An analysis of the experiences of bereaved relatives and health care providers following palliative sedation: a study protocol for a qualitative international multicenter case study.

BACKGROUND: Patients at the end-of-life may experience refractory symptoms of which pain, delirium, vomiting and dyspnea are the most frequent. Palliative sedation can be considered a last resort option to alleviate one or more refractory symptoms. There are only a limited number of (qualitative) studies exploring the experiences of relatives of sedated patients and their health care professionals (HCPs). The aims of this study protocol are: 1) to elicit the experiences of bereaved relatives and health care professionals of patients treated with palliative sedation and 2) to explore the understanding of the decision-making process to start palliative sedation across care settings in 5 European countries. METHODS: This study protocol is part of the larger HORIZON 2020 Palliative Sedation project. Organisational case study methodology will be used to guide the study design. In total, 50 cases will be conducted in five European countries (10 per country). A case involves a semi-structured interview with a relative and an HCP closely involved in the care of a deceased patient who received some type of palliative sedation at the end-of-life. Relatives and health care professionals of deceased patients participating in a linked observational cohort study of sedated patients cared for in hospital wards, palliative care units and hospices will be recruited. The data will be analyzed using a framework analysis approach. The first full case will be analyzed by all researchers after being translated into English using a pre-prepared code book. Afterwards, bimonthly meetings will be organized to coordinate the data analysis. DISCUSSION: The study aims to have a better understanding of the experiences of relatives and professional caregivers regarding palliative sedation and this within different settings and countries. Some limitations are: 1) the sensitivity of the topic may deter some relatives from participation, 2) since the data collection and analysis will be performed by at least 5 different researchers in 5 countries, some differences may occur which possibly makes it difficult to compare cases, but using a rigorous methodology will minimize this risk.

Instrumentos para valorar al paciente con insuficiencia cardíaca avanzada: una revisión de la literatura / Assessment instruments for patients with advanced heart failure: a review of the literature

Una cuarta parte de las personas con insuficiencia cardíaca se encuentran en una etapa avanzada de la enfermedad durante la cual experimentan numerosos síntomas, comunes y angustiantes, que impactan en todas las esferas de la persona. En este contexto, la valoración y el seguimiento clínico de los pacientes se debe realizar de manera frecuente. A través de esta revisión, se pretende identificar cuáles son los instrumentos que se utilizan en la valoración de enfermos con insuficiencia cardíaca avanzada. Para este trabajo se ha considerado instrumento a cualquier tipo de cuestionario, escala, test o prueba funcional, que se utilice para valorar algún aspecto de estos enfermos. Se han identificado 49 herramientas que permiten valorar síntomas, aspectos psicológicos, cognitivos, espirituales y de calidad de vida. La información proporcionada sobre los instrumentos más utilizados y su disponibilidad y aplicabilidad constituye un primer paso para su posible integración en la práctica clínica diaria. De este modo, los profesionales que trabajan con estos enfermos, podrán mejorar la identificación de necesidades específicas, posibilitando el posterior manejo de las mismas y su seguimiento (AU)

A quarter of the people with heart failure are at an advanced stage of the disease, during which they experience numerous common and distressing symptoms that have an impact on all spheres of their life. In this context, there is a need for frequent assessment and clinical monitoring of patients. The aim of this review is to identify the instruments used in assessing patients with advanced heart failure. For the purposes of this study, any type of questionnaire, scale or functional test used to assess some aspect of these patients was considered to be an instrument. Forty-nine tools were identified that make it possible to assess symptoms, psychological, cognitive and spiritual aspects and quality of life. The information provided on the most used instruments and their availability and applicability is a first step for their possible integration into daily clinical practice. Thus, professionals who work with these patients can improve the identification of specific needs, enabling their subsequent management and monitoring (AU)

[Assessment instruments for patients with advanced heart failure: a review of the literature]. / Instrumentos para valorar al paciente con insuficiencia cardíaca avanzada: una revisión de la literatura.

A quarter of the people with heart failure are at an advanced stage of the disease, during which they experience numerous common and distressing symptoms that have an impact on all spheres of their life. In this context, there is a need for frequent assessment and clinical monitoring of patients. The aim of this review is to identify the instruments used in assessing patients with advanced heart failure. For the purposes of this study, any type of questionnaire, scale or functional test used to assess some aspect of these patients was considered to be an instrument. Forty-nine tools were identified that make it possible to assess symptoms, psychological, cognitive and spiritual aspects and quality of life. The information provided on the most used instruments and their availability and applicability is a first step for their possible integration into daily clinical practice. Thus, professionals who work with these patients can improve the identification of specific needs, enabling their subsequent management and monitoring.

The psychological needs of patients receiving chemotherapy: an exploration of nurse perceptions.

This study explored the perceptions of a group of registered oncology nurses about the psychological needs of patients with cancer receiving chemotherapy and how the nurses meet these. Eight nurses who provided chemotherapy and were working in a local oncology centre participated. A semi-structured interview was used to explore nurses' perceptions, and how they meet these patients' needs. The analysis of interview transcripts revealed that these nurses agreed that patients with cancer receiving chemotherapy had psychological needs. Moreover, they were conscious that some of the physical side-effects could have a psychological impact on the patients. Although nurses did not use any assessment tool for psychological assessment, they identified two main stages during the treatment when patients needed more psychological support: at the beginning and at the end of the chemotherapy. They explained how they tried to meet patients' psychological needs but they also mentioned several factors that influenced the psychological support that patients received.