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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.
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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.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Indicadores de Qualidade em Assistência à Saúde , Técnica DelphiRESUMO
CONTEXT: Progress in palliative care (PC) necessarily involves scientific development. However, research conducted in South America (SA) needs to be improved. OBJECTIVES: To develop a set of recommendations to advance PC research in SA. METHODS: Eighteen international PC experts participated in a Delphi study. In round one, items were developed (open-ended questions); in round two, each expert scored the importance of each item (from 0 to 10); in round three, they selected the 20 most relevant items. Throughout the rounds, the five main priority themes for research in SA were defined. In Round three, consensus was defined as an agreement of ≥75%. RESULTS: 60 potential suggestions for overcoming research barriers in PC were developed in round one. Also in Round one, 88.2% (15 of 17) of the experts agreed to define a priority research agenda. In Round two, the 36 most relevant suggestions were defined and a new one added. Potential research priorities were investigated (open-ended). In Round three, from the 37 items, 10 were considered the most important. Regarding research priorities, symptom control, PC in primary care, public policies, education and prognosis were defined as the most relevant. CONCLUSION: Potential strategies to improve scientific research on PC in SA were defined, including stimulating the formation of collaborative research networks, offering courses and workshops on research, structuring centers with infrastructure resources and trained researchers, and lobbying governmental organizations to convince about the importance of palliative care. In addition, priority research topics were identified in the region.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Técnica Delphi , América do Sul , ConsensoRESUMO
OBJECTIVE: Adapt and validate the NECPAL instrument in Chile. DESIGN: Prospective, longitudinal, analytical study for validation of the instrument in 5 stages: cultural adaptation, content validation, pilot test, application, and statistical analysis. PLACE: Four primary care centers of the South East Metropolitan Health Service, in Santiago, Chile. PARTICIPANTS: Primary health care physicians and nurses for cultural adaptation and application, and palliative care experts for content validation. MAIN MEASUREMENTS: Cultural adaptation was carried out through cognitive interviews. Content validity was measured using Delphi method and the Lawshe content validity ratio (CVR) was obtained. In the pilot test, we measured stability (test-retest), inter judge harmony and application time in 14 chronic advanced patients (CAP). The test was applied to this same group, calculating the sample according to Nunally's recommendation. RESULTS: A sample of 118 CAP was obtained. The CVR was 0.75 and the average testing time was 6.7 min (SD = 4.01). The test-retest obtained a Kappa test concordance index between 0.632 and 1.0; and the interjudge harmony agreement between 0.192 and 0.692. The surprise question (PS) was positive in 20.3% of the sample. The main conditions associated with the disease-specific severity item, were fragility (23.7%), chronic heart disease (21.2%) and chronic lung disease (12.7%). The demand group and specific severity indicators obtained a greater predictive capacity of PS+, with an area under the curve of 0.808 (95% CI: 0.697-0.918). CONCLUSIONS: NECPAL is feasible to be used in Chile, has adequate psychometric properties and will allow early detection of patients in need of palliative care.
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Cuidados Paliativos , Chile , Doença Crônica , Humanos , Estudos Prospectivos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
CONTEXT: Demoralization is a state of existential distress in patients with advanced illness, typically with coping difficulties, feelings of loss of sense, and purpose in life and despair, among other things. The New Demoralization Scale (DS-II) is an evaluation tool for this syndrome, which has recently been reformulated on a shorter scale. OBJECTIVES: The objective of this study was to obtain a Spanish version of the DS-II and to assess its psychometric properties in advanced cancer patients in Spain and a number of Latin American countries. METHODS: Following a translation-back translation process, a validation study and a confirmatory analysis using structural equation models with their corresponding latent constructs were undertaken. Patients completed the DS-II in Spanish (DS-II (es)), the Hospital Anxiety and Depression Scale, and the Edmonton Symptom Assessment System-revised. Reliability was studied according to internal consistency; construct validity and concurrent validity with the Hospital Anxiety and Depression Scale and the Edmonton Symptom Assessment System-revised; discriminant validity using the Karnofsky Performance Status scale; and feasibility, with response ratio and required time. Cutoff points were established, and sensitivity and specificity were studied. RESULTS: The DS-II (es) was obtained. One hundred fifty patients completed the validation study. The confirmatory analysis showed coherence, and all items correlated positively with their subscales and with the overall scale. Cronbach's alpha for the DS-II (es) was 0.88, for the sense and purpose subscale 0.83, and for the coping ability 0.79. Demoralization correlated significantly with emotional distress (rho = 0.73, P < 0.001). The tool distinguished between patients with diverse functional levels (rho = -0.319, P = 0.001). Cutoff points at 10 and 20 out of 32 were established. The scale showed high sensitivity (81.97%) and specificity (80.90%). The prevalence of demoralization was 33% in our sample. CONCLUSION: The Spanish version of the new Kissane DS-II demoralization scale has shown to be valid, reliable, and feasible with adequate psychometric properties.
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Desmoralização , Neoplasias/psicologia , Adaptação Psicológica , Adulto , Idoso , Idoso de 80 Anos ou mais , Argentina , Chile , El Salvador , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Escalas de Graduação Psiquiátrica , Psicometria , Reprodutibilidade dos Testes , Espanha , Estresse Psicológico/psicologia , Traduções , Adulto JovemRESUMO
PURPOSE OF REVIEW: The aim of this 2-year systematic review is to understand how learner assessment and curriculum evaluation of education in palliative care is being undertaken and to examine whether current undergraduate education influences the clinical patient's care. RECENT FINDINGS: Almost half of the 30 studies reviewed used a qualitative approach to evaluate learning experiences. Only three of them were controlled studies and a further one was a cohort study.When students openly express themselves, they agree that there is 'something' deep as regards the core or the essence of medical practice or nursing. They feel that they become better professionals and better prepared for the patients, not only in terms of end of life care, but also as regards care, irrespective of the phase of the disease.The inclusion of palliative care in undergraduate education is a way of providing knowledge, skill, and competences about palliative care (especially communication) and also improving attitudes toward caring in advanced disease and at the end of life. Different methods of experiential learning, even brief experiences, which bring students into close contact with palliative care clinical cases or patients, are providing better results. SUMMARY: From research studies, there is only indirect evidence that palliative care training at university leads to better clinical care of patients. In the future, long-term cohort or controlled studies might answer that question.