Grupos Investigadores

Líneas de Investigación

  • Intervención precoz de cuidados paliativos en la trayectoria de la enfermedad.
  • Fundamentos y valores intangibles de cuidados paliativos.
  • Evolución y control sintomático en la enfermedad avanzada.
  • El mensaje de cuidados paliativos a la sociedad.
  • Educación médica de cuidados paliativos (profesionales).
  • Desarrollo internacional de cuidados paliativos.

Palabras Clave

  • Mensaje
  • Medicina paliativa
  • Integración
  • Intangibles
  • Enfermedad avanzada
  • Educación médica
  • Dignidad humana
  • Desarrollo
  • Cuidados paliativos
  • Astenia

Publicaciones Científicas desde 2018

  • Autores: Sapeta, P. (Autor de correspondencia); Centeno Cortés, Carlos; Belar Beitia, Alazne; et al.
    Revista: PALLIATIVE MEDICINE
    ISSN 0269-2163 Vol.36 N° 1 2022 págs. 15 - 29
    Resumen
    Background: Coping is essential to manage palliative care professionals' challenges. The focus has been on the effects of coping mechanism; however, little is known about coping itself in palliative care. Aim: To synthesise evidence of coping strategies in palliative care professionals, and how different strategies play roles over time. Design: Systematically conducted integrative review. Data sources: PubMed; CINAHL; Medline; PsycINFO and B-ON were searched (1996-2021) combining 'coping' AND 'palliative care'. A predefined data extraction sheet was developed to report data. Two researchers performed constant comparative analysis using Nvivo(R). Results: Thirty-one studies were included. Four main strategies with recurrent reference to time were found: (a) proactive coping, involving activities to achieve self-confidence and control situations and emotions; (b) self-care based coping, including self-protection and self-awareness activities, with behavioural disconnection; (c) self-transformation coping, involving activities to accept limits; and (d) encountering deep professional meaning, is a coping mechanism based on meaning, frequently considering the deepest meaning of work. The dynamic and influencing factors were training, team interaction, professional motivation and family. They were usually protective factors, though sometimes they represented risk factors. The emotional burden associated with healthcare and systemic stressors were always risk factors. An explanatory model describes a complex and dynamic process, in which everyday strategies and more introspective strategies are combined. Conclusions: The model showed a process of adaptation and learning to persevere in palliative care. It changes over time under factors and strategies, and evolves in a personal and professional transformation, parallel to the working life. It would be worth assessing coping in healthcare professionals who chose to leave palliative care and to investigate the reasons they did so and their coping mechanisms.
  • Autores: Belar Beitia, Alazne; Arantzamendi Solabarrieta, María (Autor de correspondencia); Menten, J.; et al.
    Revista: CANCERS
    ISSN 2072-6694 Vol.14 N° 2 2022 págs. 301
    Resumen
    Simple Summary The involvement of patients in decision making about their healthcare plans is being emphasized, but little is known how the decision making on palliative sedation is conducted and who are involved in. The aim of this study is to understand how decisions about palliative sedation are taken. The results may help to understand the reality of this decision-making considering when and by whom the decision-making process is initiated, patient involvement, family involvement and healthcare involvement. This may contribute to identifying aspects that should be improved. Background. The involvement of patients in decision making about their healthcare plans is being emphasized. In the context of palliative sedation, it is unclear how these decisions are made and who are involved in. The aim of the study is to understand how this decision-making is taken. Method. Information from a systematic review on clinical aspects of palliative sedation prospective studies were included. PubMed, CINAHL, Cochrane, MEDLINE, and EMBASE were searched (January 2014-December 2019). Data extraction and analysis regarded: (a) When and by whom the decision-making process is initiated; (b) patient involvement; (c) family involvement and (d) healthcare involvement. Results. Data about decision making were reported in 8/10 included articles. Palliative sedation was reported in 1137 patients (only 16 of them were non-cancer). Palliative sedation was introduced by the palliative care team during the disease process, at admission, or when patients experienced refractory symptoms. Only two studies explicitly mentioned the involvement of patients in decision making. Co-decision between families and the regular health care professionals was usual, and the health care professionals involved had been working in palliative care services. Conclusion. Patient participation in decision making appeared to be compromised by limited physical or cognitive capacity and family participation is described. The possibility of palliative sedation should be discussed earlier in the disease process.
  • Autores: Martínez García, Marina; Arantzamendi Solabarrieta, María; Centeno Cortés, Carlos
    Revista: MEDICINA PALIATIVA
    ISSN 1134-248X Vol.29 N° 1 2022 págs. 1 - 2
    Resumen
    En este contexto, Erasmus + ha promovido un proyecto (RESPACC 2020-1-R001-KA202-080128) en el que participan cuatro países: Rumanía (Hospice Casa Sperantei y la Universidad de Transilvania), España (Universidad de Navarra), Grecia (Hospice Galillee) y Bélgica (European Association for Palliative Care EAPC). El proyecto ¿Competencias de Investigación para Clínicos de Cuidados Paliativos¿ (RESPACC) hace referencia a Research (Investigación) Expertise (Experiencia), Selfdevelopment (Autodesarrollo) Palliative Care (Cuidados Paliativos), Attitude (Actitud), Communication (Comunicación) y Competence (Competencia).
  • Autores: Pons Izquierdo, Juan José
    Revista: ARBOR-CIENCIA PENSAMIENTO Y CULTURA
    ISSN 0210-1963 Vol.198 N° 803 - 804 2022 págs. a645
    Resumen
    En el siglo XXI las acogen, por primera vez en la historia, más de la mitad de la población mundial y generan aproximadamente el 80% del PIB del planeta. Además, la evolución registrada durante las últimas décadas hace prever, según todos los indicadores, que el papel central que desde antiguo han jugado las ciudades se va a ver reforzado en el futuro. No en vano, se trata de verdaderos epicentros catalizadores del desarrollo económico y social contemporáneo. Además, la visión que se tenía sobre ellas ha ido cambiando progresivamente y, cada vez más, tienden a ser vistas como impulsoras del desarrollo sostenible global. Sin embargo, no por ello dejan de tener puntos oscuros, ya que es también en los entornos urbanos donde los principales problemas de nuestro tiempo (pobreza, violencia, contaminación, etc.) alcanzan situaciones límite y se ponen de manifiesto los contrastes sociales y económicos más dramáticos. Entre esas cuestiones se encuentra la calidad ambiental de los espacios urbanos, un factor absolutamente crítico en la actualidad, tanto por el número de personas que habita en las ciudades (y que, por tanto, están expuestas a sus condiciones), como por la repercusión que estas tienen en el conjunto del medio ambiente del planeta: la batalla de la sostenibilidad se ganará o se perderá en las ciudades. El estudio de los índices que sirven para analizar la sostenibilidad de las ciudades es el objeto de este trabajo.
  • Autores: Belar Beitia, Alazne (Autor de correspondencia); Arantzamendi Solabarrieta, María; Payne, S.; et al.
    Revista: PALLIATIVE MEDICINE
    ISSN 0269-2163 Vol.35 N° 2 2021 págs. 295 - 314
    Resumen
    Background: Palliative sedation is the monitored use of medications intended to relieve refractory suffering. The assessment of palliative sedation has been focused on the assess of the level of consciousness but a more comprehensive approach to assessment is needed. Aim: To understand how the potential effects and possible adverse events of palliative sedation in Palliative Care patients are measured. Design: Integrative review of most recent empirical research. Data sources: Cochrane Library, Embase, Medline, PubMed, and CINAHL were searched (2010-2020) using the terms sedation, palliative care, terminal care, assessment. Limits included studies in English and adults. Inclusion criteria were: scientific assessment papers, effects and complications of palliative sedation; patients with incurable illness. Results: Out of 588 titles, 26 fulfilled inclusion criteria. The Discomfort Scale-Dementia of Alzheimer Type and Patient Comfort Score were used to assess comfort. The Richmond Agitation-Sedation Scale and The Ramsay Sedation Scale are the most used to measure its effect. Refractory symptoms were assessed through multi-symptom or specific scales; except for psychological or existential distress. Delirium was assessed using the Memorial Delirium Assessment Scale and pain through the Critical Care Pain Observation Tool. The use of technical approaches to monitor effects is upcoming. There is lack of measurement of possible adverse events and variability in timing measurement. Conclusions: There are palliative care validated instruments to assess the sedation effect but this review shows the need for a more standardized approach when assessing it. Instruments should be used within an experienced and trained expert, providing a holistic assessment.
  • Autores: Arantzamendi Solabarrieta, María; Belar Beitia, Alazne (Autor de correspondencia); Payne, S.; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN 0885-3924 Vol.61 N° 4 2021 págs. 831 - 844.e10
    Resumen
    Context: Near the end of life when patients experience refractory symptoms, palliative sedation may be considered as a last treatment. Clinical guidelines have been developed, but they are mainly based on expert opinion or retrospective chart reviews. Therefore, evidence for the clinical aspects of palliative sedation is needed. Objectives: To explore clinical aspects of palliative sedation in recent prospective studies. Methods: Systematic review was conducted following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and registered at PROSPERO. PubMed, CINAHL, Cochrane, MEDLINE, and EMBASE were searched (January 2014-December 2019), combining sedation, palliative care, and prospective. Article quality was assessed. Results: Ten prospective articles were included, involving predominantly patients with cancer. Most frequently reported refractory symptoms were delirium (41%-83%), pain (25%-65%), and dyspnea (16%-59%). In some articles, psychological and existential distress were mentioned (16%-59%). Only a few articles specified the tools used to assess symptoms. Level of sedation assessment tools were the Richmond Agitation Sedation Scale, Ramsay Sedation Scale, Glasgow Coma Scale, and Bispectral Index monitoring. The palliative sedation practice shows an underlying need for proportionality in relation to symptom intensity. Midazolam was the main sedative used. Other reported medications were phenobarbital, promethazine, and anesthetic medication-propofol. The only study that reported level of patient's discomfort as a palliative sedation outcome showed a decrease in patient discomfort. Conclusion: Assessment of refractory symptoms should include physical evaluation with standardized tools applied and interviews for psychological and existential evaluation by expert clinicians working in teams. Future research needs to evaluate the effectiveness of palliative sedation for refractory symptom relief.
