Miembros del Grupo
Coordinador
Investigadores
Noelia
García Rueda
Alex
Navas García
Miguel Antonio
Sánchez Cárdenas
Carla Manuela
Trinchete Reigada
Colaboradores
Estefanía
Berjón Elvira
Danny
Van Steijin
Líneas de Investigación
- Desarrollo internacional de cuidados paliativos.
- Educación médica de cuidados paliativos (profesionales).
- El mensaje de cuidados paliativos a la sociedad.
- Evolución y control sintomático en la enfermedad avanzada.
- Fundamentos y valores intangibles de cuidados paliativos.
- Intervención precoz de cuidados paliativos en la trayectoria de la enfermedad.
Palabras Clave
- Astenia
- Cuidados paliativos
- Desarrollo
- Dignidad humana
- Educación médica
- Enfermedad avanzada
- Intangibles
- Integración
- Medicina paliativa
- Mensaje
Publicaciones Científicas desde 2018
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Autores: Stone, P. (Autor de correspondencia); Candelmi, Diego Ezequiel; Kandola, K.; et al.Revista: CURRENT TREATMENT OPTIONS IN ONCOLOGYISSN: 1527-2729 Vol.24 N° 2 2023 págs. 93 - 107ResumenOpinion statementFatigue is a common and distressing symptom experienced by patients with cancer. It is most common in patients with locally advanced or metastatic incurable disease. It can have profound effects on quality-of-life and physical functioning. In addition to general supportive measures (directed at tackling contributory conditions and comorbidities), a variety of specific interventions have been developed which can be broadly categorised as physical therapies, psychological therapies or medication. There is some evidence that each of these approaches can have benefits in patients with earlier stage disease, those undergoing active treatment and in cancer survivors. The best evidence is for aerobic exercise, yoga, cognitive-behavioural therapy (CBT) and psycho-educational interventions. Less strong evidence supports the use of medications such as methylphenidate or ginseng. In patients with advanced disease, it is likely that the mechanisms of fatigue or the factors contributing to fatigue maintenance may be different. Relatively fewer studies have been undertaken in this group and the evidence is correspondingly weaker. The authors recommend the cautious use of aerobic exercise (e.g. walking) in those who are still mobile. The authors advise considering the use of psycho-educational approaches or CBT in those patients who are able to engage in such forms of therapy. In patients near the end-of-life, the authors advise use of dexamethasone (short-term use) and other pharmacological treatments only on the basis of a clinical trial.
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Autores: Rijpstra, M. (Autor de correspondencia); Vissers, K.; Centeno Cortés, Carlos; et al.Revista: BMC PALLIATIVE CAREISSN: 1472-684X Vol.22 N° 1 2023 págs. 8ResumenBackground Palliative sedation involves the intentional lowering of consciousness at the end of life. It can be initiated to relieve a patient's burden caused by refractory symptoms at the end of life. The impact of palliative sedation needs to be clinically monitored to adjust the proper dose and regimen of sedative medication to ensure that patients are at ease and comfortable at the end of their lives. Although there is consensus among health care professionals and within guidelines that efficacy of palliative sedation needs to be closely monitored, there is no agreement about how, when, and by whom, this monitoring should be performed. The aim of this study is to evaluate the effects of palliative sedation by measuring the discomfort levels and sedation/agitation levels of the patients at regular timepoints. In addition, the clinical trajectories of those patients receiving palliative sedation will be monitored and recorded.Methods The study is an international prospective non-experimental observational multicentre study. Patients are recruited from in-patient palliative care settings in Belgium, Germany, Italy, Spain and the Netherlands. Adult patients with advanced cancer are monitored by using proxy observations of discomfort (DS-DAT) and depth of sedation/agitation levels (RASS-PAL) during palliative sedation. After the palliative sedation period, the care for the specific participant case is evaluated by one of the attending health care professionals and one relative via a questionnaire.Discussion This study will be the first international prospective multicenter study evaluating the clinical practice of palliative sedation including observations of discomfort levels and levels of sedation. It will provide valuable information about the practice of palliative sedation in European countries in terminally ill cancer patients. Results from this study will facilitate the formulation of recommendations for clinical practice on how to improve monitoring and comfort in patients receiving palliative sedation.
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Autores: Arantzamendi Solabarrieta, María; Aparicio, M.; Centeno Cortés, Carlos; et al.Revista: PALLIATIVE CARE AND SOCIAL PRACTICEISSN: 2632-3524 Vol.17 2023 págs. 26323524221147538ResumenBackground: Gratitude has sparked interest in the world of health. It is considered as a personality characteristic or as an emotion. However, little has been explored in the context of the interpersonal relationship of caring. An exploration in the context of end of life is ground-breaking. Objectives: This study analyses and reflects on the object of gratitude from the perspective of both the persons being cared for and the professionals providing health care. What are patients and their family members grateful for in palliative care? What is the reason for gratitude? What do these health professionals perceive when there is gratitude? These questions were answered considering the gratitude generated in health care encounters, not gratitude as personality trait. Methods: The phenomenological approach was used starting from lived clinical experiences. In the light of the dialogue between clinical experiences and philosophy, this study proposes an explanation of the 'real' or essential object of gratitude in palliative care. It was conducted within the context of palliative care. The study materials were manifestations of gratitude expressed or felt in clinical encounters and published in newspapers or shared in daily encounters. These were the basis for analysis and reflection and interdisciplinary dialogue. Findings: The analyses performed indicated healing or deep relief in serious diseases as objects of gratitude according to patients' perspective, and professional self-affirmation until the end according to the professionals' perspective. Conclusion: The two perspectives shared an important common fact, namely, the need to consider the persons in their entirety, and the importance of not losing sight of the value they have. This concept would characterize the nature of gratitude, its object being the 'objective good' for patients, family members, and palliative care professionals.
