Calidad de vida profesional de quienes laboran en cuidados paliativos y su relación con el autocuidado, la atención plena y el sentido de vida / Professional quality of life of palliative care staff and its relationship with selfcare, mindfulness and meaning of life

Introducción: La calidad de vida profesional (que incluye satisfacción y fatiga por compasión) y sus factores asociados, han sido poco explorados en cuidados paliativos (CP) en Latinoamérica. Objetivo: Determinar la calidad de vida profesional en CP y su relación con el autocuidado, la capacidad de atención plena y el sentido de vida. Método: Estudio observacional, de corte transversal. Participaron profesionales laborando en CP en Colombia. Se empleó el PROQOL para evaluar satisfacción por compasión (SC), Burnout y trauma secundario (TS), el PSCS para examinar autocuidado, el MAAS para examinar atención plena y la Escala dimensional de sentido de vida (EDSV). Se realizaron análisis descriptivos, correlacionales y de regresión múltiple. Resultados: participaron 108 profesionales. Edad promedio 38 años, 55% médicos, 73% mujeres, 32,4% reportaron elevada afectación del bienestar por la Covid-19. El 85% obtuvieron puntuaciones medias o altas en SC, el 75,9% en Burnout y el 81,5% en TS (con medianas de 42.5, 21 y 12, respectivamente). Hubo una correlación positiva y significativa entre PSCS, MAAS y EDSV con SC, pero negativa y significativa con Burnout y TS. En conjunto, la SC, el MAAS y el autocuidado social tuvieron un efecto predictivo negativo sobre los niveles de Burnout (R2=0,535). Conclusiones: Aunque la mayoría de participantes están satisfechos con su labor, los índices de Burnout y TS fueron elevados durante el período de pandemia. El en conjunto, la satisfacción por compasión, la atención plena y el autocuidado social predijeron niveles menores de Burnout, indicando potenciales vías de apoyo para quienes ejercen CP (AU)

Introduction. Professional quality of life (involving compassion satisfaction and compassion fatigue) and its related factors have been poorly explored in Palliative Care (PC). Objectives. To determine the professional quality of life of PC practitioners in Colombia and its relationship with self-care, mindfulness and meaning of life. Methods. Observational cross-sectional study. Practicing professionals of PC of Colombia were invited. Compassion Satisfaction (CS), Burnout, and Secondary Trauma (ST) were assessed using PROQOL; selfcare was examined using PSCS; MAAS was used to assess Mindfulness capacity, and the Dimensional Scale of sense of life (EDSV) was also employed. Descriptive correlational, and multiple regression analyses were performed. Results. One-hundred and eight participants participated; mean age of 38 years, 73% women, 32,4% indicated high impact on their wellbeing due to Covid-19; 85% of participants showed medium-high scores on CS, 75,9% on Burnout, and 81,5% on ST (median scores of 42.5, 21, and 12, respectively). Scores on PSCS, MAAS and EDSV positively and significantly correlated with CS, and were negatively and significantly related with Burnout and ST. Altogether, SC, MAAS and social selfcare had a negative predictive effect on Burnout levels (R2=0.538). Conclusion. Although most participants were satisfied with their jobs, scores on Burnout, and TS were high during the Pandemic. Together, compassion satisfaction, mindfulness and social selfcare were predictive of lower levels of Burnout, signaling potential lines of intervention for PC practitioners (AU)

Compassionate communities: How to assess their benefit? A protocol of a collaborative study between different countries.

Background: Communities and local governments invest in compassionate communities (CCs) a great deal of time, money, effort, and work. However, it is not known whether the CCs are having the effect they are expected to have, so the value of continuing with these initiatives is unknown, and there is a need for a model for evaluating CCs to solve the question. Objectives: To identify a set of core outcomes or benefits that should be measured to assess the impact of the CCs. Design: Multiple-methods study involving three communities, each in a different country (Argentina, Colombia, and Switzerland). Methods and analysis: To identifying the set of core outcomes, which is the first step in developing the CC evaluation model, five phases will follow: online meetings, literature review, fieldwork, Delphi survey, and social transfer. We will involve members of the local communities of Bern, Buenos Aires, and Medellin at three different levels: (1) citizens (e.g. patients, caregivers, and family members), (2) organizations and institutions involved in the program implementation (e.g. health care organizations, churches, non-governmental organizations, and schools), and (3) political and governmental sectors. Ethics: The study will be conducted following existing international regulations and guidance such as the Declaration of Helsinki. The ethics committee of Pallium Latin America and the ethics committee of the canton of Bern considered our application exempt from the need for approval. Ethics approval in Bern and Buenos Aires is in the process of being obtained. The ethics committee of the Pontifical Bolivarian University approved this protocol. Discussion: We expect that this project will help bridge the gap in knowledge regarding the measurable impact of the CCs and enhance more CC development.

