Objective burden, caregiver psychological distress, and patient religion and quality of life are associated with high-intensity burden of care among caregivers of advanced cancer patients in a Latino population.

OBJECTIVES: Family caregivers (FCs) of cancer patients experience burden of care. The aims of this study are to describe the caregiving phenomenon among FCs of advanced cancer patients in a Latino community and to identify caregiver and patient characteristics associated with high-intensity subjective caregiver burden. METHODS: In this cross-sectional study, advanced cancer patient-caregiver dyads assessed at a Palliative Care Unit in Santiago, Chile, enrolled in a longitudinal observational study were included. FCs completed questions to describe the caregiving phenomenon and surveys to assess burden of care, psychological distress, and perception of patients' symptoms; patients completed surveys to assess physical distress and quality of life (QOL). We explored associations between high-intensity subjective caregiver burden with caregiver and patient variables. RESULTS: Two hundred seven dyads were analyzed. FCs were on average 50 years old and 75% female. Thirty-two percent of FCs experienced high-intensity subjective burden of care. Eighty two percent of FCs took care of the patient daily and 31% took care of the patient alone. In univariate analysis, high-intensity caregiver burden was associated with caregiver depression (59% vs. 27%; p < 0.001), anxiety (86% vs. 67%; p = 0.003), caring for the patient alone (45% vs. 24%; p = 0.002), perception of patient symptom distress, patient religion, and worse patient QOL (mean [standard deviation] 58 [33] vs. 68 [27]; p = 0.03). In multivariate analysis, FC depression (OR [95% confidence interval] 3.07 [1.43-6.60]; p = 0.004), anxiety (3.02 [1.19-7.71]; p = 0.021), caring for the patient alone (2.69 [1.26-5.77]; p = 0.011), caregiver perception of patient's fatigue (1.26 [1.01-1.58]; p = 0.04), and patient's religion (3.90 [1.21-12.61]; p = 0.02) were independently associated with caregiver burden. SIGNIFICANCE OF RESULTS: FCs of advanced cancer patients in a Latino community frequently experience high-intensity burden of care and are exposed to measures of objective burden. High-intensity burden is associated with both caregiver and patient factors. Policies should aim to make interventions on patient-caregiver dyads to decrease caregiving burden among Latinos.

Development and Validation of a Tool to Assess the Structural Quality of Palliative Care Services.

CONTEXT: The current gap in access to palliative care requires the expansion of palliative care services worldwide. There is little information about the structural components required by palliative care services to provide adequate end-of-life care. No specific tools have been developed to assess the structural quality of these services. OBJECTIVE: To develop and validate a tool to assess the structural quality of palliative care services. METHODS: A scoping review of literature was performed to identify structural quality indicators of palliative care services. National experts participated in a two-round Delphi method to reach consensus regarding the importance and measurement feasibility of each proposed indicator. Consensus was reached for each indicator if 60% or more considered them both important and feasible. The selected indicators were tested among Chilean palliative care services to assess instrument psychometric characteristics. RESULTS: Thirty-one indicators were identified. Thirty-five experts participated in a two-round Delphi survey. Twenty-one indicators reached consensus and were included in the structural quality of palliative care services tool (SQPCS-21). This instrument was applied to 201 out of 250 palliative care services in Chile. Achievement for each indicator varied between 8% and 96% (mean 52%). The total SQPCS-21 score varied between 3 and 21 points (mean 11 points). CONCLUSION: The SQPCS-21 tool to assess structural quality of palliative care services, has good content and construct validity and its application provides information about institutions at the individual and aggregated level. This tool can provide guidance to monitor the structural quality of palliative care worldwide.

La confianza en la relación profesional de la salud y paciente / Confidence in the health professional and patient relation

Introducción: Las condiciones crónicas de salud demandan un cuidado continuo con enfoque en el método clínico centrado en la persona, que incluye la relación médico-paciente como un elemento transversal, siendo la confianza el eje principal. Esta confianza podría mediar entre el manejo de las condiciones crónicas de los pacientes y sus efectos. Objetivo: Identificar el efecto de la confianza en la relación paciente-proveedor de salud en los diversos contextos de salud. Métodos: Se efectuó una revisión crítica de la literatura durante los meses de junio a agosto del 2017, para comprender el rol de la confianza en la relación entre el paciente-proveedor de salud y su relación con los resultados en salud. La búsqueda inicial fue con las palabras clave: confianza, médico, proveedor de salud, paciente y sus variantes en inglés y francés, en las bases de datos electrónicas JSTOR (Filosofía), Race Relations Abstracts, SocIndex with Full Text, Social Science Database, PubMed Central, CINAHL, Nursing & Allied Health Database, Web of Science, Academic Search Complete y ProQuest Central. Se aplicaron diferentes estrategias de búsqueda con las palabras claves y el operador boleano AND. Conclusiones: La confianza es una variable de la relación paciente-proveedor de salud que tiene un rol estratégico en los procesos terapéuticos. De ahí que sea fundamental considerarla como parte de la atención en salud, en especial como una instancia de colaboración y compromiso del paciente con su salud. Por lo que se hace necesario crear instrumentos que midan esta variable de acuerdo a las características culturales de los países latinoamericanos y que se extienda a todos los que tienen un rol asistencial en el contacto directo con el paciente(AU)

ABSTRACT Introduction: Health's chronic conditions demand continuous care with an approach to the clinical method focused in the person, which includes physician-patient relation as a cross-sectional element where confidence is the core. This confidence would mediate between the management of the patient's chronic conditions and their effects. Objective: To identify the effect of confidence in health provider/professional-patient relation in different health contexts. Methods: It was carried out a critical review of related literature from June to August, 2017 in order to understand the role of confidence in health provider- patient relation, and its relation with the results in health. The initial search was with the keywords: ´confidence, physician, health provider, patient and their equivalents in English and French, in the electronic databases JSTOR (Philosophy), Race Relations Abstracts, SocIndex with Full Text, Social Science Database, PubMed Central, CINAHHL, Nursing & Allied Health Database, Web of Science, Academic Search Complete and ProQuest Central. There were carried out different search strategies with the keywords and the boolean operator AND. Conclusions: Confidence is a variable of the atient-health provider relation that has a strategic role in therapeutic processes. Then, it is important to consider it as a part of health care, specially as a point of collaboration and commitment of the patient with his/her health. Thus, it is necessary to create instruments that measure this variable in accordance with the cultural characteristics of Latin American countries and this can be extended to all having a care role in the direct contact with patients(AU)