Indivíduos com síndrome de Down: análise das principais repercussões sobre a saúde e a família
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Tipo
Dissertação
Data de publicação
2009-08-12
Periódico
Citações (Scopus)
Autores
Alves, Bianca dos Santos
Orientador
Brunoni, Decio
Título da Revista
ISSN da Revista
Título de Volume
Membros da banca
Programa
Distúrbios do Desenvolvimento
Resumo
A Síndrome de Down (SD) é a causa genética mais freqüente de deficiência mental e tem merecido centenas de pesquisas ao redor do mundo enfocando aspectos clínicos, epidemiológicos, citogenéticos e mais recentemente genômicos. Este estudo teve como principal objetivo descrever as principais características sócio-demográficas de famílias de indivíduos com SD, acometimentos à saúde e a investigação de possíveis mudanças ocorridas na rotina familiar e manutenção do casamento. Participaram dessa pesquisa 100 famílias não selecionadas, de pessoas com SD, em diversas faixas etárias, independente do sexo e do comprometimento. Os dados foram coletados através de questionário semi-estruturado especialmente desenvolvido para a pesquisa, aplicados aos principais cuidadores, em Instituição tradicional da cidade de São Paulo. Os principais resultados foram: alta faixa etária das mães e pais no momento do nascimento dos indivíduos com SD e baixa escolaridade materna. Os agravos à saúde foram registrados em alta freqüência. A freqüência de separação entre os pais (10%) foi menor do que a esperada para a população geral (18%), porém 50% das mães referiram que o motivo da separação deveu-se ao nascimento do filho com SD. A adaptação geral das famílias com o filho deficiente foi adequada.
The Down Syndrome (DS) is the most frequent genetic cause of mental disability and has been hundreds of studies around the world focusing on clinical, epidemiological, cytogenetic and more recently genomics. This study had as main objective to describe the main sociodemographic characteristics of families of individuals with DS, affecting the health and investigation of possible changes in routine maintenance of family and marriage. 100 families participated in this research not selected, persons with DS at different ages, independent of sex and commitment. Data were collected through semi-structured questionnaire specially developed for the researcher, applied to the main caregivers, traditional institution in the city of São Paulo. The main results were: high age of the mothers and fathers at birth of individuals with DS and low maternal education. The health problems were recorded at high frequency. The frequency of separation of parents (10%) was lower than expected for the general population (18%), but 50% of mothers reported that the reason for the separation was due to the birth of the child with DS. The general adaptation of families with disabled children was appropriate.
The Down Syndrome (DS) is the most frequent genetic cause of mental disability and has been hundreds of studies around the world focusing on clinical, epidemiological, cytogenetic and more recently genomics. This study had as main objective to describe the main sociodemographic characteristics of families of individuals with DS, affecting the health and investigation of possible changes in routine maintenance of family and marriage. 100 families participated in this research not selected, persons with DS at different ages, independent of sex and commitment. Data were collected through semi-structured questionnaire specially developed for the researcher, applied to the main caregivers, traditional institution in the city of São Paulo. The main results were: high age of the mothers and fathers at birth of individuals with DS and low maternal education. The health problems were recorded at high frequency. The frequency of separation of parents (10%) was lower than expected for the general population (18%), but 50% of mothers reported that the reason for the separation was due to the birth of the child with DS. The general adaptation of families with disabled children was appropriate.
Descrição
Palavras-chave
síndrome de Down , família , deficiência , Down syndrome , families , disability