[The assessment of asbestos exposure of mesothelioma cases registered in Italy: which problems more than thirty years after the birth of the first regional archives]. / La valutazione dell'esposizione ad amianto dei casi di mesotelioma maligno registrati in Italia: quali problematiche a più di trent'anni dalla nascita dei primi archivi regionali.

More than 30 years have passed since the beginning of the epidemiological surveillance of mesothelioma (MM). The Italian National Mesothelioma Register (ReNaM), part of the research department of the National Institute for insurance against industrial injuries (INAIL), has published 7 reports with the description of the cas-es concerning the assessment of diagnoses and exposures to asbestos suffered mainly during working activities but also environmental, in the family premises and during personal activities.Today we are witnessing a reduction in the commitment by some regions which negatively affects those who develop the pathology. Reading the ReNaM reports it emerges, among others, the problem of the delay in reporting new cases which limits the collection of information directly from patients. This contribution, discussing various topics, invites to develop a debate that should allow to update and resolve the critical aspects that arise after decades of activity regarding, in particular, the asbestos exposure assessment. It is the primary interest of the authors to give continuity and improve the ReNaM which remains the most prestigious MM register among those active in other countries.

Parents' perspective on recovery at home following adenotonsillectomy: a prospective single-centre qualitative analysis.

PURPOSE: In North America, pediatric adenotonsillectomy (TA) is conducted as an ambulatory procedure, thus shifting the burden of postoperative care to parents. The purpose of this study was to describe this parental experience. METHODS: We conducted a prospective single-centre qualitative study, recruiting the families of children (n = 317) undergoing elective TA in 2018. Parents were invited to submit written comments to two open-ended questions. We coded the comments from 144 parents in a grounded theory analysis and report representative exemplars. Themes and subthemes for the problems encountered, and strategies employed by parents, were developed. We then coded and classified factors that helped/hindered parents and developed models of the experience. RESULTS: Some parents felt ill-prepared for the severity and duration of pain. Specific findings included a lack of strategies to manage pain at night, refusals, and night terrors. Parents identified the use of pain scales, pain diaries, and liaison with the research team as helpful supports at home. Inconsistent messaging was a barrier. The odynophagia associated with elixirs of acetaminophen and ibuprofen was a barrier to achieving analgesia. CONCLUSIONS: The findings from this qualitative analysis provide insight into the challenges faced by parents when caring for their children at home following TA; these challenges included difficulties managing physical needs and pain. The analysis suggests that educational content should be standardized and include the use of pain scales and diaries, and both pharmacologic and nonpharmacologic strategies. Development of support at home, including a practicable liaison with health care providers, seems to be warranted. STUDY REGISTRATION: ClinicalTrials.gov (NCT03378830); registered 20 December 2017.

RéSUMé: OBJECTIF: En Amérique du Nord, l'adéno-amygdalectomie pédiatrique est réalisée en intervention ambulatoire, transférant ainsi le fardeau des soins postopératoires aux parents. Le but de cette étude était de décrire cette expérience parentale. MéTHODE: Nous avons réalisé une étude qualitative prospective monocentrique, recrutant les familles d'enfants (n = 317) subissant une adéno-amygdalectomie non urgente en 2018. Les parents ont été invités à soumettre des commentaires écrits sur deux questions ouvertes. Nous avons codé les commentaires de 144 parents dans une analyse théorique ancrée et rapporté des exemples représentatifs. Des thèmes et sous-thèmes pour les problèmes rencontrés, ainsi que des stratégies employées par les parents, ont été développés. Nous avons ensuite codé et classé les facteurs qui aidaient / gênaient les parents et développé des modèles de l'expérience. RéSULTATS: Certains parents se sentaient mal préparés à la gravité et à la durée de la douleur. Les résultats spécifiques comprenaient un manque de stratégies pour gérer la douleur la nuit, les refus et les terreurs nocturnes. Les parents ont indiqué que l'utilisation d'échelles de douleur, de journaux de douleur et de liaison avec l'équipe de recherche étaient des soutiens utiles à la maison. Le manque d'uniformité des messages a constitué un obstacle. L'odynophagie associée aux élixirs d'acétaminophène et d'ibuprofène était un obstacle à l'analgésie. CONCLUSION: Les résultats de cette analyse qualitative donnent un aperçu des défis auxquels font face les parents lorsqu'ils et elles s'occupent de leurs enfants à la maison après une adéno-amygdalectomie; ces défis comprenaient des difficultés à gérer les besoins physiques et la douleur. L'analyse suggère que le contenu éducatif devrait être normalisé et inclure l'utilisation d'échelles et de journaux de douleur, ainsi que de stratégies pharmacologiques et non pharmacologiques. L'élaboration d'un soutien à domicile, y compris d'une communication fonctionnelle avec les prestataires de soins de santé, semble justifiée. ENREGISTREMENT DE L'éTUDE: ClinicalTrials.gov (NCT03378830); enregistrée le 20 décembre 2017.

Nurses' patterns of knowing about HIV disclosure to children / Patrones de conocer de los enfermeros sobre la revelación del VIH a los niños / Padrões do conhecer de enfermeiras sobre revelação do HIV à criança

ABSTRACT Objectives: to identify and analyze nurses' patterns of knowing and experiences with the preparation of families for disclosure to children living with HIV seropositivity. Methods: thirteen pediatric nurses from Rio de Janeiro participated in the research using the sensitive creative method. Data were treated with Orlandi's discourse analysis and Carper's patterns of knowing. Results: nurses' speeches revealed socioculturally constructed imaginary and ideological formations. The personal pattern of knowing, under the influence of negative media about the disease in the 1980s, generated stigma and prejudice. Empirical, esthetic, and ethical patterns were built on training and professional practice of the 1990s-2010s. They composed a context of (in)security about competence, to contribute to preparing families to disclose HIV to children. Final Considerations: nurses' experience demonstrates knowledge to intervene and many challenges for their practical appropriation.

