Aspects of learning from the perspective of people with Alström syndrome

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 individual’s education and rehabilitation.

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

Acknowledgements

We would like to express our sincere gratitude to the participants who generously shared their experiences of learning with us. We would also like to thank Lil Falkensson, The National Resource Centre for Deafblindness, Lund, Sweden and Jan Marshall, Jackson Laboratories, Bar Harbor, Maine and Alstrom International for making the data collection in the US possible.

Declaration of interest

This research was funded by the Swedish Research Council and the Swedish Institute for Disability Research, Linnaeus Centre HEAD. The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.