QUALITY OF LIFE AND WISHES IN DUCHENNE MUSCULAR DYSTROPHY: THE PERCEPTION OF CHILDREN AND THEIR PARENTS
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| Format: | Artículo científico |
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Universidade de Fortaleza
2009
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| author | Egmar Longo Araújo de Melo |
| author_facet | Egmar Longo Araújo de Melo |
| contents | QUALITY OF LIFE AND WISHES IN DUCHENNE MUSCULAR DYSTROPHY: THE PERCEPTION OF CHILDREN AND THEIR PARENTS Egmar Longo Araújo de Melo Maria Teresa Moreno Valdés Cruiff Emerson Pinto da Silva Marta Badia Corbella Benito Arias Martínez Salud wishes duchenne agreement quality of life Muscular dystrophy Objective: To assess the agreement between children with Duchenne Muscular Dystrophy (DMD) and their parents regarding the perception of quality of life (QOL) and the wishes expressed by children. Methods: The study involved 14 patients (median age = 9.9 yearsold) followed up in Sarah Rehabilitation Center - Fortaleza, Brazil and their parents. The following instruments were used: AUQEI questionnaire (Autoquestionnaire Qualité de Vie Enfant Imagé) and Three Wishes Projective Technique, this being analyzed by Nereo & Hinton's system of categories (2003). Results: The analysis of AUQEI showed a good agreement with ICC (intraclass correlation coefficient) = 0,699 and a positive and significant correlation between scores of both children and their parents (rho = 0.54, p < 0.05). The Three Wishes also showed a good agreement, mainly in the categories of Material Goods and Activities. Conclusions: Despite children with DMD and their parents exhibited similar perceptions of the QOL and wishes, we suggest that both be heard in respect to aspects of the rehabilitation program. This study provides additional data concerning the need for child QOL assessment instruments that include parallel versions directed to the children and their parents. 2009 artículo científico 1806-1222 https://www.redalyc.org/articulo.oa?id=40812462005 en http://www.redalyc.org/revista.oa?id=408 Revista Brasileira em Promoção da Saúde application/pdf Universidade de Fortaleza Revista Brasileira em Promoção da Saúde (Brasil) Num.4 Vol.22 |
| format | Artículo científico |
| id | redalyc_40812462005 |
| institution | Redalyc |
| language | en |
| publishDate | 2009 |
| publisher | Universidade de Fortaleza |
| spellingShingle | QUALITY OF LIFE AND WISHES IN DUCHENNE MUSCULAR DYSTROPHY: THE PERCEPTION OF CHILDREN AND THEIR PARENTS Egmar Longo Araújo de Melo Salud wishes duchenne agreement quality of life Muscular dystrophy QUALITY OF LIFE AND WISHES IN DUCHENNE MUSCULAR DYSTROPHY: THE PERCEPTION OF CHILDREN AND THEIR PARENTS Egmar Longo Araújo de Melo Maria Teresa Moreno Valdés Cruiff Emerson Pinto da Silva Marta Badia Corbella Benito Arias Martínez Salud wishes duchenne agreement quality of life Muscular dystrophy Objective: To assess the agreement between children with Duchenne Muscular Dystrophy (DMD) and their parents regarding the perception of quality of life (QOL) and the wishes expressed by children. Methods: The study involved 14 patients (median age = 9.9 yearsold) followed up in Sarah Rehabilitation Center - Fortaleza, Brazil and their parents. The following instruments were used: AUQEI questionnaire (Autoquestionnaire Qualité de Vie Enfant Imagé) and Three Wishes Projective Technique, this being analyzed by Nereo & Hinton's system of categories (2003). Results: The analysis of AUQEI showed a good agreement with ICC (intraclass correlation coefficient) = 0,699 and a positive and significant correlation between scores of both children and their parents (rho = 0.54, p < 0.05). The Three Wishes also showed a good agreement, mainly in the categories of Material Goods and Activities. Conclusions: Despite children with DMD and their parents exhibited similar perceptions of the QOL and wishes, we suggest that both be heard in respect to aspects of the rehabilitation program. This study provides additional data concerning the need for child QOL assessment instruments that include parallel versions directed to the children and their parents. 2009 artículo científico 1806-1222 https://www.redalyc.org/articulo.oa?id=40812462005 en http://www.redalyc.org/revista.oa?id=408 Revista Brasileira em Promoção da Saúde application/pdf Universidade de Fortaleza Revista Brasileira em Promoção da Saúde (Brasil) Num.4 Vol.22 |
| title | QUALITY OF LIFE AND WISHES IN DUCHENNE MUSCULAR DYSTROPHY: THE PERCEPTION OF CHILDREN AND THEIR PARENTS |
| topic | Salud wishes duchenne agreement quality of life Muscular dystrophy |
| url | https://www.redalyc.org/articulo.oa?id=40812462005 |