RESUMEN Objetivos: identificar y analizar los patrones de conocer y las experiencias de enfermeros con la preparación de familiares para la revelación al niño que vive con VIH seropositivo. Métodos: 13 enfermeros pediátricos de Rio de Janeiro participaron de la investigación utilizando el método sensitivo creativo. Los datos fueron tratados con el análisis del discurso de Orlandi y los patrones de conocer de Carper. Resultados: los discursos de las enfermeras revelaron formaciones imaginarias e ideológicas construidas socioculturalmente. El patrón de conocer a las personas, bajo la influencia de los medios negativos sobre la enfermedad en la década de 1980, generó estigma y prejuicio. Los estándares empíricos, estéticos y éticos se construyeron sobre la formación y la práctica profesional desde la década de 1990 hasta la de 2010. Compusieron un contexto de (in)seguridad sobre la competencia, para contribuir a la preparación de los familiares para la revelación del VIH al niño. Consideraciones Finales: la experiencia de los enfermeros demuestra saberes para intervenir y muchos desafíos para su apropiación práctica.

RESUMO Objetivos: identificar e analisar os padrões do conhecer e as experiências de enfermeiras com a preparação de familiares para a revelação à criança que (con)vive com a soropositividade pelo HIV. Métodos: 13 enfermeiras pediátricas do Rio de Janeiro participaram da pesquisa com o método criativo sensível. Dados foram tratados com análise de discurso de Orlandi e padrões do conhecer de Carper. Resultados: os discursos das enfermeiras revelaram formações imaginárias e ideológicas socioculturalmente construídas. O padrão de conhecer pessoal, sob influência da mídia negativa da doença na década de 1980, gerou estigma e preconceito. Os padrões empírico, estético e ético foram construídos nas capacitações e prática profissional das décadas de 1990-2010. Eles compuseram um contexto de (in)segurança sobre a competência, para contribuir na preparação de familiares para a revelação do HIV à criança. Considerações Finais: a experiência das enfermeiras demonstra conhecimentos para intervir e muitos desafios para sua apropriação prática.

Análise ética dos impactos da pandemia de COVID-19 na saúde de crianças e adolescentes / An ethical analysis of the impacts of the COVID-19 pandemic on the health of children and adolescents / Análisis ético acerca dos impactos de la pandemia COVID-19 en la salud de niños y adolescentes

A pandemia de COVID-19 trouxe impactos significativos para a vida de crianças e adolescentes em todo o mundo. Considerando esse contexto, o objetivo deste artigo foi examinar como as crianças e os adolescentes no Brasil foram impactados pela pandemia à luz de uma análise ética. Para tanto, uma análise interpretativa de estudos brasileiros sobre a saúde da criança e do adolescente durante a pandemia foi realizada. A tarefa de reconhecer essa dimensão ética é importante para entender como as respostas a situações de crise, tais como a presente situação da pandemia de COVID-19, podem ser moldadas e identificar quais as prioridades de ação de acordo com todas as partes interessadas, situando a criança entre essas partes de interesse. A análise demonstrou que tanto os efeitos diretos quanto os indiretos implicam em processos de tomada de decisão que precisam utilizar e sustentar o direito de participação da criança para que a ação tomada esteja o máximo possível focada nos melhores interesses da criança. Contudo, a realidade brasileira tem demonstrado uma exclusão estrutural das vozes infantis. Recomenda-se que mais estudos sejam conduzidos a fim de aprofundar o conhecimento sobre os melhores interesses das crianças e sua participação nas ações tomadas durante a pandemia

The COVID-19 pandemic has impacted the lives of children and adolescents around the world. This article aims to examine how the pandemic has impacted children and adolescents in Brazil using an ethical analysis. An interpretive analysis of Brazilian studies on child and adolescent health during the pandemic was conducted. The task of recognizing this ethical dimension is important to understand how responses to crisis situations, such as the current situation of the COVID-19 pandemic, can be shaped and where are the priorities for action according to all stakeholders, situating the child between these parts of interest. Our analysis highlighted both direct and indirect effects surrounding the decision-making processes for children in the COVID-19 pandemic reality. These decisional processes must sustain the child's right to participation to ascertain that the action taken is in the child's best interests. However, Brazilian reality has shown a structural exclusion of children's voices in decisions that affect them, particularly related to the effects of the pandemics in their lives. More studies must be conducted to deepen the knowledge about children's best interests and their participation in actions planning during the pandemic

La pandemia de COVID-19 ha afectado las vidas de niños y adolescentes de todo el mundo. Este artículo tiene como objetivo examinar cómo la pandemia ha afectado a los niños y adolescentes en Brasil mediante un análisis ético. Se realizó un análisis interpretativo de los estudios brasileños sobre salud del niño y del adolescente durante la pandemia. La tarea de reconocer esta dimensión ética es importante para entender cómo las respuestas a situaciones de crisis, como la situación actual de la pandemia COVID-19, pueden configurarse y dónde están las prioridades de acción según todos los actores, situando al niño entre estas partes. de interés. Estos procesos de decisión deben sustentar el derecho del niño a la participación para asegurarse de que las medidas tomadas respondan al interés superior del niño. Sin embargo, la realidad brasileña ha mostrado una exclusión estructural de las voces de los niños en las decisiones que los afectan, particularmente en relación con los efectos de las pandemias en sus vidas. Se deben realizar más estudios para profundizar el conocimiento sobre el interés superior de los niños y su participación en la planificación de acciones durante la pandemia

An Ethnographic Study of the Moral Experiences of Children with Cancer in New Delhi, India.

