O papel da família nos planos de tratamento e no cuidado pediátrico hospitalar em condições crônicas complexas de saúde / The role of family in treatment plans and pediatric inpatient care in complex chronic health conditions

Resumo Este artigo examina o papel da família e a interação com profissionais na elaboração do plano de tratamento e na produção do cuidado com crianças em condições crônicas complexas de saúde numa unidade pediátrica de hospital de média e alta complexidade, referência no estado do Rio de Janeiro. Através de abordagem qualitativa, empregou-se a observação participante e entrevistas com mães de pacientes e gestores, analisadas por meio da abordagem da psicossociologia francesa. Os resultados apontam limites na inclusão dos familiares nas decisões e rumos do tratamento. Entre os profissionais, constatamos posicionamentos variados, sendo dominante o uso da comunicação de tipo informativo, empregada de forma irregular, que se intensificava quando havia decisões difíceis a serem tomadas. Em algumas situações também observou-se a capacidade de acolhimento ao familiar. Pouco do contexto psicossocial foi considerado. As mães tornavam-se responsáveis por tarefas técnicas da rotina de enfermagem, às quais acrescentavam o zelo e o carinho inerentes à maternagem. O reconhecimento do entrelaçamento das funções técnicas e de maternagem favorece a vitalidade e autonomia da mãe, mas também é fonte de angústia e de alta exigência psíquica. Por vezes, as mães são vistas como instrumento no cuidado, reduzindo-se seu espaço singular como sujeito.

Abstract This article examines the family's role and the interaction with professionals when developing treatment plan and providing care for children with complex chronic health conditions in a pediatric unit of medium and high complexity, reference hospital in Rio de Janeiro state. Through a qualitative research, participant observation and interviews with patient's mothers and managers analyzed based on the French psychosociology were performed. The results point out limits in the inclusion of family members in decisions and directions of treatment. Among the professionals, we found different attitudes, in which communication with families by using irregular informational communication intensified when faced with difficult decisions to be made was predominant. In some situations, hospitality to the family member was observed. Little of the psychosocial context was considered. Mothers became responsible for technical tasks of the nursing routine, to which they added the zeal and affection inherent in mothering. Recognizing the combination between technical and mother's functions favors the mother's vitality and autonomy, but also causes anguish and considerable psychological pressure. Then, they were an instrument in care, reducing their singular space as subject.

Relationships between oncohematopediatrics, mothers and children in communicating bad news. / Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis.

We present a study about the relations between pediatric oncological haematologists, mothers, and children in sharing bad news (BN) in a public hospital in Rio de Janeiro. The text emphasizes the intertwining of technique and emotions for the treatment of children with diagnoses in which the fatal outcome is always a probability. We used a qualitative approach, privileging participant observation and open interviews with oncologists (at this service all professionals were female) and mothers. We sought to understand the importance of communication which includes expressions and control of emotions; bioethical issues that require sensitivity, serenity, and truth about approaching the end of life; and how the professionals balance proximity to children and families and objectivity in their activity. The main results showed: intense exchanges on BN among professionals; relapse of children who were evolving positively as the most difficult news; constant update of BN facing terminally ill children; quality of communication influencing the treatment; professionals permanently balancing between closeness and distance from patients and evidence of the their irreplaceable role to secure the family and the child.

Relações entre oncohematopediatras, mães e crianças na comunicação de notícias difíceis / Relationships between oncohematopediatrics, mothers and children in communicating bad news

Resumo Apresenta-se um estudo de relações entre oncohematopediatras, mães e crianças no compartilhamento de notícias difíceis (ND) num hospital público do Rio de Janeiro. O texto enfatiza o entrelaçamento de técnica e emoção durante o tratamento de crianças com diagnósticos em que a probabilidade de desfecho fatal está sempre presente. Utilizou-se abordagem qualitativa, privilegiando-se observação participante e entrevistas abertas com as médicas (neste serviço, todas as profissionais eram do sexo feminino) e mães. Buscou-se compreender a importância da comunicação que inclui expressões e controle das emoções; aspectos bioéticos que exigem sensibilidade, serenidade e verdade sobre a aproximação do final da vida; e como as médicas equilibram proximidade com as crianças e familiares e objetividade em sua atuação. Os principais resultados mostram: intensas trocas sobre ND entre as profissionais; recaída de crianças que estavam evoluindo positivamente como a notícia mais difícil; atualização da ND diante dos pacientes terminais; influência da qualidade da comunicação no tratamento; exercicío permanente de equilíbrio entre proximidade e distanciamento por parte das profissionais e evidência do insubstituível papel delas para dar segurança à família e à criança.