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Autores: Garralda Domezain, Eduardo (Autor de correspondencia); Busa, C.; Pozsgai, E.; et al.Revista: EUROPEAN JOURNAL OF PUBLIC HEALTHISSN: 1101-1262 Vol.33 N° 1 2023 págs. 35 - 41ResumenBackground Palliative sedation is a commonly accepted medical practice. This study aims to clarify how palliative sedation is regulated in various countries and whether this may impact its practice. Methods An online survey requesting regulations on palliative sedation was conducted in Belgium, Germany, Hungary, Italy, The Netherlands, Spain, Romania and the UK. Purposive sampling strategy was used to identify clinicians from different medical fields and legal experts for each country. Regulations were analyzed using the principles of the European Association for Palliative Care Framework on palliative sedation. Country reports describing how palliative sedation is regulated were elaborated. Results One hundred and thirty-nine out of 223 (62%) participants identified 31 laws and other regulations affecting palliative sedation. In Spain, 12 regional laws recognize palliative sedation as a right of the patient at the end of life when there are refractory symptoms. In Italy, the law of informed consent and advance directives specifically recognizes the doctor can use deep sedation when there are refractory symptoms. There are also general medical laws that, while not explicitly referring to palliative sedation, regulate sedation-related principles: the obligation of doctors to honour advance directives, informed consent, the decision-making process and the obligation to document the whole process. In Germany, the Netherlands and the UK, palliative sedation is also regulated through professional guidelines that are binding as good practice with legal significance. Conclusions Palliative sedation is considered in the general law of medical practice, in laws regarding the patient's autonomy, and through professional guidelines.
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Autores: Cibula, D. (Autor de correspondencia); Raspollini, M. R.; Planchamp, F.; et al.Revista: INTERNATIONAL JOURNAL OF GYNECOLOGICAL CANCERISSN: 1048-891X Vol.33 N° 5 2023 págs. 649 - 666ResumenIn 2018, the European Society of Gynecological Oncology (ESGO) jointly with the European Society for Radiotherapy and Oncology (ESTRO) and the European Society of Pathology (ESP) published evidence-based guidelines for the management of patients with cervical cancer. Given the large body of new evidence addressing the management of cervical cancer, the three sister societies jointly decided to update these evidence-based guidelines. The update includes new topics to provide comprehensive guidelines on all relevant issues of diagnosis and treatment in cervical cancer.To serve on the expert panel (27 experts across Europe) ESGO/ESTRO/ESP nominated practicing clinicians who are involved in managing patients with cervical cancer and have demonstrated leadership through their expertise in clinical care and research, national and international engagement, profile, and dedication to the topics addressed. To ensure the statements were evidence based, new data identified from a systematic search was reviewed and critically appraised. In the absence of any clear scientific evidence, judgment was based on the professional experience and consensus of the international development group. Before publication, the guidelines were reviewed by 155 independent international practitioners in cancer care delivery and patient representatives.These updated guidelines are comprehensive and cover staging, management, follow-up, long-term survivorship, quality of life and palliative care. Management includes fertility sparing treatment, early and locally advanced cervical cancer, invasive cervical cancer diagnosed on a simple hysterectomy specimen, cervical cancer in pregnancy, rare tumors, recurrent and metastatic diseases. The management algorithms and the principles of radiotherapy and pathological evaluation are also defined.
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Autores: Urrizola Martínez, Amaia (Autor de correspondencia); Santiago, R.; Gea Sánchez, Alfredo; et al.Revista: BMC MEDICAL EDUCATIONISSN: 1472-6920 Vol.23 N° 1 2023 págs. 19ResumenBackground With university material doubling over time, medical students need to learn how to become successful life-long learners. Overall a Deep Approach (DA) to learning, and Self-Regulation (SR) skills are among the elements with a potential to accelerate learning, and Student Engagement (SE) has been associated with better university outcomes. However, specific recommendations concerning what students should do are lacking. The aim of this study was to identify above-average students' specific attitudes and strategies toward learning. Methods A cross-sectional analysis of the answers to the validated questionnaires Revised Study Process Questionnaire (R-SPQ-2F), SE, and Motivated Strategies for Learning Questionnaire (MSLQ) of 155 s and third-year students included in a prospective interventional study in the University of Navarre in September 2020 was performed. Students were stratified according to their standardized average mean in above-average (mean > 0) and below-average (mean <= 0). Results Overall, 67.1% of students scored higher in DA than in Surface Approach (SA) and had very high Intrinsic Value (IV, median 5.9). A higher proportion of above-average students had DA > SA score (72.7% vs 57.1%, p = 0.05), and showed higher scores in SR (median 4.9 vs 4.3, p = 0.007) compared to below-average, while the latter scored higher in SA (median 24.5 vs 23, p = 0.04), and surface motive (median 11 vs 9, p = 0.007). No differences were found in SE, and both groups had average scores in the cooperative dimension. Differences were rooted to hard work, interest over material and prioritizing understanding over rote-learning motives and aligned strategies. Conclusions Curricula design and assessment should be aligned to promote DA and SR skills among learners. Furthermore, it is paramount that teachers help instill students with interest over material and encourage understanding and hard work, since are traits associated with better results. More studies concerning metacognition and other promising traits for becoming life-long learners and prepared professionals should be made.
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Autores: Urrizola Martínez, Amaia (Autor de correspondencia); Santiago, R.; Arbea Moreno, LeireTítulo: Learning techniques that medical students use for long-term retention: a cross-sectional analysisRevista: MEDICAL TEACHERISSN: 0142-159X Vol.45 N° 4 2023 págs. 412 - 418ResumenBackground Reviews and meta-analysis conclude that distributed practice and practice testing are deemed the most effective learning techniques among undergraduate students, while rereading, underlining, and summarisation are the most known and less effective ones. However, this evidence is gathered from short-term retention studies prior to 2014, and there are other techniques with promising effect (metacognition, retrieval, concept mapping, setting learning goals) that were not included. Also, there is little real-settings evidence regarding what works best for long-term retention in medical students. Methods A cross-sectional analysis was carried out in a sample of 155 of second and third-year students of the Degree in Medicine at Universidad de Navarra in September 2020. The aim was to evaluate the impact the use of different learning techniques had on academic performance of undergraduate medical students, assessing up to three months of retention. A subgroup analysis was performed based on learning approach, spacing of the learning sessions, and academic results. Results Rereading, highlighting, and summarisation were the most known and used techniques among medical students, with detrimental effects on academic outcomes. Metacognition was the most effective technique, but up to 92% of the students didn't know what it was. No single learning technique seemed to improve results in below-average students. Conclusions University curricula should promote the use of more efficient techniques, particularly metacognition, to help students become lifelong learners. More studies are needed to confirm these findings. Below-average students remain a challenging population.