There is a paucity of research examining children's experiences with cancer in India. Childhood ethics is an emerging field, focusing on the moral dimension of children's experiences, to promote children's participation in their health care. A focused ethnography, using a moral experience framework, was conducted to better understand children's participation in decisions, discussions, and actions in three oncology settings in New Delhi, India. We interviewed key informants, retrieved key documents, and conducted semi-structured interviews and participant observations with children. All 22 children demonstrated interest in varying aspects of their cancer care. Certain factors facilitated or impeded their participation. Some children became distressed when they lacked information about their treatment or were not given opportunities to enhance their understanding. The results advance our understanding of the moral experiences of children with cancer in India for healthcare professionals, policy makers, families, and interested others.

A scoping review of the moral experiences of children with medical complexity in Brazil / Una revisión de alcance de las experiencias morales de niños con complejidad médica en Brasil / Uma revisão de escopo das vivências morais de crianças com complexidade médica no Brasil

ABSTRACT Objectives: The aim of this review was to identify and summarize how the moral experiences of children with medical complexity are being expressed within the Brazilian health-related literature and discuss research gaps and directions for future research. Methods: A scoping review was performed using the methodological framework of Arksey and O'Malley and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Systematic searches were conducted on Medline, CINAHL, Scopus, and Embase databases. Articles were included if using qualitative methodologies, having children as participants, and published in Brazil. Results: In total, 6,360 articles were retrieved from databases. Sixteen studies were selected for the analysis. Final considerations: The studies were not primarily focused on children's moral experiences. Yet, the studies demonstrate morally relevant accounts concerning children's capacity to reason and interpret their lived experiences, expressing deep concerns about isolation, suffering, future aspirations, and feelings of normality.

RESUMEN Objetivos: identificar y sintetizar cómo se expresan las experiencias morales de los niños con complejidad médica en la literatura brasileña relacionada con la salud y discutir las brechas de investigación y las directrices para futuras investigaciones. Métodos: se realizó una revisión de alcance utilizando el marco metodológico de Arksey y O'Malley, los elementos de informes preferidos para las revisiones sistemáticas y la extensión de la declaración de PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) para las revisiones de alcance (PRISMA-ScR). Se realizaron búsquedas sistemáticas en las bases de datos Medline, CINAHL, Scopus y Embase. Los artículos se incluyeron según los criterios: con metodologías cualitativas, niños como participantes e investigaciones publicadas en Brasil. Resultados: en total, se recuperaron 6.360 artículos de las bases de datos. Dieciséis estudios fueron seleccionados para el análisis. Consideraciones finales: los estudios analizados no se centraron principalmente en las experiencias morales de los niños. Sin embargo, los estudios demuestran relatos moralmente relevantes sobre la capacidad de los niños para razonar e interpretar sus experiencias vividas, expresando profundas preocupaciones sobre el aislamiento, el sufrimiento, las aspiraciones futuras y los sentimientos de normalidad.

RESUMO Objetivos: O objetivo desta revisão foi identificar e sintetizar como as vivências morais de crianças com complexidade médica estão sendo expressas na literatura brasileira relacionada à saúde e discutir lacunas de pesquisa e orientações para pesquisas futuras. Métodos: Uma revisão de escopo foi realizada, usando o referencial metodológico de Arksey e O'Malley, os Itens de Relatórios Preferenciais para Revisões Sistemáticas e a extensão de Meta-Análises para Revisões de Escopo (PRISMA-ScR). Pesquisas sistemáticas foram conduzidas nos bancos de dados Medline, CINAHL, Scopus e Embase. Os artigos foram incluídos de acordo com os critérios: possuir metodologias qualitativas, crianças como participantes e pesquisas publicadas no Brasil. Resultados: No total, 6.360 artigos foram recuperados dos bancos de dados. Dezesseis estudos foram selecionados para a análise. Considerações finais: Os estudos analisados não estavam focados primariamente nas experiências morais das crianças. No entanto, os estudos demonstram relatos moralmente relevantes sobre a capacidade das crianças de raciocinar e interpretar suas experiências vividas, expressando profundas preocupações sobre isolamento, sofrimento, aspirações futuras e sentimentos de normalidade.

A scoping review of the moral experiences of children with medical complexity in Brazil / Una revisión de alcance de las experiencias morales de niños con complejidad médica en Brasil / Uma revisão de escopo das vivências morais de crianças com complexidade médica no Brasil

ABSTRACT Objectives: The aim of this review was to identify and summarize how the moral experiences of children with medical complexity are being expressed within the Brazilian health-related literature and discuss research gaps and directions for future research. Methods: A scoping review was performed using the methodological framework of Arksey and O'Malley and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Systematic searches were conducted on Medline, CINAHL, Scopus, and Embase databases. Articles were included if using qualitative methodologies, having children as participants, and published in Brazil. Results: In total, 6,360 articles were retrieved from databases. Sixteen studies were selected for the analysis. Final considerations: The studies were not primarily focused on children's moral experiences. Yet, the studies demonstrate morally relevant accounts concerning children's capacity to reason and interpret their lived experiences, expressing deep concerns about isolation, suffering, future aspirations, and feelings of normality.

RESUMEN Objetivos: identificar y sintetizar cómo se expresan las experiencias morales de los niños con complejidad médica en la literatura brasileña relacionada con la salud y discutir las brechas de investigación y las directrices para futuras investigaciones. Métodos: se realizó una revisión de alcance utilizando el marco metodológico de Arksey y O'Malley, los elementos de informes preferidos para las revisiones sistemáticas y la extensión de la declaración de PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) para las revisiones de alcance (PRISMA-ScR). Se realizaron búsquedas sistemáticas en las bases de datos Medline, CINAHL, Scopus y Embase. Los artículos se incluyeron según los criterios: con metodologías cualitativas, niños como participantes e investigaciones publicadas en Brasil. Resultados: en total, se recuperaron 6.360 artículos de las bases de datos. Dieciséis estudios fueron seleccionados para el análisis. Consideraciones finales: los estudios analizados no se centraron principalmente en las experiencias morales de los niños. Sin embargo, los estudios demuestran relatos moralmente relevantes sobre la capacidad de los niños para razonar e interpretar sus experiencias vividas, expresando profundas preocupaciones sobre el aislamiento, el sufrimiento, las aspiraciones futuras y los sentimientos de normalidad.

