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Publication
Quando um filho nasce diferente: Importância das redes de suporte social para as famílias de filhos com multideficiência
Abstract(s)
O objetivo deste estudo consistiu em identificar e caracterizar as necessidades dos pais de 32 famílias cujos filhos têm multideficiência, que participaram no 1º nível das Oficinas de Pais – Grupo de Apoio Emocional (GAE), promovido pela Associação Pais-em-Rede.
Relativamente às necessidades identificadas pelos pais, pretendeu-se também analisar, (i), a relação entre algumas características sociodemográficas dos pais e filhos; e (ii) as redes de suporte mobilizadas pelos pais para lhes responder.
Foram usadas a Escala de Funções de Apoio e a Escala de Apoio Social (Dunst, Trivette, & Deal, 1988), aplicadas em dois momentos distintos: Momento I, antes da frequência das famílias nas Oficinas de Pais, e Momento II, no fim das mesmas.
Os resultados sugerem que pais de filhos com multideficiência, evidenciam sobretudo necessidades de apoio emocional, recorrendo maioritariamente às redes de apoio informais para colmatar essas necessidades, com especial destaque para cônjuge/companheiro, pais/sogros e amigos. No entanto as necessidades de ajuda mais técnica também foram bastante evidentes, sendo que, nestes casos, os profissionais e instituições são as redes mais mobilizadas.
De um modo global, o impacto do projeto parece ter sido positivo no bem-estar das famílias que frequentaram as Oficinas de Pais, promovendo a criação de novas amizades, e ampliando as redes de contactos, levando a que o isolamento das famílias diminuísse.
The aim of this study was to identify and characterize the needs of 32 parents of children with multiple disabilities. All the participants had participated in the 1st level of Parent Workshops - Emotional Support Group (ESG), sponsored by the Pais-em-Rede. We also studied the relation between the needs identified by parents with: (i) sociodemographic characteristics of parents and children; and (ii) and support networks mobilized. Support Functions Scale and Social Support Scale (Dunst, Trivette, & Deal, 1988) were used at two different moments: Moment I, before the participation of the parents in ESG, and Moment II, at the end of these workshops. The results suggest that parents of children with multiple disabilities evidence, mostly, emotional support needs and that they mobilize informal support networks with special emphasis on spouse / partner, parents / in-laws and friends. However, technical needs were also evident, in which case, professionals and institutions were the most mobilized networks. Globally, the impact of the project on families that attended the Parent Workshops, appears to have been positive in the families’ wellbeing, promoting the creation of new friendships and expanding networks of contacts, leading to decreasing the isolation of these families.
The aim of this study was to identify and characterize the needs of 32 parents of children with multiple disabilities. All the participants had participated in the 1st level of Parent Workshops - Emotional Support Group (ESG), sponsored by the Pais-em-Rede. We also studied the relation between the needs identified by parents with: (i) sociodemographic characteristics of parents and children; and (ii) and support networks mobilized. Support Functions Scale and Social Support Scale (Dunst, Trivette, & Deal, 1988) were used at two different moments: Moment I, before the participation of the parents in ESG, and Moment II, at the end of these workshops. The results suggest that parents of children with multiple disabilities evidence, mostly, emotional support needs and that they mobilize informal support networks with special emphasis on spouse / partner, parents / in-laws and friends. However, technical needs were also evident, in which case, professionals and institutions were the most mobilized networks. Globally, the impact of the project on families that attended the Parent Workshops, appears to have been positive in the families’ wellbeing, promoting the creation of new friendships and expanding networks of contacts, leading to decreasing the isolation of these families.
Description
Dissertação de Mestrado apresentada no ISPA – Instituto Universitário para obtenção de grau de Mestre na especialidade de Psicologia Educacional
Keywords
Multideficiência Família Necessidades Suporte social Multiple disabilities Family Needs Social support