Qualidade de vida de crianças com atrofia muscular espinhal [Digital]
Dissertação
Português
616.419'74-007.23
Fortaleza, 2008.
A atrofia muscular espinhal (AME) é uma doença neuromuscular autossômica recessiva que se apresenta sob quatro formas distintas de manifestação clínica: tipo I - atrofia muscular espinhal progressiva (doença de Werdnig Hoffmann); tipo II - atrofia muscular espinhal na forma intermediária; tipo III -...
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A atrofia muscular espinhal (AME) é uma doença neuromuscular autossômica recessiva que se apresenta sob quatro formas distintas de manifestação clínica: tipo I - atrofia muscular espinhal progressiva (doença de Werdnig Hoffmann); tipo II - atrofia muscular espinhal na forma intermediária; tipo III - atrofia muscular espinhal juvenil (doença de Kugelberg Welander); tipo IV - atrofia muscular espinhal forma adulta. As crianças acometidas pelos tipos I e II apresentam sérios comprometimentos motores e respiratórios; deste modo, é possível se imaginar uma baixa qualidade de vida (QV) destas crianças. Esta pesquisa teve por objetivo investigar a QV de crianças com AME tipo I e II na visão das mesmas e na de seus cuidadores principais. Participaram deste estudo 12 díades cuidador principal/crianças com AME tipo I e II cadastradas pela Associação Brasileira de Amiotrofia Espinhal (ABRAME) e com a patologia diagnosticada através de exame de DNA. Trata-se de uma pesquisa multimetodológica, desenvolvida no período de fevereiro a agosto de 2008 e que teve como instrumentos de coleta de dados: um instrumento de avaliação de qualidade de vida relacionada à saúde (QVRS) validado no Brasil para ser utilizado com crianças - PedsQLTM 4.0, uma ficha sociodemográfica e roteiros de entrevistas. Estes instrumentos tiveram como base teórica de fundamentação os domínios e indicadores de QV na infância propostos por Sabeh, Verdugo e Prieto (2006). A idade média das crianças foi de 5,7 anos e o cuidador principal foi, em todos os casos, as mães das mesmas. A utilização de instrumentos que explorassem a subjetividade dos participantes possibilitou uma maior aproximação da realidade do que a criança e suas mães consideram como sendo uma vida boa. Os dados qualitativos foram analisados segundo a Análise de Conteúdo de Bardin e foi realizada uma análise descritiva dos dados quantitativos, os quais apoiaram a análise qualitativa. Os resultados evidenciaram boa QV tanto na percepção das crianças como na de suas mães. As falas das mães e também as das crianças demonstram que estas têm bem-estar emocional preservado, achado este confirmado pelo resultado do PedsQLTM no qual obteve escore médio de 70,6. O domínio relações interpessoais apresentou bom resultado tanto na fala das mães quanto na das crianças, o escore médio obtido no PedsQLTM para este aspecto foi de 76,7. O domínio bem-estar físico foi o que apresentou maiores contradições nas falas das mães e o que obteve pior resultado no PedsQLTM (escore médio 24,7), isto é justificado pelos graves comprometimentos motores e respiratórios que as crianças apresentam, contudo não provocou reflexo negativo nos outros domínios. No domínio desenvolvimento pessoal e atividades foi explorado o indicador atividades escolares; as falas das mães e das crianças referem-se a um bom desenvolvimento neste aspecto. Os resultados do PedsQLTM para este aspecto foram: para crianças de 2 a 4 anos o escore médio foi de 55,6 e para os participantes acima de 5 anos foi de 94. O domínio bem-estar material foi verificado pela ficha sociodemográfica e pela fala das crianças, as quais demonstraram resultado positivo para este aspecto. É importante salientar que em todos os aspectos houve concordância entre as falas das mães e das crianças. Os achados desta pesquisa possibilitaram conhecer as percepções de QV de crianças com uma doença crônica que acarreta grandes perdas do ponto de vista motor e respiratório, assim como as percepções de suas mães a este respeito. Isto poderá servir de subsídio para a formulação de estratégias de saúde direcionadas para uma vida de qualidade para estas crianças em consonância com o princípio da eqüidade do Sistema Único de Saúde (SUS), com a Política Nacional de Saúde da Pessoa Portadora de Deficiência e a aproximação dos desejos das crianças em realidade.
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Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disease that can express itself as four distinct clinical manifestations: type I - progressive spinal muscular atrophy (Werdnig-Hoffmann disease); type II -intermediate spinal muscular atrophy; type III - juvenile spinal muscular...