RESUMO Objetivos: O objetivo desta revisão foi identificar e sintetizar como as vivências morais de crianças com complexidade médica estão sendo expressas na literatura brasileira relacionada à saúde e discutir lacunas de pesquisa e orientações para pesquisas futuras. Métodos: Uma revisão de escopo foi realizada, usando o referencial metodológico de Arksey e O'Malley, os Itens de Relatórios Preferenciais para Revisões Sistemáticas e a extensão de Meta-Análises para Revisões de Escopo (PRISMA-ScR). Pesquisas sistemáticas foram conduzidas nos bancos de dados Medline, CINAHL, Scopus e Embase. Os artigos foram incluídos de acordo com os critérios: possuir metodologias qualitativas, crianças como participantes e pesquisas publicadas no Brasil. Resultados: No total, 6.360 artigos foram recuperados dos bancos de dados. Dezesseis estudos foram selecionados para a análise. Considerações finais: Os estudos analisados não estavam focados primariamente nas experiências morais das crianças. No entanto, os estudos demonstram relatos moralmente relevantes sobre a capacidade das crianças de raciocinar e interpretar suas experiências vividas, expressando profundas preocupações sobre isolamento, sofrimento, aspirações futuras e sentimentos de normalidade.

The Oral Health of Refugees and Asylum Seekers in Canada: A Mixed Methods Study Protocol.

Canada received over 140,000 refugees and asylum seekers between 2015 and 2017. This paper presents a protocol with the purpose of generating robust baseline data on the oral health of this population and build a long-term program of research to improve their access to dental care in Canada. The three-phase project uses a sequential mixed methods design, with the Behavioral Model for Vulnerable Populations as the conceptual framework. In Phase 1a, we will conduct five focus groups (six to eight participants per group) in community organizations in Ontario, Canada, to collect additional sociocultural data for the research program. In Phase 1b, we will use respondent-driven sampling to recruit 420 humanitarian migrants in Ontario and Quebec. Participants will complete a questionnaire capturing socio-demographic information, perceived general health, diet, smoking, oral care habits, oral symptoms, and satisfaction with oral health. They will then undergo dental examination for caries experience, periodontal health, oral pain, and traumatic dental injuries. In Phase 2, we will bring together all qualitative and quantitative results by means of a mixed methods matrix. Finally, in Phase 3, we will hold a one-day meeting with policy makers, dentists, and community leaders to refine interpretations and begin designing future oral health interventions for this population.

Angústias Psicológicas Vivenciadas por Enfermeiros no Trabalho com Pacientes em Processo de Morte: Estudo Clínico-Qualitativo / Angustia de Enfermeras en Trabajo con Pacientes en Proceso de la Muerte: Estudio Clínico-Cualitativo / Psychological Distress Experienced by Nurses who Work with Patients in Death Process: A Clinical-Qualitative Study

Resumo Esta pesquisa objetivou conhecer as angústias vivenciadas pelos enfermeiros no trabalho com pacientes em risco ou em processo de morte em uma unidade hemato-oncológica. Estudo clínico-qualitativo, realizado por meio de entrevistas individuais. Participaram desta pesquisa 06 enfermeiros da unidade hemato-oncológica de um hospital universitário. Os resultados foram reunidos em cinco categorias, as quais remetem à perda da autonomia profissional quando o enfermeiro se depara com a dificuldade de pensar o seu próprio trabalho. O trabalho com a criança com câncer parece ser símbolo de uma angústia maior em lidar com a morte. Ao mesmo tempo em que a melhora ou a esperança de cura dá motivação ao enfermeiro, a morte do paciente infantil tem o significado de impotência, tristeza e desesperança. Os enfermeiros, ao longo do processo de trabalho, têm insights sobre como a sua relação com o trabalho poderia ser melhorada, porém, no momento do sofrimento, a preocupação dos enfermeiros não foi ouvida. Há a necessidade de que instituições de saúde, equipes e o próprio enfermeiro percebam esse profissional como um sujeito ético, necessitando refletir seu trabalho para que haja possibilidade de planejar alguma forma de digerir a angústia do trabalho.

Resumen Este estudio tuvo como objetivo conocer las angustias experimentado por enfermeros que trabajan con pacientes en riesgo o proceso de morir en una unidad de hemato-oncología. Estudio clínico-cualitativo, realizado a través de entrevistas individuales. Los participantes fueron 06 enfermeras de la unidad hemato-oncológica. Los resultados demuestran la pérdida de la autonomía profesional cuando la enfermera se enfrenta a la dificultad de pensar sobre su propio trabajo. El trabajo con niños con cáncer parece ser un símbolo de mayor ansiedad para hacer frente a la muerte. La mejoría o curación de la esperanza motivación para la enfermera, la muerte del paciente infantil tiene el significado de impotencia, tristeza y desesperanza. Enfermeras, a lo largo del proceso laboral, tienen ideas sobre cómo se podría mejorar su relación con el trabajo, pero la preocupación de las enfermeras no se han escuchado durante el sufrimiento. Existe la necesidad de que las instituciones de salud, equipos e incluso las enfermeras perciben este profesional como sujeto que requiere reflejan su trabajo de modo que no hay posibilidad de planificar alguna manera de digerir la angustia de trabajo.