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Autores: Predoiu, O.; Tsekezogiou, A. J.; Payne, S.; et al.Revista: PALIATIA- JOURNAL OF PALIATIVE CAREISSN: 1844-7058 Vol.16 N° 2 2023 págs. 5 - 10ResumenAbstract RESPACC was an Erasmus + funded project to develop a framework of core research competencies for palliative care (PC) clinicians and supporting education materials (http://www.studiipaliative.ro/projects/research-respacc/). The supporting materials included a self-assessment quiz to guide PC multidisciplinary team members on areas of research understanding that needed further development. The objective was to pilot the self-assessment quiz developed based on the research competency framework for PC clinical teams and test it for face validity and clarity. Methods: A pilot observational study was conducted to test the self-assessment quiz for face validity and clarity. The self-assessment quiz was developed between May-November 2021. It was structured to include questions about each of the competencies in the seven domains of the framework, using the examples. Items within the quiz were responded on a 5- points ordinal scale, with participants identifying their perceived competency as: Novice, Advanced Beginner, Competent, Proficient, Expert (each clearly defined). The quiz was developed in English and then translated into the national languages of partners (Greek, Romanian, Spanish). The quiz was piloted with Romanian PC professionals attending the National Palliative Care Conference. Questions about clarity of the quiz, suggestions for improvements were asked together with some demographic data about participants. Results: Multidisciplinary PC clinicians participated in the pilot testing (18 physicians, 4 nurses, 2 psychologists and 1 physiotherapist). Most (n=15) had less than one year of experience in PC. Participants identified themselves as: Novice (n=5), Advanced beginner (n=9), Competent (n=5), Proficient (n=3), Expert (n=3). All respondents answered all question without difficulties and considered the quiz to be clearly written, well structured and adequate. Conclusions: The self-assessment quiz is easy to use, and may be useful in helping members of PC teams assess their competencies and identify their research education needs. Keywords: pilot test, competency, research, palliative care https://www.paliatia.eu/new/wp-content/uploads/2023/05/Jurnalul-Paliatia_apr-2023_1-6.pdf
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Autores: Salas Moreira, Ana Paula; Gómez Baceiredo, Beatriz; Centeno Cortés, Carlos; et al.Revista: PLOS ONEISSN: 1932-6203 Vol.18 N° 6 2023 págs. e0286343ResumenIntroduction: Society associates palliative care with "death" or "end of life", which cause them fear and anxiety. In Spain, the media worsens the misunderstanding by depicting a wrong picture of palliative care. Educational innovation for university students may serve as an alternative communication strategy. Care and Society is a university course designed by and for students from non-health degrees to help disseminate the palliative care message. The first year of the Teach-Inn Pal project aims to evaluate the effects of the course and to identify areas of improvement. Objective: To present an evaluation to determine if the course can work as a campaign to refocus the public opinion on palliative care and share the preliminary results of the pilot study. Methodology: A prospective Participatory Action Research study. University students enrolled in the course (n = 29) are invited to test and redesign the palliative care message. Knowledge and empathy will be measured throughout the learning process. Afterwards, qualitative, thematic, inductive analysis of the course material will be carried out. This study is registered on the ISRCTN Registry under the name "Can a university course help communicate palliative care?" (Registration number: ISRCTN10236642). Discussion: This study is part of a doctoral thesis. Education is used as a creative outlet, allowing rapid testing of multiple tools to create ambassadors of palliative care that may reframe the public opinion. Conclusion: The understanding of students about palliative care changed, the overall impression of the experience was positive, and students were also able to explain palliative care to people with little or no experience in the topic. However, to determine if they became ambassadors the results of the mid-term assessment are required.
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Autores: Belar Beitia, Alazne; Arantzamendi Solabarrieta, María (Autor de correspondencia); Menten, J.; et al.Revista: CANCERSISSN: 2072-6694 Vol.14 N° 2 2022 págs. 301ResumenSimple 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.
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Autores: Surges, S. M. (Autor de correspondencia); Garralda Domezain, Eduardo; Jaspers, B.; et al.Revista: JOURNAL OF PALLIATIVE MEDICINEISSN: 1096-6218 Vol.25 N° 11 2022 págs. 1721 - 1731ResumenIn 2009, the European Association for Palliative Care (EAPC) developed a framework on palliative sedation, acknowledging this practice as an important and ethically acceptable intervention of last resort for terminally ill patients experiencing refractory symptoms. Before and after that, other guidelines on palliative sedation have been developed in Europe with variations in terminology and concepts. As part of the Palliative Sedation project (Horizon 2020 Funding No. 825700), a revision of the EAPC framework is planned. The aim of this article is to analyze the most frequently used palliative sedation guidelines as reported by experts from eight European countries to inform the discussion of the new framework. The three most reported documents per country were identified through an online survey among 124 clinical experts in December 2019. Those meeting guideline criteria were selected. Their content was assessed against the EAPC framework on palliative sedation. The quality of their methodology was evaluated with the Appraisal Guideline Research and Evaluation (AGREE) II instrument. Nine guidelines were included. All recognize palliative sedation as a last-resort treatment for refractory symptoms, but the criterion of refractoriness remains a matter of debate. Most guidelines recognize psychological or existential distress as (part of) an indication and some make specific recommendations for such cases. All agree that the assessment should be multiprofessional, but they diverge on the expertise required by the attending physician/team. Regarding decisions on hydration and nutrition, it is proposed that these should be independent of those for palliative sedation, but there is no clear consensus on the decision-making process. Several weaknesses were highlighted, particularly in areas of rigor of development and applicability. The identified points of debate and methodological weaknesses should be considered in any update or revision of the guidelines analyzed to improve the quality of their content and the applicability of their recommendations.
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Autores: Sapeta, P. (Autor de correspondencia); Centeno Cortés, Carlos; Belar Beitia, Alazne; et al.Revista: PALLIATIVE MEDICINEISSN: 0269-2163 Vol.36 N° 1 2022 págs. 15 - 29ResumenBackground: 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.
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Autores: Martínez García, Marina; Arantzamendi Solabarrieta, María; Centeno Cortés, CarlosRevista: MEDICINA PALIATIVAISSN: 1134-248X Vol.29 N° 1 2022 págs. 1 - 2ResumenEn 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).
