Communicating Health Information at the End of Life: The Caregivers' Perspectives.

Health information and communication are key elements that allow patients and family members to make decisions about end-of-life care and guarantee a death with dignity. Objective: To understand caregivers' experiences regarding health information and communication during the illness and death of family members. Methods: This qualitative study was conducted in Andalusia based on the paradigm of hermeneutic phenomenology. Participants were caregivers who had accompanied a family member at the end of life for over 2 months and less than 2 years. Five nominal groups and five discussion groups were established, and 41 in-depth interviews with 123 participants were conducted. Atlas.ti 7.0 software was used to analyze the discourses. A comprehensive reading was carried out along with a second reading. The most relevant units of meaning were identified, and the categories were extracted. The categories were then grouped in dimensions and, finally, the contents of each dimension were interpreted and described given the appropriate clarifications. Results: Four dimensions of the dying process emerged: differences in caregivers' perceptions of information and communication, a conspiracy of silence, consequences of the absence or presence of information, and the need for a culture change. Conclusions: Poor management of health information and communication at the end of life increased the suffering and discomfort of patients and their families. The culture of denying and avoiding death is still present today. A change in education about death would better enable health professionals to care for patients at the end of life.

Care received at the end of life in emergency services from the perspective of caregivers: A qualitative study. / Atención recibida al final de la vida en los servicios de urgencias desde la perspectiva de los cuidadores: estudio cualitativo.

OBJECTIVE: To discover the experiences of end-of-life patients attended by the emergency services, through the discourse of the family caregivers who accompanied the family member in this care transit. METHOD: A qualitative approach study, based on the paradigm of hermeneutical phenomenology. In total, 81 family caregivers participated. The techniques used were the in-depth interview and the discussion group, with a total of 5 discussion groups and 41 interviews. The period of data collection was carried out between January 2013 and June 2014. RESULTS: In the network of discourses obtained with respect to "Urgent Care", all the codes were grouped in relation to a single argumentative line: deficiencies in urgent care. Among them, we found different dimensions that are established depending on the different times of care, or the different determinant aspects of these deficiencies: disorganization of the care received, lack of experience of the professionals in emergencies, application of general protocols in the emergency services, inadequate care in the treatment received, delays in emergency care. CONCLUSIONS: In general, we highlight the dissatisfaction of the family members with respect to the care received from the emergency services. The needs of these types of situation are not covered from these services and are of low quality. Therefore, it is necessary to reorient the care protocols for these patients.

Atención recibida al final de la vida en los servicios de urgencias desde la perspectiva de los cuidadores: estudio cualitativo / Care received at the end of life in emergency services from the perspective of caregivers: A qualitative study

Objetivo: Conocer las vivencias de los pacientes que se encontraban al final de la vida y fueron atendidos por los servicios de urgencias, mediante los discursos de sus cuidadores familiares que acompañaban al familiar en este tránsito asistencial. Método: Estudio de enfoque cualitativo, basado en el paradigma de la fenomenología hermenéutica. En total participaron 81 cuidadores familiares. Las técnicas que se utilizaron fueron la entrevista en profundidad y el grupo de discusión, con un total de 5 grupos de discusión y 41 entrevistas. El período de recopilación de los datos se realizó entre enero del 2013 y junio del 2014. Resultados: En la red de los discursos obtenida respecto a la «Atención Urgente», todos los códigos se aglutinan respecto a una única línea argumentativa: las deficiencias en la atención urgente. Entre ellos, hemos encontrado distintas dimensiones que se establecen en función de los diferentes tiempos de la atención, o los distintos aspectos determinantes de estas deficiencias: desorganización de la atención recibida, poca experiencia de los profesionales en las urgencias, aplicación de protocolos generales, en los servicios de urgencias, inadecuada atención en el trato recibido, demoras en la atención en urgencias. Conclusiones: En general, destacamos la insatisfacción de los familiares con respecto a la atención en los servicios de urgencias. Las necesidades que precisan este tipo de situaciones no están cubiertas desde estos servicios y son de baja calidad. Por tanto, es necesario reorientar los protocolos de atención de estos pacientes

