Estudio sobre nivel de independencia y necesidad de recursos de apoyo en una población con enfermedades neuromusculares

• Pousada García, Thais ^[1] ; Pereira Loureiro, Javier ^[1] ; Groba González, Betania ^[1] ; Nieto-Riveiro, Laura ^[1] ; Pazos Sierra, Alejandro ^[1]
  1. [1] Universidade da Coruña

     Universidade da Coruña

     A Coruña, España

     
• Localización: Revista Española de Discapacidad (REDIS), ISSN-e 2340-5104, Vol. 6, Nº. 2, 2018 (Ejemplar dedicado a: REVISTA ESPAÑOLA DE DISCAPACIDAD), págs. 131-147
• Idioma: español
• DOI: 10.5569/2340-5104.06.02.07
• Títulos paralelos:
  • Survey on level of independence and need for support resources in a population with neuromuscular disorders
• Enlaces
  • Texto completo (pdf)
• Resumen
  • español

    Objetivos: obtener un perfil sobre capacidad funcional y participación de personas con Enfermedades Neuromusculares (ENM), y determinar los recursos de apoyo necesarios para mejorar o mantener su grado de independencia. Metodología: estudio transversal con 24 personas con ENM. En la evaluación se emplearon la Medida de Independencia Funcional (FIM), un checklist de accesibilidad de la vivienda y un cuestionario específico. Resultados: muestra formada por catorce mujeres (58,3 %) y 10 hombres (41,7 %). Se obtuvo una media de 61,7 (DE=17,2) para la parte motora de FIM sobre 91, indicando un grado moderado de dependencia. El producto de apoyo (PA) más frecuentemente empleado fue la silla de ruedas (70,8 %). La mayoría de las viviendas (87,5 %) presentaban barreras arquitectónicas. Conclusiones: la evaluación concisa sobre necesidades de independencia de personas con ENM es fundamental para prescribir los recursos más adecuados para satisfacerlas. Este procedimiento se debe implementar en programas asistenciales, incluyendo la atención al cuidador.

  • English

    Objectives: to obtain a profile on the functional capacity and participation of people with Neuromuscular Disorders (NMD), and to determine the support resources required to improve or maintain their degree of independence. Methods: cross-sectional study with 24 persons with NMD. The Functional Independence Measure (FIM), the checklist of a home’s accessibility level and specific questionnaire were administered. Results: sample formed by fourteen women (58.3 %) and 10 men (41.7 %). A mean of 61.7 (SD = 17.2) was obtained for FIM Motor, over 91, indicating a moderate level of dependence. The assistive technology (AT) most frequently used was the wheelchair (70.8 %). The architectural barriers were detected in the majority of the users’ homes (87.5 %). Conclusions: a concise assessment of the independence needs of people with NMD and prescription of the most adequate resources to meet them is required. This procedure should be implemented in health-care programs, including care to caregiver.

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