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Autores: Sánchez Cárdenas, Miguel Antonio; Garralda Domezain, Eduardo (Autor de correspondencia); Van-Steijn, D.; et al.Revista: EASTERN MEDITERRANEAN HEALTH JOURNALISSN: 1687-1634 Vol.28 N° 8 2022 págs. 614 - 621ResumenThe increasing number of people experiencing serious health-related suffering due to severe illness is an urgent issue in the WHO Eastern Mediterranean Region (EMR). Although palliative care can mitigate much of this suffer-ing, its current development and indicators to measure progress remain unknown. Aims: To describe the development of the Atlas of palliative care in the Eastern Mediterranean Region 2021. Methods: Recently, the WHO Regional Office for the Eastern Mediterranean, together with a network of palliative care experts, identified the best indicators and collected data across the Region. These indicators include national palliative care strategies, number of specialized palliative care services per population, inclusion of palliative care in the health ben-efits package and national health budget, and the use of pain medication. These and other useful information form the Atlas of palliative care in the Eastern Mediterranean Region 2021. Results: The Atlas shows that provision of specialized palliative care services and pain medication in the Region is low. Several of the indicators suitable to the region are new and include the level of public awareness of palliative care, inclu-sion of palliative care in health insurance plans, availability of centres of excellence for palliative clinical care, and availa-bility of grants to finance palliative care research. Conclusion: Adoption of favourable policies, educational initiatives, and the involvement of stakeholders, represent an opportunity for future development of palliative care in the EMR.
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Autores: Aparicio, M. (Autor de correspondencia); Centeno Cortés, Carlos; Juliá, G.; et al.Revista: BMJ SUPPORTIVE & PALLIATIVE CAREISSN: 2045-435X Vol.12 N° E4 2022 págs. e562 - e569ResumenObjectives: To explore the expressions of gratitude (EoG) received from patients and relatives and their influence on palliative care professionals (PCPs). Methods: A national online survey was sent to a representative of PCPs of each service listed in the national directory of palliative care (PC) services (n=272) (ie, hospital PC support team, hospice, paediatrics, etc). The questionnaire was pilot tested with experts. It comprised three sections: the overall perspective of receiving gratitude in the service, the personal experience of its influence and sociodemographic questions. A mailing schedule was designed to enhance the response rate. Results: 186 representatives from all over Spain completed the questionnaire (68% response rate). 79% of service representatives reported that they almost always received EoG. These came mainly from families (93%). These EoG were very often put on display (84%) and shared with other health professionals (HPs) involved in care (45%). EoG evoked positive feelings in the team members. Based on their experience, respondents attributed different functions to these EoG: increased professional satisfaction (89%), a source of support in difficult times (89%), mood improvement, encouragement to continue and rewards for effort (88%). Services, where gratitude was more frequently received, were associated with PCPs who more frequently reported being proud of their work (p=0.039, Pearson's correlation test). Conclusions: Gratitude from patients and relatives was frequent and significant to those who work in PC. HPs considered that EoG offer multiple beneficial effects and also a protective role in their practice against distress and an increase in resilience skills.
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Autores: Sánchez Cárdenas, Miguel Antonio; Pourghazian, N.; Garralda Domezain, Eduardo (Autor de correspondencia); et al.Título: Palliative care in the Eastern Mediterranean: comparative analysis using specific indicatorsRevista: BMC PALLIATIVE CAREISSN: 1472-684X Vol.21 N° 1 2022 págs. 168ResumenBackground Monitoring the development of palliative care (PC) illustrates the capacity of health systems to respond to the needs of people experiencing serious health-related suffering. Aim To analyse comparatively the situation of PC in the countries of the Easter Mediterranean region using context-specific indicators. Method An online questionnaire with 15 context-specific PC indicators investigating service provision, use of medicines, policy, education, and vitality was designed. Authors Institution 1 nominated in-country experts to complete the survey. Data were analysed using a comparative description of indicators per domain and a multivariate analysis. Results In-country experts were identified in 17/22 countries. 12/17 contributed to the survey. In total, 117 specialized PC services were identified. Specialized services per population ranges from 0.09 per 100,000 inhabitants in Lebanon and Saudi Arabia, Qatar and Kuwait; to zero services in the Occupied Palestinian Territories. On average, opioid consumption was 2.40 mg/capita/year. National PC strategies were reported in nine countries. In six countries, PC is officially accredited either as a specialty or sub-specialty, and PC mandatory courses are implemented in 36% of medical schools and 46% of nursing schools. National PC associations were documented in six countries. A higher pattern of development was identified in Jordan, Kuwait, Saudi Arabia, Oman, Lebanon, Qatar. Conclusions Despite a higher development in the Arabian Peninsula, the region is characterised by a very low provision of specialized PC services and opioid consumption. Policy improvements represent an opportunity to improve access to PC.
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Autores: Sánchez Cárdenas, Miguel Antonio; Garralda Domezain, Eduardo (Autor de correspondencia); van Steijn, D.; et al.Revista: EASTERN MEDITERRANEAN HEALTH JOURNALISSN: 1020-3397 Vol.28 N° 8 2022 págs. 560 - 568ResumenBackground: The World Health Organization Office for the Eastern Mediterranean Region (WHO/EMRO), and the re-cently created palliative care experts network for the Eastern Mediterranean Region (EMR), decided to develop region -spe-cific indicators for monitoring national palliative care development in the Region. Aims: To identify relevant and feasible macro-indicators for palliative care development for the EMR. Methods: Palliative care experts from the EMR were nominated and invited to complete a 2-round Delphi study to rate macro-indicators from previous studies and propose new ones based on the EMR regional characteristics. All indicators were assessed according to regional relevance (R) and feasibility (F). A content validity index (CVI) was calculated. Indica-tors with CVI >= 0.7/1, and scoring >= 7/9 for the R and F averages were selected. Results: Twelve of the 22 countries in the Region were represented in the study. In the first round, 11 indicators were se-lected and 13 new ones proposed. In the second round, 15 indicators matched R, F and CVI criteria. Top-scored indicators were: existence of a current national palliative care strategy (R = 8, F = 8, CVI = 1); ratio of specialized services (for adults and children) in the country per population (R = 8, F = 7, CVI = 1); allocation of funds for palliative care in the national health budget by the Ministry of Health or equivalent government agency (R = 8, F = 6, CVI = 1); education for prequalifi-cation of doctors/nurses (R = 8, F = 8, CVI = 0.9); and availability of morphine and other strong opioids (R =8, F = 8, CVI= 0.9). Conclusion: A baseline set of 15 region-specific indicators for measuring the development of palliative care were validated by experts in the EMR.