Abstract This research aimed to know the anguish experienced by nurses who work with patients in risk or in dying process in a hematology-oncology unit. A clinical-qualitative study, conducted through individual interviews. The participants were 06 nurses from hematology-oncology unit of a university hospital. The results were grouped into five categories, which refer to the loss of professional autonomy when the nurse is faced with the difficulty of thinking about their own work. Working with children affected by cancer seems to be a symbol of greater anxiety in dealing with death. While that, the improvement or cure of hope brings motivation to nurse, the death of the child patient has the meaning of helplessness, sadness and hopelessness. Nurses throughout the work process have insights about how their relationship to work could be improved, but the nurses' concern has not been heard during the suffering. These findings emphasize the need for health care organizations, teams and even the nurses perceive this professional as an ethical subject, who needs to reflect their work to be able to plan some way to digest the anguish of working.

As difíceis decisões na prática pediátrica e sofrimento moral em unidade de terapia intensiva / Difficult decisions in pediatric practice and moral distress in the intensive care unit

RESUMO Em um dilema ético, há sempre uma conduta identificada como a melhor a ser tomada. A impossibilidade de adotar tal conduta leva o profissional a experimentar o sofrimento moral. Esta revisão objetivou definir este problema e propor estratégias para seu enfrentamento. Foram buscadas as palavras-chaves "moral distress" e "sofrimento moral" nas bases de dados internacionais MEDLINE/PubMed e SciELO, em artigos publicados entre 2000 - 2017. A revisão foi não exaustiva, contextual, enfocando definições, etiologia e métodos de resolução do problema. No cotidiano da prática em terapia intensiva, o sofrimento moral esteve comumente relacionado ao prolongamento do sofrimento do paciente e ao sentimento de impotência, bem como a dificuldades na comunicação entre os membros da equipe. As estratégias de enfrentamento para o sofrimento moral incluíram ações organizacionais, pessoais e administrativas. Foram recomendadas ações como manejo da carga de trabalho, apoio mútuo entre profissionais e desenvolvimento de técnicas para cultivar a comunicação aberta, a reflexão e o questionamento dentro da equipe multidisciplinar. Na prática clínica, os profissionais de saúde foram reconhecidos como agentes morais, tendo sido fundamental o desenvolvimento da coragem moral para suplantar os dilemas éticos e os conflitos interprofissionais. Tanto na terapia intensiva pediátrica como de adultos, os professionais encontram-se desafiados pelos questionamentos sobre sua prática e podem experimentar sofrimento moral. Este sofrimento pode ser minimizado e resolvido ao se compreender que o foco sempre é o paciente e agir com coragem moral e boa comunicação, em um ambiente de respeito mútuo.

ABSTRACT In an ethical dilemma, there is always an option that can be identified as the best one to be chosen. When it is impossible to adopt such option, the situation can lead professionals to experience moral distress. This review aims to define the issue of moral distress and propose coping strategies. Systematic searches in the MEDLINE/PubMed and SciELO databases were conducted using the keywords "moral distress" and "moral suffering" in articles published between 2000 and 2017. This review was non-exhaustive and contextual, with a focus on definitions, etiologies and methods of resolution for moral distress. In the daily practice of intensive care, moral distress was commonly related to the prolongation of patients' suffering and feelings of helplessness, as well as difficulties in communication among team members. Coping strategies for moral distress included organizational, personal and administrative actions. Actions such as workload management, mutual support among professionals and the development of techniques to cultivate open communication, reflection and questioning within the multidisciplinary team were identified. In clinical practice, health professionals need to be recognized as moral agents, and the development of moral courage was considered helpful to overcome ethical dilemmas and interprofessional conflicts. Both in pediatric and adult intensive care, professionals are challenged by questions about their practice, and they may experience moral distress. This suffering can be minimized and solved by understanding that the focus is always on the patient and acting with moral courage and good communication in an environment of mutual respect.

Exploring the Interaction Between Nursing Decision Making and Patient Outcomes in 2 European Cancer Centers: A Qualitative Study.

BACKGROUND: In some clinical settings, nurses have difficulty describing the outcomes of their caring activities. Understanding the reasons for this could help nurse leaders to improve the effectiveness and visibility of nursing practice and safeguard nurses' working conditions. OBJECTIVE: The aims of this study were to understand how nurses working in 2 different adult cancer centers make healthcare decisions and assess the respective outcomes on their patients. METHODS: Through a constructivist grounded theory approach, we involved 15 clinical cancer nurses with different experiences and educational backgrounds and 6 nurse managers, working in 2 comprehensive cancer centers, 1 in Italy and 1 in Switzerland. Data were collected in 2 phases using 20 semistructured interviews and 9 field observations. RESULTS: Six macrocategories emerged: interacting with situational factors, deciding relevant interventions, using multiple decision-making approaches, evaluating interventions and reporting them, pursuing healthcare outcomes, and clarifying professional identity and roles. Nurses' decision-making processes varied and were influenced by various factors, which mutually influenced one another. This process was interpreted using an explicative theory called "dynamic decision-making adaptation." CONCLUSIONS: The present study showed how the aims, contents, and degree of autonomy in the nurses' decision-making process are strongly influenced by the dialectic interaction between professional and contextual factors, such as competency and professional identity. IMPLICATIONS FOR PRACTICE: Cancer nurses could influence their clinical practice by developing nursing competencies that effectively resolve patients' problems. This is a key factor that nurses govern autonomously and therefore a responsibility that involves the entire nursing educational, organizational, and scientific leadership.

'I'm only dealing with the acute issues': How medical ward 'busyness' constrains care of the dying.

