Unbearable Suffering: A Concept Analysis.

To understand and analyze the concept of "unbearable suffering" using a concept analysis method and to propose a new nursing diagnosis, the Walker and Avant method of concept analysis was used. Following the concept analysis method in 8 steps, a literature search was carried out in the MEDLINE, Dialnet, WOS, and PsycINFO databases between 2016 and 2020. Articles of theoretical or empirical nature, written in English, with the abstract available were included. As a result, 11 articles (4 theoretical and 7 empirical) were included. In addition, 2 cases were developed. The proposed new diagnosis, "unbearable suffering," refers to the situation of an individual who, because of a variety of factors, regardless of the cause, feels that he/she is unable to bear the suffering he/she is experiencing. The diagnosis is proposed for inclusion in "Domain 9: Coping/Stress Tolerance" and "Class 2: Coping Responses" of the North American Nursing Diagnosis Association taxonomy. Recognition of a nursing diagnosis for unbearable suffering could be key in identifying this type of suffering and facilitating interventions to reduce or mitigate it. Nurses play a fundamental role in situations of high levels of end-of-life suffering.

Professional Quality of Life and Perceived Stress in Health Professionals before COVID-19 in Spain: Primary and Hospital Care.

This study aimed to analyze the professional quality of life and the perceived stress of health professionals before COVID-19 in Spain, in primary and hospital care professionals. A cross-sectional observational study on health professionals working in health centers during the health crisis caused by COVID-19 was conducted. Professional Quality of Life (ProQoL) and Perceived Stress (PSS-14) were measured, along with socio-demographic and labor variables through an online questionnaire. A descriptive and correlation analysis was performed. A total of 537 professionals participated, both in hospital care (54.7%) and in primary care (45.3%). There was a predominance of medium Compassion Satisfaction, high Compassion Fatigue and medium Burnout. Mean scores for compassion fatigue and compassion satisfaction were slightly higher in primary care, while burnout was higher in hospital care. When primary care participants were grouped by profession, significant differences were found in relation to perceived stress and to the three subscales of professional quality of life. In hospital care, the differences were observed when comparing compassion fatigue and perceived stress by gender. In addition, with respect to Burnout it was carried out by type of contract and shift and in relation to perceived stress grouped by sex, contract and profession. The COVID-19 health crisis has had an impact on mental health and the quality of professional life of health professionals. There is a need to implement long-term contingency programs aimed at improving the emotional well-being of health service professionals.

Compassion fatigue, burnout, compassion satisfaction and perceived stress in healthcare professionals during the COVID-19 health crisis in Spain.

AIMS AND OBJECTIVES: To evaluate compassion fatigue (CF), burnout (BO), compassion satisfaction (CS) and perceived stress in healthcare professionals during the coronavirus disease 2019 (COVID-19) health crisis in Spain. BACKGROUND: Spain has been one of the countries hardest hit by the health crisis caused by the COVID-19 pandemic. Healthcare professionals have had to deal with traumatic and complex situations in the work context. In these particularly stressful situations, many professionals may develop CF or BO, which puts them at risk for mental health problems. DESIGN: Cross-sectional online survey. METHODS: A total of 506 healthcare professionals (physicians and nurses) who were working in healthcare centres during the COVID-19 pandemic participated. CF, CS and BO were assessed with the Professional Quality of Life Questionnaire, and perceived stress was measured with the Perceived Stress Scale-14. Socio-demographic and occupational variables were also analysed. Data were collected during the period of the highest incidence of cases and highest mortality rates due to COVID-19 in Spain. This article adheres to the STROBE guidelines for the reporting of observational studies. RESULTS: Physicians had higher CF and BO scores, while nurses had higher CS scores. Perceived stress scores were similar in both occupations. Professionals working in specific COVID-19 units and in emergency departments had higher CF and BO scores, while levels of CS and perceived stress were similar regardless of the workplace. RELEVANCE TO CLINICAL PRACTICE: Despite the health crisis situation and its implications for healthcare professionals, the levels of CF and BO have remained moderate/high. However, CS seems to be increasing, especially among nurses, possibly due to their motivation to relieve suffering and due to their perceived social recognition. It is necessary to implement interventions that help improve CS and prevent BO and CF among professionals in the long term.