Abstract We present a study about the relations between pediatric oncological haematologists, mothers, and children in sharing bad news (BN) in a public hospital in Rio de Janeiro. The text emphasizes the intertwining of technique and emotions for the treatment of children with diagnoses in which the fatal outcome is always a probability. We used a qualitative approach, privileging participant observation and open interviews with oncologists (at this service all professionals were female) and mothers. We sought to understand the importance of communication which includes expressions and control of emotions; bioethical issues that require sensitivity, serenity, and truth about approaching the end of life; and how the professionals balance proximity to children and families and objectivity in their activity. The main results showed: intense exchanges on BN among professionals; relapse of children who were evolving positively as the most difficult news; constant update of BN facing terminally ill children; quality of communication influencing the treatment; professionals permanently balancing between closeness and distance from patients and evidence of the their irreplaceable role to secure the family and the child.

Narrativas da experiência de pais de crianças com fibrose cística / Narrativas de la experiencia de padres de niños con fibrosis quística / Narratives of the parents' experience of children with cystic fibrosis

O trabalho analisa a experiência dos pais de crianças com fibrose cística. Segundo referências socioantropológicas, a experiência da doença altera a percepção do mundo. A análise de dez narrativas, durante dois meses de 2010, num hospital público do Rio de Janeiro, Brasil, considerando cenários, persona-gens e enredos, aponta: dificuldades para obtenção de diagnóstico e compre-ensão da doença; a troca de informações com outras famílias; ausência afetiva paterna; sobrecarga emocional e a função de técnica de saúde materna; o so-frimento dos irmãos; a escola como local de vida; a presença constante da morte e as dificuldades com os profissionais de saúde. Aspectos importantes rodeiam os familiares, podendo ser pouco conhecidos pelos profissionais, devendo ser considerados nas tomadas de decisão e planos terapêuticos...

El trabajo analiza la experiencia de los padres de niños con fibrosis quística. Según referencias socio-antropológicas, la experiencia de la enfermedad altera la percepción del mundo. El análisis de diez narrativas, durante dos meses de 2010, en un hospital público de Río de Janeiro, Brasil, considerando escenarios, personajes y guiones, señala lo siguiente: dificultades para la obtención de diagnóstico y entendimiento de la enfermedad; el intercambio de informaciones con otras familias; la ausencia afectiva paterna; sobrecarga emocional y la función de técnica de salud materna; el sufrimiento de los hermanos; la escuela como local de vida; la presencia constante de la muerte y las dificultades con los profesionales de la salud. Hay aspectos importantes que rodean a los familiares y que pueden ser poco conocidos por los profesionales, debiendo ser considerados en las tomas de decisión y planes terapéuticos...

This study analyses the parents' experience of children with cystic fibrosis. From the perspective of social anthropology, the experience of disease changes the perception of the world. Ten narratives were analyzed over a two-month period in 2010, at a public hospital in Rio de Janeiro, Brazil. The results, considering scenarios, characters and plots, highlighted: difficulties in obtaining diagnoses and understanding of the disease; exchange of information with other families; absence of paternal affection; maternal emotional overload and the role of ‘health technician'; distress among siblings; school as a place of life; constant presence of death; and difficulties with healthcare professionals. Important issues surrounding family members may be poorly known by the professionals but need to be taken into account in decision-making and in drawing up therapeutic plans...