Acute hospital units are a common location of death. Curative characteristics of the acute medical setting make it difficult to provide adequate palliative care; these characteristics include an orientation to life-prolonging treatment, an emphasis on routine or task-oriented care and a lack of priority on emotional engagement with patients. Indeed, research shows that dying patients in acute medical units often experience unmet needs at the end of life, including uncontrolled symptoms (e.g. pain, breathlessness), inadequate emotional support and poor communication. A focused ethnography was conducted on an acute medical ward in Canada to better understand how this curative/life-prolonging care environment shapes the care of dying patients. Fieldwork was conducted over a period of 10 months and included participant-observation and interviews with patients, family members and staff. On the acute medical ward, a 'logic of care' driven by discourses of limited resources and the demanding medical unit created a context of busyness. Staff experienced an overwhelming workload and felt compelled to create priorities, which reflected taken-for-granted values regarding the importance of curative/life-prolonging care over palliative care. This could be seen through the way staff prioritized life-prolonging practices and rationalized inconsistent and less attentive care for dying patients. These values influenced care of the dying through delaying a palliative approach to care, limiting palliative care to those with cancer and providing highly interventive end-of-life care. Awareness of these taken-for-granted values compels a reflective and critical approach to current practice and how to stimulate change.

Metodologias qualitativas em pesquisa na saúde: referencial interpretativo de Patricia Benner / Metodologías cualitativas en investigación en salud: referencial interpretativo de Patricia Benner / Qualitative methodologies in health research: interpretive referential of Patricia Benner

RESUMO Objetivo: este artigo relata a experiência de utilização do referencial fenomenológico interpretativo de Patricia Benner em uma pesquisa de dissertação de mestrado. A fenomenologia interpretativa, pautada em referenciais filosóficos existenciais e de interpretação, possui como objetivo compreender as experiências humanas nos diversos mundos dos participantes da pesquisa. Os dados foram coletados por meio de entrevistas com nove enfermeiros, nos meses de novembro e dezembro de 2014. Resultados: o processo de análise dos dados, de acordo com o referencial de Benner, segue os passos: transcrição, codificação, análise temática e busca por casos paradigmáticos e exemplares. Para tanto, os conhecimentos prévios dos pesquisadores fazem parte da estrutura do projeto interpretativo, constituindo as vias de condução do estudo. Conclusão: o uso desse referencial teórico e metodológico constituiu-se em um desafio para a pesquisadora, porém demonstrou potencial ímpar para o desvelamento de fenômenos existenciais relacionados ao cotidiano dos participantes.

RESUMEN Objetivo: este artículo relata la experiencia de utilización del referencial fenomenológico interpretativo de Patricia Benner en una investigación de disertación de maestría. LA fenomenología interpretativa, pautada en referenciales filosóficos existenciales y de interpretación, posee como objetivo comprender las experiencias humanas en los diversos mundos de los participantes de la investigación. Los datos fueron recogidos por medio de entrevistas con nueve enfermeros, en los meses de noviembre y diciembre de 2014. Resultados: el proceso de análisis de los datos, de acuerdo con el referencial de Benner, sigue los pasos: transcripción, codificación, análisis temático y búsqueda por casos paradigmáticos y ejemplares. Para tanto, los conocimientos prévios de los investigadores forman parte de la estructura del proyecto interpretativo, constituyendo las vías de conducción del estudio. Conclusión: el uso de ese referencial teórico y metodológico constituye en un desafío para la investigadora, sin embargo demostró excelente potencial para el desarrollo de fenómenos existenciales relacionados al cotidiano de los participantes.

ABSTRACT Objective: this article reports on the experience of using the interpretive phenomenological framework of Patricia Benner in a Brazilian context. Benner's interpretive phenomenology, based on existential and interpretative philosophy, aims to understand human experiences in the particular worlds of research participants. Data were collected through interviews with nine nurses in November and December 2014. Results: data analysis process according to Benner's framework consisted of: transcription, coding, thematic analysis, and search for paradigmatic cases and examples. Therefore, the prior knowledge of the researcher is an important part of the study, consisting in manners of the research conduction. Conclusion: The use of this methodological framework entailed a great challenge for the researcher, however, it also enabled a unique opportunity to illuminate important existential phenomena related to the daily lives of research participants.

Recovering function and surviving treatments are primary motivators for health behavior change in patients with head and neck cancer: Qualitative focus group study.

OBJECTIVE: Against medical advice, head and neck cancer (HNC) patients have been shown to continue to smoke and misuse alcohol post-diagnosis and treatment. This study aimed to better understand the barriers to and facilitators of health behavior change (HBC) in HNC patients. METHOD: We conducted nine focus groups following a standard protocol. Eligible patients were diagnosed less than three years previously with a primary HNC and selected using maximum variability sampling (gender, age, cancer stage, smoking, and alcohol misuse). Thematic analysis was conducted using NVivo 10 software. RESULTS: Participants were mostly men (79%), 65 years of age (SD = 10.1), and married/common-law (52%, n = 15). Mean time from diagnosis was 19 months (SD = 12.3, range = 5.0-44.5), and most had advanced cancer (65.5%, n = 19). Participants provided a larger than anticipated definition of health behaviors, encompassing both traditional (smoking, drinking, diet, exercise, UV protection) and HNC-related (e.g., dental hygiene, skin care, speech exercises, using a PEG, gaining weight). The main emerging theme was patient engagement, that is, being proactive in rehabilitation, informed by the medical team, optimistic, flexible, and seeking support when needed. Patients were primarily motivated to stay proactive and engage in positive health behaviors in order to return to normal life and reclaim function, rather than to prevent a cancer recurrence. Barriers to patient engagement included emotional aspects (e.g., anxiety, depression, trauma, demoralization), symptoms (e.g., fatigue, pain), lack of information about HBC, and healthcare providers' authoritarian approach in counseling on HBC. We found some commonalities in barriers and facilitators according to behavior type (i.e., smoking/drinking/UV protection vs. diet/exercise). SIGNIFICANCE OF RESULTS: This study underlines the key challenges in addressing health behaviors in head and neck oncology, including treatment-related functional impairments, symptom burden, and the disease's emotional toll. This delicate context requires health promotion strategies involving close rehabilitative support from a multidisciplinary team attentive to the many struggles of patients both during treatments and in the longer-term recovery period. Health promotion in HNC should be integrated into routine clinical care and target both traditional and HNC-related behaviors, emphasizing emotional and functional rehabilitation as key components.

