Factors associated with wheelchair use and satisfaction in Spoan syndrome

Authors

DOI:

https://doi.org/10.11606/issn.2238-6149.v30i3p174-182

Keywords:

people with disability, wheelchair, assistive technology, public policy

Abstract

Spoan syndrome is a genetic disease that associates spastic paraparesis, axonal neuropathy and optical atrophy. In all, more than 70 people have been registered with this syndrome in ten municipalities in the states of Rio Grande do Norte and
Paraíba. In this study, the objective was to investigate the association between age, level of dependence and degree of satisfaction with the wheelchair used by 28 people with this
syndrome. Validated instruments were applied to assess motor function, such as the Modified Barthel Index; the Quebec User Evaluation of Satisfaction with Assistive Technology (QUEST 2.0)
and the Wheelchair Follow up forms to assess the degree of satisfaction with assistive technology. the Assistive Technology Assessment Questionnaire (QUEST 2.0) and the Wheelchair Follow-up Form. Most people with Spoan syndrome from the northeastern Brazilian hinterland are dependent on third parties and need wheelchairs granted by public health services for their mobility. These people have little or no access to health care services, including rehabilitation. And although they are satisfied with the wheelchairs in use, they point out difficulties in following
up and monitoring the equipment, as well as in acquiring new wheelchairs. The degree of satisfaction is not related to their functional dependence, but to their age. Younger people were
more satisfied with their wheelchairs.

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Author Biographies

  • Cláudia Regina Cabral Galvao, Universidade Federal da Paraíba

    Este trabalho é parte integrante da Tese de Doutorado intitulado “Síndrome Spoan: avaliação funcional e do uso das cadeiras de rodas convencionais e digitalizadas” feito pelo Programa de Pós-Graduação em Ciências da Reabilitação da Faculdade de Medicina da Universidade de São Paulo.
    Departamento de Terapia Ocupacional, Universidade Federal da Paraíba.  

  • Priscilla Maria de Andrade Cavalcante, Srta, Universidade de São Paulo

    Terapeuta Ocupacional pela Universidade Federal da Paraíba. Mestranda do Programa de Pós Graduação em Ciências da Reabilitação da Universidade de São Paulo.

     

  • Alessandra Cavalcanti, Universidade Federal do Triângulo Mineiro

    Docente do Curso de Terapia Ocupacional da Universidade Federal do Triângulo Mineiro. Doutora em Ciências pela Universidade de São Paulo

  • Bárbara Iansã de Lima Barroso, Universidade Federal da Paraíba

    Docente do Departamento de Terapia Ocupacional da Universidade Federal da Paraíba. Doutora  em Ciências pela Universidade de São Paulo.

  • Ricardo Alves de Olinda, Universidade Estadual da Paraíba

    Docente do Curso de Estatística da Universidade Estadual da Paraíba.

     

  • Silvana Santos, Universidade Federal da Paraíba

    Docente do Curso de Biologia da universidade Estadual da Paraíba. Doutora em Genética pela Universidade de São Paulo.

  • Selma Lancman, Universidade de São Paulo. Faculdade de Medicina (FMUSP). Departamento de Fonoaudiologia, Fisioterapia e  Terapia Ocupacional

    Docente do Departamento de Fonoaudiologia, Fisioterapia e  Terapia Ocupacional Da Universidade de São Paulo. Doutora em Saúde Mental pela Universidade Estadual de Campinas.

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Published

2019-11-18

Issue

Vol. 30 No. 3 (2019)

Section

Articles

License

Copyright (c) 2019 Cláudia Regina Cabral Galvao, Priscilla Maria de Andrade Cavalcante, Alessandra Cavalcanti, Bárbara Iansã de Lima Barroso, Ricardo Alves de Olinda, Silvana Santos, Selma Lancman

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This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.

How to Cite

Galvao, C. R. C., Cavalcante, P. M. de A., Cavalcanti, A., Barroso, B. I. de L., Olinda, R. A. de ., Santos, S., & Lancman, S. (2019). Factors associated with wheelchair use and satisfaction in Spoan syndrome. Revista De Terapia Ocupacional Da Universidade De São Paulo, 30(3), 174-182. https://doi.org/10.11606/issn.2238-6149.v30i3p174-182