Patient participation in palliative care decisions: An ethnographic discourse analysis.

The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize decisions that shaped patients' dying trajectories. Discourse analysis encourages awareness of the role of language in either promoting or hindering patient participation in decision-making.

The McGill Illness Narrative Interview - MINI: translation and cross-cultural adaptation into Portuguese. / McGill Entrevista Narrativa de Adoecimento - MINI: tradução e adaptação transcultural para o português.

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.

McGill Entrevista Narrativa de Adoecimento - MINI: tradução e adaptação transcultural para o português / The McGill Illness Narrative Interview - MINI: translation and cross-cultural adaptation into Portuguese

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.

Mixed method exploration of the medical, service-related, and emotional reasons for emergency room visits of older cancer patients.

PURPOSE: When dealing with health issues, older cancer patients are likely to visit emergency rooms (ER), which are known to expose these patients to the risk of adverse outcomes. Little is known about the profile and reasons for such visits. The aim of this study is (1) to describe the profile of elderly cancer patients aged 70 years and older who visited the ER of a regional hospital in Québec, Canada, and (2) to explain the medical reasons and factors determining such visits from the patients' perspective. METHODS: A concurrent mixed method design was used. Descriptive analysis of administrative databases was conducted to describe the socio-demographic, clinical, and service utilization profile of 792 cancer patients aged 70 years and older. Content analysis of 11 semi-structured interviews of a sub-sample was subsequently performed to better understand the experience and meaning these patients attribute to this health behaviour. RESULTS: The sample of 792 older cancer patients made a total of 1572 ER visits. Most visits occurred during the daytime. More than half (53 %) of the patients were discharged, and close to 40 % were hospitalized. The most frequent reasons for consulting were respiratory (15.8 %), digestive (13.4 %), neurological (8.3 %), fever or infection-related (8.3 %), and cardiovascular (8.2 %). Content analysis of the qualitative data suggested that patients made ER visits mostly when other cancer care services were unavailable or because of a serious life-threatening health condition. CONCLUSIONS: The study suggests areas of improvement to prevent ER visits when health issues can be addressed by other care services.

Cultural aspects of healthy BRCA carriers from two ethnocultural groups.

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.

Embodying 'health citizenship' in health knowledge to fight health inequalities / Incorporando 'cidadania em saúde' ao conhecimento de saúde para combater as desigualdades na saúde / Incorporando 'ciudadanía en salud' en el conocimiento de salud para luchar contra las desigualdades en salud

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.

Shared decision-making in palliative care: a systematic mixed studies review using narrative synthesis.

The aim of this study is to synthesize knowledge about the process of shared decision-making (SDM) in palliative care. Medline, EMBASE, CINAHL, PsychInfo, Web of Science were searched with core concepts: shared decisions, patient participation in decision-making, and palliative care. Titles and abstracts were screened according to inclusion criteria (original research, adult patients, Western contexts, decision-making, palliative treatment or setting), yielding 37 articles for analysis. A narrative synthesis was created using the methods of thematic analysis, conceptual mapping, and critical reflection on the synthesis process. Results demonstrate that while a majority of patients want to participate in treatment decisions to some extent, most do not achieve their preferred levels of involvement because decisions are delayed and alternative treatment options are seldom discussed. The literature regarding the process of SDM itself remains scarce in palliative care. Further research is needed in order to better understand the longitudinal, interactive, and interdisciplinary process of decision-making in palliative care.

A prática da amamentação após o método mãe canguru no Rio de Janeiro: a necessidade de educação em saúde e intervenção de Enfermagem no domicílio / Breastfeeding practices after kangaroo mother method in Rio de Janeiro: the necessity for health education and nursing intervention at home / La práctica de amamantar después del Método Mamá Canguro en Río de Janeiro: la necesidad de educación en salud e intervención de enfermería en el domicilio

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.