Aspects of learning from the perspective of people with Alström syndrome

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Rönnåsen, Berit,1954-School of Health and Medical Sciences, Örebro University, The Swedish Institute for Disability Research, Örebro, Sweden; Audiological Research Centre, Örebro University Hospital, Örebro, Sweden (author)

Aspects of learning from the perspective of people with Alström syndrome

Article/chapterEnglish2016

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2015-06-18
Taylor & Francis,2016
printrdacarrier

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LIBRIS-ID:oai:DiVA.org:oru-47760
https://urn.kb.se/resolve?urn=urn:nbn:se:oru:diva-47760URI
https://doi.org/10.3109/09638288.2015.1055381DOI
https://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-124616URI

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Language:English
Summary in:English

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Subject category:art swepub-publicationtype

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Funding Agency:Swedish Institute for Disability Research, Linnaeus Centre HEAD
Funding Agencies|Swedish Research Council; Swedish Institute for Disability Research, Linnaeus Centre HEAD
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.

Subject headings and genre

MEDICIN OCH HÄLSOVETENSKAP Hälsovetenskap Annan hälsovetenskap hsv//swe
MEDICAL AND HEALTH SCIENCES Health Sciences Other Health Sciences hsv//eng
SAMHÄLLSVETENSKAP Utbildningsvetenskap Lärande hsv//swe
SOCIAL SCIENCES Educational Sciences Learning hsv//eng
SAMHÄLLSVETENSKAP Utbildningsvetenskap Pedagogiskt arbete hsv//swe
SOCIAL SCIENCES Educational Sciences Pedagogical Work hsv//eng
Alström syndrome (AS)
deafblindness
dual sensory loss
learning
sensoneural progressive hearing loss
vision loss
Handikappvetenskap
Disability Science

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Möller, Kerstin,1950-Örebro universitet,Institutionen för hälsovetenskap och medicin,Audiological Research Centre, Örebro University Hospital, Örebro, Sweden,University of Örebro, Sweden; Örebro University Hospital, Sweden(Swepub:oru)kmr (author)
Möller, Claes,1950-Örebro universitet,Institutionen för hälsovetenskap och medicin,Audiological Research Centre, Örebro University Hospital, Örebro, Sweden,University of Örebro, Sweden; Örebro University Hospital, Sweden(Swepub:oru)cmr (author)
Lyxell, BjörnLinköpings universitet,Handikappvetenskap,Filosofiska fakulteten(Swepub:liu)bjoly62 (author)
Anderzén Carlsson, Agneta,1966-Örebro universitet,Institutionen för hälsovetenskap och medicin,Audiological Research Centre, Örebro University Hospital, Örebro, Sweden,University of Örebro, Sweden; Örebro University Hospital, Sweden(Swepub:oru)atan (author)
School of Health and Medical Sciences, Örebro University, The Swedish Institute for Disability Research, Örebro, Sweden; Audiological Research Centre, Örebro University Hospital, Örebro, SwedenInstitutionen för hälsovetenskap och medicin (creator_code:org_t)

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In:Disability and Rehabilitation: Taylor & Francis38:7, s. 644-6521748-31071748-31150963-82881464-5165

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MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Health Sciences; and Other Health Sci ...

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