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Autores: Pons Izquierdo, Juan José (Autor de correspondencia)Título: Los índices de sostenibilidad ambiental urbana como herramienta para el desarrollo de las ciudadesRevista: ARBOR-CIENCIA PENSAMIENTO Y CULTURAISSN: 0210-1963 Vol.198 N° 803 2022 págs. a645ResumenEn 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.
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Autores: Van der Elst, M. (Autor de correspondencia); Payne, S.; Arantzamendi Solabarrieta, María; et al.Revista: BMC PALLIATIVE CAREISSN: 1472-684X Vol.21 N° 1 2022 págs. 227ResumenBackground: Patients at the end-of-life may experience refractory symptoms of which pain, delirium, vomiting and dyspnea are the most frequent. Palliative sedation can be considered a last resort option to alleviate one or more refractory symptoms. There are only a limited number of (qualitative) studies exploring the experiences of relatives of sedated patients and their health care professionals (HCPs). The aims of this study protocol are: 1) to elicit the experiences of bereaved relatives and health care professionals of patients treated with palliative sedation and 2) to explore the understanding of the decision-making process to start palliative sedation across care settings in 5 European countries. Methods: This study protocol is part of the larger HORIZON 2020 Palliative Sedation project. Organisational case study methodology will be used to guide the study design. In total, 50 cases will be conducted in five European countries (10 per country). A case involves a semi-structured interview with a relative and an HCP closely involved in the care of a deceased patient who received some type of palliative sedation at the end-of-life. Relatives and health care professionals of deceased patients participating in a linked observational cohort study of sedated patients cared for in hospital wards, palliative care units and hospices will be recruited. The data will be analyzed using a framework analysis approach. The first full case will be analyzed by all researchers after being translated into English using a pre-prepared code book. Afterwards, bimonthly meetings will be organized to coordinate the data analysis. Discussion: The study aims to have a better understanding of the experiences of relatives and professional caregivers regarding palliative sedation and this within different settings and countries. Some limitations are: 1) the sensitivity of the topic may deter some relatives from participation, 2) since the data collection and analysis will be performed by at least 5 different researchers in 5 countries, some differences may occur which possibly makes it difficult to compare cases, but using a rigorous methodology will minimize this risk.
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Autores: Rodríguez, M. (Autor de correspondencia); Feng, A.; Menjívar, C.; et al.Revista: INTERNATIONAL JOURNAL OF MEDICAL INFORMATICSISSN: 1386-5056 Vol.166 2022 págs. 104857ResumenIntroduction: Family members significantly value the professional and humane support that medical teams pro-vide in the process of caring for patients with advanced diseases. Communication is currently changing, making it of interest to explore technology & rsquo;s possible influence on communication and on the care relationship. It re-mains unknown whether this can vary based on increased use of technology in patient care. Using communi-cation technologies can facilitate recognition of professional support through the expression of gratitude aimed at healthcare professionals. The objective here is to describe expressions of gratitude sent via WhatsApp messages by patients who receive treatment from a palliative care team and their relatives. Method: A generic qualitative methodology was used. The palliative care service studied used WhatsApp in the patient/family-professional relationship. A content analysis of 130 WhatsApp messages sent to the professionals and containing expressions of gratitude was carried out. Two researchers inductively performed the analysis. Analysis included aspects for which senders were most grateful and others, such as who the messages came from, whether they were reactive or spontaneous and to whom they were directed. Results: Almost all of the patients treated transmitted their gratitude via WhatsApp. It was also observed that family members were most grateful for features of the care received (i.e., affection, availability), the pro-fessional & rsquo;s support (i.e., accompaniment, comfort) and the professional & rsquo;s qualities (i.e., professionalism, kind-ness). They also appreciated symptom control and attempts to resignify loss; these aspects received the most expressions of gratitude in the messages. In turn, all the messages contain expressions of support for palliative care professionals, evidencing a patient/family-professional relationship. Conclusion: The use of communication technologies like WhatsApp can contribute to the perception of pro-fessionals & rsquo; availability and closeness and become a facilitator of expressions of gratitude that specify the aspects that family members most appreciate from the palliative care team, such as skills related to humane care and availability.
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Autores: Aparicio, M.; Centeno Cortés, Carlos; Robinson, C. A.; et al.Revista: QUALITATIVE HEALTH RESEARCHISSN: 1049-7323 Vol.32 N° 7 2022 págs. 1126 - 1138ResumenProviding palliative care can be both challenging and rewarding. It involves emotionally demanding work and yet research shows that burnout is lower than in other fields of healthcare. Spontaneous expressions of gratitude from patients and family members are not uncommon and are highly valued. This study explored the experience of Spanish palliative professionals who received expressions of gratitude from their patients and families. A phenomenological approach was used to better understand the role of receiving gratitude in participants¿ lives. Interviews were transcribed verbatim and a phenomenological approach to analysis was undertaken using macro-thematic and micro-thematic reflection. Two team members independently engaged in this reflection with an inductive approach. The analysis was shared and discussed at periodic meetings to identify the key themes and sub-themes of the gratitude experience. Ten palliative professionals were interviewed. Participants engaged in a process of recognizing, internalizing and treasuring the expressions of gratitude which they then used for reflection and growth. These expressions were a powerful and deeply meaningful resource that the palliative professionals revisited over time. Receiving expressions of gratitude invited a stronger sense of the value of one¿s self and one¿s work that was motivational and protective, particularly during challenging times.
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Autores: Centeno Cortés, Carlos; Rojí Buqueras, María del Rocío (Autor de correspondencia); Portela Tejedor, María Angustias; et al.Revista: BMJ SUPPORTIVE & PALLIATIVE CAREISSN: 2045-435X Vol.12 N° 2 2022 págs. 226 - 234ResumenIntroduction: Methylphenidate is a psychostimulant drug used to treat fatigue in patients with advanced cancer, for which there is no gold standard of treatment. Objective: To explore the efficacy of methylphenidate in the relief of fatigue in patients with advanced cancer. Materials and methods: A randomised double-blind placebo-controlled multicentre clinical trial, stratified according to the intensity of fatigue. The treatment was considered effective if the improvement in mean fatigue intensity between baseline values and day 6 was significantly higher in the methylphenidate group than in the placebo group. The responses were measured using the Edmonton Symptoms Assessment System (ESAS) and the Functional Assessment of Cancer Therapy-Fatigue (FACT-F) scales. Results: 35 patients received placebo and 42 patients received methylphenidate. The populations of both groups were homogeneous. Patients receiving methylphenidate did not exhibit statistically significant improvement of fatigue in comparison to patients receiving placebo (p=0.52). The mean improvement of fatigue (ESAS) on day 6 was -1.9 (±2.5) in the placebo group, and -2.3 (±2.6) in the methylphenidate group (p=0.52). The results obtained with the FACT-F were congruent with those obtained by the ESAS. The responses in patients with severe fatigue were -2.4 (±2.9) in the placebo group and -3.4 (±2.5) in the methylphenidate group; the difference was not statistically significant (p=0.3). Conclusion: Methylphenidate was not more efficient than placebo to treat cancer-related fatigue. Fatigue improved significantly after 3 days of treatment and was stabilised on day 6, both with placebo and methylphenidate. The side effects of methylphenidate were mild and infrequent. Trial registration number: EudraCT Registry (2008-002171-27).
