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Advisor(s)
Abstract(s)
A importância das pesquisas realizadas com seres
humanos, na conquista de conhecimentos em saúde, pode ser
considerada relevante. Muitos são os estudos que têm como
participantes pessoas com deficiências ou seus cuidadores
familiares ou profissionais. Todo este avanço científico suscita
também o crescimento de questionamentos éticos implícitos a
estes estudos. O objetivo deste trabalho foi verificar como os
princípios éticos e bioéticos, pelos quais se pautam os Comitês
de Ética em Pesquisa com seres humanos, se apresentam nas
pesquisas realizadas em instituições que prestam atendimento
às pessoas com deficiências, situadas na cidade do Porto,
Portugal. Método: estudo descritivo de abordagem qualitativa,
realizado a partir de entrevistas semiestruturadas, que foram
gravadas e transcritas, sendo os dados coletados posteriormente categorizados. Participaram do estudo os
cuidadores principais de pessoas com deficiências e gestores
institucionais. Ambos os grupos já haviam participado de
algum projeto de pesquisa há pelo menos três anos.
Resultados: a maioria dos cuidadores entrevistados
não obteve feedback acerca dos resultados obtidos nos estudos
nos quais participaram e também não conseguiram identificar
potenciais benefícios/prejuízos destas pesquisas para eles, para
as pessoas com deficiência ou as instituições. Os mesmos
achados são evidenciados nos dados obtidos junto aos gestores
institucionais.
Conclusão: o princípio de autonomia foi observado
nestas pesquisas, porém, o princípio de beneficência
(benefício), ou seja, fazer o bem em prol dos participantes,
parece ser menos enfatizado, podendo sugerir um deficit no
comprometimento e observância dos princípios éticos por
parte dos pesquisadores junto a estes grupos, que podem ser
considerados vulneráveis. Políticas de prevenção contra estas
„abordagens‟ devem ser estimuladas, de forma a que os
benefícios dos estudos sejam também dados a conhecer e
direcionados quer para os participantes, quer para as respetivas
instituições que estiveram envolvidas nesses estudos.
The importance of research involving human beings, the achievement of health knowledge, can be considered relevant. There are many studies whose participants disabled persons or their family members or professional caregivers. All this scientific advance also raises the growth of ethical questions implied by these studies. The objective of this study was to evaluate how ethical and bioethical principles, which guided the ethics in research with human beings, they are found in research conducted in institutions that provide care to disabled persons, located in Porto, Portugal. Method: descriptive study of qualitative approach, realized from semi structured interviews, which were recorded and transcribed, and the data collected later categorized. Study participants were the main caregivers of disabled persons and institutional managers. Both groups had already participated in a research project for at least three years.Results: Most of the caregivers interviewed did not get feedback on the results obtained in the studies in which they have participated and also failed to identify potential benefits / losses of this research for them, disabled people or institutions. The same findings are evident in the data obtained from the institutional managers. Conclusion: the principle of autonomy was observed in these research, however, the principle of beneficence (benefit) – to do good on behalf of the participants –, it appears to be less stressed, and may suggest a deficit in commitment and observance of ethical principles by researchers together these groups, which may be considered vulnerable. Policies for prevention against these 'approaches' should be encouraged, so that the benefits of these studies are also made known and directed either to the participants, or to the respective institutions have been involved in these studies.
The importance of research involving human beings, the achievement of health knowledge, can be considered relevant. There are many studies whose participants disabled persons or their family members or professional caregivers. All this scientific advance also raises the growth of ethical questions implied by these studies. The objective of this study was to evaluate how ethical and bioethical principles, which guided the ethics in research with human beings, they are found in research conducted in institutions that provide care to disabled persons, located in Porto, Portugal. Method: descriptive study of qualitative approach, realized from semi structured interviews, which were recorded and transcribed, and the data collected later categorized. Study participants were the main caregivers of disabled persons and institutional managers. Both groups had already participated in a research project for at least three years.Results: Most of the caregivers interviewed did not get feedback on the results obtained in the studies in which they have participated and also failed to identify potential benefits / losses of this research for them, disabled people or institutions. The same findings are evident in the data obtained from the institutional managers. Conclusion: the principle of autonomy was observed in these research, however, the principle of beneficence (benefit) – to do good on behalf of the participants –, it appears to be less stressed, and may suggest a deficit in commitment and observance of ethical principles by researchers together these groups, which may be considered vulnerable. Policies for prevention against these 'approaches' should be encouraged, so that the benefits of these studies are also made known and directed either to the participants, or to the respective institutions have been involved in these studies.
Description
Keywords
beneficência autonomia pessoal pessoas com deficiências cuidadores ética em pesquisa beneficence personal autonomy disabled persons caregivers ethics research