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Perspectivas/Preocupações dos pais de crianças com paralisia cerebral: um estudo qualitativo
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Advisor(s)
Abstract(s)
Todos os indivíduos nascem no seio de uma família, é nela que recebem os primeiros afectos,
que fazem os primeiros contactos com o exterior, onde criam laços. Verificamos que apesar de
todos pertencermos a uma família, não há nenhuma família igual, são todas influenciadas por
diferentes contextos: físico, temporal, político e social. Assim, o termo “família” nunca poderá
ser visto como algo estático, é um conceito em constante mudança.
No seio da família pode existir um indivíduo com Necessidades Educativas Especiais (N.E.E.)
que pode alterar a dinâmica familiar.
A paralisia cerebral é um tema que nos suscita grande interesse e por isso o nosso estudo vai
ao encontro desta temática. Elaboramos um estudo qualitativo, onde pretendemos verificar:
“Quais as perspectivas/ preocupações dos pais de crianças com Paralisia Cerebral”. Iremos
verificar estas perspectivas/ preocupações relativamente a três períodos distintos: o nascimento
da criança, a actualidade e o futuro. Participaram no estudo dez pais de crianças (entre os três e
os seis anos de idade), com diagnóstico de paralisia cerebral, do concelho de Cascais.
Concluímos que quando inicialmente os pais tomam consciência que têm um filho diferente,
preocupam-se em saber correctamente o diagnóstico de forma a poderem agir da melhor forma
possível em direcção à “cura”, depois aparece a questão da sobrevivência, grande parte dos pais
só se preocupa se o seu filho vai resistir por ser tão pequeno e tão frágil. Verificamos ainda que
muitos destes pais lidam diariamente com o sentimento de culpa.
Ao questionarmos os progenitores sobre as perspectivas/ preocupações actuais aparece a
entrada para a escola como a primeira preocupação, a socialização e a integração são
interrogatórias para os pais. Seguem-se as questões da autonomia e do cansaço, pois, a criança
que não é autónoma exige muito dos pais e isto origina um desgaste físico e psicológico muito
grande.
Quando questionamos os pais sobre as suas perspectivas/ preocupações futuras verificamos
que a qualidade de vida é o que mais os preocupa, seguem-se as preocupações com a vida social e a independência. Os pais perspectivam que os filhos tenham trabalho, que adquiram os
aparelhos que necessitam para ganhar mais independência.
All individuals are born in a family; it’s is in it, that they receive the first affections, make the first contact with the outside, where they are able to establish connections. We found that although all belong to one family, there are no families alike, all are influenced by different contexts: physical, sequential, political and social. Thus, the term "family" can never be seen as something inert, it is a concept in constant change. In a family there may be an individual with Special Educational Needs (SEN) which will change the family dynamics. Cerebral palsy is a topic of huge interest to us and therefore our study is consistent with this theme. We developed a qualitative study, where we intend to investigate: "Which are the perspectives / concerns of children’s parents with cerebral palsy". We will approach these perspectives/ concerns on three distinct periods: the birth of the child, present and future. Ten parents of children (between three and six years old) diagnosed with cerebral palsy participated in these study, of Cascais Council. We conclude that when parents become aware that they have a special child, the most concern become in knowing the correct diagnosis so that they can act in the best way to reach the "cure", then appears the question of survival; mostly of parents only get worry if their child will survive because they are so small and fragile. We notice that many of these parents have to live daily with the guilt feeling. When questioning the progenitors about their current perspectives/ concerns, the entrance to school appears as the main worry, socialization and integration are still uncertain to parents. It follows the issues of self-sufficiency and exhaustion because the child that is not autonomous will require much of the parents causing a huge physical and psychological distress
All individuals are born in a family; it’s is in it, that they receive the first affections, make the first contact with the outside, where they are able to establish connections. We found that although all belong to one family, there are no families alike, all are influenced by different contexts: physical, sequential, political and social. Thus, the term "family" can never be seen as something inert, it is a concept in constant change. In a family there may be an individual with Special Educational Needs (SEN) which will change the family dynamics. Cerebral palsy is a topic of huge interest to us and therefore our study is consistent with this theme. We developed a qualitative study, where we intend to investigate: "Which are the perspectives / concerns of children’s parents with cerebral palsy". We will approach these perspectives/ concerns on three distinct periods: the birth of the child, present and future. Ten parents of children (between three and six years old) diagnosed with cerebral palsy participated in these study, of Cascais Council. We conclude that when parents become aware that they have a special child, the most concern become in knowing the correct diagnosis so that they can act in the best way to reach the "cure", then appears the question of survival; mostly of parents only get worry if their child will survive because they are so small and fragile. We notice that many of these parents have to live daily with the guilt feeling. When questioning the progenitors about their current perspectives/ concerns, the entrance to school appears as the main worry, socialization and integration are still uncertain to parents. It follows the issues of self-sufficiency and exhaustion because the child that is not autonomous will require much of the parents causing a huge physical and psychological distress
Description
Keywords
Família Família de criança com paralisia cerebral Paralisia cerebral Family Families of cerebral palsy children Cerebral Palsy