El impacto en la calidad de vida, la depresión y el manejo analgésico se asocian al sufrimiento en pacientes con fibromialgia. Un estudio transversal / Impact on quality of life, depression and analgesic use, are associated with suffering in fibromyalgia patients. A cross-sectional study

Introducción: La fibromialgia (FM) es un trastorno complejo que genera impacto en la salud pública. Son escasos los estudios que determinan el sufrimiento en FM, pues el abordaje se enfoca en el dolor. Objetivo: Estimar la prevalencia de sufrimiento en los pacientes con FM y su asociación con el impacto en calidad de vida, malestar emocional, soledad, eventos vitales y aspectos clínicos y sociodemográficos en una institución de salud privada de Medellín (Colombia). Método: Se realizó un estudio transversal, en una institución especializada en manejo de dolor crónico. Se evaluó el grado de sufrimiento (PRISM), nivel de dolor (EVA), impacto de la FM (FIQR), soledad (UCLA), ansiedad y depresión (HADS), eventos vitales estresantes (CSV) y las características sociodemográficas y clínicas. Se planteó un modelo explicativo con una regresión logística. Resultados: El 55,5 % IC95 (50,0-61,1) presentó sufrimiento intenso. Se obtuvo un modelo explicativo, donde el impacto en la calidad de vida, la depresión y la toma de analgésicos fueron los factores más relevantes en el sufrimiento intenso. Discusión: Los pacientes con FM manifiestan un sufrimiento importante que debe ser atendido por el personal de salud. Si bien el dolor es un elemento relevante, existen otros factores a los que debe prestarse atención, como el impacto que causa la enfermedad en la persona y la depresión asociada.(AU)

Introduction: Fibromyalgia (FM) is a complex disorder with significant impact on public health. Few studies have explored suffering in FM, since its approach focuses on pain management. Objective: To estimate the prevalence of suffering in patients with FM and its association with impact on quality of life, emotional distress, loneliness, vital stress and clinical and sociodemographic factors in a private healthcare institution in Medellín (Colombia). Method: A cross-sectional study was conducted in an institution specialized in chronic pain management. The degree of suffering (PRISM), level of pain (EVA), impact of FM (FIQR), loneliness (UCLA), anxiety and depression (HADS), stressful life events (CSV) and sociodemographic and clinical characteristics were evaluated. An explanatory model was proposed using logistic regression. Results: 55.5 % IC95 (50,0-61,1) presented intense suffering. An explanatory model was obtained, where impact, depression and analgesic intake were the most relevant factors in intense suffering.Discussion: Patients with FM manifest an important suffering that should be attended by health personnel. Although pain is a relevant element, there are other factors to which attention should be paid, such as the impact of the disease on the person and the associated depression.(AU)

Compassion and Self-Compassion: Counterfactors of Burnout in Medical Students and Physicians.

OBJECTIVE: To examine the relationship between self-compassion, compassion for others and Burnout in medical students and physicians. METHODS: A cross-sectional study was conducted. Medicine students and general physicians from two Colombian cities participated (n = 359). The Compassion Scales and the Maslach Inventory were administered. An Exploratory Structural Equation approach was used for validating new measures and testing for relationships between latent variables. RESULTS: Most participants were students (85.9%), mean age was 22 years (SD = 7), 55.2% were female, 62,6% dedicated more than 48 weekly hours to study or practice, while physicians had worked a mean of 10.34 years (SD = 8.67). Self-compassion and Compassion for others action subscales were validated, but engagement subscales of were not. Participant´s compassion actions for others and self-compassion actions are negatively related to depersonalization and emotional exhaustion, respectively. Additionally, compassion dimensions were positively associated with professional accomplishment. CONCLUSION: Our findings indicate that compassion and self-compassion actions inversely relate to different components of Burnout and could constitute protective factors against the stress of healthcare. Compassion and self-compassion training programs for medical students and physicians might be an alternative to avoid Burnout, diminishing physicians' depersonalization and emotional exhaustion while enhancing their professional accomplishment.

Factors related to positive attitudes toward palliative care: Direct and indirect effects of self-care self-efficacy, knowledge, and beliefs.

