OpenConf

Full Program »

Aspects of learning in deafblindness - opportunities and limitations for persons with Alström syndrome.

File
View File
pdf
1.3MB

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. AS is a rare autosomal recessive inherited disorder leading to extreme medical complexity with progressive loss of vision and hearing, and finally to deafblindness. The conditions for life with AS are severe and the need for rehabilitation and support continues throughout life. 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.

Author(s):

Berit Rönnåsen    
National Agency for Special Needs Education and Schools, The Swedish Institute for Disability Research, Audiological Research Centre
Sweden

Agneta Anderzen-Carlsson    
School of Health and Medical Sciences Örebro University, The Swedish Institute for Disability Research, Audiological Research Centre
Sweden

Kerstin Möller    
School of Health and Medical Sciences Örebro University, The Swedish Institute for Disability Research, Audiological Research Centre
Sweden

 

Powered by OpenConf®
Copyright ©2002-2014 Zakon Group LLC