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Advisor(s)
Abstract(s)
Este estudo surgiu da necessidade de conhecer, ocularmente, em contexto real e, in loco, as reacções/adaptações das famílias às novas “realidades” ocasionadas pelo diagnóstico, sempre imprevisível/incompreensível… de uma doença grave e crónica – a doença oncológica. Esta doença não afecta apenas a criança mas, também, a vida de todos os membros da família, implicando alterações na sua estrutura e aquisição de novos padrões de funcionamento e de Estar, para poder fazer face às novas necessidades da criança e da própria família, mantendo, assim, o seu crescimento. Neste contexto, pretendemos conhecer as dimensões do impacto da doença oncológica da criança, na família e procurar construir um instrumento de avaliação desse choque. Os resultados deste estudo visam contribuir para o desenvolvimento de boas práticas de enfermagem, que possam minimizar o impacto da doença na família. Numa etapa inicial, desenvolvemos um estudo de paradigma quantitativo, exploratório e descritivo com 45 famílias de crianças com doença oncológica, a partir do qual construímos e testamos um instrumento de avaliação do impacto, da doença oncológica, na família. Numa segunda etapa realizámos um estudo correlacionante e preditivo, junto de 128 famílias de crianças com doença oncológica, com o objectivo de conhecer os efeitos que a doença provoca, no seio das mesmas. Na globalidade, os resultados apontam que o impacto da doença, na estrutura familiar e ao nível económico aumenta, em famílias com mais necessidades de apoio de familiares e/ou amigos, com gastos económicos advindos e maior perda de rendimento. Os gastos, acrescidos com a doença, transportes, medicação e algumas especificidades da dieta da criança, implicam um peso significativo no orçamento familiar, agravado pelo facto da maioria dos pais ter de abandonar o emprego, para cuidar da criança doente. Estes gastos económicos interferem na estrutura familiar e no seu funcionamento, o que parece ser atenuado nas famílias mais protegidas pelo suporte social. Constatámos que o suporte social tem um papel determinante na minimização dos danos da doença oncológica, pela relação que assume com as consequências na estrutura familiar, económica e, também, nos irmãos saudáveis. As famílias vêm os enfermeiros como um recurso detentor de informação que os pode ajudar a minimizar o efeito traumático da doença. Neste sentido, os enfermeiros devem agir de forma a aumentar a percepção da necessidade de suporte social às famílias. A enfermagem deve tentar estar direccionada de forma a projectar a família como foco de cuidados, tendo por base todo o seu contexto – familiar, social, económico e cultural, pois é, nesse contexto, que a doença emerge.
This study emerged due the need to deepen the understanding, ocularly, in real context, in loco, of how the families react/adapt to their new “realities” caused by the diagnosis, always unpredictable/uncomprehencible… of a serious and chronic illness - the oncological disease. This disease affects, not only the child, but also the lives of all family members, implying alterations in its structure, and the acquisition of new operating standards and way of living, in order to meet the new needs of the child and the family itself, thus keeping its growth. In this context, we aim to understand to what extent child’s oncological disease impacts the family and seek to create a tool to evaluate the chock. The results of this study aim to contribute to the development of good nursing practices, that can minimize the impact of the disease in the family. At an early stage, we developed a quantitative study, exploratory and descriptive paradigm with 45 families of children suffering from oncological diseases, from which we built and tested an evaluation instrument of the impact of oncologic disease in the family. In a second stage, we performed a correlational and predictive study, with 128 families of children with oncological diseases, in order to know the impact that disease has within them. Overall, the results show that the impact of the disease on family’s structural and economical aspects increases in families most in need of support from relatives and / or friends, with economic increased expenses and greater loss of income. The increased expenses with the disease, transport, medication and some child's diet specificities imply a significant burden on the family budget. Compounded by most parents due to the fact that they have to leave their jobs in order to care a sick child. These economic spending, interfere in the family structure and its behaviour, which appears to be reduced in satisfied families with social support. We noted that social support plays a key role in minimizing the impact of oncological diseases, the relationship that takes with the impact on family structure, economic and healthy siblings. Families see nurses as an information source holder that can help minimize the traumatic effect of the disease. In this sense, nurses should look to an interventions that increase the perception of the need for social support for families, integrating them into care and support. Nursing should aim to be directed to project the family as the focus of the care, based on all its context – family, social, economical and cultural, as it is in this context that the disease emerges.
This study emerged due the need to deepen the understanding, ocularly, in real context, in loco, of how the families react/adapt to their new “realities” caused by the diagnosis, always unpredictable/uncomprehencible… of a serious and chronic illness - the oncological disease. This disease affects, not only the child, but also the lives of all family members, implying alterations in its structure, and the acquisition of new operating standards and way of living, in order to meet the new needs of the child and the family itself, thus keeping its growth. In this context, we aim to understand to what extent child’s oncological disease impacts the family and seek to create a tool to evaluate the chock. The results of this study aim to contribute to the development of good nursing practices, that can minimize the impact of the disease in the family. At an early stage, we developed a quantitative study, exploratory and descriptive paradigm with 45 families of children suffering from oncological diseases, from which we built and tested an evaluation instrument of the impact of oncologic disease in the family. In a second stage, we performed a correlational and predictive study, with 128 families of children with oncological diseases, in order to know the impact that disease has within them. Overall, the results show that the impact of the disease on family’s structural and economical aspects increases in families most in need of support from relatives and / or friends, with economic increased expenses and greater loss of income. The increased expenses with the disease, transport, medication and some child's diet specificities imply a significant burden on the family budget. Compounded by most parents due to the fact that they have to leave their jobs in order to care a sick child. These economic spending, interfere in the family structure and its behaviour, which appears to be reduced in satisfied families with social support. We noted that social support plays a key role in minimizing the impact of oncological diseases, the relationship that takes with the impact on family structure, economic and healthy siblings. Families see nurses as an information source holder that can help minimize the traumatic effect of the disease. In this sense, nurses should look to an interventions that increase the perception of the need for social support for families, integrating them into care and support. Nursing should aim to be directed to project the family as the focus of the care, based on all its context – family, social, economical and cultural, as it is in this context that the disease emerges.
Description
Keywords
Doença Oncologia Criança Família Enfermagem Disease Oncological Child Family Nursing