CONTEXT: Knowledge, beliefs, and attitudes toward palliative care (PC) constitute barriers to its access. Few studies have focused on the intrinsic relationship between these variables, and none has examined the relationship between them and self-care self-efficacy. OBJECTIVE: To examine the direct and indirect effects of self-care self-efficacy, knowledge, and beliefs on attitudes toward PC. METHODS: A cross-sectional predictive study was conducted. Self-care self-efficacy, knowledge, attitudes, and beliefs about PC were analyzed using information from the Health Information National Trends Survey (HINTS 5, cycle 2, 2018). Data from 1,162 participants were considered. Structural equation modeling (SEM) was used to represent the statistical mediation model with latent and observable variables. RESULTS: The structural model presents positive coefficients indicating that self-care self-efficacy significantly predicts knowledge (ß = 0.127, p < 0.001) and beliefs (ß = 0.078, p = 0.023). Similarly, knowledge is associated with attitudes (ß = 0.179, p < 0.001) and beliefs (ß = 0.213, p < 0.001). The beliefs measure is also significantly related to attitudes (ß = 0.474, p < 0.001). In addition, this structural multiple mediation model shows optimal goodness-of-fit indices: χ2/df = 3.49, CFI = 0.983, TLI = 0.976, RMSEA = 0.046 [90% CI: 0.037-0.056], SRMR = 0.038. CONCLUSION: Self-care self-efficacy is significantly associated with knowledge and beliefs about PC, which in turn are related to each other. Altogether, these variables predict positive attitudes toward PC. Understanding the relationship between these variables is relevant for targeting-specific populations and designing timely strategies to improve access to PC.

Interactions Between Intensive Care and Palliative Care Are Influenced by Training, Professionals' Perceptions and Institutional Barriers.

Background: There is growing interest in the use of a Palliative care approach in Intensive care. However, it tends to remain inconsistent, infrequent or non-existent, as does its acceptance by intensive care physicians. This study sought to explore the perceptions, level of knowledge, perceived barriers, and practices of physicians regarding palliative care practices (PC) in Intensive Care Units (ICU). Methods: Descriptive-correlational study. Participating physicians working in ICU in Colombia (n = 101) completed an ad hoc questionnaire that included subscales of perceptions, knowledge, perceived barriers, and PC practices in ICU. A Structural Equation Model (PLS-SEM) was used to examine the reciprocal relationships between the measured variables and those that could predict interaction practices between the 2 specialties. Results: First, results from the measurement model to examine the validity and reliability of the latent variables found (PC training, favorable perceptions about PC, institutional barriers, and ICU-PC interaction practices) and their indicators were obtained. Second, the structural model found that, a greater number of hours of PC training, a favorable perception of PC and a lower perception of institutional barriers are related to greater interaction between PC and ICU, particularly when emotional or family problems are detected. Conclusions: PC-ICU interactions are influenced by training, a positive perception of PC and less perceived institutional barriers. An integrated ICU-PC model that strengthens the PC training of those who work in ICU and provides clearer guidelines for interaction practices, may help overcome perceived barriers and improve the perception of the potential impact of PC.

Prevalence and characteristics of patients with heart failure needing palliative care.

BACKGROUND: Few hospitals and heart failure (HF) clinics offer concurrent palliative care (PC) together with life-prolonging therapies. To know the prevalence of patients in HF clinics needing PC and useful tools to recognize them are the first steps to extending PC in those settings. However, it is still unknown whether tools commonly used to identify patients with HF needing PC can correctly distinguish them. Two systematic reviews found that the NECesidades PALiativas (NECPAL) tool was one of the two most commonly used tools to asses PC needs in HF patients. Therefore, we assessed 1) the prevalence of PC needs in HF clinics according to the NECPAL tool, and 2) the characteristics of the patients identified as having PC; mainly, their quality of life (QoL), symptom burden, and psychosocial problems. METHODS: This cross-sectional study was conducted at two HF clinics in Colombia. We assessed the prevalence of PC in the overall sample and in subgroups according to clinical and demographic variables. We assessed QoL, symptom burden, and psychosocial problems using the 12-Item Short-Form Health Survey (SF-12), the Kansas City Cardiomyopathy Questionnaire (KCCQ) and the Edmonton Symptom Assessment System (ESAS). We compared the results of these tools between patients identified as having PC needs (+NECPAL) and patients identified as not having PC needs (-NECPAL). RESULTS: Among the 178 patients, 78 (44%) had PC needs. The prevalence of PC needs was twice as nigh in patients NYHA III/IV as in patients NYHA I/II and almost twice as high in patients older than 70 years as in patients younger than 70 years. Compared to -NECPAL patients, +NECPAL patients had worse QoL, more severe shortness of breath, tiredness, drowsiness, and pain, and more psychosocial problems. CONCLUSION: The prevalence of PC needs in outpatient HF clinics is high and is even higher in older patients and in patients at more advanced NYHA stages. Compared to patients identified as not having PC needs, patients identified as having PC needs have worse QoL, more severe symptoms, and greater psychosocial problems. Including a PC provider in the multidisciplinary team of HF clinics may help to assess and cover these needs.

The 'Surprise question' in heart failure: a prospective cohort study.

