Aspects of learning from the perspective of people with Alström syndrome

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Fältnamn	Indikatorer	Metadata
000		05348naa a2200541 4500
001		oai:DiVA.org:oru-47760
003		SwePub
008		160125s2016 \| \|\|\|\|\|\|\|\|\|\|\|000 \|\|eng\|
009		oai:DiVA.org:liu-124616
024	7	a https://urn.kb.se/resolve?urn=urn:nbn:se:oru:diva-477602 URI
024	7	a https://doi.org/10.3109/09638288.2015.10553812 DOI
024	7	a https://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-1246162 URI
040		a (SwePub)orud (SwePub)liu
041		a engb eng
042		9 SwePub
072	7	a ref2 swepub-contenttype
072	7	a art2 swepub-publicationtype
100	1	a Rönnåsen, Berit,d 1954-u School of Health and Medical Sciences, Örebro University, The Swedish Institute for Disability Research, Örebro, Sweden; Audiological Research Centre, Örebro University Hospital, Örebro, Sweden4 aut0 (Swepub:oru)btrn
245	1 0	a Aspects of learning from the perspective of people with Alström syndrome
264		c 2015-06-18
264	1	b Taylor & Francis,c 2016
338		a print2 rdacarrier
500		a Funding Agency:Swedish Institute for Disability Research, Linnaeus Centre HEAD
500		a Funding Agencies\|Swedish Research Council; Swedish Institute for Disability Research, Linnaeus Centre HEAD
520		a 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.
650	7	a MEDICIN OCH HÄLSOVETENSKAPx Hälsovetenskapx Annan hälsovetenskap0 (SwePub)303992 hsv//swe
650	7	a MEDICAL AND HEALTH SCIENCESx Health Sciencesx Other Health Sciences0 (SwePub)303992 hsv//eng
650	7	a SAMHÄLLSVETENSKAPx Utbildningsvetenskapx Lärande0 (SwePub)503032 hsv//swe
650	7	a SOCIAL SCIENCESx Educational Sciencesx Learning0 (SwePub)503032 hsv//eng
650	7	a SAMHÄLLSVETENSKAPx Utbildningsvetenskapx Pedagogiskt arbete0 (SwePub)503042 hsv//swe
650	7	a SOCIAL SCIENCESx Educational Sciencesx Pedagogical Work0 (SwePub)503042 hsv//eng
653		a Alström syndrome (AS)
653		a deafblindness
653		a dual sensory loss
653		a learning
653		a sensoneural progressive hearing loss
653		a vision loss
653		a Handikappvetenskap
653		a Disability Science
700	1	a Möller, Kerstin,d 1950-u Örebro universitet,Institutionen för hälsovetenskap och medicin,Audiological Research Centre, Örebro University Hospital, Örebro, Sweden,University of Örebro, Sweden; Örebro University Hospital, Sweden4 aut0 (Swepub:oru)kmr
700	1	a Möller, Claes,d 1950-u Örebro universitet,Institutionen för hälsovetenskap och medicin,Audiological Research Centre, Örebro University Hospital, Örebro, Sweden,University of Örebro, Sweden; Örebro University Hospital, Sweden4 aut0 (Swepub:oru)cmr
700	1	a Lyxell, Björnu Linköpings universitet,Handikappvetenskap,Filosofiska fakulteten4 aut0 (Swepub:liu)bjoly62
700	1	a Anderzén Carlsson, Agneta,d 1966-u Örebro universitet,Institutionen för hälsovetenskap och medicin,Audiological Research Centre, Örebro University Hospital, Örebro, Sweden,University of Örebro, Sweden; Örebro University Hospital, Sweden4 aut0 (Swepub:oru)atan
710	2	a School of Health and Medical Sciences, Örebro University, The Swedish Institute for Disability Research, Örebro, Sweden; Audiological Research Centre, Örebro University Hospital, Örebro, Swedenb Institutionen för hälsovetenskap och medicin4 org
773	0	t Disability and Rehabilitationd : Taylor & Francisg 38:7, s. 644-652q 38:7<644-652x 1748-3107x 1748-3115x 0963-8288x 1464-5165
856	4 8	u https://urn.kb.se/resolve?urn=urn:nbn:se:oru:diva-47760
856	4 8	u https://doi.org/10.3109/09638288.2015.1055381
856	4 8	u https://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-124616

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