Alicia Krikorian

Introducción: El cuidado compasivo es esencial para la calidad asistencial. Sin embargo, pocos estudios en nuestro contexto abordan la perspectiva de los pacientes sobre el cuidado compasivo. Objetivo: Explorar la percepción que tienen los pacientes sobre los elementos que configuran un cuidado compasivo. Materiales y Métodos: Enfoque cualitativo desarrollado como fenomenología interpretativa. Participaron adultos hospitalizados. Se empleó un muestreo por conveniencia, con un número determinado por saturación de los datos. Se realizaron entrevistas semiestructuradas grabadas, previo consentimiento informado y firmado. Análisis desarrollado simultáneamente a la recolección de información, a través de la interpretación de los investigadores. Se identificaron unidades de significado de cada participante que posteriormente se agruparon según significados comunes. Resultados: Participaron 13 pacientes hospitalizados, entrevistados entre enero y junio de 2023. Los temas que agrupan el significado del cuidado compasivo fueron: Presencia que sana, la compasión: una experiencia de conexión humana, La compasión como fenómeno holístico del cuidado y los antónimos del cuidado compasivo. Discusión: Los temas se relacionan con hallazgos investigativos de diferentes contextos y entornos de atención clínica. Se destacan diferencias y similitudes que amplían el espectro de la interpretación fenomenológica realizada de cada caso. Conclusión: La educación y la comunicación para los pacientes son elementos centrales del cuidado compasivo, permiten establecer vínculos significativos y humanizados en la atención. La forma en que el personal de salud transmite información y se relaciona con los pacientes influye directamente en la percepción del cuidado recibido. Palabras Clave: Personal de Salud; Pacientes Internos; Relaciones Profesional-Paciente; Empatía.

Introduction: Adequate palliative care (PC) provides holistic and comprehensive care to alleviate the suffering of severely ill patients. Evaluating the level of satisfaction with the care provided by healthcare centers is of the utmost importance to improve PC services. Objective: To explore the perceived satisfaction with the care received from the PC team in hospitalized patients and their primary caregivers in three healthcare centers located in Medellín, Colombia, and to analyze differences between groups. Methods: Descriptive, cross-sectional observational study conducted between August 2022 and January 2023. The EORTC IN-PATSAT32 tool was used to assess patient and caregiver satisfaction. A different tool was used to specifically assess the quality of the PC service. Descriptive and comparative statistics were obtained. Result: Overall, 91 participants were surveyed (47 patients and 44 caregivers) and they reported very high levels of satisfaction with the service received during hospitalization (88.74%). Similarly, a high satisfaction score was obtained for the care received from the PC team (87.0%). The variable with the best rating was sensitivity towards the patient, and the variable with the lowest rating was psychosocial support. No differences were found between patients and caregivers in terms of reported satisfaction. Conclusion: The participants reported a high level of satisfaction with the inpatient and PC services in the majority of the assessed areas. Key areas that require strengthening were communication and psychosocial support.

Fibromyalgia is a widespread chronic pain condition affecting quality of life. Emotional distress and loneliness are factors commonly related to pain and suffering. However, no study has analyzed how all these variables interplay in individuals living with fibromyalgia. The study objective was to empirically test the relationships among loneliness, anxiety, depression, pain, and suffering in this population. Descriptive, observational, cross-sectional study. Structural equation modeling (SEM) was used to assess the relationships between loneliness, anxiety, and depression to the experience of pain and suffering in 317 fibromyalgia patients who attended a specialized pain management facility. Loneliness was positively associated with anxiety, pain, depression, and suffering. Moreover, in our sample, anxiety, depression, suffering, and pain demonstrated significant covariation. We also found that depression is positively related to pain and suffering. Our study demonstrates that loneliness in fibromyalgia is closely linked to anxiety, depression, pain, and suffering. Regular, comprehensive interventions that incorporate social support strategies may help reduce this burden.

