RESUMO
BACKGROUND: Despite recent developments aimed at creating international guidelines for ethical global health research, critical disconnections remain between how global health research is conducted in the field and the institutional ethics frameworks intended to guide research practice. DISCUSSION: In this paper we attempt to map out the ethical tensions likely to arise in global health fieldwork as researchers negotiate the challenges of balancing ethics committees' rules and bureaucracies with actual fieldwork processes in local contexts. Drawing from our research experiences with an implementation and evaluation project in Jamaica, we argue that ethical research is produced through negotiated spaces and reflexivity practices that are centred on relationships between researchers and study participants and which critically examine issues of positionality and power that emerge at multiple levels. In doing so, we position ethical research practice in global health as a dialectical movement between the spoken and unspoken, or, more generally, between operationalized rules and the embodied relational understanding of persons. Global health research ethics should be premised not upon passive accordance with existing guidelines on ethical conduct, but on tactile modes of knowing that rely upon being engaged with, and responsive to, research participants. Rather than focusing on the operationalization of ethical practice through forms and procedures, it is crucial that researchers recognize that each ethical dilemma encountered during fieldwork is unique and rooted in social contexts, interpersonal relationships, and personal narratives.
Assuntos
Ética em Pesquisa , Saúde Global , Jamaica , Avaliação de Programas e Projetos de Saúde , Projetos de PesquisaRESUMO
This paper presents the process of translation and cultural adaptation into Portuguese of the McGill Illness Narrative Interview - MINI, an interview protocol that is used to research meanings and modes of narrating illness experiences, tested, in the Brazilian context, for psychiatric and cancer-related problems. Two translations and their respective back-translations were developed. In addition, semantic equivalence was evaluated, a synthesis version and a final version were prepared, and two pre-tests were administered to the target populations (people with auditory verbal hallucinations or breast cancer). A high degree of semantic equivalence was found between the original instrument and the translation/back-translation pairs, and also in the perspective of referential and general meanings. The semantic and operational equivalence of the proposed modifications was confirmed in the pre-tests. Therefore, the first adaptation of an interview protocol that elicits the production of narratives about illness experiences has been provided for the Brazilian context.
Assuntos
Entrevistas como Assunto , Narração , Características Culturais , Humanos , TraduçõesRESUMO
Resumo Este artigo apresenta o processo de tradução e adaptação cultural para o português da McGill Illness Narrative Interview – MINI, um modelo de entrevista para a pesquisa dos sentidos e dos modos de narrar a experiência do adoecimento, testada, no contexto brasileiro, para os problemas psiquiátricos e os relacionados ao câncer. Foram realizadas duas traduções e respectivas retraduções, avaliada a equivalência semântica, elaboradas versões síntese e final e dois pré-testes nas populações-alvo (pessoas com alucinações auditivas verbais ou câncer de mama). Foi observado um grau elevado de equivalência semântica entre o instrumento original e os pares de tradução-retradução e da perspectiva dos significados referencial e geral. A equivalência semântica e operacional das modificações propostas foram confirmadas nos pré-testes. Disponibilizou-se para o contexto brasileiro a primeira adaptação de um modelo de entrevista que possibilita a produção de narrativas sobre a experiência de adoecimento.
Abstract This paper presents the process of translation and cultural adaptation into Portuguese of the McGill Illness Narrative Interview – MINI, an interview protocol that is used to research meanings and modes of narrating illness experiences, tested, in the Brazilian context, for psychiatric and cancer-related problems. Two translations and their respective back-translations were developed. In addition, semantic equivalence was evaluated, a synthesis version and a final version were prepared, and two pre-tests were administered to the target populations (people with auditory verbal hallucinations or breast cancer). A high degree of semantic equivalence was found between the original instrument and the translation/back-translation pairs, and also in the perspective of referential and general meanings. The semantic and operational equivalence of the proposed modifications was confirmed in the pre-tests. Therefore, the first adaptation of an interview protocol that elicits the production of narratives about illness experiences has been provided for the Brazilian context.
Assuntos
Humanos , Entrevistas como Assunto , Narração , Traduções , Características CulturaisRESUMO
We explored the experiences of Ashkenazi Jewish and French Canadian women and meanings attributed to their hereditary breast and ovarian cancer (HBOC) risk. We purposively sampled 40 BRCA1 or BRCA2 (BRCA) mutation carriers and conducted theoretically driven semistructured interviews. According to content analysis, participants from these two ethnocultural groups held divergent meanings associated with being a BRCA carrier and different views pertaining to the illness experience and risk awareness. All participants identified a genetic basis; however, the French Canadian women also expressed other causes. The French Canadian women reported not knowing other carriers in their social environment, whereas the Ashkenazi Jewish women emphasized a strong sense of community contributing to their ethnic risk awareness. Based on these findings, we suggest that French Canadian women could benefit from greater awareness of the HBOC genetic risk and that health care providers should consider ethnically related and individual-based experiences and meanings during counseling.
Assuntos
Proteína BRCA1/genética , Proteína BRCA2/genética , Neoplasias da Mama/genética , Neoplasias da Mama/enfermagem , Comparação Transcultural , Judeus/genética , Judeus/psicologia , Neoplasias Ovarianas/genética , Neoplasias Ovarianas/enfermagem , População Branca/genética , Adulto , Idoso , Conscientização , Neoplasias da Mama/psicologia , Feminino , Triagem de Portadores Genéticos , Aconselhamento Genético/psicologia , Comportamentos Relacionados com a Saúde , Heterozigoto , Humanos , Entrevista Psicológica , Pessoa de Meia-Idade , Neoplasias Ovarianas/psicologia , Quebeque , Medição de Risco , Identificação Social , População Branca/psicologiaRESUMO
This paper wishes to contribute to the debate around citizen participation in health system decision-making that has been present internationally for the last 30 years. I argue that if we aim to change health inequalities, health professionals and planners need to understand the illness and health service experience of citizens. The concept of 'health citizenship' introduced here refers to health knowledge that integrates the lay knowledge of patients and that this integration is translated into health actions such as clinical communication and the planning of health care, programs, and policy. We illustrate our argument with the two cases: health literacy and the promotion of breastfeeding in a Canadian population living in context of poverty. This paper then concludes by addressing the leadership role, Brazilian graduate nursing schools can play in promoting 'health citizenship' and by doing so, contribute to fight health inequalities.