  • Autores: Martínez García, Marina (Autor de correspondencia)
    Revista: ESTUDIOS SOBRE EDUCACION
    ISSN 1578-7001 N° 40 2021 págs. 228 - 229
  • Autores: Nitola Mendoza, Lina María (Autor de correspondencia); Centeno Cortés, Carlos
    Revista: ANALES DEL SISTEMA SANITARIO DE NAVARRA
    ISSN 1137-6627 Vol.44 N° 1 2021 págs. 125 - 126
  • Autores: Pallotti, M. C. (Autor de correspondencia); López Fidalgo, Jesús Fernando; Centeno Cortés, Carlos; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN 1096-6218 Vol.24 N° 7 2021 págs. 1061 - 1066
    Resumen
    Objective: Recognizing delirium phenomenology (DP) aids the early diagnosis of this syndrome and improves quality of life in patients with advanced cancer. The aim of this study was to identify the neurobehavioral and cognitive patterns of delirium-related symptoms in persons with advanced cancer. Methods: We conducted an observational comparative prospective study on delirium in patients with advanced cancer in different palliative care settings, assessing the presentation/evolution of DP with the Memorial delirium assessment scale (MDAS). Results: Two hundred twenty-seven patients were enrolled on hospital/hospice admission. Of these, 57 were admitted with delirium, 170 without delirium, and 31 developed delirium during hospitalization. Of the 88 patients admitted with delirium or who developed it during hospitalization, only 32 underwent two consecutive MDAS evaluations (at diagnosis and after one week). Delirium resolved in 22 patients (first average MDAS score 10.08 vs. second 3.6 [p < 0.001]). Disorientation, short-term memory, and memory span were altered in all patients with unresolved delirium. The same features were altered in 18 (80%), 17 (80%), and 16 (70%) of the patients with resolved delirium, respectively, and in 58 (35%), 114 (67%), and 38 (23%) of no-delirium patients, respectively. Conclusion: Cognitive-related symptoms appear to be the most prevalent and earliest signs of DP in patients with advanced cancer.
  • Autores: Arias Casais, Natalia Sofía (Autor de correspondencia); Garralda Domezain, Eduardo; Sánchez Cárdenas, Miguel Antonio; et al.
    Revista: BMC PALLIATIVE CARE
    ISSN 1472-684X Vol.20 N° 1 2021 págs. 36
    Resumen
    Background: Palliative care (PC) development cannot only be assessed from a specialized provision perspective. Recently, PC integration into other health systems has been identified as a component of specialized development. Yet, there is a lack of indicators to assess PC integration for pediatrics, long-term care facilities, primary care, volunteering and cardiology. Aim: To identify and design indicators capable of exploring national-level integration of PC into the areas mentioned above. Methods: A process composed of a desk literature review, consultation and semi-structured interviews with EAPC task force members and a rating process was performed to create a list of indicators for the assessment of PC integration into pediatrics, long-term care facilities, primary care, cardiology, and volunteering. The new indicators were mapped onto the four domains of the WHO Public Health Strategy. Results: The literature review identified experts with whom 11 semi-structured interviews were conducted. A total of 34 new indicators were identified for national-level monitoring of palliative care integration. Ten were for pediatrics, five for primary care, six for long-term care facilities, seven for volunteering, and six for cardiology. All indicators mapped onto the WHO domains of policy and education while only pediatrics had an indicator that mapped onto the domain of services. No indicators mapped onto the domain of use of medicines.
  • Autores: Connor, S. R.; Centeno Cortés, Carlos; Garralda Domezain, Eduardo; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN 0885-3924 Vol.61 N° 4 2021 págs. 812 - 816
    Resumen
    Context: Palliative care is an emerging health care service essential for every health care system. Information on the current status of palliative care service delivery is needed in order to understand the gap between need for palliative care and current capacity to deliver. Objectives: To estimate the number of providers delivering palliative care worldwide and the patients they served in 2017. Methods: Estimates were obtained from a sample of countries from each World Bank income group using typical case purposive sampling methods. Reliable data from the United States, and eight additional countries were used for the high-income group. For low and middle-income countries (LMICs), in order to determine an estimate of the number of patients served 30 countries representative of palliative care service delivery in each region and income group were surveyed. Results: Results from the mapping levels of palliative care development survey identified a total of approximately 25,000 palliative care service delivery teams globally. The total estimate of patients served in 2017 was approximately seven million. Conclusion: Significant disparities in palliative care access exist both by region and income group. The European and Pan-American regions had most while the Eastern Mediterranean, Southeast Asian, and African regions had least. Much more needs to be done to develop and deliver palliative care in LMICs where 80% of the need for palliative care exists. With about 70% of operating palliative care services in high income countries and only 30% in LMICs, a major effort to develop palliative care in these settings is urgently needed.
  • Autores: Trinchete Reigada, Carla Manuela; Centeno Cortés, Carlos; Gonçalves, E.; et al.
    Revista: INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH
    ISSN 1660-4601 Vol.18 N° 10 2021 págs. 5348
    Resumen
    PC continues to be misunderstood within the world of healthcare. PC professionals are key agents for promoting a greater understanding of their field. It aims to examine the messages, both implicit and explicit, that PC professionals transmit about themselves and their work within their teams and to other health professionals. Methods: Focused ethnographic secondary analysis, exploring the interactions of PC professionals as it happens at everyday work. An inductive thematic analysis was developed from 242 h of observation of the daily work practices of palliative care professionals, focusing on their interactions with others. The data was coded without predefined categories, and the analysis was performed independently by two researchers. Results: Palliative professionals communicate that they are part of an active team working in an organized manner. They value and feel proud of their work. Despite the intensity of their work, these professionals are always available to others, to whom they demonstrate a clear professional identity. They convey their expertise in alleviating suffering, respectful behavior and collaborative ability. Conclusion: Professionals, in their daily work, communicate through their messages the essence of palliative care. It is essential that PC professionals perceive themselves as potential influencers and explicitly transmit the reasons for their intervention. Otherwise, others will perpetuate myths, misunderstandings, lack of positive PC reputation
  • Autores: Seitz, K.; Deliens, L.; Cohen, J.; et al.
    Revista: REVISTA PANAMERICANA DE SALUD PUBLICA-PAN AMERICAN JOURNAL OF PUBLIC HEALTH
    ISSN 1020-4989 Vol.45 2021 págs. e149
    Resumen
    Objective. This paper assesses the availability and quality of death certificate data in Latin America and the feasibility of using these data to study place of death and associated factors. Methods. In this comparative study, we collected examples of current official death certificates and digital data files containing information about all deaths that occurred during 1 year in 19 Latin American countries. Data were collected from June 2019 to May 2020. The records for place of death and associated variables were studied. The criteria for data quality were completeness, number of ill-defined causes of death and timeliness. Results. All 19 countries provided copies of current official death certificates and 18 of these registered the place of death. Distinguishing among hospital or other health care institution, home and other was possible for all countries. Digital data files with death certificate data were available from 12 countries and 1 region. Three countries had data considered to be of high quality and seven had data considered to be of medium quality. Categories for place of death and most of the predetermined factors possibly associated with place of death were included in the data files. Conclusions. The quality of data sets was rated medium to high in 10 countries. Hence, death certificate data make it feasible to conduct an international comparative study on place of death and the associated factors in Latin America.
  • Autores: Trinchete Reigada, Carla Manuela (Autor de correspondencia); Hermida-Romero, S.; Sandgren, A.; et al.
    Revista: INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING
    ISSN 1748-2623 Vol.16 N° 1 2021 págs. 1955441
    Resumen
    Background University students are the future professionals who will influence society. It is thus essential to improve students' understanding of palliative care (PC), especially those in the non-health field, to generate and encourage propitious opinions about PC. This study describes the perceptions of PC among university students from different disciplines. Method Qualitative exploratory study using virtual focus groups (FGs) and design thinking (DT) approach. An intentional sample of students from various disciplines, universities and cities from Spain were selected. Numerous researchers from different fields were involved in the discussion of the final thematic analysis. Results Four themes and seven subthemes were found: i) Students have an ambiguous understanding about PC; ii) PC is not a common issue for non-health students; ii) Students see PC as an important and necessary field; iii) Students build counter-narratives against PC myths, demonstrating PC brings key benefits into people's lives; iv) PC is a synonym of death. Conclusion Despite the fact that students do not know much about PC, the topic easily arouses reflection and positive discussion. Through the conversations they find positive values and arguments against misunderstand- ing. Students from different disciplines could be the target of innovative educational initia- tives and the social debate on PC.
  • Autores: Carvajal Valcárcel, Ana; Aradilla-Herrero, A. (Autor de correspondencia); Edo-Gual, M.; et al.
    Revista: NURSE EDUCATION TODAY
    ISSN 0260-6917 Vol.101 2021 págs. 104879
    Resumen
    Education in palliative care is a required competence for the nursing degree.Pedagogical strategies in palliative care are mainly aimed at promoting an understanding of patients with advanced disease. Phenomenological texts are stories intended to evoke lived experiences and help understand these complex situations. However, there is no evidence regarding the experience of reading phenomenological texts in nursing. The aim of this study is to determine what impact nursing students have when reading a phenomenological text about the experience of people living with advanced cancer. The students¿ writings showed that reading the phenomenological text caused them to reflect and feel moved and challenged. The impact on the students is grouped into three categories: the experience of the corporeality of patients makes students aware of the importance of the body; the disease as an individual transformative process challenges students; and the experiences of advanced cancer patients make students aware of the importance of how they care for patients and their families. The reading of a phenomenological text on the experience of living with advanced cancer is innovative and may be a teaching method that promotes care focused on the person with advanced illness, key aspect for student¿s competency in clinical practice.
  • Autores: Belar Beitia, Alazne; Arantzamendi Solabarrieta, María (Autor de correspondencia); Santesteban, Y.; et al.
    Revista: BMJ SUPPORTIVE & PALLIATIVE CARE
    ISSN 2045-435X Vol.11 N° 2 2021 págs. 156 - 162
    Resumen
    OBJECTIVE:Cultural backgrounds and values have a decisive impact on the phenomenon of the wish to die (WTD), and examination of this in Mediterranean countries is in its early stages. The objectives of this study were to establish the prevalence of WTD and to characterise this phenomenon in our cultural context. METHODS:A cross-sectional study with consecutive advanced inpatients was conducted. Data about WTD (Assessing Frequency & Extent of Desire to Die (AFFED) interview) and anxiety and depression (Edmonton Symptom Assessment System-revised (ESAS-r)) were collected through two face-to-face clinical encounters. Data were analysed with descriptive statistics, ¿2 and analysis of variance. RESULTS:201 patients participated and 165 (82%) completed both interviews. Prevalence of WTD was 18% (36/201) in the first interview and 16% (26/165) in the second interview (p=0.25). After the first interview, no changes in depression (p=0.60) or anxiety (p=0.90) were detected. The AFFED shows different experiences within WTD: 11% of patients reported a sporadic experience, while 7% described a persistent experience. Thinking about hastening death (HD) appeared in 8 (22%) out of 36 patients with WTD: 5 (14%) out of 36 patients considered this hypothetically but would never take action, while 3 (8%) out of 36 patients had a more structured idea about HD. In this study, no relation was detected between HD and frequency of the appearance of WTD (p=0.12). CONCLUSIONS:One in five patients had WTD. Our findings suggest the existence of different experiences within the same phenomenon, defined according to frequency of appearance and intention to hasten death. A linguistically grounded model is proposed, differentiating the experiences of the 'wish' or 'desire' to die, with or without HD ideation.