Spiritual Dimension at the End of Life: A Phenomenological Study from the Caregiver's Perspective.

The lives of healthy and sick people are structured according to a variety of conceptual matrices. One of these matrixes consists of philosophical, spiritual, and religious convictions, being this especially relevant in the process of the end of life. The objective of the study is to understand the meaning that individuals at the end of life and the relatives of such individuals award spiritual and/or religious beliefs through an examination of caregiver narratives. Multicentric study was developed that used a qualitative design and a phenomenological approach. The study was conducted in the autonomous community of Andalusia, specifically in the provinces of Almeria, Malaga, Seville, Granada, and Huelva. The selection method was purposive sampling. Caregivers who had lost a relative in a period between 2 months and 2 years previously and who were not in a process of pathological grieving were selected for inclusion in the study. The method involved five discussion groups and 41 in-depth interviews, with a total of 87 participants. A change of paradigms is necessary in which, among other elements, the focus of palliative care is centered on the ability to address these spiritual needs, and healthcare professionals are trained to assist in the provision of such care. Another important consideration is the inequality of spiritual supported provided by clergy from various religions. At least in the cultural context of the research, Catholic chaplains were the only institutional figures whose presence was assumed necessary by health organizations. However, the cultural and/or religious diversity in the autonomous community in which the study was conducted is increasingly broad and complex. It appears necessary to incorporate a variety of clergies in health units so that all patients may find support, whether in terms of companionship or celebration.

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.

The Experiences of Family Caregivers at the End of Life: Suffering, Compassion Satisfaction and Support of Health Care Professionals: Experiences of Caregivers at the End of Life.

A death with dignity is influenced by the quality of care offered to patients. The objective of this study was to identify, through the firsthand experiences and insights of family caregivers, the key elements related to the care offered to patients with a terminal illness at the end of life. This multicenter qualitative study was based on the paradigm of hermeneutic phenomenology. Participants were relatives of patients with terminal illness who had been identified as primary caregivers. Five discussion groups and 41 in-depth interviews were organized with a total of 81 participants. The content of the interviews was analyzed based on the methods developed by Giorgi (J Phenom Psychol 1997;28(2):235-260). The results indicate the existence of 3 dimensions: the caregiver's suffering, compassion satisfaction with the care provided, and the support of health care professionals. Understanding the experiences of family members providing end-of-life care allows improved care and provides dignity in death. Health and social systems must provide comprehensive assistance covering the different aspects of needed care. Health professionals occupy a privileged position in the care of these patients and their families.

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

Competence and Compassion: Key Elements of Professional Care at the End of Life From Caregiver's Perspective.

In the act of caring for and helping people in the end-of-life process, the professional who provides care and assistance must know how to maintain a relationship of closeness, empathy, and compassion for the pain and suffering of the person who is going to die. The objective was to understand, elaborate on, and characterize the key elements of end-of-life care of patients from a caregiver's perspective through a qualitative phenomenological multicenter study. Participants were caregivers who had lost a family member at least 2 months but less than 2 years in the past. The techniques used were 5 discussion groups and 41 in-depth interviews, which included a total of 81 participants. To analyze the information, a protocol developed by Giorgi was followed. Two dimensions or units of meaning, with subdimensions, emerged: (1) Technical competence, with the subdimensions "Control of symptoms" and "Continuity of care," and (2) Compassion, with the subdimensions "Effective/affective communication," "Attitudes of kindness and closeness toward the patient and the family," and "Generosity and personalized flexibility of care." Assistance at the end of life requires the proper preparation of professionals who care for these patients, in addition to a compassionate attitude on the part of professionals and the people accompanying the dying person, that fosters a more humanized and dignified treatment in the dying process.

