From hospitalization to grief: meanings parents assign to their relationships with pediatric oncology professional. / Da hospitalização ao luto: significados atribuídos por pais aos relacionamentos com profissionais em oncologia pediátrica.

OBJECTIVE: To understand the meanings assigned by bereaved parents to their relationships with healthcare professionals during the end-of-life hospitalization of their child. METHOD: Qualitative-interpretative study based on hermeneutics. Data were collected from interviews with parents who were grieving the death of a child with cancer in the hospital and participant observation in an oncology ward. Deductive thematic analysis for data interpretation ensued. RESULTS: The experience of parents is the sum of all relationships during treatment. Therefore, meanings form a tangle of interrelated senses built not only in the interaction with these professionals, but also with the child and with grief itself. In relationships with professionals, meanings related to the memories of the child, negative emotions and regret were identified. CONCLUSION: The experiences and meanings of grief are shaped by the social processes and interactions experienced by the family in the hospital. The relationship with the professionals represents part of the support in coping with the grief after the child's death in the hospital, due to the perpetuity of the love shown for the child as a possible legacy in the legitimacy of the experienced interactions.

Da hospitalização ao luto: significados atribuídos por pais aos relacionamentos com profissionais em oncologia pediátrica / From hospitalization to grief: meanings parents assign to their relationships with pediatric oncology professional / De la hospitalización al duelo: significados atribuidos por los padres a las relaciones con profesionales en oncología pediátrica

RESUMO Objetivo Compreender os significados atribuídos por pais enlutados aos relacionamentos com profissionais da saúde durante a hospitalização do filho em final de vida. Método Estudo qualitativo-interpretativo, baseado na hermenêutica. Os dados foram coletados a partir de entrevistas com pais enlutados pela morte de um filho com câncer no hospital e de observação participante em unidade oncológica. Seguiram-se passos da análise temática dedutiva para a interpretação dos dados. Resultados A experiência dos pais é a soma de todos os relacionamentos durante o tratamento, e, portanto, os significados formam um emaranhado de sentidos inter-relacionados e construídos não apenas na interação com os profissionais, mas também com o filho e com o próprio luto. Nos relacionamentos com os profissionais foram identificados significados relacionados às memórias do filho, emoções negativas e arrependimento. Conclusão As experiências e os significados do luto são moldados pelos processos sociais e interacionais vividos pela família no hospital. O relacionamento com os profissionais representa parte do suporte no enfrentamento do luto após a morte da criança no hospital, pela perpetuidade do amor demonstrado ao filho como um legado possível na legitimidade das interações vividas.

ABSTRACT Objective To understand the meanings assigned by bereaved parents to their relationships with healthcare professionals during the end-of-life hospitalization of their child. Method Qualitative-interpretative study based on hermeneutics. Data were collected from interviews with parents who were grieving the death of a child with cancer in the hospital and participant observation in an oncology ward. Deductive thematic analysis for data interpretation ensued. Results The experience of parents is the sum of all relationships during treatment. Therefore, meanings form a tangle of interrelated senses built not only in the interaction with these professionals, but also with the child and with grief itself. In relationships with professionals, meanings related to the memories of the child, negative emotions and regret were identified. Conclusion The experiences and meanings of grief are shaped by the social processes and interactions experienced by the family in the hospital. The relationship with the professionals represents part of the support in coping with the grief after the child's death in the hospital, due to the perpetuity of the love shown for the child as a possible legacy in the legitimacy of the experienced interactions.

RESUMEN Objetivo Comprender los significados atribuidos por los padres en duelo a las relaciones con profesionales sanitarios durante la hospitalización del hijo en final de vida. Método Estudio cualitativo interpretativo, basado en la hermenéutica. Los datos fueron recogidos mediante entrevistas con padres en duelo por la muerte de un hijo con cáncer en el hospital y de observación participante en unidad oncológica. Se siguieron los pasos del análisis deductivo para la interpretación de los datos. Resultados La experiencia de los padres es la suma de todas las relaciones durante el tratamiento, por lo que los significados forman un enmarañado de sentidos interrelacionados y construidos no solo en la interacción con los profesionales, sino también con el hijo y con el mismo duelo. En las relaciones con los profesionales fueron identificados significados relacionados con las memorias del hijo, emociones negativas y arrepentimiento. Conclusión Las experiencias y los significados del duelo los moldean los procesos sociales e interactivos vividos por la familia en el hospital. La relación con los profesionales representa parte del soporte al enfrentamiento del duelo después de la muerte del niño en el hospital, por la perpetuidad del amor demostrado al hijo como un legado posible en la legitimidad de las interacciones vividas.

