Study on the Respect for the Principle of Autonomy Concerning Children and/or Adolescents under Experimental Oncology Treatment through a Term of Informed Consent

Detalhes bibliográficos
Autor(a) principal: Teixeira, Vânia Maria Fernandes
Data de Publicação: 2010
Outros Autores: Braz, Marlene
Tipo de documento: Artigo
Idioma: por
Título da fonte: Revista Brasileira de Cancerologia (Online)
Texto Completo: https://rbc.inca.gov.br/index.php/revista/article/view/1526
Resumo: 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.
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spelling Study on the Respect for the Principle of Autonomy Concerning Children and/or Adolescents under Experimental Oncology Treatment through a Term of Informed ConsentEstudio sobre el Respeto al Principio de la Autonomía en Niños y/o Adolescentes, bajo Tratamiento Oncológico Experimental, a través del Proceso de Obtención del Consentimiento Libre y EsclarecidoEstudo sobre o Respeito ao Princípio da Autonomia em Crianças e/ou Adolescentes sob Tratamento Oncológico Experimental, através do Processo de Obtenção do Consentimento Livre e EsclarecidoCriançaAdolescenteAutonomia PessoalConsentimento EsclarecidoEpidemiologia ExperimentalTécnicas de Apoio para a DecisãoChildAdolescentPersonal AutonomyInformed ConsentEpidemiology, ExperimentalDecision Support TechniquesNiñoAdolescenteAutonomía PersonalConsentimiento InformadoEpidemiología ExperimentalTécnicas de Apoyo para la DecisiónThis 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.El presente estudio propone un análisis del respeto al principio de la autonomía en niños y/o adolescentes, bajo tratamiento oncológico experimental, mediante el proceso de obtención del Término de Consentimiento Libre y Esclarecido (TCLE), para fines de investigación, a través de un estudio de casos, de carácter exploratorio, de cuño cualitativo. Los datos fueron recolectados a través de entrevistas temáticas e interpretados por el análisis indiciario. Fueron entrevistados: tres niños, un adolescente, cuatro investigadores y cuatro madres. Los resultados mostraron que la autonomía, incluso relativa, del niño y/o adolescente no se tiene en cuenta, lo que se traduce en la no obtención del TCLE, puesto que los padres e investigadores creen que estos niños y/o adolescentes no son capaces de comprender los riesgos y beneficios de la investigación. En este sentido, la decisión de los padres para permitir la participación del niño y/o adolescente en ese tratamiento experimental se basa en la esperanza de curación para su hijo y, por lo tanto, son ellos quienes firman el TCLE. Tanto los investigadores como los responsables no consultaron al niño y/o adolescente sobre el tratamiento propuesto. Las decisiones de la salud en la infancia y adolescencia dependen de los adultos; sin embargo, ese grupo fue considerado competente y capaz de decidir situaciones rutineras en familia. Por otro lado, los niños y/o adolescentes sabían de sus condiciones de salud e identificaron la posibilidad de la investigación/tratamiento no traerles beneficios, teniendo en cuenta la convivencia con la realidad de la muerte de otros niños, en la enfermería, que sufrieron el mismo tratamiento.O presente estudo se propôs a analisar o respeito ao princípio da autonomia em crianças e/ou adolescentes, sob tratamento oncológico experimental, através do processo de obtenção do Termo de Consentimento Livre e Esclarecido (TCLE), para fins de pesquisa, por meio de um estudo de casos, de caráter exploratório, de cunho qualitativo. Os dados foram obtidos através de entrevistas temáticas e interpretados pela análise indiciária. Foram entrevistados: três crianças, um adolescente, quatro pesquisadores e quatro mães. Os resultados mostraram que a autonomia, mesmo relativa, da criança e/ou adolescente, não é levada em consideração, o que se traduz pela não obtenção do TCLE, uma vez que os pais e pesquisadores acreditam que essas crianças e/ou adolescentes não são capazes de entender os riscos e benefícios da pesquisa. Neste sentido, a decisão dos pais, em permitir a participação da criança e/ou adolescente nesse tratamento experimental, foi baseada na esperança de cura para o filho e, por isso, são eles quem assinam o TCLE. Tanto pesquisadores quanto os responsáveis não consultaram a criança e/ou adolescente sobre o tratamento proposto. As decisões de saúde na infância e adolescência dependem dos adultos; contudo, esse grupo foi considerado competente e capaz de decidir situações rotineiras em família. Por outro lado, as crianças e/ou adolescentes sabiam de suas condições de saúde e identificaram a possibilidade da pesquisa/tratamento não lhes trazer benefícios, haja vista a convivência com a realidade da morte de outras crianças, na enfermaria, que sofreram o mesmo tratamento.INCA2010-03-31info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionArtigos, Avaliado pelos paresapplication/pdfhttps://rbc.inca.gov.br/index.php/revista/article/view/152610.32635/2176-9745.RBC.2010v56n1.1526Revista Brasileira de Cancerologia; Vol. 56 No. 1 (2010): Jan./Feb./Mar.; 51-59Revista Brasileira de Cancerologia; Vol. 56 Núm. 1 (2010): ene./feb.mar.; 51-59Revista Brasileira de Cancerologia; v. 56 n. 1 (2010): jan./fev./mar.; 51-592176-9745reponame:Revista Brasileira de Cancerologia (Online)instname:Instituto Nacional de Câncer José Alencar Gomes da Silva (INCA)instacron:INCAporhttps://rbc.inca.gov.br/index.php/revista/article/view/1526/921Teixeira, Vânia Maria FernandesBraz, Marleneinfo:eu-repo/semantics/openAccess2021-11-29T20:19:27Zoai:rbc.inca.gov.br:article/1526Revistahttps://rbc.inca.gov.br/index.php/revistaPUBhttps://rbc.inca.gov.br/index.php/revista/oairbc@inca.gov.br0034-71162176-9745opendoar:2021-11-29T20:19:27Revista Brasileira de Cancerologia (Online) - Instituto Nacional de Câncer José Alencar Gomes da Silva (INCA)false