  • Autores: Durán Vian, Francisco (Autor de correspondencia); Pons Izquierdo, Juan José; Serrano Martínez, Miriam
    Revista: URBAN FORESTRY AND URBAN GREENING
    ISSN 1618-8667 Vol.59 2021 págs. 127042
    Resumen
    Since the seventies, cities all over the world are rediscovering their rivers. Recreational uses of the urban streams are becoming popular and public access to the waterfronts is being improved. This has led to the construction of a wide variety of public open spaces on the riverfront with different ways of interacting with the river ecosystem. In this research, we elaborate a classification of riverfront parks based on two criteria: the position of the open space within the river corridor and the access possibilities from the open space to the water. To verify the applicability of the classification framework, seven Spanish urban rivers have been studied. Results derived from the classification process show that public recreational riverfronts can be categorized into three classes: floodplain, upland and raised spaces. Within the floodplain spaces, fluvial subclass can be distinguished from riparian subclass in that the former allows greater access to water. The case study confirms the viability of the classification system and it is useful to describe the open space classes. We found that, despite their spatial characteristics, design and use can be almost unlimited, there are patterns associated with each class. The methodology developed and its application (1) allows to know the amount of public spaces in the urban river corridor, (2) gives an organizing framework for understanding river-city recreational interactions and (3) facilitates the assessment of the riverbanks.
  • Autores: Sánchez Cárdenas, Miguel Antonio (Autor de correspondencia); León, M. X.; Rodríguez-Campos, L. F.; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN 0885-3924 Vol.62 N° 2 2021 págs. 293 - 302
    Resumen
    Context. The national evaluation of an individual country is a tool used to improve the universal provision of palliative care. The evaluation of a country's internal situation, by means of an analysis of the development of palliative care by region, may also be an instrument for improvement. Objectives. The aim of this study was to understand the regional development of palliative care in Colombia, through the application of international indicators. Methods. Regional development was analyzed for Colombia, with a country-specific adaptation of the evaluation method used in the latest edition of the Palliative Care World Map (Clark D, 2020), the need for palliative care per death with serious health-related suffering (Knaul FN, 2019), and the coverage of specialized services, following European standards (Centeno, 2016). A total of 33 of the country's regions were classified. Results. Some 41% of the people who die in Colombia need palliative care. The average figure for specialized services is 0.5/100,000 inhabitants, with a maximum coverage of 51%. In Colombia, there are 12 regions with a generalized level of provision; six regions with isolated provision, nine regions developing their capacity, four with no known activity, and two at an advanced level of palliative care integration. The regions with the highest level of palliative care development coincide with higher demand and coverage of specialized services. Conclusion. Regional palliative care development is unequal and unbalanced. Applying international indicators to levels of regional development allows for the identification of geographical inequalities and highlights low palliative care development, especially in the rural areas of the country. (C) 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
  • Autores: Arantzamendi Solabarrieta, María (Autor de correspondencia); Sapeta, P.; Collete, N.; et al.
    Revista: PALLIATIVE MEDICINE REPORTS
    ISSN 2689-2820 Vol.2 N° 1 2021 págs. 34 - 39
    Resumen
    Emotional exhaustion is a problem many palliative care professionals face during their activity. Art therapy is emotionally beneficial for palliative patients that experience suffering, but its impact on professionals¿ experience of suffering has not been researched. Aim:To examine the immediate reactions of professionals after an art therapy workshop focused on personal self-care, also considering previously used coping strategies. Design: A four-hour art therapy workshop was designed including a generic qualitative study of participants. Participants were palliative care professionals and their reactions were examined using an ad hoc questionnaire with open-ended questions. Descriptive analysis of quantitative variables and thematic analysis of open-ended questions were conducted. Results: Seventeen professionals participated voluntarily. They rated the workshop positively, using words like ¿calm¿ and ¿relaxation¿ to express the effects of the workshop, which they considered therapeutic and a source of self-awareness. For some, it allowed them to release emotions; for others, it enabled introspection and opened up a more elaborated emotional response. They thought artistic expression would be useful for their colleagues, or even for their own personal development. In the workshop, professionals opened up and explained how they face intense moments on a day-to-day basis: how they approach the situation, or how they try to control their surroundings; how they disconnect/dista
  • Autores: Sánchez Cárdenas, Miguel Antonio (Autor de correspondencia); Garralda Domezain, Eduardo; Benítez Sastoque, Edgar Ricardo; et al.
    Revista: INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH
    ISSN 1660-4601 Vol.18 N° 20 2021 págs. 10753
    Resumen
    Background: The coverage of palliative care (PC) may be understood as a country's capacity to offer prevention and relief from serious health-related suffering in relation to an existing need. The aim of this study is to estimate European countries & PRIME; coverage capacities. Method: Secondary analysis of three indicators, including the number of specialized services (SSPC), integration capacity scores (ICS) and the PC needs. By means of a K-medians clustering supervised algorithm, three coverage profiles were obtained: (1) Advanced: countries with high ICS and SSPC, and low PC needs; (2) Limited: countries with low ICS and SSPC, and low PC needs; and (3) Low: countries with low ICS and SSPC and high PC needs. Results: On average, the ratio of specialized services per population was 0.79 per 100,000 inhabitants, the average ICS was 19.62 and the average number of deceased patients with SHS per 100,000 inhabitants was 5.69. Twenty countries (41%) reached an advanced coverage profile. Nine countries (18%) demonstrated a limited coverage profile; and 20 countries (41%) fell under a low-coverage capacity. Conclusion: The level of palliative care coverage across Europe shows that 59% of European countries have either limited or very low availability of PC resources as regards their palliative care needs.</p>
  • Autores: van Steijn, D. (Autor de correspondencia); Pons Izquierdo, Juan José; Garralda Domezain, Eduardo; et al.
    Revista: INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH
    ISSN 1660-4601 Vol.18 N° 19 2021 págs. 10345
    Resumen
    Background: Palliative care is a priority for health systems worldwide, yet equity in access remains unknown. To shed light on this issue, this study compares populations' driving time to specialized palliative care services in three countries: Ireland, Spain, and Switzerland. Methods: Network analysis of the population's driving time to services according to geolocated palliative care services using Geographical Information System (GIS). Percentage of the population living within a 30-min driving time, between 30 and 60 minutes, and over 60 min were calculated. Results: The percentage of the population living less than thirty minutes away from the nearest palliative care provider varies among Ireland (84%), Spain (79%), and Switzerland (95%). Percentages of the population over an hour away from services were 1.87% in Spain, 0.58% in Ireland, and 0.51% in Switzerland. Conclusion: Inequities in access to specialized palliative care are noticeable amongst countries, with implications also at the sub-national level.
  • Autores: Arias Casais, Natalia Sofía; Centeno Cortés, Carlos (Autor de correspondencia)
    Revista: ANALES DEL SISTEMA SANITARIO DE NAVARRA
    ISSN 1137-6627 Vol.43 N° 1 2020 págs. 107 - 108
  • Autores: Clark, D.; Baur, N.; Clelland, D.; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN 0885-3924 Vol.59 N° 4 2020 págs. 794-807.e4
    Resumen
    Context: Palliative care is gaining ground globally and is endorsed in high level policy commitments, but service provision, supporting policies, education and funding are incommensurate with rapidly growing need. Objectives: To describe current levels of global palliative care development and report on changes since 2006. Methods: An online survey of experts in 198 countries generated 2017 data on 10 indicators of palliative care provision, fitted to six categories of development. Factor analysis and discriminant analysis showed the validity of the categorization. Spearman correlation analyses assessed the relationship with World Bank Income Level (WBIL), Human Development Index (HDI) and Universal Health Coverage (UHC). Results: Numbers (percentages) of countries in each development category were: 1) no known palliative care activity 47 (24%); 2) capacity-building 13 (7%); 3a) isolated provision 65 (33%); 3b) generalized provision 22 (11%); 4a) preliminary integration into mainstream provision 21 (11%); 4b) advanced integration 30 (15%). Development levels were significantly associated with WBIL (rS= 0·4785), UHC (rS=0·5558) and HDI (rS=0·5426) with p < 0.001. Net improvement between 2006-2017 saw 32 fewer countries in categories 1/2, 16 more countries in 3a/3b, and 17 more countries in 4a/4b. Conclusion: Palliative care at the highest level of provision is available for only 14% of the global population and is concentrated in European countries. An 87% global increase in serious health related suffering amenable to palliative care interventions is predicted by 2060. With need rising, palliative care is not reaching the levels required by at least half the global population.
  • Autores: Arias Casais, Natalia Sofía; Garralda Domezain, Eduardo; Pons Izquierdo, Juan José; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN 0885-3924 Vol.60 N° 4 2020 págs. 746 - 753
    Resumen
    Context. Approximately 170,000 children in need of palliative care die every year in Europe without access to it. This field remains an evolving specialty with unexplored development. Objectives. To conduct the first regional assessment of pediatric palliative care (PPC) development and provision using data from the European Association for Palliative Care atlas of palliative care 2019. Methods. Two surveys were conducted. The first one included a single question regarding PPC service provision and was addressed by European Association for Palliative Care atlas informants. The second one included 10 specific indicators derived from an open-ended interview and rating process; a specific network of informants was enabled and used as respondents. Data were analyzed and presented in the map of the figure. Results. Data on PPC service provision were gathered from 51 of 54 (94%) European countries. Additional data were collected in 34 of 54 (62%) countries. A total of 680 PPC services were identified including 133 hospices, 385 home care services, and 162 hospital services. Nineteen countries had specific standards and norms for the provision of PPC. Twenty-two countries had a national association, and 14 countries offered education for either pediatric doctors or nurses. In seven countries, specific neonatal palliative care referral services were identified. Conclusion. PPC provision is flourishing across the region; however, development is less accentuated in low-to-middle-income countries. Efforts need to be devoted to the conceptualization and definition of the models of care used to respond to the unmet need of PPC in Europe. The question whether specialized services are required or not should be further explored. Strategies to regulate and cover patients in need should be adapted to each national health system. (C) 2020 The Authors. Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine.