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Autores: Arantzamendi Solabarrieta, María; Belar Beitia, Alazne (Autor de correspondencia); Payne, S.; et al.Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENTISSN: 0885-3924 Vol.61 N° 4 2021 págs. 831 - 844.e10ResumenContext: 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.
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Autores: Belar Beitia, Alazne (Autor de correspondencia); Arantzamendi Solabarrieta, María; Payne, S.; et al.Revista: PALLIATIVE MEDICINEISSN: 0269-2163 Vol.35 N° 2 2021 págs. 295 - 314ResumenBackground: 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.
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Autores: Martínez García, Marina (Autor de correspondencia)Revista: ESTUDIOS SOBRE EDUCACIONISSN: 1578-7001 N° 40 2021 págs. 228 - 229
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Autores: Nitola Mendoza, Lina María (Autor de correspondencia); Centeno Cortés, CarlosRevista: ANALES DEL SISTEMA SANITARIO DE NAVARRAISSN: 1137-6627 Vol.44 N° 1 2021 págs. 125 - 126
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Autores: Arias Casais, Natalia Sofía (Autor de correspondencia); Garralda Domezain, Eduardo; Sánchez Cárdenas, Miguel Antonio; et al.Revista: BMC PALLIATIVE CAREISSN: 1472-684X Vol.20 N° 1 2021 págs. 36ResumenBackground: 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.
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Autores: Pallotti, M. C. (Autor de correspondencia); López Fidalgo, Jesús Fernando; Centeno Cortés, Carlos; et al.Revista: JOURNAL OF PALLIATIVE MEDICINEISSN: 1096-6218 Vol.24 N° 7 2021 págs. 1061 - 1066ResumenObjective: 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.
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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-BEINGISSN: 1748-2623 Vol.16 N° 1 2021 págs. 1955441ResumenBackground 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.
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Autores: Trinchete Reigada, Carla Manuela; Centeno Cortés, Carlos; Gonçalves, E.; et al.Revista: INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTHISSN: 1660-4601 Vol.18 N° 10 2021 págs. 5348ResumenPC 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
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Autores: Durán Vian, Francisco (Autor de correspondencia); Pons Izquierdo, Juan José; Serrano Martínez, MiriamRevista: URBAN FORESTRY AND URBAN GREENINGISSN: 1618-8667 Vol.59 2021 págs. 127042ResumenSince 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.
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Autores: Sánchez Cárdenas, Miguel Antonio (Autor de correspondencia); Garralda Domezain, Eduardo; Benítez Sastoque, Edgar Ricardo; et al.Título: Palliative care coverage across European National Health Systems: proposal of a synthetic indicatorRevista: INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTHISSN: 1660-4601 Vol.18 N° 20 2021 págs. 10753ResumenBackground: 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>
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Autores: Seitz, K.; Deliens, L.; Cohen, J.; et al.Revista: REVISTA PANAMERICANA DE SALUD PUBLICA-PAN AMERICAN JOURNAL OF PUBLIC HEALTHISSN: 1020-4989 Vol.45 2021 págs. e149ResumenObjective. 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.
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Autores: Carvajal Valcárcel, Ana; Aradilla-Herrero, A. (Autor de correspondencia); Edo-Gual, M.; et al.Revista: NURSE EDUCATION TODAYISSN: 0260-6917 Vol.101 2021 págs. 104879ResumenEducation 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.
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Autores: Belar Beitia, Alazne; Arantzamendi Solabarrieta, María (Autor de correspondencia); Santesteban, Y.; et al.Revista: BMJ SUPPORTIVE & PALLIATIVE CAREISSN: 2045-435X Vol.11 N° 2 2021 págs. 156 - 162ResumenOBJECTIVE: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.
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Autores: Arantzamendi Solabarrieta, María (Autor de correspondencia); Sapeta, P.; Collete, N.; et al.Revista: PALLIATIVE MEDICINE REPORTSISSN: 2689-2820 Vol.2 N° 1 2021 págs. 34 - 39ResumenEmotional 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
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Autores: van Steijn, D. (Autor de correspondencia); Pons Izquierdo, Juan José; Garralda Domezain, Eduardo; et al.Revista: INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTHISSN: 1660-4601 Vol.18 N° 19 2021 págs. 10345ResumenBackground: 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.
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Autores: Sánchez Cárdenas, Miguel Antonio (Autor de correspondencia); León, M. X.; Rodríguez-Campos, L. F.; et al.Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENTISSN: 0885-3924 Vol.62 N° 2 2021 págs. 293 - 302ResumenContext. 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.
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Autores: Connor, S. R.; Centeno Cortés, Carlos; Garralda Domezain, Eduardo; et al.Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENTISSN: 0885-3924 Vol.61 N° 4 2021 págs. 812 - 816ResumenContext: 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.
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Autores: Arias Casais, Natalia Sofía; Centeno Cortés, Carlos (Autor de correspondencia)Revista: ANALES DEL SISTEMA SANITARIO DE NAVARRAISSN: 1137-6627 Vol.43 N° 1 2020 págs. 107 - 108
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Autores: Trinchete Reigada, Carla Manuela; Arantzamendi Solabarrieta, María; Centeno Cortés, CarlosRevista: BMC PALLIATIVE CAREISSN: 1472-684X Vol.19 N° 1 2020 págs. 88ResumenDespite 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.
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Autores: La Rosa Salas, Virginia; Arbea Moreno, Leire (Autor de correspondencia); Vidaurreta Fernández, Marta; et al.Revista: EDUCACION MEDICAISSN: 1575-1813 Vol.21 N° 6 2020 págs. 386 - 396ResumenLa 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.
