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Publication
Impacto de um projeto de intervenção em famílias com filhos com deficiência
Advisor(s)
Abstract(s)
As redes de apoio informais e formais são importantes na promoção de qualidade de
vida de pais de filhos com deficiência. Uma criança com deficiência tem necessidades
especiais que exigem maior apoio, logística e disponibilidade da família.
O projeto “Oficina de Pais/Bolsas de Pais” da Associação Pais-Em-Rede foi concebido
com pais para ajudar outros pais, ou seja, é um projeto centrado na família.
Tem como fim fortalecer os pais, capacitá-los e colocá-los em rede, evitando o seu
isolamento.
Este estudo foi feito no âmbito da avaliação deste projeto, sendo os seus participantes
97 pais da região de Lisboa. Pretende-se analisar o impacto que a participação nos
Grupos de Apoio Emocional (GAE - nível 1) teve nos participantes.
Foram analisadas as necessidades de apoio sentidas pelos pais, as redes de suporte
social e recursos mobilizados na resposta às suas necessidades e o impacto do projeto.
Para a recolha de dados foram utilizados os seguintes instrumentos: (1) um questionário
de caracterização; (2) dois questionários adaptados de Dunst, Trivette e Deal (1988) - a
Escala de Funções de Apoio Social e a Escala de Apoio Social; (3) um questionário
final de avaliação; e (4) uma entrevista semiestruturada.
Verificou-se que há uma percentagem significativa de pais que sentem necessidade de
apoio em aspetos quer de cariz mais emocional quer mais prático. A participação nos
GAE proporcionou aos pais uma experiencia muito positiva, permitindo-lhes encontrar
pares com quem puderam partilhar vivências e experiencias, tendo-se sentido
compreendidos e apoiados. Podemos assim concluir que os GAE proporcionaram um
apoio emocional e instrumental considerável.
The informal and formal support networks are important in promoting the quality of life ofparents of children with disabilities. A disabled child has special needs that require more support and availability of family. The project "Oficinas de Pais/Bolsas de Pais" – Associação Pais-Em-Rede, was designed with parents to help other parents. It is a family-centered project that enables parents, enlarges their informal network, and avoids family isolation. This study was done as part of the project evaluation. The 97 participants were parents from Lisbon county. Its main goal is to analyze the impact that the participation in the Emotional Support Groups (GAE-Level 1) had in participants. We analyzed the support needs experienced by parents, social support networks and resources deployed in response to their needs and the project's impact. For data collection several instruments were used: (1) a characterization questionnaire, (2) two questionnaires adapted from Dunst, Trivette and Deal (1988) - Support Functions Scale and Social Support Scale, (3) a final evaluation questionnaire, and (4) a semi-structured interview. It was found that there is a significant percentage of parents who feel they need support at emotional and practical level. Their participation in the GAE was a very positive experience for parents, enabling them to meet other parents with whom they shared similar experiences and feelings. They felt understood and supported. We can conclude that the GAE provided a strong instrumental and emotional support.
The informal and formal support networks are important in promoting the quality of life ofparents of children with disabilities. A disabled child has special needs that require more support and availability of family. The project "Oficinas de Pais/Bolsas de Pais" – Associação Pais-Em-Rede, was designed with parents to help other parents. It is a family-centered project that enables parents, enlarges their informal network, and avoids family isolation. This study was done as part of the project evaluation. The 97 participants were parents from Lisbon county. Its main goal is to analyze the impact that the participation in the Emotional Support Groups (GAE-Level 1) had in participants. We analyzed the support needs experienced by parents, social support networks and resources deployed in response to their needs and the project's impact. For data collection several instruments were used: (1) a characterization questionnaire, (2) two questionnaires adapted from Dunst, Trivette and Deal (1988) - Support Functions Scale and Social Support Scale, (3) a final evaluation questionnaire, and (4) a semi-structured interview. It was found that there is a significant percentage of parents who feel they need support at emotional and practical level. Their participation in the GAE was a very positive experience for parents, enabling them to meet other parents with whom they shared similar experiences and feelings. They felt understood and supported. We can conclude that the GAE provided a strong instrumental and emotional support.
Description
Dissertação de Mestrado apresentada ao ISPA - Instituto Universitário
Keywords
Rede de apoio formal e informal Suporte social Capacitação Coresponsabilização Formal and informal support network Social support Enabling and empowerment experiences