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.

El significado de morir dignamente desde la perspectiva de las personas cuidadoras: estudio fenomenológico / The meaning of dying with dignity from caregivers perspective: a phenomenological study

OBJETIVO: Explorar el significado de morir con dignidad desde la experiencia vivida por los testigos directos que han acompañado este proceso en personas fallecidas en Andalucía. MÉTODO: Estudio fenomenológico multicéntrico en el que se han analizado los discursos obtenidos en los grupos de discusión de 5 provincias andaluzas con la participación de 40 personas. El análisis de los datos se ha realizado a través de la propuesta de Van Manem.como herramienta informática hemos utilizado el programa Atlas Ti 7.0. RESULTADOS: El acompañamiento de los seres queridos se erige como elemento clave en la percepción de una muerte digna. También se destaca según orden de prioridad: el alivio del sufrimiento, el buen trato profesional, la capacidad de decidir y la posibilidad de expresar la dimensión espiritual. La cumplimentación de voluntades vitales anticipadas apenas es mencionada. CONCLUSIÓN: Se confirman como elementos esenciales los definidos en la Ley 2/2010, de morir con dignidad (sin sufrimiento, en compañía, respetando deseos, y posibilitando la despedida y el sentido trascendente del proceso de morir). Las personas cuidadoras en el final de la vida priorizan los aspectos psicosociales, destacando la necesidad de acompañamiento, la despedida de los seres queridos y el buen trato profesional sobre los aspectos físicos. La promoción de la Ley de Muerte Digna y Voluntades Vitales Anticipadas se encuentra aún en desarrollo

OBJECTIVE: To explore the meaning of dying with dignity from the perspective of the direct witnesses who have accompanied this process in dying people from Andalusia. METHOD: Phenomenological study conducted in different centres, which including analysing the transcriptions of the dialogues from discussion groups with 40 participants in five provinces in Southern Spain. The data was analysed using the Van Manen proposal and Atlas Ti 7.0 program was applied as a software tool. RESULTS: Being in the company of loved ones is noted as a key element in the perception of a dignified death. The following elements, according to a priority order, were also pointed out: relief of suffering, a good professional care, decision making ability, and the opportunity to consider their spiritual dimension. Achievement of their Living Wills is hardly mentioned. CONCLUSIONS: The essential elements defined in the Death with Dignity Law, 2/2010 are confirmed as being true (without suffering, with company, respecting living wills, having possibilities of the farewell, and the transcendental meaning of the death process). Caregivers, at the end of life, give priority to psychological aspects, underlying the need of company, a farewell of the loved ones, and a good professional care on the physical aspects. The promotion of the dignified Death Law and Living Wills are still being developed

[The meaning of dying with dignity from caregivers perspective: a phenomenological study]. / El significado de morir dignamente desde la perspectiva de las personas cuidadoras: estudio fenomenológico.

OBJECTIVE: To explore the meaning of dying with dignity from the perspective of the direct witnesses who have accompanied this process in dying people from Andalusia. METHOD: Phenomenological study conducted in different centres, which including analysing the transcriptions of the dialogues from discussion groups with 40 participants in five provinces in Southern Spain. The data was analysed using the Van Manen proposal and Atlas Ti 7.0 program was applied as a software tool. RESULTS: Being in the company of loved ones is noted as a key element in the perception of a dignified death. The following elements, according to a priority order, were also pointed out: relief of suffering, a good professional care, decision making ability, and the opportunity to consider their spiritual dimension. Achievement of their Living Wills is hardly mentioned. CONCLUSION: The essential elements defined in the Death with Dignity Law, 2/2010 are confirmed as being true (without suffering, with company, respecting living wills, having possibilities of the farewell, and the transcendental meaning of the death process). Caregivers, at the end of life, give priority to psychological aspects, underlying the need of company, a farewell of the loved ones, and a good professional care on the physical aspects. The promotion of the dignified Death Law and Living Wills are still being developed.