Objective: To discover the experiences of end-of-life patients attended by the emergency services, through the discourse of the family caregivers who accompanied the family member in this care transit. Method: A qualitative approach study, based on the paradigm of hermeneutical phenomenology. In total, 81 family caregivers participated. The techniques used were the in-depth interview and the discussion group, with a total of 5 discussion groups and 41 interviews. The period of data collection was carried out between January 2013 and June 2014. Results: In the network of discourses obtained with respect to "Urgent Care", all the codes were grouped in relation to a single argumentative line: deficiencies in urgent care. Among them, we found different dimensions that are established depending on the different times of care, or the different determinant aspects of these deficiencies: disorganization of the care received, lack of experience of the professionals in emergencies, application of general protocols in the emergency services, inadequate care in the treatment received, delays in emergency care. Conclusions: In general, we highlight the dissatisfaction of the family members with respect to the care received from the emergency services. The needs of these types of situation are not covered from these services and are of low quality. Therefore, it is necessary to reorient the care protocols for these patients

[Life support treatment preferences in critical health situations]. / Preferencias de tratamiento de soporte vital en condiciones críticas de salud.

OBJECTIVE: To explore citizens' treatment preferences in critical health situations. METHOD: We performed a cross-sectional study through a questionnaire administered to 306 participants, randomly selected from nursing consultations, cultural centers, nursing homes and the university. Treatment preferences in critical health situations were measured through the Life Support Preferences Questionnaire (LSPQ). A descriptive bivariate and multivariate analysis was performed. RESULTS: The mean age of participants was 39.28 years (SD: 24.52), 37% had primary school or no education, and 29.1% were male. Age was inversely correlated with accepting treatments; thus acceptance of life support measures was lower among participants older than 55 years than among the youngest participants and was also lower among those with a lower educational level than those with a higher educational level. No differences were found between men and women. In serious diseases with no possibility of recovery, all age groups rejected treatment. When there was the potential for recovery or for non-invasive treatments, participants aged 21 years old or older would prefer to be treated. CONCLUSION: There is wide variability among the population when accepting or rejecting life support treatment. The view that treatment should be accepted at all costs is inappropriate. Disseminating knowledge of advance directives and the use of these documents is recommended as the most effective way to respect patients' wishes when they are unable to express themselves.

Opinión de los pacientes sobre la legibilidad de los folletos de Educación para la Salud / Opinion of the patients about legible health education leaflets

Antecedentes: los Servicios de salud normalmente proporcionan a los pacientes folletos u otros documentos relacionados con tratamientos. Este material no está escrito con mucha legibilidad y los pacientes tienen dificultad en entenderlos. Objetivos: determinar la opinión de los lectores en relación a los requisitos que deberían ser encontrados en este material para asegurar la legibilidad. Metodología: metodología cualitativa de entrevistas semiestructuradas. 24 participantes fueron entrevistados con preguntas abiertas. Los participantes tenían un bajo nivel académico. Resultados: ocho categorías fueron identificadas en los folletos que debían encontrarse para aumentar la legibilidad: escribir como se habla, interés por el tema, estilo directo, ordenar las ideas, mensajes afirmativos, imágenes, amplios márgenes, letra grande y clara. Conclusiones: los profesionales sanitarios y los escritores de folletos educativos deberían involucrar a los pacientes en el proceso de diseño del material educativo (AU)

Introduction: Healthcare Service usually provides patients with leaflets relating to treatment. Often, this material is written not very legible and patients have difficulty understanding it. Aims: This study aims to determine the opinion of readers in relation to the requisites that should be met by this material in order to ensure legibility. Design: Qualitative method of semi-structured interviews. Method: Twelve interviews were conducted. Open-ended questions were asked in each interview. Participants had a low academic level, poor reading habits, but they usually were capable of read. Finding: Eight categories were identified that describe the opinion of the participants in relation to the requisites that the leaflets must meet in order to improve legibility: Writing like speaking, interest in the subject, direct style, order of the ideas, affirmative messages, images and clear fonts. Conclusions: Health professionals and writers of educational leaflets should involve patients in the process of designing educational material (AU)