OBJECTIVE: The Surprise Question (SQ) is a prognostic screening tool used to identify patients with limited life expectancy. We assessed the SQ's performance predicting 1-year mortality among patients in ambulatory heart failure (HF) clinics. We determined that the SQ's performance changes according to sex and other demographic (age) and clinical characteristics, mainly left ventricular ejection fraction (LVEF) and the New York Heart Association (NYHA) functional classifications. METHODS: We conducted a prospective cohort study in two HF clinics. To assess the performance of the SQ in predicting 1-year mortality, we calculated the sensitivity, specificity, positive and negative likelihood ratios, and the positive and negative predictive values. To illustrate if the results of the SQ changes the probability that a patient dies within 1 year, we created Fagan's nomograms. We report the results from the overall sample and for subgroups according to sex, age, LVEF and NYHA functional class. RESULTS: We observed that the SQ showed a sensitivity of 85% identifying ambulatory patients with HF who are in the last year of life. We determined that the SQ's performance predicting 1-year mortality was similar among women and men. The SQ performed better for patients aged under 70 years, for patients with reduced or mildly reduced ejection fraction, and for patients NYHA class III/IV. CONCLUSIONS: We consider the tool an easy and fast first step to identify patients with HF who might benefit from an advance care planning discussion or a referral to palliative care due to limited life expectancy.

Translation and Validation of the Spanish Version of the Spiritual Care Competence Questionnaire (SCCQ).

We aimed to validate the Spanish version of the Spiritual Care Competence Questionnaire (SCCQ) in a sample of 791 health care professionals from Spanish speaking countries coming principally from Argentina, Colombia, Mexico and Spain. Exploratory factor analysis pointed to six factors with good internal consistency (Cronbach's alpha ranging from 0.71 to 0.90), which are in line with the factors of the primary version of the SCCQ. Conversation competences and Perception of spiritual needs competences scored highest, and Documentation competences and Team spirit the lowest, Empowerment competences and Spiritual self-awareness competences in-between. The Spanish Version of the SCCQ can be used for assessment of spiritual care competencies, planning of educational activities and for comparisons as well as monitoring/follow-up after implementation of improvement strategies.

Redes comunitarias de cuidadores: acompañamiento a la movilización ciudadana para el cuidado compasivo / Community networks: facilitating the community empowerment towards compassionate care

RESUMEN Objetivo Presentar un proceso de aproximación y movilización de la comunidad para la creación de una red barrial de cuidadores en Medellín, Colombia. Métodos La sistematización de la promoción de la red barrial de cuidadores se realizó siguiendo las fases de acompañamiento según la clínica comunitaria: aproximación a la comunidad, generación de formas terapéuticas clínico-comunitarias y comprensión del proceso desde esta perspectiva. Se empleó la rehabilitación basada en la comunidad como método de trabajo. Resultados La necesidad de formación para el cuidado y la organización familiar son los mayores retos de los cuidadores de la comunidad. Los participantes tienen presente la importancia de crear redes de apoyo y han adquirido conocimientos prácticos que les son útiles en la cotidianidad y que sientan las bases para la futura construcción de red. Conclusiones La experiencia de construcción de una red barrial genera reflexiones e interrogantes alrededor de las metodologías utilizadas y de las necesidades comunitarias reales alrededor del cuidado. A pesar de las dificultades en relación con la acción colectiva, la cohesión grupal y la asistencia a los encuentros, el acompañamiento que se realizó ha dejado reflexiones para los cuidadores y conocimientos prácticos en torno al cuidado.

ABSTRACT Objective To present the process of contact and mobilization of a community, seeking to facilitate the development of a caregiving network in Medellín, Colombia. Method The systematization process of the caregiving network's promotion was conducted according to the phases of clinical community involvement: contact with the community, clinical-community therapeutic modalities and analysis of the process. The method emplo-yed was community-based rehabilitation. Results Training needs and family organization towards caregiving are the caregivers' major challenges are. The participants are aware of the relevance of creating support networks and have acquired practical knowledge useful to fulfill their daily needs, which are the foundations for future network development. Conclusions The experience of promoting the development of a community network brings insights and concerns regarding the methods used and the actual caregiving needs of the community. Despite the difficulties encountered with collective actions, group cohesion and assistance to community gatherings, caregivers were able to reflect upon and learn about caregiving networks.

Patient's Perspectives on the Notion of a Good Death: A Systematic Review of the Literature.