Background: Early-onset Alzheimer’s disease is a rapidly progressing condition that severely disrupts quality of life. Early palliative care incorporation helps identify patients’ needs and facilitates family decision-making and advanced care planning for later stages. Aim: The study aimed to assess palliative care needs, level of suffering, and most frequent symptoms in Early-onset Alzheimer’s patients. Methods: We present a preliminary observational analysis as part of a larger, 18-month longitudinal study of patients with early-onset Alzheimer’s disease. Patients with the PSEN1-E280 A variant of Early-onset Alzheimer’s disease attending the Antioquia Neuroscience Group at the University of Antioquia in Medellín, Colombia, participated. Data were collected using NECPAL, Edmonton Symptom Assessment System Revised, Global Deterioration Scale/Functional Assessment Staging (GDS/FAST), Pain Assessment in Advanced Dementia (PAINAD), and a numeric rating scale. Regarding data analyses from visit 1 (V1), variables were described according to their nature. A Poisson regression was performed, and prevalence ratios, 95% confidence intervals, and P values were obtained. Statistical significance was defined with an alpha value of 5%. Results: Thirty-six patients participated in V1. Median age was 53. Most of them were women and lived in urban areas. The prevalence of palliative care needs was 22.22%. Poisson regression showed an association between clinician-perceived need for palliative care and dysphagia, pressure ulcers, asthenia, insomnia, functional decline, resource utilization, positive surprise question in NECPAL instrument, and scores of the PAINAD and GDS/FAST scales. Conclusion: Patients with Early-onset Alzheimer’s have palliative care needs associated with symptoms related to disease progression, prognosis, resource utilization, and pain.

Purpose Understanding how different factors contribute to suffering, particularly social ones, enables designing more comprehensive and evidence-based interventions. This study examined the relationship between suffering, loneliness, social interaction, and symptom distress in patients with advanced cancer. Methodology The authors conducted a quantitative, observational, analytical cross-sectional study. Patients with advanced cancer attending a pain and palliative care unit of an oncology institution participated. Assessment instruments included PRISM (suffering), the UCLA Loneliness Scale, the Edmonton Symptom Assessment Questionnaire, and Cohen’s Social Network Index (SNI). Univariate, bivariate, and multiple regression analyses were performed. Results One-hundred forty-four patients participated, mostly women (68.1%), with a median age of 62 years, and 48.6% lived with a partner. About 75% reported moderate to severe suffering, 33% had clinically significant loneliness, and half reported a large social network and frequent interactions. Fatigue as the most common problem and well-being had a median score of 5. Suffering was significantly correlated with loneliness, pain, fatigue, depression, and anxiety, but not with levels of social interaction. According to the Multiple Regression Analysis, only loneliness showed a positive and significant contribution to suffering. Conclusions A high percentage of patients show significant suffering, and almost a third show clinical levels of loneliness. This contrasts with a relatively large social network with frequent interactions and a generally low symptomatic burden. Our findings indicate that loneliness influences the experience of illness, contributing to suffering. Future studies should delve deeper into the relationship between suffering and loneliness.

Introduction. Health sciences education provides comprehensive training in biomedical competencies and the development of the individual for professional practice. However, it often focuses on clinical competencies. There is a pressing need for more meaningful integration of training in compassionate care throughout the curriculum. The objective of this study was to identify the contents and teaching, learning, and assessment practices related to compassionate care in the medicine and nursing programs of a private university. Method. A descriptive and observational mixed-methods approach was conducted in 2022. First, a review of curriculum contents in the syllabi from the medicine and nursing programs was conducted to identify those pertaining to compassionate care; then, a survey was administered to teachers, students, and graduates of the SHS, to explore curriculum contents related to compassionate care, organized into three axes: communication and therapeutic relationship, teamwork, and self-care. Finally, focus group discussions were held to delve deeper into these aspects. This paper describes the results of the data from the programs' syllabi and surveys. Results. Both programs explicitly and implicitly offer some form of training in compassionate care. Training in compassionate care is limited and often hidden in medicine, while in nursing, it tends to be more abundant and explicit. Training primarily focuses on communication skills and therapeutic relationships, with less emphasis on teamwork and virtually no attention given to self-care. The most used methodologies are lectures, clinical cases, and rounds or clinical practices. Evaluation is carried out through summative and formative strategies, commonly through written exams featuring |both closed and open-ended questions. Conclusions. Strengths and areas for improvement are identified: the importance of formalizing and balancing contents related to compassionate care, employing more participatory and experiential teaching-learning methodologies, and emphasizing structured evaluation processes. This study provides evidence for further programs willing to improve compassionate care.