dc.title.none.fl_str_mv Study on the Respect for the Principle of Autonomy Concerning Children and/or Adolescents under Experimental Oncology Treatment through a Term of Informed Consent
Estudio sobre el Respeto al Principio de la Autonomía en Niños y/o Adolescentes, bajo Tratamiento Oncológico Experimental, a través del Proceso de Obtención del Consentimiento Libre y Esclarecido
Estudo sobre o Respeito ao Princípio da Autonomia em Crianças e/ou Adolescentes sob Tratamento Oncológico Experimental, através do Processo de Obtenção do Consentimento Livre e Esclarecido
title Study on the Respect for the Principle of Autonomy Concerning Children and/or Adolescents under Experimental Oncology Treatment through a Term of Informed Consent
spellingShingle Study on the Respect for the Principle of Autonomy Concerning Children and/or Adolescents under Experimental Oncology Treatment through a Term of Informed Consent
Teixeira, Vânia Maria Fernandes
Criança
Adolescente
Autonomia Pessoal
Consentimento Esclarecido
Epidemiologia Experimental
Técnicas de Apoio para a Decisão
Child
Adolescent
Personal Autonomy
Informed Consent
Epidemiology, Experimental
Decision Support Techniques
Niño
Adolescente
Autonomía Personal
Consentimiento Informado
Epidemiología Experimental
Técnicas de Apoyo para la Decisión
title_short Study on the Respect for the Principle of Autonomy Concerning Children and/or Adolescents under Experimental Oncology Treatment through a Term of Informed Consent
title_full Study on the Respect for the Principle of Autonomy Concerning Children and/or Adolescents under Experimental Oncology Treatment through a Term of Informed Consent
title_fullStr Study on the Respect for the Principle of Autonomy Concerning Children and/or Adolescents under Experimental Oncology Treatment through a Term of Informed Consent
title_full_unstemmed Study on the Respect for the Principle of Autonomy Concerning Children and/or Adolescents under Experimental Oncology Treatment through a Term of Informed Consent
title_sort Study on the Respect for the Principle of Autonomy Concerning Children and/or Adolescents under Experimental Oncology Treatment through a Term of Informed Consent
author Teixeira, Vânia Maria Fernandes
author_facet Teixeira, Vânia Maria Fernandes
Braz, Marlene
author_role author
author2 Braz, Marlene
author2_role author
dc.contributor.author.fl_str_mv Teixeira, Vânia Maria Fernandes
Braz, Marlene
dc.subject.por.fl_str_mv Criança
Adolescente
Autonomia Pessoal
Consentimento Esclarecido
Epidemiologia Experimental
Técnicas de Apoio para a Decisão
Child
Adolescent
Personal Autonomy
Informed Consent
Epidemiology, Experimental
Decision Support Techniques
Niño
Adolescente
Autonomía Personal
Consentimiento Informado
Epidemiología Experimental
Técnicas de Apoyo para la Decisión
topic Criança
Adolescente
Autonomia Pessoal
Consentimento Esclarecido
Epidemiologia Experimental
Técnicas de Apoio para a Decisão
Child
Adolescent
Personal Autonomy
Informed Consent
Epidemiology, Experimental
Decision Support Techniques
Niño
Adolescente
Autonomía Personal
Consentimiento Informado
Epidemiología Experimental
Técnicas de Apoyo para la Decisión
description 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.
publishDate 2010
dc.date.none.fl_str_mv 2010-03-31
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
Artigos, Avaliado pelos pares
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv https://rbc.inca.gov.br/index.php/revista/article/view/1526
10.32635/2176-9745.RBC.2010v56n1.1526
url https://rbc.inca.gov.br/index.php/revista/article/view/1526
identifier_str_mv 10.32635/2176-9745.RBC.2010v56n1.1526
dc.language.iso.fl_str_mv por
language por
dc.relation.none.fl_str_mv https://rbc.inca.gov.br/index.php/revista/article/view/1526/921
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv INCA
publisher.none.fl_str_mv INCA
dc.source.none.fl_str_mv Revista Brasileira de Cancerologia; Vol. 56 No. 1 (2010): Jan./Feb./Mar.; 51-59
Revista Brasileira de Cancerologia; Vol. 56 Núm. 1 (2010): ene./feb.mar.; 51-59
Revista Brasileira de Cancerologia; v. 56 n. 1 (2010): jan./fev./mar.; 51-59
2176-9745
reponame:Revista Brasileira de Cancerologia (Online)
instname:Instituto Nacional de Câncer José Alencar Gomes da Silva (INCA)
instacron:INCA
instname_str Instituto Nacional de Câncer José Alencar Gomes da Silva (INCA)
instacron_str INCA
institution INCA
reponame_str Revista Brasileira de Cancerologia (Online)
collection Revista Brasileira de Cancerologia (Online)
repository.name.fl_str_mv Revista Brasileira de Cancerologia (Online) - Instituto Nacional de Câncer José Alencar Gomes da Silva (INCA)
repository.mail.fl_str_mv rbc@inca.gov.br
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