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Autores: Arbea Moreno, Leire; Díaz González, Juan Antonio; Centeno Cortés, Carlos; et al.Revista: EDUCACION MEDICAISSN: 1575-1813 Vol.21 N° 3 2020 págs. 207-211
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Autores: Arantzamendi Solabarrieta, María (Autor de correspondencia); García Rueda, Noelia; Carvajal Valcárcel, Ana; et al.Revista: QUALITATIVE HEALTH RESEARCHISSN: 1049-7323 Vol.30 N° 8 2020 págs. 1143 - 1155ResumenAbstract 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.
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Autores: Clark, D.; Baur, N.; Clelland, D.; et al.Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENTISSN: 0885-3924 Vol.59 N° 4 2020 págs. 794-807.e4ResumenContext: 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.
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Autores: Radbruch, L. (Autor de correspondencia); De Lima, L. ; Knaul, F.; et al.Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENTISSN: 0885-3924 Vol.60 N° 4 2020 págs. 754 - 764ResumenContext. 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.
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Autores: Pergolizzi, D.; Crespo, I.; Balaguer, A.; et al.Revista: BMJ OPENISSN: 2044-6055 Vol.10 N° 2 2020 págs. e034413ResumenWe 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.
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Autores: Zambrano, S. C. (Autor de correspondencia); Centeno Cortés, Carlos; Larkin, P. J.; et al.Revista: JOURNAL OF PALLIATIVE MEDICINEISSN: 1096-6218 Vol.23 N° 2 2020 págs. 184 - 191ResumenBackground: 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.
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Autores: Pallotti, M. C.; López Fidalgo, Jesús Fernando; Biasco, G.; et al.Revista: JOURNAL OF PALLIATIVE MEDICINEISSN: 1096-6218 Vol.23 N° 9 2020 págs. 1227 - 1232ResumenBackground: 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.
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Autores: Arias Casais, Natalia Sofía; Garralda Domezain, Eduardo; Pons Izquierdo, Juan José; et al.Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENTISSN: 0885-3924 Vol.60 N° 4 2020 págs. 746 - 753ResumenContext. 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.
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Autores: Tobalina Pulido, L.; Pons Izquierdo, Juan JoséLibro: Educar para transformar: Innovación pedagógica, calidad y TIC en contextos formativosISSN: 978-84-1122-469-7 2023 págs. 3475 - 3480ResumenLa utilización de los story maps en el ámbito de la arqueología está experimentando un fuerte desarrollo en los últimos años, sin embargo, no parece que todavía haya alcanzado el máximo de sus posibilidades, habida cuenta de las ventajas que podría tener para su uso en este campo. El objetivo que nos planteamos con este trabajo es conocer qué repercusión está teniendo el empleo de story maps sobre arqueología en la literatura científica y, a través de los artículos que abordan esas experiencias, analizar las características y contenidos de los que se han desarrollado dentro de este ámbito.
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Autores: Pons Izquierdo, Juan JoséLibro: El papel del territorio y de las políticas territoriales en la Estrategia de Recuperación, Trasformación y ResilienciaISSN: 978-84-9133-477-4 2022 págs. 507 - 519ResumenLa cohesión territorial es un objetivo político fundamental a muy diversas escalas, desde la europea a la regional. Este trabajo explica las bases conceptuales y el desarrollo del Fondo de Cohesión Territorial de Navarra, un nuevo instrumento financiero destinado a reforzar el papel tractor que juegan determinados municipios en su entorno y de cuya potenciación se espera un mayor equilibrio territorial.
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Autores: Centeno Cortés, Carlos; Payne, S.; Garralda Domezain, EduardoLibro: Oxford textbook of Palliative MedicineISSN: 9780198821328 2021 págs. 3 - 13
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Autores: Pons Izquierdo, Juan JoséLibro: 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 diversidadISSN: 978-84-1377-591-3 2021 págs. 757 - 775ResumenEl 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.
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Autores: Clark, D.; Centeno Cortés, Carlos; Clelland, D.; et al.Libro: Global atlas of palliative careISSN: 978-0-9928277-2-4 2020 págs. 45 - 58ResumenThe 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.
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Autores: Trinchete Reigada, Carla Manuela; Pelttari, L.; Radbruch, L.; et al.Libro: EAPC Atlas of palliative care in Europe 2019ISSN: 9789463883443 2019 págs. 77 - 80
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Autores: Arantzamendi Solabarrieta, María; Belar Beitia, Alazne; Rojí Buqueras, María del RocíoTítulo: End of life careLibro: Textbook of Palliative CareISSN: 978-3-319-77738-2 2019 págs. 1 - 24ResumenTextbook 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.
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Autores: Trinchete Reigada, Carla Manuela; Froggatt, K.; Van-den-Block, L.Libro: EAPC Atlas of palliative care in Europe 2019ISSN: 9789463883443 2019 págs. 73 - 76
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Autores: Arantzamendi Solabarrieta, María (Editor); Crespo Sesmero, Mariano Juan (Editor)ISSN: 978-84-313-3804-6 2022ResumenSECCIÓN 1: LOS CUIDADOS PALIATIVOS Y LA GRATITUD ........................................ Capítulo I: La gratitud en cuidados paliativos (Carlos Centeno) ................................ Capítulo II: Matices de la gratitud en cuidados paliativos (María Arantzamendi) ..... Capítulo III: Cultura, gratitud y cuidados paliativos. Una reflexión personal (José Pereira) ............................................................................................................... SECCIÓN 2: LA CONCEPTUALIZACIÓN DE LA GRATITUD .......................................... Capítulo IV: La gratitud y su etimología (Alicia Hernando) ....................................... Capítulo V: ¿Qué tipo de vivencia es el agradecimiento? (Josef Seifert) ................... Capítulo VI: Agradecimiento: la posibilidad de reconocer el bien (Mariana Riojas) .. SECCIÓN 3: EL OBJETO DE LA GRATITUD ............................................................... Capítulo VII: Sobre el objeto del agradecimiento (Mariano Crespo) ......................... Capítulo VIII: Gratitud, don y cuidado interpersonal (Anthony Steinbock) ............... Capítulo IX: La gratitud en cuidados paliativos: qué se agradece. Una aproximación clínica y vivencial. (Enric Benito) ..................................................................... SECCIÓN 4: EL SUJETO DE LA GRATITUD ................................................................ Capítulo X: Factores psicológicos favorecedores o inhibidores de la gratitud. (Sergio Sánchez-Migallón) ......................................................................................... Capítulo XI: Obstáculos y facilitadores del agradecimiento. (Paulina Taboada) ........ Capítulo XII: La experiencia de la gratitud de un clínico junto a las personas al final de su vida (Julio Gómez) ................................................................................. 8 Gratitud y cuidados paliativos SECCIÓN 5: EL IMPACTO DEL AGRADECIMIENTO .................................................... Capítulo XIV: El impacto del agradecimiento (María Aparicio) ................................. Capítulo XV: La cultura de la gratitud en cuanto cuidado de la vulnerabilidad humana (Luca Valera) .............................................................................................. Capítulo XVI: Gratitud en los pacientes de cuidados paliativos y sus familiares: ¿dónde estamos ahora? (Mathieu Bernard) ............................................................ REFERENCIAS BIBLIOGRÁFICAS
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Autores: Pastrana, T.; De-Lima, L.; Sánchez Cárdenas, Miguel Antonio; et al.ISSN: 978-0-9989787-4-1 2021
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Autores: Bouësseau, M. C. (Coordinador); Sánchez Cárdenas, Miguel Antonio; Garralda Domezain, Eduardo; et al.ISSN: 978-92-4-003336-8 2021ResumenAssessing 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.