Este trabalho pretende contribuir para o debate em torno da participação do cidadão na tomada de decisão do sistema de saúde que está presente no âmbito internacional nos últimos trinta anos. Defende-se que, se pretendem mudar as desigualdades na saúde, os profissionais e planejadores da saúde precisam compreender a experiência dos cidadãos com a doença e os serviços de saúde. O conceito de "cidadania em saúde", aqui introduzido, se refere ao conhecimento em saúde que integra o conhecimento leigo de pacientes e que essa integração se traduz em ações de saúde, como comunicação clínica e planejamento de cuidados, programas e políticas de saúde. O argumento é ilustrado com dois casos: o letramento em saúde e a promoção da amamentação materna em uma população canadense que vivem em contexto de pobreza. Em seguida, conclui-se, abordando o papel de liderança que os cursos de pós-graduação em enfermagem no Brasil podem desempenhar na promoção da "cidadania em saúde " e, assim fazendo, contribuir para combater as desigualdades na saúde.
Este trabajo pretende contribuir al debate en torno a la participación ciudadana en la toma de decisiones del sistema de salud que ha estado presente a nivel internacional durante los últimos 30 años. Sostenga-se que, si queremos cambiar las desigualdades en salud, profesionales y planificadores de la salud deben comprender la experiencia de los ciudadanos con la enfermedad y los servicios de salud. El concepto de "ciudadanía en salud", aquí introducido, se refiere al conocimiento de la salud que integra el conocimiento laico de los pacientes y que esta integración se traduce en acciones de salud, tales como la comunicación clínica y la planificación del cuidado, programas y políticas de salud. El argumento es ilustrado con dos casos: la educación para la salud y la promoción de la lactancia materna en una población de Canadá que vive en el contexto de la pobreza. Se concluye tratando el papel de liderazgo que los cursos de postgrado en enfermería de Brasil pueden desempeñar en la promoción de la "ciudadanía en salud" y, al hacerlo, contribuyir a luchar contra las desigualdades en salud.
Assuntos
Humanos , Letramento em Saúde , Promoção da Saúde , Disparidades nos Níveis de Saúde , Brasil , Canadá , Liderança , Escolas de EnfermagemRESUMO
This paper wishes to contribute to the debate around citizen participation in health system decision-making that has been present internationally for the last 30 years. I argue that if we aim to change health inequalities, health professionals and planners need to understand the illness and health service experience of citizens. The concept of 'health citizenship' introduced here refers to health knowledge that integrates the lay knowledge of patients and that this integration is translated into health actions such as clinical communication and the planning of health care, programs, and policy. We illustrate our argument with the two cases: health literacy and the promotion of breastfeeding in a Canadian population living in context of poverty. This paper then concludes by addressing the leadership role, Brazilian graduate nursing schools can play in promoting 'health citizenship' and by doing so, contribute to fight health inequalities.
Assuntos
Letramento em Saúde , Promoção da Saúde , Disparidades nos Níveis de Saúde , Brasil , Canadá , Humanos , Liderança , Escolas de EnfermagemRESUMO
O ensino-aprendizagem integra o Método Mãe Canguru (MMC) brasileiro para promover as habilidades maternas na amamentação de bebês prematuros ou baixo peso. Por desconhecermos se o que foi ensinado integrou o círculo interno da família, nosso objetivo foi analisar como esse conhecimento sobre amamentação exclusiva foi incorporado no contexto dos domicílios. A pesquisa participante aconteceu no domicilio de 11 grupos de mães, familiares e vizinhos. O saber local dos vizinhos e familiares substituiu o conhecimento ensinado à mãe no MMC e mudou a alimentação desses bebês. A educação em saúde deve estenderse para além do hospital e incluir os familiares e pessoas significativas.
Assuntos
Humanos , Feminino , Recém-Nascido , Lactente , Aleitamento Materno , Cuidado Pós-Natal/tendências , Enfermagem Pediátrica/tendências , Recém-Nascido Prematuro , Saúde da CriançaRESUMO
This study focuses on Brazilian mothers who gave birth to premature babies who were discharged from hospital using the Kangaroo Mother Care Method. While mothers left the hospital breastfeeding exclusively, once back at home, they abandoned exclusive breastfeeding because of insufficient breast milk (IBM). In this project we explored how IBM was interpreted by mothers within their social context. Participatory research using the Creative Sensitive Method was done in the homes of mothers with family members and neighbours. We described the conflicting social discourse that influenced the mothers' perception of IBM and explored their sources of distress. At the hospital and Kangaroo ward, mothers considered that clinicians recognized they were experiencing IBM and thus supported them to overcome this problem. Back at home and in their community, other sources of stress generated anxiety such as: the lack of outpatient clinical support, and conflicting local norms to care and feed premature babies. These difficulties combined with economic constraints and discontinuity in models of health care led mothers to lose confidence in their breastfeeding capacity. Mothers, thus, rapidly replaced exclusive breastfeeding by mixed feeding or formula feeding. Our analysis suggests that IBM in our sample was the result of a socio-somatic process. Recommendations are proposed to help overcome IBM and corresponding contextual barriers to exclusive breastfeeding.