Análise normativa sobre a voz da criança na legislação brasileira de proteção à infância / Analise normativa de voice del niño en la legislación brasileña de protección a la infancia / Normative analysis of the voice of children in Brazilian child protection legislation

RESUMO Objetivo Identificar e analisar, no discurso normativo de proteção à infância no Brasil, marcas das vozes da criança na tomada de decisão sobre seus cuidados em saúde. Método Análise normativa da legislação de proteção à infância no Brasil (1988-2012), operacionalizada pela análise de conteúdo de nove textos, no ano de 2015. Resultados A legislação destaca a voz da criança no processo decisório, tanto na pesquisa como nos cuidados em saúde. O reconhecimento do direito a dignidade e liberdade, informação e proteção depende do julgamento do adulto sobre a capacidade de discernimento da criança e se a situação a isenta de danos para si mesma. Conclusões O discurso normativo de proteção à infância confere voz à criança, mas com restrição e sob a tutela do adulto.

RESUMEN Objetivo identificar y analizar en el discurso normativo de protección a la infancia en Brasil, marcas de las voces de los niños en la toma de decisiones sobre su atención de salud. Método Analisis normativa de la legislación de protección a la infancia en Brasil (1988-2012), operacionalizados por el análisis de contenido de nueve textos, en el año de 2015. Resultados La legislación destaca la voz del niño en el proceso de toma de decisiones, tanto en la investigación como en el cuidado de la salud. El reconocimiento del derecho a la dignidad y a la libertad, a la información y a la protección depende del juicio del adulto sobre la capacidad de un niño para el discernimiento y si la situación es libre de daño a sí mismo. Conclusiones el discurso normativo de protección a infancia reconoce la voz de los niños, preo con restricción y con supervisión de un adulto.

ABSTRACT Objective to identify and analyse children's voices in healthcare decision making in the discourse of Brazil's child protection laws. Method Documentary normative analysis of Brazil's child protection legislation (1988-2012) based on the content analysis of nine texts, conducted in 2015. Results The legislation acknowledges and stresses the voice of children in the decision-making process in research and healthcare. Any recognition of the right to dignity, liberty, information, and protection depends on what the adult decision-maker (with parental authority) believes is the child's capacity for discernment and whether the situation will cause self-harm. Conclusions the normative child protection discourse grants children a voice, although with restrictions and under the authority of the adult with parental authority.

Exploring oral health and hygiene practices in the Algonquin community of Rapid Lake, Quebec.

INTRODUCTION: Early childhood caries (ECC), a disease characterized by tooth decay in the primary teeth of children, has become particularly burdensome in Aboriginal communities in Canada. Prevalence estimates of ECC range between 50% and 100%. Most concerning are the severe cases of ECC that require treatment with restorative surgery under general anesthesia. These surgeries often displace children and families from their local communities to specialty hospitals for treatment; further, they are very costly to dental insurance payers such as the government. This study used community-based participatory research (CBPR) to explore oral health and hygiene practices in the Algonquin community of Rapid Lake, Quebec. A key goal of the study was to create a culturally adapted activity to promote children's oral health and hygiene practices. METHODS: Focused ethnography was used to explore oral health beliefs and practices, and factors related to child oral health promotion with community members. Participants included children, parents, educators, healthcare workers, youth workers and elders. Semi-structured interviews were conducted with key informants. Following, two focus group interviews were conducted: one with parents and one with school children. All data were audio-recorded, transcribed and analyzed iteratively using thematic analysis. Preliminary findings were then used to develop oral health promoting activities for children in the community. These activities were designed in collaboration with community workers. RESULTS: Three main themes emerged from the analysis: (1) a gap existed between oral health knowledge and oral health behaviors; (2) challenges for oral health promotion included attitudes and beliefs, access, and priorities; and (3) parents needed to be further integrated into health promotion strategies. Key outcomes included: (1) the development of Eagles & Otters, a game designed to increase children's oral health knowledge; (2) an activity sheet to promote child oral health behaviors in the home; and (3) increased capacity in oral health promotion in local youth, community research partners and the student researcher. CONCLUSIONS: The findings of this study highlight the importance of both local and broader systemic interventions to promote children's oral health. At the local level, child oral health and hygiene was promoted through the development of activities designed to increase children's oral health knowledge and behaviors both at school and in the home where parents were directly implicated. Systemic level interventions are needed to address factors related to the social determinants of health, including cultural traditions, economic security, food security, and housing status. These factors contribute to overall health and enable the necessary conditions to promote and sustain oral health.

Interdisciplinarity and nursing research: opportunities and challenges / Interdisciplinaridade e pesquisa em enfermagem: oportunidades e desafios / La interdisciplinariedad y la investigación en enfermería: oportunidades y desafíos

Interdisciplinary collaboration is widely recognized and considered essential for optimizing the development of knowledge and practice. However, interdisciplinarity is commonly accepted as an unquestioned good; rarely examined as both a source of benefit as well as difficulty for nursing and other disciplines. The aim of this article is to critically examine the opportunities and challenges that interdisciplinarity can provide for research in nursing and other disciplines. Based on a North American perspective, I describe the emergence of uni-disciplinary nursing research and the knowledge exchanges that occurred between nursing and other disciplines. I discuss the rise of interdisciplinary research, outline several examples of nursing participation in interdisciplinarity, and highlight the prominent benefits and difficulties associated with interdisciplinary research. I argue that authentic collaboration is required to conduct meaningful interdisciplinary research and describe how this can be promoted.