  • Autores: Zambrano, S. C. (Autor de correspondencia); Centeno Cortés, Carlos; Larkin, P. J.; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN 1096-6218 Vol.23 N° 2 2020 págs. 184 - 191
    Resumen
    Background: The term "palliative care" (PC) has often been found to have a negative connotation leading some to suggest rebranding and some services to change their name. Perceptions of the PC community about the term remain largely unexplored. Objective: To explore how PC researchers/academics perceive the term is the objective of this study. Design: This is a cross-sectional survey of attendees to the 10th World Research Congress of the EAPC. The questionnaire covered areas of academic activity, including the use of the term. We analyzed data through descriptive and nonparametric statistics and open responses through content analysis. Participants: Academics and researchers in PC were the participants in this study. Results: Of 318 respondents, the majority were women (65%), physicians (48%), and had a postgraduate degree (90%). For 40%, the term hindered the positioning of PC, 28% worried about using the term, and 55% did not discuss these difficulties. We found significant differences between responses and several demographics (e.g., younger age and higher likelihood of worrying about the term). Through open responses, we identified that the term is widely in use, and that its limitations are seen as a cultural by-product, and not as something that a name change would solve. Conclusions: Senior PC academics, researchers, and clinicians have an onus to ensure that colleagues with limited PC experience have the opportunity to discuss and explore the impact of the term on the practice of research. Regarding the term itself, the community's views are conclusive: although using the term will remain a difficult task, the field's identity is in the name.
  • Autores: Arantzamendi Solabarrieta, María (Autor de correspondencia); García Rueda, Noelia; Carvajal Valcárcel, Ana; et al.
    Revista: QUALITATIVE HEALTH RESEARCH
    ISSN 1049-7323 Vol.30 N° 8 2020 págs. 1143 - 1155
    Resumen
    Abstract Literature suggests that it is possible to live well with advanced cancer but little is known about the process. In this article, we present a secondary analysis of experiences of living with advanced cancer (n=22) that refines the theory of ¿Living Well with Chronic Illness¿ for a different context and population. The refined theory explains the experience of living well with advanced cancer illuminating a five phase iterative process: struggling, accepting, living with advanced cancer, sharing the illness experience, and reconstructing life. These five phases revolve around the core concept of Awareness of Dying, which varied from awareness of the possibility of dying, to accepting the possibility of dying, to acceptance that ¿I am dying.¿ Awareness of Dying led to a focus on living well with advanced cancer and movement towards living a life rather than living an illness.
  • Autores: Pergolizzi, D.; Crespo, I.; Balaguer, A.; et al.
    Revista: BMJ OPEN
    ISSN 2044-6055 Vol.10 N° 2 2020 págs. e034413
    Resumen
    We aim to design and evaluate a proactive and systematic method for the needs assessment using quality guidelines for developing complex interventions. This will involve patients, their relatives and healthcare professionals in all phases of the study and its communication to offer clinical practice a reliable approach to address the palliative needs of patients. Methods and analysis To design and assess the feasibility of an evidence-based, proactive and systematic Multidimensional needs Assessment in Palliative care (MAP) as a semistructured clinical interview guide for initial palliative care encounter/s in patients with advanced cancer. This is a two-phase multisite project conducted over 36 months between May 2019 and May 2022. Phase I includes a systematic review, discussions with stakeholders and Delphi consensus. The evidence gathered from phase I will be the basis for the initial versions of the MAP, then submitted to Delphi consensus to develop a preliminary guide of the MAP for the training of clinicians in the feasibility phase. Phase II is a mixed-methods multicenter feasibility study that will assess the MAP¿s acceptability, participation, practicality, adaptation and implementation. A nested qualitA nested qualitative study preliminary clues about the benefits and barriers of the MAP. The evidence gathered from phase II will build a MAP user guide and educational programme for use in clinical practice.
  • Autores: Antoñanzas-Baztan, E.; Pumar Méndez, María Jesús; Marín-Fernández, B.; et al.
    Revista: NURSE EDUCATION IN PRACTICE
    ISSN 1471-5953 Vol.45 2020
    Resumen
    The objective of this study was to determine the effect of an education short course on professional¿ self-efficacy in the area of breastfeeding care. The intervention had a pre-post design. A total of 43 healthcare professionals attended the course. The Kirkpatrick model for the development, implementation and evaluation of education actions was used for a 4.5-h course. The aspects evaluated included professionals¿ satisfaction and learning regarding confidence to support lactating mothers, perceived transfer of knowledge to the workplace and organizational changes. Data were collected using self-administered questionnaires (participants, unit managers, and education planners), before and after the intervention. Participants' satisfaction with the education action was high in all of the aspects measured (greater than 3.9 in scores of 0¿5). Professionals showed a significant increase in self-efficacy levels for supporting breastfeeding (Wilcoxon test p-value = < 0.05, before intervention: median = 55, [IQR] = 11; after intervention: median = 60, [IQR] = 14). Participants, managers and organizers of the course identified changes in the way that professionals cared for breastfeeding mothers. In conclusion, this educational intervention enhanced professional self-efficacy and performance in breastfeeding care.
  • Autores: Pallotti, M. C.; López Fidalgo, Jesús Fernando; Biasco, G.; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN 1096-6218 Vol.23 N° 9 2020 págs. 1227 - 1232
    Resumen
    Background: Delirium in advanced cancer inpatient ranges between 13% and 85%. Reasons for this variability on the reported data could be related to the setting where they are admitted. Methods: This is an observational, comparative, prospective study on delirium diagnosis and delirium course of advanced cancer inpatients in two different palliative care settings. Hospice (C1) versus palliative care supportive team (C2). Differences between delirium precipitants, delirium treatment, and delirium survival were observed. Results: From 582 consecutive admissions, 494 from C1 and 88 from C2, finally 227 patients met inclusion criteria, were entered in the study. Total population delirium rate at admission, if we add both centers, was 57 patients (25%), 46 (26%) from C1 and 11 (22%) from C2; no statistically significant differences between delirium rate at admission between the two centers were found (chi(2)). When delirium course between delirious patients admitted in C1 and C2 was analyzed, a significantly higher rate of delirium reversibility was found in C2 [11/14 (78%)] versus [9/65 (14%)] in C1 (chi(2) p <= 0.001). Conclusion: The frequency of delirium at admission and during the hospitalization in advanced cancer patients does not seem to be related to the setting, what seems to be related is the delirium course.
  • Autores: Arias Casais, Natalia Sofía (Autor de correspondencia); López Fidalgo, Jesús Fernando; Garralda Domezain, Eduardo; et al.
    Revista: PALLIATIVE MEDICINE
    ISSN 0269-2163 Vol.34 N° 8 2020 págs. 1044 - 1056
    Resumen
    Background: Service provision is a key domain to assess national-level palliative care development. Three editions of the European Association for Palliative Care (EAPC) Atlas of Palliative Care monitored the changes in service provision across Europe since 2005. Aim: To study European trends of specialized service provision at home care teams, hospital support teams, and inpatient palliative care services between 2005 and 2019. Design: Secondary analysis was conducted drawing from databases on the number of specialized services in 2005, 2012, and 2019. Ratios of services per 100,000 inhabitants and increase rates on number of services for three periods were calculated. Analysis of variance (ANOVA) analyses were conducted to determine significant changes and chi-square to identify countries accounting for the variance. Income-level and sub-regional ANOVA analysis were undertaken. Setting: 51 countries. Results: Forty-two countries (82%) increased the number of specialized services between 2005 and 2019 with changes for home care teams (104% increase-rate), inpatient services (82%), and hospital support teams (48%). High-income countries showed significant increase in all types of services (p <¿0.001), while low-to-middle-income countries showed significant increase only for inpatient services. Central¿Eastern European countries showed significant improvement in home care teams and inpatient services, while Western countries showed significant improvement in hospital support a
  • Autores: Arbea Moreno, Leire; Díaz González, Juan Antonio; Centeno Cortés, Carlos; et al.
    Revista: EDUCACION MEDICA
    ISSN 1575-1813 Vol.21 N° 3 2020 págs. 207-211
  • Autores: Trinchete Reigada, Carla Manuela; Arantzamendi Solabarrieta, María; Centeno Cortés, Carlos
    Revista: BMC PALLIATIVE CARE
    ISSN 1472-684X Vol.19 N° 1 2020 págs. 88
    Resumen
    Despite 50 years of modern palliative care (PC), a misunderstanding of its purpose persists. The concept ¿Palliative Care¿ can be linked to feelings of fear, anxiety and death, instead of compassion, support or appropriate care. Society is still afraid to speak its name, and specialized units are identified as ¿places of death¿ as opposed to ¿places of life¿ meant to treat suffering. This issue is prohibitive to the implementation and development of PC policies worldwide. It is imperative to identify what message PC professionals are relaying to patients and other health care specialists and how that message may condition understandings of the right to access PC. Methods A qualitative study, employing focused ethnography and participant observation (PO) of the daily interaction of PC professionals with patients and family members in three different PC services. Two researchers independently conducted a thematic analysis, followed by member checking with participants. Results A total of 242 hours of participant observation revealed the following messages sent by PC professionals in their daily interaction with patients and families: i) We are focused on your wellbeing; ii) You matter: we want to get to know you; iii) Your family is important to us. Conclusion The complexity of PC discourses contributes to the difficulty of identifying a clear universal message between PC professionals, patients and families. The PC professionals observed transmit a simple message focused on their actions rather than their identity, which may perpetuate some social/cultural misunderstandings of PC. It seems there is a common culture, based on the same values and attitudes, within the messages that PC professionals transmit to patients and their families. PC teams are characterised by their availability.
  • Autores: Radbruch, L. (Autor de correspondencia); De Lima, L. ; Knaul, F.; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN 0885-3924 Vol.60 N° 4 2020 págs. 754 - 764
    Resumen
    Context. The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. Objective. The main objective of this article is to present the research behind the new definition. Methods. The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. Results. The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. Conclusion. Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span. (C) 2020 The Authors. Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine.
  • Autores: La Rosa Salas, Virginia; Arbea Moreno, Leire (Autor de correspondencia); Vidaurreta Fernández, Marta; et al.
    Revista: EDUCACION MEDICA
    ISSN 1575-1813 Vol.21 N° 6 2020 págs. 386 - 396
    Resumen
    La asistencia sanitaria centrada en el paciente es la clave para una atención humana a la persona y a su familia. La práctica colaborativa en equipos interprofesionales resulta imprescindible para alcanzar una atención sanitaria de calidad. La universidad tiene la responsabilidad de preparar a sus graduados para trabajar en equipos interprofesionales. Una enseñanza/aprendizaje centrada en la persona, fundamentada en las competencias que definen la educación interprofesional, es clave para que nuestros estudiantes reconozcan la necesidad del trabajo colaborativo. Este artículo detalla un proyecto docente de educación interprofesional de la Universidad de Navarra, donde estudiantes de las facultades de medicina, enfermería y farmacia aprenden juntos y de manera gradual, las claves de cómo trabajar en equipo.
