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Authors
Advisor(s)
Abstract(s)
Foi nossa intenção, neste estudo desenvolvido e aqui apresentado, alertar e apelar para a
importância do tema “O outro lado: irmãos de pessoas com deficiência”. Foi nossa
pretensão, analisar e compreender a relação fraternal entre irmãos saudáveis e irmãos
com deficiência, respondendo a questões tais como: Quais as modificações sofridas no
ciclo de vida familiar? Que implicações tiveram as mesmas para o desenvolvimento da
vida do irmão saudável? Terá um irmão saudável qualidade de vida? O irmão saudável
pode em algum momento ter sido prejudicado ou menosprezado pelo sistema familiar e
pelos outros sistemas que o envolvem (e.g., sociedade, escola, associações)? Fará
sentido a fundação de uma associação de apoio não somente às famílias, mas
especificamente aos irmãos cuidadores? Este estudo enquadra-se num paradigma de
investigação de carácter qualitativo, em que a escolha dos instrumentos de recolha de
dados foi feita de forma a atingir os pressupostos do mesmo, seguindo as orientações e
procedimentos de um estudo de caso. A amostra escolhida para esta investigação consta
de (n=5) participantes, cinco irmãos “saudáveis” cujos irmãos são portadores de
deficiência, de diferentes patologias e diferentes graus de severidade.
No que se refere ao método, optamos por um estudo qualitativo, recorrendo a fontes
documentais, e entrevistas presenciais e escrita. Após a confrontação dos dados
recolhidos concluímos que a qualidade de vida dos irmãos saudáveis é
proporcionalmente afetada pela deficiência do seu irmão e ponderamos a hipótese da
fundação de uma instituição de apoio a estes irmãos, para o equilíbrio familiar,
emocional e psicológico dos mesmos. A motivação assenta na grande inquietação da
aproximação da idade adulta dos seus irmãos, assim como, o envelhecimento dos seus
pais (aproximação da parentificação). Os resultados subsequentes desta investigação
serão um contributo para a reflexão sobre a relação fraternal entre irmãos saudáveis e
irmãos com deficiência, abrindo caminho para futuros estudos. A hipótese da
necessidade da criação de uma associação de apoio à “O outro lado”será um
sonho…mas talvez uma realidade futura. Esperemos num futuro próximo, tão próximo
quanto possível.
In the developed study here presented it was our intention to alert and appeal to the importance of the topic: “The other part: siblings of disabled people”. We intended to analyse and understand the relationship between healthy siblings and siblings with a disability. For that we answered questions such as: Which changes were felt in the family life cycle? What implications have these changes had in the development of the healthy sibling? Does the healthy sibling have a healthy life quality? May the healthy sibling have been harmed or slighted by the family system or even by the surrounding systems (e.g., society, school, associations)? Does it make any sense to create a support association not just to families but also to the caretaker siblings? This study is enframed in an investigation paradigm with a qualitative character in which the choice of the data gathering instruments was made to strike its assumptions, following the guidance and procedures of a case study. The sample selected for this investigation is of (n=5) participants, five “healthy” children whose siblings have a disability with different pathologies and different degrees of severity. About the method, we decided on a qualitative study recurring to documental sources and interviews. Confronting the gathered data, we concluded that the quality of life of “healthy” children is proportionally affected by their sibling’s disability and we pounder the hypothesis of creating a support institution for these siblings, for the family stability and their emotional and psychological balance. The motivation is caused by the great concern about the approaching adulthood of their disabled siblings as well as the aging of their parents (the approaching of parenthood responsibilities towards their siblings). The subsequent results of this investigation will be a contribute to the reflection on fraternal relationship between “healthy” children and disabled siblings which will unfold the possibility of future studies. The hypothesis of the necessity of creating a support association to “The other part” may be a dream… but perhaps a future reality. Let us hope it is a near future, as near as possible.
In the developed study here presented it was our intention to alert and appeal to the importance of the topic: “The other part: siblings of disabled people”. We intended to analyse and understand the relationship between healthy siblings and siblings with a disability. For that we answered questions such as: Which changes were felt in the family life cycle? What implications have these changes had in the development of the healthy sibling? Does the healthy sibling have a healthy life quality? May the healthy sibling have been harmed or slighted by the family system or even by the surrounding systems (e.g., society, school, associations)? Does it make any sense to create a support association not just to families but also to the caretaker siblings? This study is enframed in an investigation paradigm with a qualitative character in which the choice of the data gathering instruments was made to strike its assumptions, following the guidance and procedures of a case study. The sample selected for this investigation is of (n=5) participants, five “healthy” children whose siblings have a disability with different pathologies and different degrees of severity. About the method, we decided on a qualitative study recurring to documental sources and interviews. Confronting the gathered data, we concluded that the quality of life of “healthy” children is proportionally affected by their sibling’s disability and we pounder the hypothesis of creating a support institution for these siblings, for the family stability and their emotional and psychological balance. The motivation is caused by the great concern about the approaching adulthood of their disabled siblings as well as the aging of their parents (the approaching of parenthood responsibilities towards their siblings). The subsequent results of this investigation will be a contribute to the reflection on fraternal relationship between “healthy” children and disabled siblings which will unfold the possibility of future studies. The hypothesis of the necessity of creating a support association to “The other part” may be a dream… but perhaps a future reality. Let us hope it is a near future, as near as possible.
Description
Keywords
Deficiência Relações familiares Relação fraternal Qualidade de vida Disability Family relations Fraternal relationship Quality of life