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Advisor(s)
Abstract(s)
A existência de pessoas em situação de sofrimento decorrente de doença grave ou incurável, em fase avançada e progressiva é a razão de ser dos cuidados paliativos. Estes são prestados por equipas especializadas que trabalham em estreita articulação com doentes e famílias e têm como objetivo central a promoção do bem-estar e qualidade de vida do doente. O presente estudo teve como objetivo caracterizar o bem-estar do doente paliativo segundo a perspetiva dos principais agentes de cuidados paliativos. Participaram no estudo 74 doentes, 83 famílias e 78 profissionais de saúde recrutados em quatro unidades/serviços de cuidados paliativos de diferentes regiões do país. Tratou-se de um estudo transversal e exploratório que seguiu uma metodologia descritivo-correlacional de comparação entre grupos. Para descrever e analisar as relações intra e inter-grupos, no que concerne ao nível de bem-estar e aos fatores preponderantes para o maximizar, foram utilizados um item de avaliação global do bem-estar e uma questão referente ao grau de importância de nove fatores identificados por doentes, famílias e profissionais de saúde como importantes ao fim de vida. Foram encontradas diferenças estatisticamente significativas entre os grupos nas duas medidas. Doente e família observam o nível de bem-estar como razoável e avaliam de forma semelhante a maioria dos fatores importantes para o maximizar. Os profissionais de saúde apreciam-nos de forma distinta. Conclui-se que a família é capaz de reportar a perspetiva do doente acerca do seu próprio bem-estar, podendo substituí-lo quando não for possível obter o seu autorrelato. Há uma necessidade de promover o bem-estar do doente seguido em cuidados paliativos. Os profissionais de saúde desempenham um papel fundamental nesta tarefa mas precisam esforçar-se mais por entender a perspetiva do doente.
Palliative care exists due to the people who suffer from a serious or incurable illness in an advanced and progressive state. They are provided by a specialized team that works closely with patients and families, whose central objective is to improve the patient’s well-being and quality of life. The present study aimed to characterize the palliative patient well-being according to the perspectives of the main palliative care agents. The participants were 74 patients, 83 families and 78 health care practitioners recruited in four palliative care units/services from different regions of the country. It’s an exploratory, cross-sectional study with a descriptive-correlational and between groups comparison method. A single item of global well-being and a question concerning the degree of importance of nine factors identified by patients, families and health care practitioners as important to the end of life were used to assess and compare the perspectives of the patient’s level of well-being and the factors considered important for its enhancement. There were statistically significant differences between the groups in both measures. Patient and family observed the level of well-being as reasonable and evaluated similarly most of the factors. Health care practitioners perceived them in a different way. It is concluded that family is able to report the patient’s perspective about their own well-being and therefore serve as surrogates when the patient is incapable of providing self-reports. There is a need for improvement in the well-being of patients followed by palliative care programs. Health care practitioners play a key role in this task but they must be more committed in the understanding of patient’s perspective.
Palliative care exists due to the people who suffer from a serious or incurable illness in an advanced and progressive state. They are provided by a specialized team that works closely with patients and families, whose central objective is to improve the patient’s well-being and quality of life. The present study aimed to characterize the palliative patient well-being according to the perspectives of the main palliative care agents. The participants were 74 patients, 83 families and 78 health care practitioners recruited in four palliative care units/services from different regions of the country. It’s an exploratory, cross-sectional study with a descriptive-correlational and between groups comparison method. A single item of global well-being and a question concerning the degree of importance of nine factors identified by patients, families and health care practitioners as important to the end of life were used to assess and compare the perspectives of the patient’s level of well-being and the factors considered important for its enhancement. There were statistically significant differences between the groups in both measures. Patient and family observed the level of well-being as reasonable and evaluated similarly most of the factors. Health care practitioners perceived them in a different way. It is concluded that family is able to report the patient’s perspective about their own well-being and therefore serve as surrogates when the patient is incapable of providing self-reports. There is a need for improvement in the well-being of patients followed by palliative care programs. Health care practitioners play a key role in this task but they must be more committed in the understanding of patient’s perspective.
Description
Keywords
Cuidados paliativos Palliative care