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As famílias de crianças com doenças raras residentes na região autónoma da Madeira
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Abstract(s)
Neste trabalho de investigação, aborda-se a temática das famílias com crianças com
doenças raras residentes na Região Autónoma da Madeira. O presente estudo tem como
objetivo geral, conhecer as necessidades das famílias das crianças com doenças raras,
bem como o impacto destas doenças na dinâmica familiar.
Trata-se de um estudo de natureza qualitativa, cujos dados foram recolhidos através de
entrevistas semiestruturadas a cinco mães de crianças,com doenças raras, na Ilha da
Madeira, incluídas em escolas. Para análise e interpretação dos resultados obtidos foi
utilizada a análise de conteúdo.
Conclui-se, que as necessidades sentidas pelas mães são sobretudo de suporte
informativo, no desejo de mais informação e conhecimento sobre a doença. Relataram
inclusivamente o recurso a redes sociais e ao convívio com outras pessoas. Valorizaram
as terapias e indicaram como principais receios a saúde e as perspetivas futuras dos filhos.
A noção da incerteza da situação, o medo de adoecer e não poder continuar a cuidar,
abordando o receio do desconhecido do futuro.
Conclui-se ainda, que do ponto de vista das mães as respostas dadas pelos técnicos, são
na sua maioria suficientes para o desenvolvimento das crianças. Contudo há mães que
consideram que o serviço educativo prestado não dispõe de meios suficientes e adequados
às necessidades dos filhos, e sentem ainda a necessidade de apoio destes serviços por
parte da comunidade. Referiram que as crianças com doenças raras são na sua maioria
bem aceites pelos seus pares e indicaram algumas inquietações relativas à inclusão dos
filhos no meio escolar.
This research addresses the theme of rare diseases in families residing in the Autonomous Region of Madeira. The objective of the present study is to know the needs of the families with rare disease children, as well as to know the impacts of rare diseases on family dynamics. This is a qualitative study whose data was collected through semi-structured interviews to five mothers of children, with rare diseases, included in schools within the Madeira Island. The content analysis was used to analyze and interpret the results. It is concluded that the needs felt by mothers are mainly those of informational support and the desire for more knowledge on the disease, referring especially the use of the internet and information passed on by other people. They valued the therapies and indicated as main fears the future health and perspectives of their children. They reported the notion of the uncertainty of the situation, the fear of falling ill themselves and not being able to continue to care for their children and, in general, the fear of the unknown future. It is also concluded that the answers given by the technicians are mostly sufficient for the development of children with rare diseases. However, there are mothers who consider that the educational service provided does not have sufficient and adequate means to meet the needs of the children and that these services require further support from the community. They said that children with rare diseases are mostly well accepted by their peers and have indicated some concerns about the inclusion of their children in the school environment.
This research addresses the theme of rare diseases in families residing in the Autonomous Region of Madeira. The objective of the present study is to know the needs of the families with rare disease children, as well as to know the impacts of rare diseases on family dynamics. This is a qualitative study whose data was collected through semi-structured interviews to five mothers of children, with rare diseases, included in schools within the Madeira Island. The content analysis was used to analyze and interpret the results. It is concluded that the needs felt by mothers are mainly those of informational support and the desire for more knowledge on the disease, referring especially the use of the internet and information passed on by other people. They valued the therapies and indicated as main fears the future health and perspectives of their children. They reported the notion of the uncertainty of the situation, the fear of falling ill themselves and not being able to continue to care for their children and, in general, the fear of the unknown future. It is also concluded that the answers given by the technicians are mostly sufficient for the development of children with rare diseases. However, there are mothers who consider that the educational service provided does not have sufficient and adequate means to meet the needs of the children and that these services require further support from the community. They said that children with rare diseases are mostly well accepted by their peers and have indicated some concerns about the inclusion of their children in the school environment.
Description
Keywords
Doenças raras Criança Família Escola Inclusão Rare diseases Child Family School Inclusion