Colaboração interdisciplinar é amplamente reconhecida e considerada essencial para a otimização do desenvolvimento do conhecimento e prática. No entanto, a interdisciplinaridade é comumente aceita como um bem inquestionável, raramente examinado tanto como uma fonte de benefícios, bem como dificuldade para a enfermagem e outras disciplinas. O objetivo deste artigo é analisar criticamente as oportunidades e desafios que a interdisciplinaridade pode oferecer para a pesquisa em enfermagem e outras disciplinas. Com base em uma perspectiva norte-americana, descreve-se o surgimento de pesquisas em enfermagem unidisciplinar e as trocas de conhecimento que ocorreram entre a enfermagem e outras disciplinas. Discute-se a ascensão da pesquisa interdisciplinar, delineiam-se vários exemplos de participação da enfermagem na interdisciplinaridade, e destacam-se os benefícios proeminentes e dificuldades associadas com a pesquisa interdisciplinar. Defende-se que a colaboração autêntica é necessária para conduzir a pesquisa interdisciplinar significativa e descreve-se como isso pode ser promovido.

La colaboración interdisciplinaria es ampliamente reconocida y considerada esencial para optimizar el desarrollo del conocimiento y la práctica. Sin embargo, la interdisciplinariedad es comúnmente aceptada como un bien incuestionable; rara vez examinada tanto como una fuente de beneficio, así como de dificultad para la enfermería y otras disciplinas. El objetivo de este artículo es examinar críticamente las oportunidades y desafíos que la interdisciplinariedad puede proporcionar para la investigación en enfermería y otras disciplinas. Sobre la base de una perspectiva norteamericana, describe-se el surgimiento de la investigación en enfermería unidisciplinaria y los intercambios de conocimientos que se produjeron entre la enfermería y otras disciplinas. Se discute el aumento de la investigación interdisciplinaria, esbozan-se varios ejemplos de la participación de enfermería en la interdisciplinariedad, y destacan-se los beneficios y las dificultades asociadas con la investigación interdisciplinaria. Argumenta-sé que se requiere auténtica colaboración para llevar a cabo la investigación interdisciplinaria significativa y describe-se la forma en que esto puede ser promovido. .

Looking beyond disfigurement: the experience of patients with head and neck cancer.

Despite the frequent occurrence of head and neck cancer (HNC) disfigurement, little is known about its psychosocial impact on patients. This study aimed to understand the lived experience of disfigurement in HNC and explore what patients considered to be its influences. Fourteen disfigured HNC patients participated in a 45-to-120-minute in-depth, semistructured interview, which was analyzed qualitatively using interpretive phenomenology. A majority of participants (64 percent) were considered to be at an advanced cancer stage (stage III or stage IV). Patients' experiences revolved around the concept of a ruptured self-image (a discontinuity in sense of self). Forces triggering this ruptured self-image created a sense of "embodied angst", in which disfigurement served as a constant reminder of the patient's cancer and associated foundational malaise. Other influences fostered a sense of normalcy, balance, and acceptance. Participants oscillated between these two states as they grew to accept their disfigurement. This study's findings could guide supportive interventions aimed at helping patients face head and neck surgery.

Vulnerabilidade ao adoecimento de crianças com hiv/aids em transição da infância para a adolescência / Vulnerabilidad frente a la enfermedad de niños con vih/sida en transición de la niñez para la adolescencia / Vulnerability to sickening of children with HIV/AIDS in transition from childhood to adolescence

OBJECTIVE: To identify situations of vulnerability to sickening of patients with HIV/AIDS during the transition from childhood to adolescence. METHODS: Qualitative research with thematic content analysis of a database of interviews held with 11 subjects from 12 to 14 years old, infected by vertical transmission and with diagnosis disclosure. RESULTS: On the individual level, the following were observed: knowing the diagnosis and not being able to talk about it; a negative reaction to the diagnosis; taking on the responsibility for self-care; and, difficulties in taking the medications. On the social plane: orphanhood and/or the falling-ill of a family member; telling other people of the diagnosis; the need for help to remember to take the medication; and, dating and beginning a sex life. CONCLUSION: The importance is highlighted of a multidisciplinary team which has been trained to meet this population's specific health needs, so as to promote autonomy in self-care and social integration.

OBJETIVO: identificar situações de vulnerabilidade ao adoecimento de pacientes com HIV/AIDS durante a transição da infância para a adolescência. MÉTODOS: pesquisa qualitativa com análise de conteúdo temática de banco de entrevistas realizadas com 11 sujeitos de 12 a 14 anos, infectados por transmissão vertical e com revelação diagnóstica. RESULTADOS: no plano individual, foram observados: saber do diagnóstico e não poder falar; reação negativa ao diagnóstico; assumir responsabilidades de se cuidar; dificuldades para tomar os remédios. No plano social: orfandade e/ou adoecimento de um familiar; contar para as outras pessoas o diagnóstico; necessidade de ajuda para lembrar-se de tomar o remédio; namoro e início da vida sexual. CONCLUSÃO: ressalta-se a importância de uma equipe multidisciplinar capacitada para atender às demandas de saúde específicas dessa população, para promover a autonomia do cuidado de si e a inserção social.

OBJETIVO: Identificar situaciones de vulnerabilidad a la enfermedad durante la transición de la niñez para la adolescencia con VIH/SIDA. MÉTODOS: Investigación cualitativa, con análisis de contenido temático de banco de entrevistas realizadas con 11 sujetos entre 12 y 14 años, infectados por transmisión vertical y con revelación diagnóstica. RESULTADOS: El plan individual contempló cuatro sub-núcleos: conocer el diagnóstico y no poder hablar; reacción negativa al diagnóstico; asumir responsabilidades de cuidar a sí; dificultades para tomar las medicinas. En el ámbito social: orfandad y/o enfermedad de un familiar; contar para otras personas el diagnóstico; necesidad de ayuda para recordarse de las medicinas; relaciones y inicio de la vida sexual. CONCLUSIÓN: Se destaca la importancia del equipo multidisciplinar capacitado para atender a las demandas específicas de salud de esta población, a fin de promover la autonomía del cuidado y la inserción social de este individuo.