Notícias difíceis: sentidos atribuídos por familiares de crianças com fibrose cística / Difficult news: meanings attributed by family members of children with cystic fibrosis

Este artigo apreendeu sentidos atribuídos por familiares de crianças com fibrose cística sobre as notícias difíceis transmitidas por profissionais de saúde durante o tratamento num hospital público terciário da zona sul do Rio de Janeiro. Resulta de pesquisa qualitativa e análise de dez narrativas colhidas em dois meses de 2010. Supôs-se que esses sentidos são pouco conhecidos, interferem na vivência e enfrentamento do processo de adoecimento e cuidado dos filhos. Evidenciou-se que o conteúdo da notícia era percebido diferentemente segundo: a clareza com que ela era adequada a cada familiar, a forma direta de transmiti-la sem preparação do ouvinte, a consideração do contexto em que viviam as pessoas e as consequências que nele provocaria; a presença de um acompanhante no momento da notícia e a fragmentação das informações. Os resultados indicaram a necessidade de sensibilizar profissionais para aspectos comunicacionais nos encontros clínicos e inclusão dessa capacitação na graduação e/ou ao longo da atividade profissional. Viu-se que a notícia, embora não parecesse difícil para os profissionais podia sê-lo para familiares; que ela afeta a experiência da doença e que os familiares esperam dos profissionais equilíbrio entre eficiência técnica e competência relacional.

This article studied some of the meanings that difficult news assumes when transmitted by health professionals to relatives of young cystic fibrosis patients undergoing treatment at a public hospital located in the south zone of the city of Rio de Janeiro, Brazil. It is the result of qualitative research and analysis of ten narratives collected during two months in 2010. These meanings are not understood by professionals and interfere with the evolution of the illness, the coping process and the care given to the children. It has been observed that the content of the news is perceived differently depending on: The clarity with which it is transmitted to each family member; The forthright way it is conveyed without the preparation of the listener; The consideration of the context in which people live and the consequences involved; The presence of a family member when the news is delivered; and the fragmentation of information. Results indicate the need to make professionals aware of the importance of communication aspects in clinical meetings and the inclusion of this training process in the medical curriculum as well as during physicians' professional lives. It seems that in delivery of the news the family expects a balance between technical efficiency and conversational tact from professionals.

Uma releitura da obra de Elisabeth Kubler-Ross / A reappraisal of the works of Elisabeth Kubler-Ross

Este artigo apresenta uma releitura de parte da obra de Elizabeth Ross, uma das autoras mais citadas sobre a questão da terminalidade da vida, do luto e do morrer. Sua obra tem sido de grande contribuição tanto para os profissionais de saúde como para pais, mães, filhos, parentes, leigos e religiosos que vivenciam o luto. Também tem sido alvo de controvérsias relacionadas a questões éticas e quanto a seu rigor científico. Os livros aqui comentados são: On death and dying (Sobre A morte e o morrer, de 1969); Questions and answers on death and dying (Perguntas e respostas sobre a morte e o morrer, de 1971); Living with death and dying(Vivendo com a morte e os moribundos, de 1981); On children and death (Sobre as crianças e a morte, de 1983); On life after death (Sobre a vida depois da morte, de 1991) e Life lessons (Lições de vida, de 2000).

This article presents a reappraisal of part of the works of Elizabeth Kubler-Ross, one of the most quoted authors addressing the end of life process, mourning and dying. Her work has contributed to a clearer understanding of these issues by health professionals, families, religious and lay people who handle and/or experience mourning. She has also been the subject of controversy related to ethical issues and the scientific rigor of her work. The books analyzed in this article are: On death and dying (1969); Questions and answers on death and dying (1971); Living with death and dying (1981); On children and death(1983); On life after death (1991) and Life lessons (2000).