Challenges in conducting end-of-life research in critical care.

Critical care units present some unique challenges to the researcher, especially when the research topic of interest is related to end-of-life care. The purpose of this article is to address some of the methodological and practical issues related to conducting end-of-life research in the critical care setting. Recruitment barriers include gaining access to a clinical site, gaining access to patients, and prognostic uncertainty. Additional barriers include challenges related to informed consent, data collection, the research team, and ethical considerations. Strategies are described that can be used to guide researchers to conduct end-of-life research successfully in critical care.

Family management styles related to withdrawal of life-sustaining therapy from adults who are acutely ill or injured.

The purpose of this study is to define family management styles (FMSs) and determine distinctive characteristics of each FMS used by families participating in the process of withdrawal of life-sustaining therapy from a family member with an unexpected, life-threatening illness or injury. A total of 56 family members of 19 families participated in interviews and observations. Data were managed and analyzed maintaining a family focus, and each family was first examined for within family patterns of management, then compared to other families to identify differing patterns. A typology of five FMSs emerged: progressing, accommodating, maintaining, struggling, and floundering. Within this typology, dimensions emerged describing the families' varying definitions of the situations, management behaviors, and consequences. FMSs were constructed through typifying how these dimensions differed across families. Understanding FMSs can aid health care providers as families are assessed and interventions are planned.

Withdrawal of cardiac medications and devices.

Withdrawal of life-sustaining therapies such as cardiac medications, pacemakers, internal cardioverter defibrillators, and ventricular assist devices occurs in patients with advanced cardiac disease as goals of treatment transition from active to less aggressive. This article defines life-sustaining therapies and describes ethical and legal considerations related to withdrawal of cardiac medications and cardiac devices. Healthcare providers need to anticipate clinical situations in which implantable cardiac devices and medications are no longer desired by patients and/or are no longer medically appropriate. Discussions are important between patients, families, and healthcare providers that focus on each patient's condition, prognosis, advance directives, goals of care, and treatment options. Critical care nurses support each patient and his or her family and work with other members of the healthcare team to achieve a peaceful death.

Families and withdrawal of life-sustaining therapy: state of the science.

As the science progresses related to families participating in the process of withdrawal of life-sustaining therapy (LST), it is important to assess research accomplishments, identify gaps in the knowledge and ways to build on the science, and suggest new directions for future research. Research-based articles related to families participating in the process of withdrawal of LST were obtained by conducting computer-assisted searches and analyzing references lists. A grid was developed that included key variables from each of the studies. A second grid was developed and included the subthemes that evolved from the analysis. Eleven studies were reviewed and analyzed. Themes that evolved include illness context, family context, and family and health care provider interactions. Important information has been discovered about the family decision-making process and helpful health care provider interactions. Additional research focused on withdrawal of LST is needed to understand important concepts, develop instruments, and test interventions.

Withdrawal of life-sustaining therapy after sudden, unexpected life-threatening illness or injury: interactions between patients' families, healthcare providers, and the healthcare system.

BACKGROUND: Withdrawal of life-sustaining therapy in intensive care units is increasing. Patients' families are intimately involved in this process because the patients are usually unable to participate. Little is known about family members' interactions with healthcare providers and the healthcare system during this process. OBJECTIVE: To describe the interactions between patients' family members, healthcare providers, and the healthcare system during withdrawal of life-sustaining therapy after a sudden, unexpected illness or injury. METHODS: The investigation was part of a larger interpretative phenomenological study. Nineteen families (56 family members) who participated in the process of withdrawal of life-sustaining therapy for a family member were interviewed and observed. An inductive approach to data analysis was used to discover units of meaning, clusters, and categories. RESULTS: The families' experiences involved a variety of dimensions, including issues with healthcare providers (bonds and consistency with nurses and physicians, physicians' presence, information, coordination of care, family meetings, sensitivity to time, and preparation for the dying process) and issues with the healthcare system (parking, struggles with finding privacy, and transfers of patients). CONCLUSIONS: Patients' families need information, guidance, and support as the families participate in the process of withdrawal of life-sustaining therapy. The results of this study have important implications for clinical practice and future research.