Qualidade de vida de crianças com distrofia muscular progressiva tipo Duchenne

AUTOR(ES)
DATA DE PUBLICAÇÃO

2005

RESUMO

The Duchenne Progressive Muscular Dystrophy is a genetic disease that happens in people from the male sex, characterized for the progressive muscular weakness that takes to the lost of march between 8 12 years old and to death usually in the end of the adolescence. The disease limitations have been related as factors that can damage the quality of life (QL) of these patients. This study had as general objective to assess the QL perceived in children with DMD. Specific objectives were included as to establish the concordance between children and their responsible; identify the most important dominoes of the QL in children in their own and their responsible optic; to check the school influence and the mobility in the QL. The collection of data was done in the period from August and October of 2005, at the Centro de Reabilitação Sarah Fortaleza. 14 patients with the diagnostic of DMD participated of the collection as well as his mainly responsible. The average age of the children was 9.9 years old. This is a quantitative survey, using qualitative tools of assessment. The tools used for the collection were: the AUQEI questionnaire, qualitative AUQEI and the Three Desires Projective Technique that made the data triangulation later on. The theoretical referential and the focus on the methodological pluralism in the approach of the construct QL were useful to reach the objectives, demonstrating the importance of also use the qualitative tools to explore the subjective child and for his empowerment as a person. The results showed a good quality of life in children with DMD, concordance between children and their responsible, which was bigger in relation with the reasons that produce happiness. The most representative dominoes were function, family and leisure time. The school showed to have a positive influence in the QL of these children. Different from the walk that didnt have any relation with the QL, the children demonstrated the desire of an independent mobility, even using wheelchair. These findings made us know the perception of QL in a group of children with a chronic, unable and fatal disease which can contribute to the development of the activities that aim to improve the QL, respecting the natural context of the childhood. We recommend that the rehabilitation of children with DMD is based on QL centered in children and in environment favorable to health, emphasizing the importance of activities that aim to increase the levels of satisfaction, practices already developed at Rede Sarah de Hospitais de Reabilitação.

ASSUNTO(S)

educaÇÃo em saÚde - dissertaÇÕes crianÇas - distrofia muscular - dissertaÇÕes saude coletiva qualidade de vida - dissertaÇÕes

ACESSO AO ARTIGO

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