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"Na sombra da doença" : um estudo exploratório com irmãos de crianças em cuidados paliativos
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O presente estudo pretendeu contribuir para uma compreensão aprofundada da experiência psicológica da doença crónica paliativa na fratria em idade escolar. Especificamente, esta investigação explorou a compreensão da doença, a representação do irmão doente, o impacto emocional da experiência, a ocupação de tempos livres e as responsabilidades associadas, as perspectivas sobre o futuro e a relação fraterna. A amostra foi constituída por 7 famílias de crianças que necessitam de cuidados paliativos, tendo 6 mães e 1 avó preenchido um questionário sócio-demográfico online. Seguiu-se a participação de 9 irmãos saudáveis, com idades compreendidas entre os 6 e os 9 anos. Estes foram entrevistados, sob a forma de uma história infantil ilustrada, e elaboraram uma narrativa baseada no seu desenho sobre a fratria. Os resultados mostraram que estas crianças apresentam uma compreensão limitada e simplificada da doença do irmão, a par com a vontade de estarem envolvidas no seu cuidado. Quanto à representação do irmão, destacam tanto o sentido de normalidade que a doença pode assumir, como de diferença; e atribuem-lhe características positivas. As suas vivências emocionais integram a alegria, a tristeza, a preocupação, o medo, a empatia e a autonomia. Os tempos livres são ocupados maioritariamente com hobbies e as rotinas familiares em casa. São referidas as dinâmicas escolares e a socialização com os pares como recursos protectores. Verifica-se hesitação em falar sobre o futuro e um foco contínuo no irmão doente, assegurando o seu bem-estar. A relação fraterna é caracterizada pela sua afectividade e pela brincadeira. Existe ainda a vontade constante de agradar o irmão doente. Por assumir uma natureza descritivo-exploratória, emergiram também resultados no âmbito das dinâmicas familiares e da fratria imaginária. As crianças destacam a coesão familiar e o orgulho que sentem na família, bem como a interacção com a família nuclear. Por outro lado, manifestam o desejo dos seus irmãos doentes serem saudáveis. Por fim, são apresentadas as limitações do estudo, bem como sugestões para investigações futuras. O presente estudo salienta, assim, a importância do conhecimento aprofundado das especificidades do processo de adaptação à doença, por parte dos irmãos saudáveis. Retiram-se implicações para a intervenção psicológica desta população.
The present study aimed to contribute to an in-depth understanding of the chronic palliative disease psychological experience in school-age fraternity. Specifically, this investigation explored the understanding of the disease, the representation of the sick sibling, the emotional impact of the experience, the occupation of leisure time and associated responsibilities, the prospects about the future and the fraternal relationship. The sample consisted of 7 families of children in need of palliative care, from which 6 mothers and 1 grandmother filled out an online socio-demographic questionnaire. This was followed by the participation of 9 healthy siblings, aged between 6 and 9 years. These were interviewed in the form of an illustrated children's story, and elaborated a narrative based on their drawing on fraternity. The results showed that these children present a limited and simplified understanding of the sibling's illness, along with the desire to be involved in their care. As for the representation of the brother, they emphasize both the sense of normality that the disease can assume, and of difference. It is also verified the attribution of positive characteristics to it. Their emotional experiences integrate joy, sadness, worry, fear, empathy and autonomy. Leisure time is mostly occupied with hobbies and family routines at home. School dynamics and socialization with peers are referred to as protective resources. There is hesitation when talking about the future and a continued focus on the sick brother, ensuring his well-being. The fraternal relationship is characterized by their affectivity and playfulness. There is also a constant desire to please the sick brother. By assuming a descriptive-exploratory nature, results also emerged within the framework of family dynamics and imaginary fraternity. Children emphasize family cohesion and pride in the family, as well as interaction with the nuclear family. On the other hand, they manifest the desire of their sick brothers to be healthy. Finally, the limitations of the study are presented, as well as suggestions for future research. The present study thus highlights the importance of an in-depth understanding of the specificities of the adaptation process to the disease, by the healthy siblings. Implications for the psychological intervention of this population are drawn.
The present study aimed to contribute to an in-depth understanding of the chronic palliative disease psychological experience in school-age fraternity. Specifically, this investigation explored the understanding of the disease, the representation of the sick sibling, the emotional impact of the experience, the occupation of leisure time and associated responsibilities, the prospects about the future and the fraternal relationship. The sample consisted of 7 families of children in need of palliative care, from which 6 mothers and 1 grandmother filled out an online socio-demographic questionnaire. This was followed by the participation of 9 healthy siblings, aged between 6 and 9 years. These were interviewed in the form of an illustrated children's story, and elaborated a narrative based on their drawing on fraternity. The results showed that these children present a limited and simplified understanding of the sibling's illness, along with the desire to be involved in their care. As for the representation of the brother, they emphasize both the sense of normality that the disease can assume, and of difference. It is also verified the attribution of positive characteristics to it. Their emotional experiences integrate joy, sadness, worry, fear, empathy and autonomy. Leisure time is mostly occupied with hobbies and family routines at home. School dynamics and socialization with peers are referred to as protective resources. There is hesitation when talking about the future and a continued focus on the sick brother, ensuring his well-being. The fraternal relationship is characterized by their affectivity and playfulness. There is also a constant desire to please the sick brother. By assuming a descriptive-exploratory nature, results also emerged within the framework of family dynamics and imaginary fraternity. Children emphasize family cohesion and pride in the family, as well as interaction with the nuclear family. On the other hand, they manifest the desire of their sick brothers to be healthy. Finally, the limitations of the study are presented, as well as suggestions for future research. The present study thus highlights the importance of an in-depth understanding of the specificities of the adaptation process to the disease, by the healthy siblings. Implications for the psychological intervention of this population are drawn.
Descrição
Tese de mestrado, Psicologia (Secção de Psicologia Clínica e da Saúde, Núcleo de Psicologia Clínica Sistémica), Universidade de Lisboa, Faculdade de Psicologia, 2017
Palavras-chave
Cuidados paliativos Crianças Doença Irmãos Família Teses de mestrado - 2017