Notícias difíceis e o posicionamento dos oncopediatras: revisão bibliográfica / Difficult news and the standpoint of pediatric oncologists: a bibliographical review

Com objetivo de discutir e compreender as experiências de oncopediatras diante da tarefa de comunicar notícias difíceis (ND) a pacientes e familiares procedeu-se uma revisão bibliográfica a partir das bases de dados da Biblioteca Virtual em Saúde (BVS) que contém artigos divulgados por PubMed, Lilacs, Scielo, Scopus e SciVerse, buscando a produção sobre o tema. Os artigos disponíveis, avaliados pela análise temática, evidenciam as seguintes questões: carência de estudos focando a percepção dos profissionais sobre as notícias difíceis; a comunicação como estratégia pela qual, aspectos psicossociais, culturais, bioéticos, legais e emocionais são tratados; expectativa de habilidades médicas para as quais esses profissionais não foram treinados. Observou-se também que informações e treinamento dos profissionais sobre estratégias a cerca dos modos de lidar com a comunicação de ND são insuficientes para acompanhar o dinamismo das ocorrências e das relações pessoais na área de oncologia onde o paciente costuma estar ou sentir-se em constante ameaça de vida.

In order to discuss and understand the experiences of oncologists faced with the task of communicating difficult news to children and their close family members, a bibliographical review was conducted in the Virtual Health Library databases containing the literature published by PubMed, Lilacs, Scielo, Scopus and SciVerse with input on the theme. The articles available evaluated by thematic analysis reveal the following aspects: the lack of studies focusing on the perception of professionals about imparting difficult news; communication as a strategy by which psychosocial, cultural, bioethical, legal and emotional aspects are handled; that more is expected from physicians than they were trained for. It was also seen that the information and training of professionals in strategies regarding how to handle the communication of difficult news needs to be ongoing in order to keep up with the dynamism of the occurrences and the physician-patient relations in the oncological field in which patients tend to be or feel under constant life-threatening conditions.

[Difficult news: meanings attributed by family members of children with cystic fibrosis]. / Notícias difíceis: sentidos atribuídos por familiares de crianças com fibrose cística.

This article studied some of the meanings that difficult news assumes when transmitted by health professionals to relatives of young cystic fibrosis patients undergoing treatment at a public hospital located in the south zone of the city of Rio de Janeiro, Brazil. It is the result of qualitative research and analysis of ten narratives collected during two months in 2010. These meanings are not understood by professionals and interfere with the evolution of the illness, the coping process and the care given to the children. It has been observed that the content of the news is perceived differently depending on: The clarity with which it is transmitted to each family member; The forthright way it is conveyed without the preparation of the listener; The consideration of the context in which people live and the consequences involved; The presence of a family member when the news is delivered; and the fragmentation of information. Results indicate the need to make professionals aware of the importance of communication aspects in clinical meetings and the inclusion of this training process in the medical curriculum as well as during physicians' professional lives. It seems that in delivery of the news the family expects a balance between technical efficiency and conversational tact from professionals.

[A reappraisal of the works of Elisabeth Kubler-Ross]. / Uma releitura da obra de Elisabeth Kubler-Ross.

This article presents a reappraisal of part of the works of Elizabeth Kubler-Ross, one of the most quoted authors addressing the end of life process, mourning and dying. Her work has contributed to a clearer understanding of these issues by health professionals, families, religious and lay people who handle and/or experience mourning. She has also been the subject of controversy related to ethical issues and the scientific rigor of her work. The books analyzed in this article are: On death and dying (1969); Questions and answers on death and dying (1971); Living with death and dying (1981); On children and death(1983); On life after death (1991) and Life lessons (2000).

[Difficult news and the standpoint of pediatric oncologists: a bibliographical review]. / Notícias difíceis e o posicionamento dos oncopediatras: revisão bibliográfica.

In order to discuss and understand the experiences of oncologists faced with the task of communicating difficult news to children and their close family members, a bibliographical review was conducted in the Virtual Health Library databases containing the literature published by PubMed, Lilacs, Scielo, Scopus and SciVerse with input on the theme. The articles available evaluated by thematic analysis reveal the following aspects: the lack of studies focusing on the perception of professionals about imparting difficult news; communication as a strategy by which psychosocial, cultural, bioethical, legal and emotional aspects are handled; that more is expected from physicians than they were trained for. It was also seen that the information and training of professionals in strategies regarding how to handle the communication of difficult news needs to be ongoing in order to keep up with the dynamism of the occurrences and the physician-patient relations in the oncological field in which patients tend to be or feel under constant life-threatening conditions.