  • Autores: Errasti Ibarrondo, María Begoña; Wilson, D. M. ; Choperena Armendáriz, Ana
    Revista: INTERNATIONAL JOURNAL OF QUALITATIVE METHODS
    ISSN 1609-4069 Vol.19 N° 1 2020 págs. 65
  • Autores: Aparicio, M. (Autor de correspondencia); Centeno Cortés, Carlos; Robinson, C.; et al.
    Revista: JOURNAL OF NURSING MANAGEMENT
    ISSN 0966-0429 Vol.27 N° 2 2019 págs. 286 - 300
    Resumen
    AimTo synthesize existing evidence regarding gratitude in health care relationships, with a specific focus on expressions of gratitude from patients and their families to health professionals, including their meaning and impact. BackgroundStudying expressions of gratitude by patients and their families within the scope of health care is an innovative way of identifying the most valuable elements of care. EvaluationA scoping review of three data bases was conducted using the terms gratitude and health professionals (1984-2016). Data were extracted, analysed thematically and synthesized. Key IssuesA total of 32 publications were identified, around half being opinions or reflections. Thematic analysis resulted in the identification of three themes: the characteristics of expressions of gratitude, the focus of expressions of gratitude and the effect of gratitude on health professionals. ConclusionsExpressions of gratitude by patients and their families may have an important personal and professional effect on health professionals that is long lasting. A systematic study of its effect is needed. Implications for Nursing ManagementGratitude from patients and their families may contribute to motivation and retention among health professionals. Gratitude can be nurtured and is associated with a healthy work environment.
  • Autores: Arias Casais, Natalia Sofía (Autor de correspondencia); Garralda Domezain, Eduardo; De Lima, L. ; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN 1096-6218 Vol.22 N° 5 2019 págs. 580 - 590
    Resumen
    Background: Indicators assessing national-level palliative care (PC) development used for cross-national comparison depict progress on this field. There is current interest on its inclusion in global monitoring frameworks. Objective: Identify and conceptualize those most frequently used for international PC development reporting. Design: Systematic review. Data Sources: PubMed, CINAHL, Google Scholar, and Google targeting national-level development indicators used for cross-national comparison. Additional search requesting experts' suggestions on key studies and "snow-balling" on reference section of all included studies. Identified indicators were listed and categorized in dimensions: services, use of medicines, policy, and education. Results: Fifty-four studies were included. Development has been evaluated using 480 different formulations of 165 indicators, 38 were highly reported. Thirty-two fell into proposed dimensions, 11 for use of medicines, 9 for policy, 7 for services, and 5 for education. Six into complementary dimensions: research, professional activity, and international cooperation. Six were the most frequently used indicators: number of PC services per population (40 reports), existence of PC national plan, strategy, or program (25), existence of palliative medicine specialization (22), availability and allocation of funds for PC (13), medical schools, including PC, in undergraduate curricula (13), and total use of opioids-morphine equivalents (11). Conclusion: There is a clear pattern for national-level PC development evaluation repeatedly using a small number of indicators. Indicators addressing generalistic provision, integration into health systems, and specific fields such as pediatric lack. This study invites international discussion on a global consensus on PC-development assessment.
  • Autores: Trinchete Reigada, Carla Manuela (Autor de correspondencia); Sapeta, P.; Centeno Cortés, Carlos
    Revista: CURRENT OPINION IN SUPPORTIVE AND PALLIATIVE CARE
    ISSN 1751-4258 Vol.13 N° 4 2019 págs. 337 - 343
    Resumen
    Purpose of review Qualitative research in the field of palliative care allows for a crucial study of the final stage of life from a social point of view and cultural perspective. This review evaluates the advantages and challenges of applying an ethnographic approach to palliative care research. Recent findings Thirteen ethnographic articles on organization or quality of care, decision-making, delirium, death, and the process of dying, were reviewed. Most studies use interviews, participant observation, and field notes as their primary data collection techniques. In ethnographic research, cultural issues, relationships and interactions of a group, the meanings and perceptions of the participants, the communication process, and the use of language in a particular and natural context were analyzed. Data collection and information analysis took an average of 14 months in the included studies. Summary The ethnographic method, applied with rigor, is valuable in the analysis of a real phenomenon if the particular context in which the study developed is well defined. With an ethnographic approach, researchers can uncover cultural nuances that evidence different realities.
  • Autores: Martínez García, Marina (Autor de correspondencia); Centeno Cortés, Carlos
    Revista: ANALES DEL SISTEMA SANITARIO DE NAVARRA
    ISSN 1137-6627 Vol.42 N° 3 2019 págs. 257 - 260
  • Autores: Centeno Cortés, Carlos (Autor de correspondencia); Arias-Casais, N.
    Revista: THE LANCET. GLOBAL HEALTH
    ISSN 2214-109X Vol.7 N° 7 2019 págs. E815 - E816
  • Autores: Arias Casais, Natalia Sofía (Autor de correspondencia); Garralda Domezain, Eduardo; López Fidalgo, Jesús Fernando; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN 0885-3924 Vol.58 N° 3 2019 págs. 445 - 453.e1
    Resumen
    Context. International consensus on indicators is necessary to standardize the global assessment of palliative care (PC) development. Objectives. To identify the best indicators to assess current national-level PC development. Methods. Experts in PC development were invited to rate 45 indicators organized by domains of the World Health Organization Public Health Strategy in a two-round RAND/UCLA-modified Delphi process. In the first round, experts rated indicators by relevance, measurability, and feasibility (1-9). Ratings were used to calculate a global score (1-9). Indicators scoring >7 proceeded to the second round for fine-tuning of global scores. Median, confidence interval, Content Validity Index, and Disagreement Index were calculated. Indicators scoring a lower limit 95% confidence interval of >7 and a Content Validity Index of >= 0.30 were selected. Results. 24 experts representing five continents and several organizations completed the study. 25 indicators showed a high content validity and level of agreement. Policy indicators (n = 8) included the existence of designated staff in the National Ministry of Health and the inclusion of PC services in the basic health package and in the primary care level list of services. Education indicators (n = 4) focused on processes of official specialization for physicians, inclusion of teaching at the undergraduate level, and PC professorship. Use of medicines indicators (n = 4) consisted of opioid consumption, availability, and prescription requirements. Services indicators (n = 6) included number and type of services for adults and children. Additional indicators for professional activity (n = 3) were identified. Conclusion. The first list including 25 of the best indicators to evaluate PC development at a national level has been identified. (C) 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
  • Autores: Baur, N; Centeno Cortés, Carlos; Garralda Domezain, Eduardo; et al.
    Revista: WELLCOME OPEN RESEARCH
    ISSN 2398-502X Vol.4 N° 77 2019
  • Autores: Noguera Tejedor, Antonio Luís; Arantzamendi Solabarrieta, María; López Fidalgo, Jesús Fernando; et al.
    Revista: INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH
    ISSN 1660-4601 Vol.16 N° 24 2019
    Resumen
    Quality medical education, centred on patient¿s needs, is crucial to develop the health professionals that our society requires. Research suggests a strong contribution of palliative care education to professionalism. The aim of this study was to design and validate a self-report inventory to measure student¿s professional development. Method: Sequential exploratory strategy mix method. Inventory was built based on the themes that emerged from the analysis of four qualitative studies about nurse and medical students¿ perceptions related to palliative care teaching interventions (Ballesteros et al 2014, Centeno et al 2014&2017, Rojí et al 2017). The structure and psychometrics of the inventory obtained has been tested in two different surveys with two different groups of medical students. Inventory reliability and construct validity were tested in the first survey group. To verify the inventory structure a confirmatory factor analysis was performed in a second survey group. Results: the has 33-items and seven dimensions: holistic approach, caring for and understanding the patient, personal growth, teamwork, decision-making, patient evaluation, and being a health care professional. Cronbach¿s-alpha was 0.73-0,84 in all seven domains, ICC: 0.95. The confirmatory factor analysis CFI was 1 with a Standardized Root Mean Square index 0,088(SRMR) and obtained a 0,99 goodness-of-fit R-square coefficient. Conclusions: This inventory is valid to assess student¿s professional development
  • Autores: Carrasco Gimeno, Jose Miguel (Autor de correspondencia); Gómez Baceiredo, Beatriz; Navas García, Alex; et al.
    Revista: PLOS ONE
    ISSN 1932-6203 Vol.14 N° 1 2019
    Resumen
    Background Lack of social awareness is a major barrier to the development of palliative care. Mass media influences public opinion, and frequently deal with palliative care contributing to its image and public understanding. Aim To analyse how palliative care is portrayed in Spanish newspapers, as well as the contribution made by the press to its social representation. Design Based on criteria of scope and editorial plurality, four print newspapers were selected. Using the newspaper archive MyNews (www.mynews.es), articles published between 2009 and 2014 containing the words "palliative care" or "palliative medicine" were identified. Sociological discourse analysis was performed on the identified texts on two levels: a) contextual analysis, focusing on the message as a statement; b) interpretative analysis, considering the discourse as a social product. Results We examined 262 articles. Politician and healthcare professionals were the main representatives transmitting messages on palliative care. The discourses identified were characterised by: strong ideological and moral content focusing on social debate, strong ties linking palliative care and death and, to a lesser degree, as a healthcare service. The messages transmitted by representatives with direct experience in palliative care (professionals, patients and families) contributed the most to building a positive image of this healthcare practice. Overall, media reflect different interests in framing public understanding about palliative care. Conclusion The knowledge generated about how palliative care is reflected in the printed media may help to understand better one of the main barriers to its development not only in Spain, but also in other contexts.
  • Autores: Belar Beitia, Alazne; Arantzamendi Solabarrieta, María (Autor de correspondencia); Rodríguez-Núñez, A.; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN 0885-3924 Vol.57 N° 3 2019 págs. 627 - 634
    Resumen
    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.
  • Autores: Reigada, C. (Autor de correspondencia); Martin-Utrilla, S. ; Perez-Ros, P.; et al.
    Revista: HELIYON
    ISSN 2405-8440 Vol.5 N° 8 2019 págs. e02196
    Resumen
    Audio-visual materials play a fundamental role in the context of education, care and clinical treatment, as they seem to have a high impact on public awareness. This study aims to describe what messages are perceived by the society at an International Festival of Short Films and Art on Diseases that may help to understand difficult topics, such as illness, dying and suffering. Through an observational, descriptive, cross-sectional study, using full participant observation and an open, self-administered questionnaire, 32 short films were analysed during a healthcare art festival. Categories were developed using inductive content analysis. The message perceived by the participants, after the viewing of the shorts and reflection of the debates among the attendees, were considered in four categories: i) creative and positive education is possible; ii) awareness of preconception and practical duties; iii) meaning of life changes the experience of illness; iv) family and caregivers also experienced suffering. The short films are considered as an excellent tool to generate social dialogue and debate. Public events can be understood as an opportunity to acquire, in an emotional and critical manner, other competencies for public awareness. Together, they are capable of communicating difficult messages through a fast, positive, and creative way.