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Autores: Arias-Casais, N.; Garralda Domezain, Eduardo; Rhee, J. Y.; et al.ISSN: 9789463883443 2019
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Autores: Arias-Casais, N.; Garralda Domezain, Eduardo; López Fidalgo, Jesús Fernando; et al.ISSN: 978-0-9989787-1-0 2019ResumenList 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.
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Autores: Centeno Cortés, Carlos; Sitte, T.; de Lima, L.; et al.ISSN: 978-88-266-0295-0 2019
Proyectos desde 2018
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Título: "Del desacuerdo a la mediación: detección y análisis de patrones multimodales en la interacción espontánea y en prácticas institucionalizadas de mediación "Código de expediente: PID2022-143052NB-I00Investigador principal: INES OLZA MORENO.Financiador: AGENCIA ESTATAL DE INVESTIGACIONConvocatoria: 2022 AEI Proyectos de Generación del ConocimientoFecha de inicio: 01-09-2023Fecha fin: 31-08-2027Importe concedido: 57.250,00€Otros fondos: Fondos FEDER
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Título: Patient Dignity Question como intervención para el alivio del sufrimiento: Estudio de metodología mixta en pacientes con enfermedad avanzadaCódigo de expediente: PI22/01504Investigador principal: MARIA ARANTZAMENDI SOLABARRIETA, ALAZNE BELAR BEITIA.Financiador: INSTITUTO DE SALUD CARLOS IIIConvocatoria: 2022 AES Proyectos de investigaciónFecha de inicio: 01-01-2023Fecha fin: 31-12-2025Importe concedido: 10.890,00€Otros fondos: Fondos FEDER
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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: PI20/01644Investigador principal: ANA CARVAJAL VALCARCEL, ANA CARVAJAL VALCARCEL.Financiador: INSTITUTO DE SALUD CARLOS IIIConvocatoria: 2020 AES Proyectos de investigaciónFecha de inicio: 01-01-2021Fecha fin: 31-12-2023Importe concedido: 58.080,00€Otros fondos: Fondos FEDER
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Título: Dignidad y deseos de morir en pacientes con enfermedad avanzada: estudio de factores asociados y de las vivencias de los pacientes y profesionalesCódigo de expediente: PI18/01703Investigador principal: CARLOS CENTENO CORTES, CARLOS CENTENO CORTES.Financiador: INSTITUTO DE SALUD CARLOS IIIConvocatoria: AES2018 PIFecha de inicio: 01-01-2019Fecha fin: 31-12-2022Importe concedido: 20.570,00€Otros fondos: Fondos FEDER
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Título: Patrones multimodales de representación del tiempoCódigo de expediente: FFI2015-70876-PInvestigador principal: CRISTOBAL PAGAN CANOVAS, INES OLZA MORENO, INES OLZA MORENO, CRISTOBAL PAGAN CANOVAS.Financiador: MINISTERIO DE CIENCIA E INNOVACIÓNConvocatoria: 2015 MINECO EXCELENCIA. PROYECTOS I+DFecha de inicio: 01-01-2016Fecha fin: 31-12-2018Importe concedido: 26.015,00€Otros fondos: Fondos FEDER
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Título: PALCYCLES PALliative Care Yields Cancer welLbEing SupportCódigo de expediente:Investigador principal: MARIA ARANTZAMENDI SOLABARRIETA MARIA ARANTZAMENDI SOLABARRIETAFinanciador: COMISIÓN EUROPEAConvocatoria: HORIZON-HLTH-2021-DISEASE-04Fecha de inicio: 01-09-2022Fecha fin: 31-08-2027Importe concedido: 400.500,00€Otros fondos: -
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Título: RESPACC - Research for all palliative care clinicansCódigo de expediente: 2020-1-RO01-KA202-080128Investigador principal: CARLOS CENTENO CORTES CARLOS CENTENO CORTESFinanciador: COMISIÓN EUROPEAConvocatoria: KA202-Strategic partnerships for vocational education and trainingFecha de inicio: 01-12-2020Fecha fin: 30-11-2022Importe concedido: 47.478,00€Otros fondos: -
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Título: Palliative sedationCódigo de expediente: 825700Investigador principal: CARLOS CENTENO CORTES CARLOS CENTENO CORTESFinanciador: COMISIÓN EUROPEA IGC INTERNATIONAL GROWTH CENTREConvocatoria: H2020-SC1-BHC-23-2018Fecha de inicio: 01-01-2019Fecha fin: 31-12-2023Importe concedido: 607.125,00€Otros fondos: -
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Título: ARTE Y TRANSFORMACIÓN SOCIALInvestigador principal: RICARDO ISIDRO PIÑERO MORAL, RICARDO ISIDRO PIÑERO MORALFinanciador: UNIVERSIDAD DE NAVARRAConvocatoria: 2020 Convocatoria PIUNA, 2021 Convocatoria PIUNAFecha de inicio: 01-09-2020Fecha fin: 31-08-2022Importe concedido: 21.500,00€