CONTEXT: There is no clear definition of what constitutes a good death or its features. Patients, caregivers, physicians, and relatives have different notions of a good death. Discussions have been driven by academic perspectives, with little research available on the patients' perspectives. OBJECTIVES: To explore the notions of a good death from the patients' perspective. METHODS: A systematic literature search was conducted up to November 2017 using CINAHL®, MEDLINE®, EMBASE®, and PsycINFO® databases. Search terms used were "quality of death," "good death," "quality of dying," or "good dying." Scientific empirical studies that included the exploration of the notion of a good death in adult patients with advanced and life-threatening diseases were selected separately by two researchers. Hawker's et al. criteria were used to assess the quality of articles. The analysis was conducted using a thematic analysis. RESULTS: Two thousand six hundred and fifty two titles were identified; after elimination of duplicates, screening, and final selection, 29 relevant publications remained for analysis. Sample populations included patients with terminal diseases (AIDS, cardiovascular disease, and cancer). Core elements for a "good death" included control of pain and symptoms, clear decision-making, feeling of closure, being seen and perceived as a person, preparation for death, and being still able to give something to others; whereas other factors such as culture, financial issues, religion, disease, age, and life circumstances were found to shape the concept across groups. Studies agree on the individuality of death and dying while revealing a diverse set of preferences, regarding not only particular attributes but also specific ways in which they contribute to a good death. CONCLUSIONS: Although sharing common core elements, patients' notions of good death are individual, unique, and different. They are dynamic in nature, fluctuating within particular groups and during the actual process of dying. Formal and informal caregivers should carefully follow-up and respect the patient's individual concepts and preferences regarding death and dying, while attending to shared core elements, to better adjust clinical decisions.

Resilience in Caregivers: A Systematic Review.

BACKGROUND: Resilience is a multidimensional construct that explains why people facing the consequences of adversity and stress can have a positive outcome, emphasizing adjustment to experiences that are perceived as threatening. OBJECTIVE: The aim of this study is to review the construct of resilience and associated variables in caregivers of patients with chronic, advanced illness and at the end of life. METHODS: The review included studies published between January 2009 and January 2019, using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guide reporting. The Medline, ScienceDirect, HINARI, PsychINFO, and SciELO databases were used for bibliographic exploration to identify research studies that examined the impact of resilience on adaptation and overall well-being in caregivers of patients with chronic and advanced illness. RESULTS: A total of 23 quantitative and qualitative studies were identified whose aim was to describe the role of resilience in adaptation and coping in caregivers. In these studies, resilience was associated with a positive impact on the quality of life and emotional distress. Communication and social support increase resilient coping strategies. In most selected articles, the sampling strategy used was convenience sampling. Data collection used evaluation scales related to resilience and associated variables for quantitative studies, and semistructured interviews were used for qualitative studies. CONCLUSION: Promoting a resilient coping style in caregivers reduces the distress that normally results from illness-related changes in the biopsychosocial and spiritual dimensions. A resilient coping style can diminish the risk of stress and burden, and promote adaptation in the caregiver.

Comunidades compasivas en Colombia para el apoyo a personas con enfermedad avanzada y al final de la vida: uniendo esfuerzos / Compassionate communities in colombia to support people facing advanced illness and the end of life: joining efforts

Diversos países de medianos ingresos se encuentran en un proceso de transición demográfica avanzado hacia el envejecimiento. Atender esta población heterogénea implica un reto a los sistemas de salud y demanda una mayor participación de la comunidad, dada la alta prevalencia de enfermedades crónicas en adultos mayores y su frecuente dependencia funcional y fragilidad, que impactan en la calidad de vida e incrementan los costos asistenciales. En los años 90, la Organización Mundial de la Salud adoptó un modelo comunitario de salud pública que busca empoderar a las comunidades respecto al cuidado de la salud. Ello ha permitido el surgimiento de las comunidades compasivas, un movimiento social que parte de una filosofía en la cual la prioridad es el bienestar común. Algunos ejemplos de ello son las iniciativas que buscan promover e integrar socialmente los cuidados paliativos en la vida cotidiana de las personas creando "comunidades que cuidan" y que enseñan a cuidar a las personas al final de la vida. El presente artículo presenta los antecedentes del movimiento de ciudades compasivas en el mundo, su importancia para los cuidados paliativos y describe el desarrollo de este movimiento en Colombia, detallando acciones individuales y conjuntas de las ciudades que buscan aunar esfuerzos en pro del bienestar de las personas que enfrentan enfermedades avanzadas y el final de vida. Colombia ha logrado, en un periodo relativamente corto, promover acciones compasivas en siete de sus ciudades y comenzar a tejer redes no solo a nivel local sino también nacional. Se espera que muchos más se unan en este esfuerzo y que esto permita complementar la atención que se brinda por cuidados paliativos y potenciarla