  • Autores: Aparicio Pérez, María Dolores (Autor de correspondencia); Centeno Cortés, Carlos; Arantzamendi Solabarrieta, María
    Revista: BMC PALLIATIVE CARE
    ISSN 1472-684X Vol.18 N° 1 2019 págs. 28
    Resumen
    Background: In palliative care (PC) patients and relatives (P/R) often show their gratitude to the healthcare professionals (HP) who care for them. HP appreciate these displays of gratitude, although the impact of the same has not been examined in detail. Publications analysed tell personal experiences in which HP say that displays of gratitude create sensations of well-being, pride and increased motivation to carry on caring. No systematic examination in PC was found. These aspects related to gratitude may be important in the field of PC, where there is constant exposure to suffering and the preoccupation which arises from wanting to help HP to go on with their work, but it needs closer study and systemisation. The purpose of this study is to understand the significance and the role of the gratitude received from P/R for palliative care health professionals (PCHP). Methods: A suitable mixed method will be used. The first phase will be quantitative and will consist of a survey, piloted by experts, whose goal is to explore the current situation in Spain as regards displays of gratitude received by HP at PC services. It will be sent by e-mail. The results from this part will be incorporated into the second part which will be qualitative and whose goal is to understand the significance of the experience of receiving displays of gratitude from the perspective of PCHP, using a phenomenological approach. Interviews will be undertaken amongst PCHP. The interview guide will be designed after taking the survey results into account. The project has been granted ethical approval. Discussion: These results are set to provide a key contribution within the context of the growing preoccupation on how to care for HP, how to ensure retention and keep them from resigning, as well as preventing burnout, emotional fatigue and boosting their resilience. In order to do this, it is both interesting and ground breaking, to analyse the repercussion of spontaneous gratitude shown by P/R towards PCHP, to see if this is a useful resource to reduce these problems and to encourage the greater presence of dignity and humanisation, for both those receiving care and for those providing it. This gratitude may be one of these strategies.
  • Autores: Trinchete Reigada, Carla Manuela; Centeno Cortés, Carlos; Arantzamendi Solabarrieta, María
    Revista: PALLIATIVE MEDICINE
    ISSN 0269-2163 Vol.33 N° 1 2019 págs. 125
  • Autores: Noguera Tejedor, Antonio Luís (Autor de correspondencia); Robledano, R.; Garralda Domezain, Eduardo
    Revista: CURRENT OPINION IN SUPPORTIVE AND PALLIATIVE CARE
    ISSN 1751-4258 Vol.12 N° 4 2018 págs. 495 - 503
    Resumen
    Purpose of review The aim of this review is to understand how palliative care teaching (PCT) as a patient-centered learning model, influences medical undergraduate students' professional development. Recent findings To study PCT medical undergraduate students' learning experiences, we have employed the medical teaching concept, 'hidden curriculum,' as a way of describing attitudes and behavior conveyed implicitly by palliative care educators. Fifteen studies were selected: ten of those studies used a qualitative approach; two are theoretical explanations of the topic explored, one guideline, one review and just one quantitative study, made up the review. Medical undergraduate students reported that after PCT, they felt they had acquired better attitudes for effective integration with the patient, such as empathy or holistic care; ethical principles, such as respect or humanization of their clinical practice; and commitment to an improvement in competences, such as self-awareness or self-esteem. They also reported improved behavior in effective integration with patients, such as communication, caring for patients' families, and when addressing psychosocial, cultural and spiritual aspects; their commitment to improvement in competences, such as dealing with emotions and uncertainty; they learned team work as an effective way to interact within the health system; and to become more reliable, making themselves more available and dedicating enough time to each patient. Summary PCT seems to be an effective way of fostering medical undergraduate students' patient-centered professional development.
  • Autores: Pallotti, M. C. (Autor de correspondencia); Noguera Tejedor, Antonio Luís; Rhee, J. Y.; et al.
    Revista: BMJ SUPPORTIVE & PALLIATIVE CARE
    ISSN 2045-435X Vol.8 N° 3 2018 págs. 356- +
  • Autores: Girbau, M. B. (Autor de correspondencia); Monedero Rodríguez, Pablo; Centeno Cortés, Carlos
    Revista: ANALES DEL SISTEMA SANITARIO DE NAVARRA
    ISSN 1137-6627 Vol.41 N° 2 2018 págs. 283 - 284
  • Autores: Rhee, J. Y. (Autor de correspondencia); Foley, K.; Morrison, R. S.; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN 0885-3924 Vol.55 N° 5 2018 págs. E2 - E4
  • Autores: Errasti Ibarrondo, María Begoña; Jordán, J. A.; Pérez Diez del Corral, Mercedes; et al.
    Revista: JOURNAL OF ADVANCED NURSING
    ISSN 0309-2402 Vol.74 N° 7 2018 págs. 1723 - 1734
    Resumen
    Aims To offer a complete outlook in a readable easy way of van Manen's hermeneutic¿phenomenological method to nurses interested in undertaking phenomenological research. Background Phenomenology, as research methodology, involves a certain degree of complexity. It is difficult to identify a single article or author which sets out the didactic guidelines that specifically guide research of this kind. In this context, the theoretical¿practical view of Max van Manen's Phenomenology of Practice may be seen as a rigorous guide and directive on which researchers may find support to undertake phenomenological research. Design Discussion paper. Data sources This discussion paper is based on our own experiences and supported by literature and theory. Our central sources of data have been the books and writings of Max van Manen and his website ¿Phenomenologyonline¿. Implications for nursing The principal methods of the hermeneutic¿phenomenological method are addressed and explained providing an enriching overview of phenomenology of practice. A proposal is made for the way the suggestions made by van Manen might be organized for use with the methods involved in Phenomenology of Practice: Social sciences, philosophical and philological methods. Thereby, nurse researchers interested in conducting phenomenological research may find a global outlook and support to understand and conduct this type of inquiry which draws on the art.
  • Autores: Centeno Cortés, Carlos; Sitte, T.; de Lima, L.; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN 1096-6218 Vol.21 N° 10 2018 págs. 1398-1407
    Resumen
    Resumen Contexto: La Academia Pontificia de la Vida (PAV) es una institucion academica de la Santa Sede (Vaticano) cuyo objetivo es promover una vision catolica de la etica biomedica. La PAV invito a una serie de expertos en Cuidados Paliativos (CP) de todo el mundo, de todas las creencias, a desarrollar recomendaciones estrategicas para el desarrollo global de CP (Grupo PAL-LIFE). Diseno: Trece expertos internacionales reconocidos por su actividad promotora global de CP participaron en un estudio Delphi on-line. En un proceso de cuatro rondas, se pidio a los participantes que identificasen los grupos de interes o instituciones claves para la promocion de CP y que propusieran, para cada uno de ellos, recomendaciones estrategicas para el desarrollo de CP. Cada ronda incorporaba los comentarios de las rondas previas hasta lograr el consenso en las recomendaciones mas importantes. En una ultima fase, al grupo de expertos se le solicito la jerarquizacion por importancia de los grupos clave en una escala de 1 a 13. Tambien se solicitaron sugerencias concretas para la implementacion de las recomendaciones. Mediante analisis cluster se ordenaron los grupos de interes en dos niveles de importancia para el desarrollo de CP. Resultados: Trece recomendaciones fueron seleccionadas como las mas importantes (una por cada grupo clave). Las recomendaciones para los grupos mejor puntuados fueron: (1) Responsables Politicos: garantizar el acceso universal a los CP; (2) Academia: ofrecer cursos obligatorios de CP en el pregrado; (3) Profesionales sanitarios: promover una certificacion adecuada; (4) Hospitales e Instituciones sanitarias: asegurar el acceso a medicamentos de CP; y (5) Asociaciones de CP: ser promotoras eficaces y trabajar con los gobiernos en la implementacion de las recomendaciones internacionales sobre CP. Tambien se presentan recomendaciones para los ocho grupos clave restantes. Discusion: Este documento representa la posicion oficial de la PAV en lo que respecta a estrategias de promocion para el desarrollo de los CP en el mundo.
  • Autores: Johnson, M. J.; Jamali, A.; Ross, J.; et al.
    Revista: THORAX
    ISSN 0040-6376 Vol.73 N° 9 2018 págs. 880 - 883
    Resumen
    The inter-rater/test-retest reliability and construct validity of a palliative care needs assessment tool in interstitial lung disease (NAT:PD-ILD) were tested using NAT:PD-ILD-guided video-recorded consultations, and NAT:PD-ILD-guided consultations, and patient and carer-report outcomes (St George's Respiratory Questionnaire (SGRQ)-ILD, Carer Strain Index (CSI)/Carer Support Needs Assessment Tool (CSNAT)). 11/16 items reached at least fair inter-rater agreement; 5 items reached at least moderate test-retest agreement. 4/6 patient constructs demonstrated agreement with SGRQ-I scores (Kendall's tau-b, 0.24-20.36; P<0.05). 4/7 carer constructs agreed with the CSI/CSNAT items (kappa, 0.23-20.53). The NAT:PD-ILD is reliable and valid. Clinical effectiveness and implementation are to be evaluated. The tool is available through the The National Institute for Health and Care Excellence (NICE).
  • Autores: Barahona, E. ; Pinhao, R. ; Galindo, V. ; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN 0885-3924 Vol.55 N° 3 2018 págs. 968 - 972
    Resumen
    Background. Although Memorial Delirium Assessment Scale (MDAS) is a successful tool for delirium evaluation and monitoring, it is nevertheless important to determine whether cutoff scores vary according to the studied population. The main objective of this study was to evaluate the diagnostic sensitivity of the recently validated Spanish version of the MDAS. The secondary objective was to analyze possible diagnostic differences when used in a hospice or general hospital setting. Methodology. A prospective study was conducted with advanced cancer patients in two settings (hospice and general hospital). A diagnosis of delirium was established according to clinical criteria and the Confusion Assessment Method. Sensitivity (S), specificity (Sp), positive predictive value, and negative predictive value were determined according to the receiver operating characteristics curve. The MDAS values for different centers were studied using nonparametric tests (Mann-Whitney). Results. A total of 67 patients were included, 28 of whom had been diagnosed with delirium (15/40 hospice and 13/27 general hospital). The mean MDAS scores were 13.6 and 5.5 for the delirium and nondelirium groups, respectively. A cutoff score of 7 gave the optimal screening diagnosis balance (S 92.6%, Sp 71.8%, positive predictive value 70.1%, and negative predictive value 93.3%). Diagnoses of anxiety and depression were not related with delirium (P <= 0.44). A diagnosis of dementia was related to delirium (P <= 0.052) but did not influence the diagnostic sensitivity of MDAS (P <= 0.26). No differences were found between hospice and general hospital settings as regards the diagnostic sensitivity of MDAS. Conclusion. A screening cutoff of 7 appears to be optimal for MDAS Spanish version. No differences were found between advanced cancer patients cared for in a hospice or general hospital. However, more research is required to define the MDAS cutoff for patients with advanced cancer and dementia. (C) 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
  • Autores: Rullán, M. (Autor de correspondencia); Arantzamendi Solabarrieta, María; Carvajal Valcárcel, Ana; et al.
