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Publication
Relação entre stress parental e as funções de apoio em famílias de crianças com doenças raras
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Advisor(s)
Abstract(s)
O presente trabalho de investigação intitulado “Relação entre o stress parental e as funções de apoio em famílias de crianças com doenças raras”, pretende contribuir para uma melhor compreensão da relação entre stress parental e as funções de apoio social, analisando a percepção sobre a utilidade de disponibilidade das diversas fontes de apoio social da sua rede de apoios e a percepção de stress nos domínios pais, interação e criança.
Deste modo, foram estabelecidos os seguintes objectivos: 1) Identificar os níveis de stress parental das famílias de crianças com doenças raras; (2) Aferir a perceção das famílias sobre a utilidade e disponibilidade das diversas fontes de apoio social da sua rede de apoio; (3) Relacionar os níveis de stress das famílias com perceção sobre funções de apoio social.
Participaram no estudo 14 famílias de crianças cm doenças raras (com idades entre 6 e 17 anos).
Foi aplicado um questionário sociodemográfico, o Índice de Stress Parental (ISP), versão reduzida (Santos 2008) e a Escala de avaliação do apoio social à família, traduzida por Brandão e adaptada por Brandão e Xavier (1997, por Brandão 1999) do original Family Support Scale dos autores (Dunst, Jenkins & Trivette, 1984), a catorze famílias de crianças com doenças raras.
Os resultados deste estudo demonstram que as famílias que percecionam níveis mais elevados de Stress tem menor perceção do apoio dispensado por parte dos membros das redes informais e dos grupos de profissionais da sua rede de apoio social.
Podemos salientar que um maior apoio proporcionado por parte das redes de apoio social, é importante para a diminuição dos níveis de stress percecionados em pais de crianças com doenças raras.
Apesar das limitações da investigação, sobretudo devidas ao número limitado de famílias que constituíram amostra, os resultados podem ser motivo para futuros estudos e sobretudo para a orientação de profissionais a trabalhar com famílias de com doença rara.
This research document titled “Relationship between parental stress and support functions in children with rare diseases, “aims to contribute to a better understanding of the relationship between parental stress and social support functions, analyzing the perception of the usefulness of availability of different sources of social support from their support network and perception of stress in parent domains, interaction and child. The objectives of the study were: 1) Identify of parental stress of families of children with rare diseases (2) assess the perception of households about the usefulness and availability of different sources of social support from their support network; (3) relate the stress levels of families with perception about the functions of social support. The investigational protocol included a socio-demographic characterization questionnaire, the instrument Parental stress Index (Santos, 2008), and the scale of social support to the family, translated and adapted by Brandão and Xavier (1997, by Brandão 1999) of the original Family Support the authors Scale (Dunst, Jenkins & Trivette, 1984), the fourteen families of children with rare diseases. This study involved a sample of 14 families which children have rare diseases (aged 6 to 17 years). The results of this study demonstrate that families perceive higher levels of stress have lower perceptions of the support provided by the members of informal networks and professional groups of your social support network. We emphasize that greater support provided by the social support networks, it is important to reduce the levels of perceived stress in parents of children with rare diseases. Despite the limitations of the research, especially due to the limited number of families that constituted the sample, the results may be cause for future studies and especially for the guidance of professionals working with families with rare disease.
This research document titled “Relationship between parental stress and support functions in children with rare diseases, “aims to contribute to a better understanding of the relationship between parental stress and social support functions, analyzing the perception of the usefulness of availability of different sources of social support from their support network and perception of stress in parent domains, interaction and child. The objectives of the study were: 1) Identify of parental stress of families of children with rare diseases (2) assess the perception of households about the usefulness and availability of different sources of social support from their support network; (3) relate the stress levels of families with perception about the functions of social support. The investigational protocol included a socio-demographic characterization questionnaire, the instrument Parental stress Index (Santos, 2008), and the scale of social support to the family, translated and adapted by Brandão and Xavier (1997, by Brandão 1999) of the original Family Support the authors Scale (Dunst, Jenkins & Trivette, 1984), the fourteen families of children with rare diseases. This study involved a sample of 14 families which children have rare diseases (aged 6 to 17 years). The results of this study demonstrate that families perceive higher levels of stress have lower perceptions of the support provided by the members of informal networks and professional groups of your social support network. We emphasize that greater support provided by the social support networks, it is important to reduce the levels of perceived stress in parents of children with rare diseases. Despite the limitations of the research, especially due to the limited number of families that constituted the sample, the results may be cause for future studies and especially for the guidance of professionals working with families with rare disease.
Description
Projecto de Graduação apresentado à Universidade Fernando Pessoa como parte dos requisitos para obtenção do grau de Licenciada em Reabilitação Psicomotora
Keywords
Doenças raras Funções de apoio Stress parental Família Doenças raras Parental stress Support functions Family Rare diseases