"Ter um/a filho/a com surdocegueira" : mudanças, vidas e narrativas de família
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Data
2016
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O nascimento de um/a filho/a implica sempre uma reorganização das relações e
dinâmicas familiares. A investigação realizada teve como objetivo mapear as conceções que
as famílias têm acerca das suas vidas e a dos/as seus/suas filhos/as e quais os obstáculos
sentidos pelo facto de serem pais/mães de pessoas surdocegas. Foram convidados/as a
colaborar pais/mães que tinham filhos/as surdocegos/as, em idade adulta, integrados no Lar
Residencial do CEDAACF, em Lisboa. Metodologicamente optou-se por uma investigação
qualitativa e como instrumento de recolha de dados, pela entrevista, realizada a sete pessoas,
permitiu mapear as formas como a deficiência dos seus/suas filhos/as reconfiguraram
percursos de vida e a (re)organização familiar.
As conclusões revelam que o nascimento de um/a filho/a surdocego/a teve grande
impacto na vida da família caraterizado por percursos solitários e fragmentados. As famílias
deparam-se com dificuldades acrescidas quando tentam aceder a informação ou às respostas
de reabilitação. Todas as famílias referem dificuldades em obter um diagnóstico conclusivo, o
mesmo acontece no que confere ao percurso educativo e reabilitativo. Algumas relatam
condicionantes ao nível laboral, social e económico, motivadas pelo facto de os/as filhos/as
necessitarem de um/a cuidador/a em permanência. Finalmente indicam que se depararam com
grandes dificuldades até encontrarem a instituição vocacionada para a surdocegueira.
As políticas sociais de baixa intensidade e uma insuficiente intervenção psicossocial e
cultural, que promova a partilha de experiências e informação, entre famílias e técnicos/as,
são outras das considerações importantes a reter dos discursos das famílias.
The birth of a child always implies a reorganization of family relations and dynamics. The research carried out aimed at mapping the conceptions that families have about their lives and their children and what obstacles are felt by the fact that they are parents of deafblind people. The invitation to collaborate with this research was made to parents who had deafblind children in adulthood integrated into the CEDAACF Residential Home in Lisbon. Methodologically, a qualitative investigation was chosen and as an instrument of data collection, the interview was carried out with seven people, which allowed him to map the ways in which the disability of his / her children reconfigured life paths and family (re) organization. The findings reveal that the birth of a deaf child had a major impact on family life characterized by lonely and fragmented pathways. Families face increased difficulties when trying to access information or rehabilitation responses. All families report difficulties in obtaining a conclusive diagnosis, the same happens in what confers to the educational and rehabilitative course. Some families report conditioning on the labour, social and economic level, due to the fact that the children need a permanent caretaker. Finally, they indicate that they encountered great difficulties until they found the institution dedicated to deafblindness. Low-intensity social policies and insufficient psychosocial and cultural intervention that promote the sharing of experiences and information among families and technicians are other important considerations to be retained in family discourses.
The birth of a child always implies a reorganization of family relations and dynamics. The research carried out aimed at mapping the conceptions that families have about their lives and their children and what obstacles are felt by the fact that they are parents of deafblind people. The invitation to collaborate with this research was made to parents who had deafblind children in adulthood integrated into the CEDAACF Residential Home in Lisbon. Methodologically, a qualitative investigation was chosen and as an instrument of data collection, the interview was carried out with seven people, which allowed him to map the ways in which the disability of his / her children reconfigured life paths and family (re) organization. The findings reveal that the birth of a deaf child had a major impact on family life characterized by lonely and fragmented pathways. Families face increased difficulties when trying to access information or rehabilitation responses. All families report difficulties in obtaining a conclusive diagnosis, the same happens in what confers to the educational and rehabilitative course. Some families report conditioning on the labour, social and economic level, due to the fact that the children need a permanent caretaker. Finally, they indicate that they encountered great difficulties until they found the institution dedicated to deafblindness. Low-intensity social policies and insufficient psychosocial and cultural intervention that promote the sharing of experiences and information among families and technicians are other important considerations to be retained in family discourses.
Descrição
Orientação: Catarina
Almeida Tomás
Palavras-chave
MESTRADO EM RISCOS E VIOLÊNCIA(S) NAS SOCIEDADES ATUAIS: ANÁLISE E INTERVENÇÃO SOCIAL, SERVIÇO SOCIAL, DEFICIÊNCIA AUDITIVA, DEFICIÊNCIA VISUAL, FAMÍLIA, RELAÇÕES FAMILIARES, SOCIAL WORK, HEARING IMPAIRMENT, VISUAL IMPAIRMENT, FAMILY, FAMILY RELATIONSHIPS, ESTUDOS DE CASO, CASE STUDIES