    Revista: PALLIATIVE & SUPPORTIVE CARE
    ISSN 1478-9523 Vol.16 N° 1 2018 págs. 73-79
    Resumen
    ICS ATLANTES The PDI has intrinsic therapeutic value and is useful in clinical practice, and it is also a way of examining issues related to dignity and the meaning of life within the context of advanced-stage illness. There is a need for studies that examine patient experiences through a PDI-based intervie
  • Autores: Rhee, J. Y.; Garralda Domezain, Eduardo; Namisango, E.; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN 0885-3924 Vol.56 N° 2 2018 págs. 230 - 238
    Resumen
    CONTEXT: To date, there is no study comparing palliative care (PC) development among African countries. OBJECTIVE: To analyze comparatively PC development in African countries based on region-specific indicators. METHODS: Data were obtained from the APCA Atlas of PC in Africa and a comparative analysis conducted. Nineteen indicators were developed and defined through qualitative interviews with African PC experts and a two-round modified Delphi consensus process with international experts on global PC indicators. Indicators were grouped by the WHO public health strategy for PC dimensions. These indicators were then sent as a survey to key informants in 52/54 African countries. Through an expert weighting process and ratings from the modified Delphi, weights were assigned to each indicator. RESULTS: Surveys were received from 89% (48/54) of African countries. The top three countries in overall PC development were, in order, Uganda, South Africa, and Kenya. Variability existed by dimension. The top three countries in specialized services were Uganda, South Africa, and Nigeria; in policies, it was Botswana followed by parity among Ethiopia, Rwanda, and Swaziland; in medicines, it was Swaziland, South Africa, then Malawi; in education, it was equivalent between Uganda and Kenya, then Ghana and Zambia. CONCLUSION: Uganda, South Africa, and Kenya are the highest performing countries and were the only ones with composite scores greater than 0.5 (50%). However, not one country universally supersedes all others across all four PC dimensions. The breakdown of rankings by dimension highlights where even high-performing African countries can focus their efforts to further PC development.
  • Autores: Rhee, J. Y. (Autor de correspondencia); Garralda Domezain, Eduardo; Namisango, E.; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN 1096-6218 Vol.21 N° 3 2018 págs. 342-353
  • Autores: Noguera Tejedor, Antonio Luís; Bolognesi, D.; Garralda Domezain, Eduardo; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN 1096-6218 Vol.21 N° 11 2018 págs. 1621 - 1626
    Resumen
    Background: In Europe in recent decades, university teaching of palliative medicine (PM) has evolved. In some countries it has been introduced as a compulsory subject in all medical schools, but in a majority of countries it remains an isolated subject at few universities. Objective: To explore how PM has been introduced into the curricula and how it is currently being taught at different European universities. Method: Case study method using face-to-face semistructured interviews with experienced PM professors, comparing how they have developed PM undergraduate programs at their universities. Results: An intentional sample of eight university professors from Spain, France, UK, Italy, Hungary, Sweden, Germany, and Poland was chosen. The introduction of PM in the universities depends on the existence of a favorable social and political context in relation to palliative care and the initiative of pioneers, trusted by students, to push this education forward. A PM curriculum frequently starts as an optional subject and becomes mandatory in a short period. In the reported universities, PM uses a wide variety of teaching methods, such as lectures, workshops, role-plays, and discussions. PM assessment included tests, discussions, reflections, portfolios, and research works. According to respondents' opinions, lack of recognition, funding, and accredited teachers, along with competition from other curricula, are the main barriers for palliative medicine teaching development at universities. Conclusion: Diverse paths and tools have been identified for PM teaching in Europe. The described cases may shed light on other medical schools to develop PM curricula.
  • Autores: Hjermstad, MJ; Aass, N; Aielli, F; et al.
    Revista: BMJ SUPPORTIVE & PALLIATIVE CARE
    ISSN 2045-435X Vol.8 N° 4 2018 págs. 456 - 467
    Resumen
    Objectives Palliative care (PC) services and patients differ across countries. Data on PC delivery paired with medical and self-reported data are seldom reported. Aims were to describe (1) PC organisation and services in participating centres and (2) characteristics of patients in PC programmes. Methods This was an international prospective multicentre study with a single web-based survey on PC organisation, services and academics and patients¿ self-reported symptoms collected at baseline and monthly thereafter, with concurrent registrations of medical data by healthcare providers. Participants were patients ¿18 enrolled in a PC programme. Results 30 centres in 12 countries participated; 24 hospitals, 4 hospices, 1 nursing home, 1 home-care service. 22 centres (73%) had PC in-house teams and inpatient and outpatient services. 20 centres (67%) had integral chemotherapy/radiotherapy services, and most (28/30) had access to general medical or oncology inpatient units. Physicians or nurses were present 24 hours/7 days in 50% and 60% of centres, respectively. 50 centres (50%) had professorships, and 12 centres (40%) had full- time/part-time research staff. Data were available on 1698 patients: 50% females; median age 66 (range 21¿97); median Karnofsky score 70 (10¿ 100); 1409 patients (83%) had metastatic/ disseminated disease; tiredness and pain in the past 24 hours were most prominent. During follow-up, 1060 patients (62%) died; 450 (44%) <3 months from inclusion and 701 (68%)
  • Autores: Rhee, J. ; Garralda Domezain, Eduardo; Centeno Cortés, Carlos
    Revista: MEDICINA PALIATIVA
    ISSN 1134-248X Vol.25 N° 3 2018 págs. 119 - 120
  • Autores: Yennurajalingam, S. (Autor de correspondencia); Rodrigues, L. F.; Shamieh, O. M.; et al.
    Revista: PALLIATIVE MEDICINE
    ISSN 0269-2163 Vol.32 N° 4 2018 págs. 870 - 880
    Resumen
    Background: Understanding patients' decision control preferences is important in providing quality cancer care. Patients¿ decisional control preference can be either active (patients prefer to make decisions themselves), shared (collaborative between patient, their physician, and/or family), or passive (patients prefer that the decisions are made by either the physician and/or their family). Aim: To determine the frequency and predictors of passive decision control preferences among advanced cancer patients. We also determined the concordance between actual decision-making and decision control preferences and its association with patient satisfaction. Design: In this cross-sectional survey of advanced cancer patients referred to palliative care across 11 countries, we evaluated sociodemographic variables, Control Preference Scale, and satisfaction with the decisions and care. Results: A total of 1490 participants were evaluable. Shared, active, and passive decision control preferences were 33%, 44%, and 23%, respectively. Passive decision control preferences (odds ratio, p value) was more frequent in India (4.34, <0.001), Jordan (3.41, <0.001), and France (3.27, <0.001). Concordance between the actual decision-making and decision control preferences was highest in the United States (k=0.74) and lowest in Brazil (0.34).
  • Autores: Rhee, J.; Garralda Domezain, Eduardo; Namisango, E.; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN 0885-3924 Vol.55 N° 5 2018 págs. 1313 - 1320
    Resumen
    CONTEXT: Factors contributing to and impeding palliative care (PC) development in Africa can provide insights into current strategies for advancing PC. OBJECTIVES: To identify key factors affecting PC development in African countries from in-country PC experts' perspectives. METHODS: Sixteen PC experts from seven African countries undertook semi-structured interviews on PC development in their respective countries. An interpretive description approach was adopted, with data analyzed using constant comparison. RESULTS: Emerged themes included: drivers, strengths, challenges, and aspirations for PC development in Africa. Drivers included advocates and pioneering organizations, HIV/AIDS, culture of caregiving, and the World Health Assembly PC Resolution. Strengths included community health workers, the special role of nurses, diversity of services, and short training courses. Challenges included lack of PC education, lack of standardization in implementation, limited availability of and/or accessibility to morphine, poverty and disease burden, and lack of funding for PC. Aspirations included integration of PC, specialization in PC, nurse prescribing, and strong partnerships with Ministries of Health. Factors already highlighted in the literature were only briefly discussed. CONCLUSION: The key factors underpinning PC development in the seven countries contributed to the beginnings of PC in Africa, fueled by advocates that built on existing strengths to maximize opportunities
  • Autores: Bush, S. H. (Autor de correspondencia); Lawlor, P. G.; Ryan, K. ; et al.
    Revista: ANNALS OF ONCOLOGY
    ISSN 0923-7534 Vol.29 2018 págs. 143 - 165
  • Autores: Centeno Cortés, Carlos; Sitte, T.; de-Lima, L.; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN 1096-6218 Vol.21 N° 10 2018 págs. 1389 - 1397
    Resumen
    ackground: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican), which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC (PAL-LIFE group). Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In a last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13-point scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development. Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round, and, of those, 13 recommendations were chosen as the most important (1 for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top 5 groups were as follows: (1) Policy makers: Ensure universal access to PC; (2) Academia: Offer mandatory PC courses to undergraduates; (3) Healthcare workers: PC professionals should receive adequate certification; (4) Hospitals and healthcare centers: Every healthcare center should ensure access to PC medicines; and (5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. A recommendation for each of the remaining eight groups is also presented. Discussion: This white paper represents a position statement of the PAV developed through a consensus process in regard to advocacy strategies for the advancement of PC in the world.
  • Autores: Yennurajalingam, S. (Autor de correspondencia); Rodrigues, L. F.; Shamieh, O. M.; et al.
    Revista: ONCOLOGIST
    ISSN 1083-7159 Vol.23 N° 4 2018 págs. 501 - 506
    Resumen
    Background. There are limited data on illness understanding and perception of cure among advanced cancer patients around the world. The aim of the study was to determine the frequency and factors associated with inaccurate perception of curability among advanced cancer patients receiving palliative care across the globe. Materials and Methods. Secondary analysis of a study to understand the core concepts in end-of-life care among advanced cancer patients receiving palliative care from 11 countries across the world. Advanced cancer patients were surveyed using a Patient Illness Understanding survey and Control Preference Scale. Descriptive statistics and multicovariate logistic regression analysis were performed. Results. Fifty-five percent (763/1,390) of patients receiving palliative care inaccurately reported that their cancer is curable. The median age was 58, 55% were female, 59% were married or had a partner, 48% were Catholic, and 35% were college educated. Sixty-eight percent perceived that the goal of therapy was "to get rid of their cancer", and 47% perceived themselves as "seriously ill". Multicovariate logistic regression analysis shows that accurate perception of curability was associated with female gender (odds ratio [OR] 0.73, p= .027), higher education (OR 0.37, p< .0001), unemployment status (OR 0.69, p= .02), and being from France (OR 0.26, p< .0001) and South Africa (OR 0.52, p= .034);
  • Autores: Wilson, D. M. (Autor de correspondencia); Brow, R.; Playfair, R.; et al.
