublikationer
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Aspects of learning from the perspective of people with Alström syndrome
School of Health and Medical Sciences, Örebro University, The Swedish Institute for Disability Research, Örebro, Sweden; Audiological Research Centre, Örebro University Hospital, Örebro, Sweden.
Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Audiological Research Centre, Örebro University Hospital, Örebro, Sweden.ORCID iD: 0000-0002-4455-7826
Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Audiological Research Centre, Örebro University Hospital, Örebro, Sweden.ORCID iD: 0000-0001-6557-6359
Department of Behavioural Science and Learning, Linköping University, Linköping, Sweden.
Show others and affiliations
2016 (English)In: Disability and Rehabilitation: Assistive Technology, ISSN 1748-3107, E-ISSN 1748-3115, Vol. 38, no 7, 644-652 p.Article 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. Vol. 38, no 7, 644-652 p.
Keyword [en]
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: urn:nbn:se:oru:diva-47760DOI: 10.3109/09638288.2015.1055381ISI: 000367902500005PubMedID: 26084572Scopus ID: 2-s2.0-84954546359OAI: oai:DiVA.org:oru-47760DiVA: diva2:897417
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: 2017-10-17Bibliographically approved

Open Access in DiVA

No full text

Other links

Publisher's full textPubMedScopus

Search in DiVA

By author/editor
Rönnåsen, BeritMöller, KerstinMöller, ClaesAnderzén Carlsson, Agneta
By organisation
School of Health and Medical Sciences, Örebro University, Sweden
In the same journal
Disability and Rehabilitation: Assistive Technology
Other Health SciencesLearning

Search outside of DiVA

GoogleGoogle Scholar

Altmetric score

Total: 281 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf