Regina Szylit Bousso

Compartilhando o processo de morte com a familia: a experiencia da enfermeira na UTI pediatrica

A morte e um evento presente no cotidiano das enfermeiras que trabalham com criancas em UTI. Este estudo teve como objetivo compreender a experiencia da enfermeira no cuidado da crianca e da familia que vivenciam o processo de morte. O referencial teorico adotado foi o Interacionismo Simbolico e, como referencial metodologico, o Interacionismo Interpretativo para analise das narrativas biograficas das sete enfermeiras que participaram da pesquisa. Os eventos que marcaram a historia das enfermeiras neste cenario foram: DEPARANDO-SE COM A MORTE DA CRIANCA, PROJETANDO-SE NO PAPEL DE MAE e PROMOVENDO A DESPEDIDA. Os dados analisados possibilitaram a compreensao da experiencia das enfermeiras ao cuidarem da crianca e sua familia durante o processo de morte.

Buscando preservar a integridade da unidade familiar: a família vivendo a experiência de ter um filho na UTI

Este estudo teve como objetivos: compreender o funcionamento da dinâmica familiar da crianca internada em UTI pediatrica e construir um Modelo Teorico sobre a experiencia da familia que vivencia a internacao da crianca na UTI pediatrica. Utilizou-se como referencial teorico o Interacionismo Simbolico e como referencial metodologico a Teoria Fundamentada nos Dados. A analise comparativa dos dados possibilitou identificar dois fenomenos que compoem esta experiencia da familia: Tendo uma ruptura familiar e Vivendo a possibilidade de vir a perder o filho. A articulacao desses fenomenos permitiu identificar a categoria central BUSCANDO PRESERVAR A INTEGRIDADE DA UNIDADE FAMILIAR, a partir da qual propoe-se um modelo teorico explicativo da experiencia.

Crenças que permeiam a humanização da assistência em unidade de terapia intensiva pediátrica

O presente estudo teve como objetivo conhecer as crencas das enfermeiras, em relacao a assistencia humanizada na Unidade de Terapia Intensiva pediatrica (UTIp). A coleta de dados foi realizada com entrevistas abertas com cinco enfermeiras, depois gravadas e transcritas em sua integra. O conteudo foi analisado, tendo, como referencial teorico, o interacionismo simbolico e, como referencial metodologico, a Teoria Fundamentada em Dados. Com este estudo, foi possivel entender que a enfermeira, mesmo encontrando dificuldades para prestar uma assistencia humanizada, parece estar abandonando a crenca de que UTI e uma unidade tecnicista, passando a buscar estrategias para prestar uma assistencia mais humanizada.

Family Management Style Framework and Its Use With Families Who Have a Child Undergoing Palliative Care at Home

Palliative care settings in many countries acknowledge families as their prime focus of care, but in Brazil, to date, researchers have devoted scant attention to that practice setting. In this article, we report the findings of a study that explored how families define and manage their lives when they have a child or adolescent undergoing palliative care at home. Data included individual semistructured interviews with 14 family members of 11 different families. Interviews were transcribed and the coding procedure featured qualitative content analysis methods. The deductive coding was based on the major components of the Family Management Style Framework and the eight dimensions comprising these components. The analysis provides insight into families’ daily practices and problems inherent in managing their everyday lives that are encountered when they have a child in palliative care. The article features discussion of implications for the palliative care related development of family nursing practice.

Aplicação do Modelo Calgary para avaliação de famílias de isodos na prática clínica

Este trabajo de investigacion cualitativa tiene como objetivo presentar la experiencia de evaluar familias de ancianos dependientes bajo la perspectiva sistemica. El Modelo Calgary fue utilizado como marco teorico y como estrategia metodologica el estudio de caso. Los datos fueron recogidos con cinco familias de personas mayores dependientes, en el periodo entre septiembre y diciembre de 2005, por medio de instrumento elaborado previamente. El uso de este modelo permitio realizar el analisis familiar a partir de los aspectos principales de su estructura, desarrollo y funcionamiento. Se cree que el enfermero debe buscar el endoso en literatura cientifica y adoptar los instrumentos pertinentes, para contribuir para el desarrollo de sus capacidades para realizar el abordaje familiar.This qualitative study has as objective to present the experience to assessment of the families of dependent aged under the systemic approach. The Calgary Model was used as theoretical framework and as methodological strategy the case study. The data had been collected with five families of dependent older person, from September of December of 2005, by means of the instrument elaborated previously. The application of this model allowed doing the familiar analysis raising the main aspects of its structure, development and functioning. We believe that the nurse must search endorsement in the scientific literature and adopts pertinent instruments to contribute for the development of its abilities to do the familiar approach.

Morte digna da criança: análise de conceito

The purpose of this study was to describe the background, attributes and consequen-ces of the concept of dignified death for children. The concept analysis strategy was used to evaluate the 40 articles found in journals in the medical and nursing areas, which studied or focused on the dignified death of children. The attributes of the dignified death concept include: quality of life, child- and family-centered care, specific knowledge about palliative care, shared decisions, relieving the childs suffering, clear communication, helpful relations and a welcoming environment. Few articles bring the definition of a dignified death for children, and, when they do, such definition is vague and often ambiguous among the many authors. This aspect indicates that the concept is not defined consistently, demanding studies about its manifestation in the clinical practice, contributing with the care at the end of life in Pediatrics.El estudio tuvo por objetivo describir los antecedentes, atributos y consecuencias del concepto de muerte digna del nino. Se utilizo la estrategia de analisis de concepto para evaluar los 40 articulos, teniendo como foco las publicaciones en el area medica y de enfermeria, que estudiaron o focalizaron la muerte digna del nino. Los atributos del concepto de muerte digna del nino incluyen: calidad de vida, cuidado centrado en el nino y en la familia, conocimiento especifico sobre cuidados paliativos, decision compartida, alivio del sufrimiento del nino, comunicacion clara, relacion de ayuda y ambiente acogedor. Pocos articulos contienen la definicion de muerte digna del nino y, cuando eso ocurre, entre los varios autores, esa definicion es vaga y, muchas veces, ambigua. Ese aspecto indica que el concepto todavia no esta definido consistentemente, demandando estudios de su manifestacion en la practica clinica, contribuyendo con los cuidados en el final de la vida en pediatriaThe purpose of this study was to describe the background, attributes and consequences of the concept of dignified death for children. The concept analysis strategy was used to evaluate the 40 articles found in journals in the medical and nursing areas, which studied or focused on the dignified death of children. The attributes of the dignified death concept include: quality of life, child- and family-centered care, specific knowledge about palliative care, shared decisions, relieving the childs suffering, clear communication, helpful relations and a welcoming environment. Few articles bring the definition of a dignified death for children, and, when they do, such definition is vague and often ambiguous among the many authors. This aspect indicates that the concept is not defined consistently, demanding studies about its manifestation in the clinical practice, contributing with the care at the end of life in Pediatrics.

Família como categoria de análise e campo de investigação em enfermagem

The increasing information about family in nursing literature expresses the progress in this area of knowledge. The research contribution on family nursing has included the illness experience, and both the context of care and interventions. The increase of family research in nursing studies demands consideration regarding the research quality, in view of the complexity of the studies that deal with family. Researching family represents more than defining a unique group of study. The aim of this study was to discuss theoretical and methodological aspects which should be taken into account by the researchers in their work with families. The reflections and challenges when studying family and illness have been described in this work and represent our 10-year experience investigating families and illnesses in our research group.The increasing information about family in nursing literature expresses the progress in this area of knowledge. The research contribution on family nursing has included the illness experience, and both the context of care and interventions. The increase of family research in nursing studies demands consideration regarding the research quality, in view of the complexity of the studies that deal with family. Researching family represents more than defining a unique group of study. The aim of this study was to discuss theoretical and methodological aspects which should be taken into account by the researchers in their work with families. The reflections and challenges when studying family and illness have been described in this work and represent our 10year experience investigating families and illnesses in our research group.