Many middle-income countries are facing an advanced demographic change towards ageing. Caring for this heterogeneous population represents a challenge for health systems and requires a growing participation of the community, considering the high prevalence of chronic diseases in the elderly, and their frequent functional dependence and fragility, which altogether impacts their quality of life and increases health costs. The World Health Organization adopted in the 1990s a community public health approach seeking to empower the society in the care of their health. Since then, a social movement known as "Compassionate communities" has emerged, based on a principle that prioritizes the community's wellbeing. The initiatives that promote the social inclusion of palliative care in everyday life are an example of these "communities that care" and that teach others how to care for a person facing the end of life. This article presents the background of compassionate communities and their importance to palliative care. It also describes the development of this movement in Colombia and details the individual and collective actions of the cities interested in joining efforts toward the wellbeing of people facing advanced illness and the end of life. In a relatively short period, Colombia has successfully promoted compassionate actions in seven cities and has begun to develop networks not only locally but also nationally. It is hoped that many more will join this effort to complement and strengthen palliative care

Level of knowledge, emotional impact and perception about the role of nursing professionals concerning palliative sedation.

AIMS AND OBJECTIVES: To explore aspects related to the fulfilment of the role of nurses in palliative sedation. BACKGROUND: Palliative sedation demands knowledge and a proper attitude for maintaining comfort, preserving dignity and contributing to a peaceful death. In some developed countries, nurses have a well-established role in palliative sedation. However, studies on their role and its fulfilment are limited, particularly in the developing world. DESIGN: An exploratory, mixed, qualitative and quantitative study was conducted. A self-administered questionnaire was used to examine the level of knowledge of palliative sedation and the level of confidence in skills and knowledge about palliative sedation. Also, focus groups were conducted to explore the emotional impact and the perceived role of nurses. METHODS: Forty-one nurses from three advanced-care hospitals with palliative care units in Colombia completed the questionnaire. Also, four focus groups were conducted with 22 participants selected from the first phase. RESULTS: A high level of knowledge regarding palliative sedation was found, but the level of confidence in skills was higher than the confidence in knowledge. The participants expressed their belief that their knowledge was derived from experience but believed that it was not enough to fulfil their role with confidence. A negative emotional impact about the patients' condition was found. For some, it served as motivation to provide better care. For others, it was difficult to face, especially when assisting children. They also expressed satisfaction and gratification about providing relief from suffering through sedation. CONCLUSIONS: The role of nursing is essential in palliative sedation. Although the nurses' knowledge is adequate, it primarily derives from experience and not from formal training, which impacts on their perceived confidence and their distress. RELEVANCE TO CLINICAL PRACTICE: Formal training for the optimal fulfilling of the nursing role in palliative sedation is crucial to provide better end-of-life care, particularly in developing countries.

Palliative sedation in advanced cancer patients hospitalized in a specialized palliative care unit.

PURPOSE: To describe the practice of palliative sedation (PS) in patients with advanced cancer in a specialized palliative care (PC) unit in Colombia. METHODS: Descriptive prospective study including all adults with cancer hospitalized under PS in a cancer institute between January and July 2015 in Colombia. Variables examined were diagnosis, physical functioning, symptoms at the start of sedation, medications and dosages used, and type, level, and time of sedation. Descriptive and correlational statistics were obtained. RESULTS: Sixty-six patients were included, 70% of which were women. The patients had an average age of 61 years (range 24-87), and 74% had a Karnofsky Index (KI) of 50% or less. The most frequent diagnosis was breast cancer (22%), and 82% had metastatic cancer. The prevalence of palliative sedation was 2% and the most common symptoms indicating it were dyspnea (59%), delirium (45%), and pain (32%). All patients received midazolam as a sedative. The average time between the interval start and culmination of sedation was 44 h. There was a significant and inverse relationship between functionality and time under sedation. CONCLUSIONS: Palliative sedation is a valid therapeutic option for refractory symptoms causing suffering. The results correspond to international reports and guidelines, which suggests that PS is tailored to the needs of the individual patient while maintaining a high scientific standard, even in a context where PC is under development. However, further development of strategies and clear indications towards the use of PS in Colombia are needed, given its still scarce use.

The influence of psychological factors on the burden of caregivers of patients with advanced cancer: Resiliency and caregiver burden.

ABSTRACTObjective:The aim of our study was to identify the influence of such psychological factors as emotional intelligence and perceived competence on caregiver burden in those who care for patients with advanced cancer. METHOD: A total of 50 informal caregivers completed self-report assessments of resilience, perceived competence, emotional regulation, positive aspects of care, emotional distress, and burden. We conducted a quantitative study with a cross-sectional design. Descriptive statistics were obtained. Associations between the different variables were assessed using nonparametric and multiple regression analyses. RESULTS: Participants were mainly female (88%) and had an average of 20 months of caregiving. Their mean age was 47 years (range = 20-79). More than half of scored high on resilience, positive aspects of caring, and emotional distress, moderately on perceived competence, and low on burden. Most caregivers used cognitive restructuring and social support as coping strategies. Inverse negative correlations were observed among emotional distress, emotional state, and burden with perceived competence and positive aspects of caring (p < 0.05). Significant differences were obtained for emotional distress, cognitive restructuring, and resiliency. Multiple regression analyses demonstrated that perceived competence, resiliency, and positive aspects of caring were the main predictors of burden. SIGNIFICANCE OF RESULTS: Resilience, perceived competence, emotional regulation, and positive aspects of care constitute protective factors against caregiver burden. Taken together, these aspects should be promoted by the healthcare staff in order to facilitate caregiver adaptation and well-being.

