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Estudio sobre el Respeto al Principio de la Autonom??a en Ni??os y/o Adolescentes, bajo Tratamiento Oncol??gico Experimental, a trav??s del Proceso de Obtenci??n del Consentimiento Libre y Esclarecido

By V??nia Maria Fernandes Teixeira and Marlene Braz

Abstract

O presente estudo se prop??s a analisar o respeito ao princ??pio da autonomia em crian??as e/ou adolescentes, sob tratamento oncol??gico experimental, atrav??s do processo de obten????o do Termo de Consentimento Livre e Esclarecido (TCLE), para fins de pesquisa, por meio de um estudo de casos, de car??ter explorat??rio, de cunho qualitativo. Os dados foram obtidos atrav??s de entrevistas tem??ticas e interpretados pela an??lise indici??ria. Foram entrevistados: tr??s crian??as, um adolescente, quatro pesquisadores e quatro m??es. Os resultados mostraram que a autonomia, mesmo relativa, da crian??a e/ou adolescente, n??o ?? levada em considera????o, o que se traduz pela n??o obten????o do TCLE, uma vez que os pais e pesquisadores acreditam que essas crian??as e/ou adolescentes n??o s??o capazes de entender os riscos e benef??cios da pesquisa. Neste sentido, a decis??o dos pais, em permitir a participa????o da crian??a e/ou adolescente nesse tratamento experimental, foi baseada na esperan??a de cura para o filho e, por isso, s??o eles quem assinam o TCLE. Tanto pesquisadores quanto os respons??veis n??o consultaram a crian??a e/ou adolescente sobre o tratamento proposto. As decis??es de sa??de na inf??ncia e adolesc??ncia dependem dos adultos; contudo, esse grupo foi considerado competente e capaz de decidir situa????es rotineiras em fam??lia. Por outro lado, as crian??as e/ou adolescentes sabiam de suas condi????es de sa??de e identificaram a possibilidade da pesquisa/tratamento n??o lhes trazer benef??cios, haja vista a conviv??ncia com a realidade da morte de outras crian??as, na enfermaria, que sofreram o mesmo tratamento.This study aimed to analyze the respect for the principle of autonomy concerning children and/or adolescents under experimental oncology treatment by obtaining Informed Consent, for research purposes, through an exploratory and qualitative study case. The data were obtained through thematic interviews and interpreted by clue analyses. Three children, an adolescent, four researchers and four mothers were interviewed. The results showed that children and/or adolescents??? autonomy, even if relative, is not taken into consideration, which may be understood when the informed consent is not signed, since parents and researchers believe these children and/or adolescents are not able to understand the risks and benefits of the research. From this perspective, the parents??? decision to allow the children and/or adolescents to participate in this experimental treatment was based on the hope of their children???s cure and that is why they signed the informed consent. Neither researchers nor parents talked to the children and/or adolescents about the treatment proposed. Decisions on health during childhood and adolescence periods depend on adults; however, this group was considered competent and able to decide on routine situations in family. On the other hand, the children and/or adolescents were aware of their health conditions and of the research/treatment???s possible lack of benefits, considering they have witnessed the deaths of other children, who underwent the same treatment in the ward

Topics: Crian??a, Adolescente, Autonomia Pessoal, Consentimento Esclarecido, Epidemiologia Experimental, T??cnicas de Apoio para a Decis??o, Child, Adolescent, Personal Autonomy, Informed Consent, Epidemiology Experimental, Decision Support Techniques, Ni??o, Adolescente, Autonom??a Personal, Consentimiento Informado, Epidemiolog??a Experimental, T??cnicas de Apoyo para la Decisi??n, Enfermagem Oncol??gica, Oncologia
Year: 2010
OAI identifier: oai:agregador.ibict.br.RI_FIOCRUZ:oai:localhost:icict/3701
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