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Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disease that can express itself as four distinct clinical manifestations: type I - progressive spinal muscular atrophy (Werdnig-Hoffmann disease); type II -intermediate spinal muscular atrophy; type III - juvenile spinal muscular atrophy (Kugelberg-Welander disease); type IV - adult spinal
muscular atrophy. The children affected by types I and II present with motor and respiratory impairment, resulting in low quality of life (QOL). The aim of this study was to investigate the QOL of children with SMA type I and II from their own perspective and from that of their main caregivers. In total, 12 main caregiver/children pairs with SMA type I and II, registered by the Brazilian Association of Spinal Amyotrophy (ABRAME), and with the pathology diagnosed through DNA analysis, took part in the research. This multimethodological study, conducted between february and august 2008, used the following data collection instruments: a health-related quality of life (HRQol) instrument validated in Brazil for use in children, PedsQLTM 4.0; a sociodemographic chart and a series of interviews. These instruments contained the domains and indicators of childhood QOL proposed by Sabeh, Verdugo and Prieto (2006). The mean age of the children was 5.7 years and the main caregiver in each case was the child's mother. The use of instruments that explored the subjectivity of the participants enabled a closer approximation to what the children and their mothers believed to be a good life. The qualitative data were analyzed according to Bardin's content analysis and a descriptive analysis of the quantitative data to support the qualitative analysis was also performed. The results showed good QOL, from the perspective of both the children and their mothers. The discourses of both the children and their mothers demonstrate that the emotional well-being of the latter is preserved, a finding confirmed by the result of the PedsQLTM, on which a mean score of 76.7 was obtained. Physical well-being domain showed the greatest contradictions in the mothers' discourses, obtaining the worst result on the PedsQLTM (mean score of 24.7). This can be explained by the serious motor and respiratory impairments that the children display; however, it did not have a negative impact on the other domains. In the personal development and activities domain the school activities indicator was explored; the discourses of the mothers and of the children indicate good development of this aspect. The
results of PedsQLTM for this item were: for children between 2 and 4 years of age the mean score was 55.6 and for those over 5 years of age it was 94. The material well-being domain was determined by the sociodemographic chart and by the children's discourses, showing a positive result for this aspect. It is important to point out that there was agreement in all the domains between the discourses of the mothers and of the children. The findings of this study revealed the QOL perceptions of children with a chronic disease that causes significant motor and respiratory impairment, as well as the perceptions of their mothers. This may serve to assist in developing health strategies aimed at an improved quality of life for these children in accordance with the principle of equity proclaimed by the National Health System (SUS) in the National Health Policy of Persons with Deficiency and with the actual desires of the children themselves. Ver menos
muscular atrophy. The children affected by types I and II present with motor and respiratory impairment, resulting in low quality of life (QOL). The aim of this study was to investigate the QOL of children with SMA type I and II from their own perspective and from that of their main caregivers. In total, 12 main caregiver/children pairs with SMA type I and II, registered by the Brazilian Association of Spinal Amyotrophy (ABRAME), and with the pathology diagnosed through DNA analysis, took part in the research. This multimethodological study, conducted between february and august 2008, used the following data collection instruments: a health-related quality of life (HRQol) instrument validated in Brazil for use in children, PedsQLTM 4.0; a sociodemographic chart and a series of interviews. These instruments contained the domains and indicators of childhood QOL proposed by Sabeh, Verdugo and Prieto (2006). The mean age of the children was 5.7 years and the main caregiver in each case was the child's mother. The use of instruments that explored the subjectivity of the participants enabled a closer approximation to what the children and their mothers believed to be a good life. The qualitative data were analyzed according to Bardin's content analysis and a descriptive analysis of the quantitative data to support the qualitative analysis was also performed. The results showed good QOL, from the perspective of both the children and their mothers. The discourses of both the children and their mothers demonstrate that the emotional well-being of the latter is preserved, a finding confirmed by the result of the PedsQLTM, on which a mean score of 76.7 was obtained. Physical well-being domain showed the greatest contradictions in the mothers' discourses, obtaining the worst result on the PedsQLTM (mean score of 24.7). This can be explained by the serious motor and respiratory impairments that the children display; however, it did not have a negative impact on the other domains. In the personal development and activities domain the school activities indicator was explored; the discourses of the mothers and of the children indicate good development of this aspect. The
results of PedsQLTM for this item were: for children between 2 and 4 years of age the mean score was 55.6 and for those over 5 years of age it was 94. The material well-being domain was determined by the sociodemographic chart and by the children's discourses, showing a positive result for this aspect. It is important to point out that there was agreement in all the domains between the discourses of the mothers and of the children. The findings of this study revealed the QOL perceptions of children with a chronic disease that causes significant motor and respiratory impairment, as well as the perceptions of their mothers. This may serve to assist in developing health strategies aimed at an improved quality of life for these children in accordance with the principle of equity proclaimed by the National Health System (SUS) in the National Health Policy of Persons with Deficiency and with the actual desires of the children themselves. Ver menos
Disponibilidade forma física: Existe obra em CD-Rom de código : 80161
Disponibilidade forma física: Existe obra impressa de código : 81108
Valdés, Maria Teresa Moreno
Orientador
Landim, Fátima Luna Pinheiro
Coorientador
Valdés, Maria Teresa Moreno
Banca examinadora
Landim, Fátima Luna Pinheiro
Banca examinadora
Munguba, Marilene Calderaro da Silva
Banca examinadora
Frota, Mirna Albuquerque
Banca examinadora
Lopes, Daniel de Paula Lima e Oliveira
Banca examinadora
Universidade de Fortaleza. Programa de Pós-Graduação em Saúde Coletiva
Dissertação (mestrado)