    Revista: SOCIETIES
    ISSN 2075-4698 Vol.8 N° 4 2018 págs. 108
    Resumen
    Healthcare services are one of the twelve determinants of population health. While all types of healthcare services are important, timely access to hospital-based care when needed is critical. For three decades, long waits and wait lists for hospital admission and inpatient care have been a concern in Canada. Undersupply of hospital beds to meet population needs may be the cause of this as hospitals were downsized due to government funding cutbacks and hospital expansion has not occurred since despite population growth and aging. The availability of hospital beds for palliative population health needs may therefore be an issue, particularly as longstanding concern exists about terminally-ill and dying people being frequently admitted to hospital and having long hospital stays. A decline in hospital deaths in many developed countries, including Canada, could indicate that palliative population needs for hospital-based care are not being met. This paper compares the number of hospitals and hospital beds that exist in 9 Canadian provinces and 15 developed countries in relation to population and spatial considerations in an attempt to determine an optimal number of hospital beds for the general public and thus also palliative population health needs. Methods: Document analysis. Publicly-available hospital, population, and geographic information was sought for 9 Canadian provinces and 15 developed countries and compared. Results: Major differences in citizen to hospital bed ratios and citizen to hospital ratios across provinces and countries were found. The availability of hospitals and hospital beds clearly varies. Conclusion: Some regions may have too few hospitals and hospital beds to meet the palliative and other care needs of their citizens. Sufficient beds should exist so necessary admissions to hospital can occur without harmful delay.
  • Autores: Pons Izquierdo, Juan José
    Libro: Cuestiones transversales en la innovación de la docencia y la investigación de las ciencias sociales y jurídicas: Especial referencia al impacto del COVID-19, las nuevas tecnologías y metodologías, las perspectivas de género y la diversidad
    ISSN 978-84-1377-591-3 2021 págs. 757 - 775
    Resumen
    El período de la pandemia COVID-19 ha servido para ensayar la utilización de herramientas digitales que pretenden situar al estudiante en lugares a los que no se podía acceder por las restricciones sanitarias, recreando de alguna manera la visita y ofreciendo los mismos contenidos que de otra manera se hubieran aprendido in situ. Se habla así de excursiones o visitas virtuales, que pretenden ser un sustitutivo del acceso presencial a los lugares concretos que interesa conocer. Este no es un aspecto novedoso, ya que se viene trabajando en la línea de nuevos tipos de formatos docentes desde hace mucho tiempo, aunque, bien es cierto, que la pandemia ha multiplicado los ejemplos de aplicación. En el ámbito concreto de las Ciencias de la Tierra, el desarrollo de la tecnología de los sistemas de información geográfica online ha supuesto la llegada de toda una serie de herramientas de trabajo, que permiten al docente acercar el territorio hasta las aulas, utilizando para ello mapas interactivos y otros materiales como fotografías, vídeos, textos y un sinfín de materiales docentes.
  • Autores: Centeno Cortés, Carlos; Payne, S.; Garralda Domezain, Eduardo
    Libro: Oxford textbook of Palliative Medicine
    ISSN 9780198821328 2021 págs. 3 - 13
  • Autores: Clark, D.; Centeno Cortés, Carlos; Clelland, D.; et al.
    Libro: Global atlas of palliative care
    ISSN 978-0-9928277-2-4 2020 págs. 45 - 58
    Resumen
    The Global Atlas of Palliative Care is a source of essential information on the status of palliative care worldwide. This second edition of the Global Atlas reveals some of the changes that have occurred since the first edition was published in 2014. For instance, we now have a better idea of how many people need palliative care worldwide. In the 1st edition a conservative estimate of 40 million has now been more accurately estimated as over 56.8 million, including 25.7 million in the last year of life.
  • Autores: Arantzamendi Solabarrieta, María; Belar Beitia, Alazne; Rojí Buqueras, María del Rocío
    Libro: Textbook of Palliative Care
    ISSN 978-3-319-77738-2 2019 págs. 1 - 24
    Resumen
    Textbook of Palliative Care is a comprehensive, clinically relevant and state-of-the art book, aimed at advancing palliative care as a science, a clinical practice and as an art. Palliative care has been part of healthcare for over fifty years but we still find ourselves having to explain its nature and practice to colleagues and to the public in general. Healthcare education and training has been slow to recognize the vital importance of ensuring that all practitioners have a good understanding of what is involved in the care of people with serious or advanced illnesses and their families. However, the science of palliative care is advancing and our understanding concerning many aspects of palliative care is developing rapidly. The book is divided into separate sections for ease of use. Over 100 chapters written by experts in their given fields provide up-to-date information on a wide range of topics of relevance to those providing care towards the end of life no matter what the disease may be. We present a global perspective on contemporary and classic issues in palliative care with authors from a wide range of disciplines involved in this essential aspect of care. The Textbook includes sections addressing aspects such as symptom management and care provision, organization of care in different settings, care in specific disease groups, palliative care emergencies, ethics, public health approaches and research in palliative care.
  • Autores: Trinchete Reigada, Carla Manuela; Pelttari, L.; Radbruch, L.; et al.
    Libro: EAPC Atlas of palliative care in Europe 2019
    ISSN 9789463883443 2019 págs. 77 - 80
  • Autores: Trinchete Reigada, Carla Manuela; Froggatt, K.; Van-den-Block, L.
    Libro: EAPC Atlas of palliative care in Europe 2019
    ISSN 9789463883443 2019 págs. 73 - 76
  • Autores: Pastrana, T.; De-Lima, L.; Sánchez Cárdenas, Miguel Antonio; et al.
    ISSN 978-0-9989787-4-1 2021
  • Autores: Bouësseau, M. C. (Coordinador); Sánchez Cárdenas, Miguel Antonio; Garralda Domezain, Eduardo; et al.
    ISSN 978-92-4-003336-8 2021
    Resumen
    Assessing the development of palliative care worldwide: a set of actionable indicators provides a refined set of actionable indicators that can be used by countries to monitor and assess the development of palliative care. The indicators have been identified on the basis of their relevance and feasibility by experts from across the globe. The indicators are applicable to all settings including countries in the very early stages of palliative care development. The target audience of this report includes policy-makers, palliative care programme managers and health-care workers. The closing section of the report is dedicated to detailed support to country stakeholders on the selection and implementation of palliative care indicators at national or sub-national levels.
  • Autores: Arias-Casais, N.; Garralda Domezain, Eduardo; Rhee, J. Y.; et al.
    ISSN 9789463883443 2019
  • Autores: Arias-Casais, N.; Garralda Domezain, Eduardo; López Fidalgo, Jesús Fernando; et al.
    ISSN 978-0-9989787-1-0 2019
    Resumen
    List of national-level palliative care indicators providing a specific, evidence-based starting point on the development of palliative care, adding evidence to existence studies and allowing for replication. Furthermore, this allows for assessing national level progress and conducting comparative analysis and prospective studies. Tracking the indicators across time offers the opportunity to pool data data in a same repository that could be prospectively evaluated, allowing for trends in palliative care development at the international level.
  • Autores: Centeno Cortés, Carlos; Sitte, T.; de Lima, L.; et al.
    ISSN 978-88-266-0295-0 2019

Proyectos desde 2018

  • Título: Traducción, adaptación cultural y validación de la escala Person-Centred Practice Inventory-Staff (PCPI-S) y la escala Centred practice inventory-student (PCPI-ST)
    Código de expediente: PI20/01644
    Investigador principal: ANA CARVAJAL VALCARCEL.
    Financiador: INSTITUTO DE SALUD CARLOS III
    Convocatoria: 2020 AES Proyectos de investigación
    Fecha de inicio: 01-01-2021
    Fecha fin: 31-12-2023
    Importe concedido: 58.080,00 €
    Fondos FEDER: SI
  • Título: Dignidad y deseos de morir en pacientes con enfermedad avanzada: estudio de factores asociados y de las vivencias de los pacientes y profesionales
    Código de expediente: PI18/01703
    Investigador principal: CARLOS CENTENO CORTES.
    Financiador: INSTITUTO DE SALUD CARLOS III
    Convocatoria: AES2018 PI
    Fecha de inicio: 01-01-2019
    Fecha fin: 31-12-2022
    Importe concedido: 20.570,00 €
    Fondos FEDER: SI
  • Título: Patrones multimodales de representación del tiempo
    Código de expediente: FFI2015-70876-P
    Investigador principal: CRISTOBAL PAGAN CANOVAS, INES OLZA MORENO.
    Financiador: MINISTERIO DE CIENCIA E INNOVACIÓN
    Convocatoria: 2015 MINECO EXCELENCIA. PROYECTOS I+D
    Fecha de inicio: 01-01-2016
    Fecha fin: 31-12-2018
    Importe concedido: 26.015,00 €
    Fondos FEDER: SI
  • Título: RESPACC - Research for all palliative care clinicans
    Código de expediente: 2020-1-RO01-KA202-080128
    Investigador principal: CARLOS CENTENO CORTES
    Financiador: COMISIÓN EUROPEA
    Convocatoria: KA202-Strategic partnerships for vocational education and training
    Fecha de inicio: 01-12-2020
    Fecha fin: 30-11-2022
    Importe concedido: 47.478,00 €
    Fondos FEDER: NO
  • Título: Palliative sedation
    Código de expediente: 825700
    Investigador principal: CARLOS CENTENO CORTES
    Financiador: COMISIÓN EUROPEA IGC INTERNATIONAL GROWTH CENTRE
    Convocatoria: H2020-SC1-BHC-23-2018
    Fecha de inicio: 01-01-2019
    Fecha fin: 31-12-2023
    Importe concedido: 607.125,00 €
    Fondos FEDER: NO
  • Título: ARTE Y TRANSFORMACIÓN SOCIAL
    Investigador principal: RICARDO ISIDRO PIÑERO MORAL
    Financiador: UNIVERSIDAD DE NAVARRA
    Convocatoria: 2020 Convocatoria PIUNA, 2021 Convocatoria PIUNA
    Fecha de inicio: 01-09-2020
    Fecha fin: 31-08-2022
    Importe concedido: 21.500,00 €