Managing cancer and its intercurrences: the family deciding to seek emergency care for the child

Este estudio busco entender como hace la familia del nino con el cancer para manejar la enfermedady sus intercurrencias en la casa, y como hace la familia para tomar la decision de llevar al nino a un servicio deemergencia. La historia oral fue utilizada como estrategia metodologica, y el analisis de los datos fue basadaen el “Family Management Style Framework”. Los participantes eran seis madres, con edad entre 28 y 47 anos,que vivenciaban el tratamiento del cancer de su nino. La posible necesidad de la atencion de emergencia seincorpora dentro de la rutina de la familia como recurso para manejar la enfermedad siempre que vaya masalla de la capacidad de la madre en guardar el control sobre los sintomas, lo que es rodeado de sufrimiento,debido a las incertidumbres generadas por esa situacion. Ayudar a la madre en el desarrollo de habilidadespara se fortalecer y reducir el sufrimiento resultante de las situaciones que generan incertidumbres yinseguridades en su vida de cada dia con el nino con el cancer es un desafio.DESCRIPTORES: pediatria; familia; enfermeria oncologica; nino

Morte digna da criança: percepção de enfermeiros de uma unidade de oncologia

Se objetivo identificar el significado y las intervenciones de enfermeros actuantes en oncologia pediatrica en la promocion de la muerte digna del nino. Se utilizaron interaccionismo simbolico e investigacion narrativa como referenciales teoricos y metodologicos. Datos obtenidos de ocho enfermeros de una unidad de oncologia pediatrica de hospital publico de Sao Paulo, mediante entrevistas semiestructuradas. El analisis permitio la identificacion de cinco categorias: Sentirse sin autonomia para la toma de decisiones; Cuidado de la familia; Ofrecer bienestar fisico; Valorizar el cuidado humanizado y Aprender a enfrentarse con la muerte y el morir. El estudio contribuye a ampliar la comprension de este proceso de cuidados y permite avanzar en la postulacion de un cuadro teorico que contemple la integracion de conocimientos y acciones que constituyan una atencion integral, trascendiendo la atencion de necesidades meramente clinicas y biologicas.The objective of this study was to identify the meaning of dignified death and the interventions employed by nurses in pediatric oncology to promote dignified death for children. We used Symbolic Interaction Theory as the theoretical framework and narrative research methods. The data were collected from eight nurses in the pediatric oncology unit of a public hospital in Sao Paulo through semi-structured interviews. The data analysis revealed five categories: feeling no autonomy in decision-making, caring for the family, offering physical comfort, valuing humanized care and learning to deal with death and dying. This study helps to extend the understanding of this process of care and postulates a theoretical framework that integrates the knowledge and actions that constitute care that transcends clinical and biological needs.

Crenças religiosas, doença e morte: perspectiva da família na experiência de doença

The objectives of this study were to identify predominant themes in religion, illness and death in the life histories of families and examine the relationship between religion creeds, illness and death in the discourse of families that have an ill person. The theoretical framework used in this study was Symbolic Interactionism and the method was Oral History. Participants were seventeen families with nine different religions, who had experienced the death of a relative. Data analysis showed that following a religion is a relevant part of the lives of many families and cannot be neglected in the illness context. Results point to the importance of understanding the meaning that religion has to the families in the health-disease process, so nurses can work on the promotion of health.Este estudo teve como objetivos identificar temas predominantes sobre religiao, doenca e morte nas historias de vida de familias e examinar a relacao entre as crencas religiosas, doenca e morte na narrativa de familias que conviveram com um familiar doente. Utilizamos como referencial teorico o Interacionismo Simbolico e como referencial metodologico a Historia Oral. Participaram do estudo dezessete familias de nove religioes diferentes que vivenciaram a experiencia de doenca e morte de algum familiar. Por meio da analise dos dados, foi possivel compreender que a religiosidade e parte relevante da vida de muitas familias e nao pode ser negligenciada no contexto da doenca. Os resultados apontam para a importância de se compreender o significado da religiao para a familia no processo saude doenca, a fim de que o enfermeiro possa atuar na prevencao e promocao da saude.