Impacto familiar de la sedación paliativa en pacientes terminales desde la perspectiva del cuidador principal / Family impact of palliative sedation in terminaly ill form the perspective of the main caregiver

Objetivo: Describir el impacto familiar de la sedación paliativa en pacientes con enfermedad avanzada terminal ya fallecidos, desde la percepción del cuidador principal. Método: Estudio cualitativo de enfoque fenomenológico. Se realizaron entrevistas semi-estructuradas a diez cuidadores principales de pacientes con enfermedad terminal fallecidos bajo sedación paliativa, que fueron atendidos por cuidados paliativos en una institución oncológica de Medellín, Colombia entre enero y marzo de 2015. Se analizó la información a partir de categorías preestablecidas: significado, cambios emocionales, cambios estructurales y duelo. Resultado: Los cuidadores no tenían ningún conocimiento previo sobre la sedación. Todos reportan que fueron informados sobre el objetivo y los cambios físicos que podía presentar el paciente; sin embargo, la mitad de ellos refirieron que esta información no fue suficiente para comprender el proceso que enfrentaban. Manifestaron diversos sentimientos (alivio, duda, impotencia, tristeza) antes, durante y después de la sedación. Respecto a los cambios estructurales, la mayoría de las familias se reorganizaron y facilitaron el acompañamiento y cuidado al paciente refiriendo fortalecimiento de las relaciones familiares. Finalmente, se encontró que los cuidadores percibieron que la sedación paliativa facilita el duelo, al aliviar el sufrimiento y permitiendo una buena muerte. Conclusiones: Los cuidadores evalúan la experiencia de sedación como positiva y satisfactoria para aliviar el sufrimiento de su ser querido y el de su familia. Igualmente, facilita el proceso de duelo por la construcción positiva de alivio en torno a la experiencia vivida como familia, fortaleciendo sus relaciones y recordando una buena muerte para su paciente

Objective: The present study aimed at describing the impact that palliative sedation had on the family and their subsequent bereavement process, from the primary caregiver´s point of view. Methodology: Qualitative study with a phenomenological approach; ten primary caregivers of patients with terminal illness who were treated by the palliative care group of an oncological institution in Medellin, Colombia and died under palliative sedation were interviewed. The information was analyzed using predetermined categories: meaning, emotional changes, structural changes and bereavement. Results: Caregivers had no prior knowledge about palliative sedation. All of them reported to be informed about the possible changes that patients could go through. However, half of the caregivers reported that the information was insufficient to understand the process they were facing. They expressed multiple feelings (relief, doubt, helplessness and sadness) before, during and after palliative sedation. Regarding structural changes, all families underwent reorganization, and family relationships were strengthened. On the whole, caregivers perceived that palliative sedation facilitated bereavement while relieving suffering and allowing a good death. Conclusions: Caregivers considered that the experience of palliative sedation was positive and satisfactory, allowing to relief suffering of their loved one and the family. It also eased the bereavement process as families made a positive reconstruction of the experience, strengthening their relationships and leaving a good memory of the patient’s death

Validación de dos herramientas para la evaluación de cambios en las actitudes de alumnos en situaciones frecuentes en cuidado paliativo / Validation of two instruments to assess attitude changes of students in common situations in palliative care

Objetivo: determinar las propiedade psicométricas de dos escalas utilizadas para evaluar las actitudes en torno a los cuidados paliativos: La Escala de Confort en Cuidados Paliativos (ECCP) de Pereira et al., y la Escala de Tanatofobia (ET) de Merrill et al. Método: Participaron 77 alumnos de 7 cursos virtuales de aspectos psicosociales en cuidados paliativos entre 2010 y 2013. Estos respondieron las escalas de medida antes y después del curso. Se examinó la validez y la fiabilidad de la ECCP y de la ET a través de un análisis de componentes principales, el coeficiente de consistencia interna y el test-retest. Se realizó una comparación de los resultados pre-curso y post-curso para determinar cambios en las actitudes evaluadas. Resultados: El análisis de componentes principales se ajustó satisfactoriamente a los datos y se extrajeron 3 componentes: dos para la ECCP y uno para la ET, explicando el 55,37% de la varianza. El Alfa de Cronbach fue satisfactorio en todos los casos. Las correlaciones test-retest en t1 y t2 no resultaron significativas, esto indica que la relación entre la primera y la segunda medición en las escalas no fue estrecha. Los cursos ocasionaron un cambio significativo en el confort en la atención al paciente (p = 0,004), en el confort en la atención a las familias (p = 0,001), mas no en el grado de tanatofobia (p > 0,05). Conclusiones: Ambas escalas son válidas y confiables. Evalúan de forma satisfactoria las actitudes, y sus cambios relacionados con la práctica de los cuidados paliativos, en lo referente a la atención de aspectos psicosociales