Background: Autosomal Dominant Alzheimer’s disease (ADAD) is a subtype of AD in which the symptoms begin before age 65. ADAD is an important subtype of AD as it affects people at productive and reproductive age, has a genetic origin in most of the cases and is one of the 10 causes of years lost to disability (YDLs) (1). Colombia has the largest kindred family with ADAD due to PSEN1‐E280A genetic variant, we aimed to characterize the palliative care need in a subsample of individuals from these families.Methods: We performed an analytical observational study with one year follow‐up, data obtained from visit 1 (V1) is shown in this first report. Carriers of PSEN1‐E280A variant and GDS/FAST score above 4 were included. NECPAL and Edmonton surveys were conducted to the main carer to assess the need for palliative care and the frequency of symptoms. A complete medical evaluation was also performed.Results: 36 patients were included in V1. Median age was 53, most of the individuals were women (63.89%), lived in urban areas (88.89%) and the most common level of education was elementary‐middle school (47.22%). Clinical variables are listed in Table 2. Results of the poisson regression showed that dysphagia, pressure ulcers, asthenia perceived by the main carer, not being surprised if the patient died in the following 12 months (Surprise question of NECPAL scale), functional decline, use of medical services (2 visits in the past year), PAINAD scale and GDS/FAST scale were associated with the need for palliative care when adjusted by number of persons involved in caring, type of carer, hours of care per week and caregiver training.Conclusion: ADAD is a neurodegenerative disease that requires follow‐up by palliative care services. The health perception of the main carer should be taken into consideration when deciding the need for palliative care in these patients.

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.

Introducción: el personal de enfermería afronta el cuidado de personas con enfermedades que amenazan la vida. Este artículo examina las propiedades psicométricas de una escala que evalúa actitudes ante el cuidado en fin de vida (fatcod-s) en profesionales de enfermería que atienden a pacientes oncológicos y busca determinar la relación entre sus actitudes y sus características sociodemográficas y relacionadas con el entrenamiento. Materiales y métodos: estudio cuantitativo de diseño transversal. Los participantes trabajaban en servicios oncológicos de tres instituciones sanitarias de Medellín (Colombia) y hacían parte de un grupo de interés académico. Se empleó el fatcod-s, y se recogieron variables sociodemográficas y relacionadas con la formación. Se analizaron los componentes principales, así como la confiabilidad, y se obtuvieron estadísticos descriptivos y comparativos. Resultados: 83 participantes con una mediana de edad de 34 años (riq: 7), de los cuales el 96.3 % eran mujeres; el 51.2 % laboraban en hospitalización; el 31.7 % tenían menos de dos años en el servicio, y el 35.4 %, con dos a cinco años de experiencia cuidando pacientes oncológicos. El fatcod-s mostró propiedades psicométricas robustas y el puntaje promedio obtenido fue de 87.6 (desviación estándar: 8.2). Actitudes más favorables hacia la familia y la experiencia de morir se relacionaron con el entrenamiento y la experiencia profesional. Conclusión: las actitudes de los profesionales de enfermería hacia el cuidado en fin de vida tienden a ser muy favorables y se asocian con el tipo de entrenamiento y la experiencia profesional.

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.