Literature DB >> 24408482

Communication in deafblind adults with Usher syndrome: retrospective observational study.

Marília Zannon de Andrade Figueiredo, Brasilia Maria Chiari, Bárbara Niegia Garcia de Goulart.   

Abstract

PURPOSE: To characterize the communication and the main mechanisms that facilitate interpersonal relationships of deafblind, especially in relation to communication and locomotion and the impact of these aspects on deafblindness.
METHODS: Report of a series of cases conducted from semi-structured interviews with questions relating to the functionality of communication, with Usher syndrome patients attended in a specialized clinic in a university service, in the year 2007. The sample consisted of 11 deafblind subjects, with Usher syndrome, aged between 20 and 57 years (mean age 43 years and SD=12.27), of which 7 (63.6%) were female. The responses were analyzed by qualitative-quantitative technique of the Discurso do Sujeito Coletivo (DSC).
RESULTS: All participants reported that visual and auditory symptoms began in childhood. Of the 11 interviewed, 6 reported that the disease has negatively affected their daily activities, 6 experienced difficulty at work, and 2 at leisure. Four reported that there was a change in family relationships, and 5 reported no change in the interaction with family and friends. In discourse analysis, almost 30% of respondents reported to use alternative forms of communication, 40% said move alone if the way is known before. Only 1 of 11 participants said they did not ask for help when needed.
CONCLUSION: Individuals diagnosed with Usher syndrome face challenging situations in daily activities, personal relationships, at work and at play. Alternative forms of communication are often used when verbal communication is not possible. The majority of respondents have independence of locomotion, or seeking ways to achieve it.

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Year:  2013        PMID: 24408482     DOI: 10.1590/s2317-17822013000400004

Source DB:  PubMed          Journal:  Codas        ISSN: 2317-1782


  1 in total

Review 1.  Participation experiences of people with deafblindness or dual sensory loss: A scoping review of global deafblind literature.

Authors:  Atul Jaiswal; Heather Aldersey; Walter Wittich; Mansha Mirza; Marcia Finlayson
Journal:  PLoS One       Date:  2018-09-13       Impact factor: 3.240

  1 in total

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