Objective: To determine the psychometric properties of two scales designed to examine attitudes regarding palliative care: Comfort Scale in Palliative Care (CSPC, Pereira et al.) and Tanatophobia Scale (TS, Merrill et al.) Method: Seventy-seven students who completed an online course on psychosocial aspects of palliative care offered by the Latin American Association of Palliative Care participated in the study. They also completed the scales before and after the course. Construct validity and reliability of the CSPC and the TS were assessed using a Principal Components Analysis, internal reliability coefficient and test-retest reliability. Further, comparative statistics between the pre-course and post-course results were obtained in order to determine changes in attitudes. Results: The Principal Components Analysis showed satisfactory fit to the data. 3 components were extracted: two for the CSPC and one for the TS, which explained 55.37% of the variance. Internal consistency coefficients were satisfactory in all cases and Cronbach´s Alphas were satisfactory for all the scales, particularly for the CSPC. Testretest reliability in t1 and t2 was found to be non significant, indicating that measures were not related in time. Regarding pre-course/ post-course comparisons, significant changes in comfort assisting patients (p = 0.004) and comfort assisting families (p = 0.001) following the course were identified, but changes in thanatophobia were non significant (p > 0.05). Conclusions: both scales are valid and reliable. Attitudes regarding the practice of palliative care and how they change, particularly regarding psychosocial issues, can be accurately measured using the examined scales

Current dilemmas in the assessment of suffering in palliative care.

OBJECTIVE: Although relief from suffering is essential in healthcare and palliative care, few efforts have aimed at defining, operationalizing, and developing standards for its detection, assessment, and relief. In order to accurately explore and identify factors that contribute to suffering, more attention needs to be focused on quality assessment and measurement, not only for assessment purposes but also to test the effectiveness of interventions in relieving suffering. The scope of the present paper is to discuss the strategies that aid in the detection and assessment of the suffering experience in patients with chronic illnesses and/or in palliative care settings, and the dilemmas commonly encountered regarding the quality of available assessment measures. METHOD: A general description of instruments available for suffering assessment is provided. Matters regarding the accuracy of the measures are discussed. Finally, some dilemmas regarding the quality of the measures to screen for and assess suffering are presented. RESULTS: There have been some achievements toward adequate suffering assessment. However, a more robust theoretical background is needed, and empirical evidence aimed at supporting it is required. In addition, further examination of the psychometric characteristics of instruments in different populations and cultural contexts is needed. SIGNIFICANCE OF RESULTS: An interesting number of assessment measures are now available for use in the palliative care setting, employing innovative approaches. However, further examination and validation in different contexts is required to find high-quality tools for detection of suffering and assessment of the results of intervention.

Cancer-related fatigue in breast cancer patients after surgery: a multicomponent model using partial least squares-path modeling.

OBJECTIVE: The aim of this study is to examine factors contributing to cancer-related fatigue (CRF) in breast cancer patients who have undergone surgery. METHODS: Sixty women (mean age: 50.0) completed self-rated questionnaires assessing components of CRF, muscular and cognitive functions. Also, physiological and subjective data were gathered. Data were analyzed using partial least squares variance-based structural equation modeling in order to examine factors contributing to CRF after breast surgery. RESULTS: The tested model was robust in terms of its measurement quality (reliability and validity). According to the structural model results, emotional distress (ß = 0.59; p < 0.001), pain (ß = 0.23; p < 0.05), and altered vigilance (ß = 0.30; p < 0.05) were associated with CRF, accounting for 61% of the explained variance. Also, emotional distress (ß = 0.41; p < 0.05) and pain (ß = 0.40; p < 0.05) were related to low physical function and accounted for 41% of the explained variance. However, the relationship between low physical function and CRF was weak and nonsignificant (ß = 0.01; p > 0.05). CONCLUSION: Emotional distress, altered vigilance capacity, and pain are associated with CRF in postsurgical breast cancer. In addition, emotional distress and pain are related to diminished physical function, which, in turn, has no significant impact on CRF. The current model should be examined in subsequent phases of the treatment (chemotherapy and/or radiotherapy) when side effects are more pronounced and may lead to increased intensity of CRF and low physical function.