Grupos Investigadores

Líneas de Investigación

  • Investigación aplicada sobre el mensaje que los cuidados paliativos transmiten a la sociedad y a los profesionales de ls Salud
  • Investigación Básica o fundamental sobre los valores del cuidado en la enfermedad avanzada y el final de la vida
  • Investigación clínica en medicina de soporte y control de síntomas
  • Investigación descriptiva para la documentación del desarrollo global de los cuidados paliativos en el mundo

Palabras Clave

  • Desarrollo global
  • Mensaje de cuidados paliativos
  • Valores intangibles

Publicaciones Científicas desde 2018

  • Autores: Soriano, V. (Autor de correspondencia); Montero Sánchez del Corral, Borja
    Revista: LINACRE QUARTERLY
    ISSN: 0024-3639 Vol.91 N° 1 2024 págs. 29 - 38
    Resumen
    The College of Physicians of Madrid organized an open debate on conscientious objection (CO) in the medical profession on September 14, 2022. We summarize here the main arguments discussed. CO is defined as the right to raise exceptions to the performance of legal duties when they involve a contravention of personal convictions, whether religious, moral, or philosophical. It is not insubordination. Some authors contend that any decision by elected authorities should be uniformly followed by all citizens, physicians not being an exception. However, suppressing the ethical dimension of medical care may have an unacceptable cost with harm to physicians, their patients, and ultimately society. Health professionals are not blind instruments or mere executors. The practice of medicine must follow the aim of the profession, namely the pursuit of the patient's good. Medical care must conform to medical ethics, which was first defined twenty-five centuries ago in the Hippocratic oath, and summarized with the triad of precepts cure, relief, accompaniment. Since then and particularly in light of the Nuremberg trials, most medical declarations have highlighted the duty of defending human life and the importance of CO. In modern societies, there may be medical services that are not health care, even if they are legal. Then, which comes first law or ethics? Ultimately, CO is the tool that protects the freedom of the physician to refuse to perform actions that go against the values of medical ethics. With respect to the recent Spanish laws on abortion, euthanasia, and sex re-assignment of minors, if administrators want to know who is available for a health service that raises issues of conformity to medical ethics, requesting a list of volunteers is preferable to producing an objector list. Asking for registration of objectors goes against the right to privacy and is coercive, intrusive, and abusive.
  • Autores: Belar Beitia, Alazne; Arantzamendi Solabarrieta, María (Autor de correspondencia); Larkin, P.; et al.
    Revista: BMC PALLIATIVE CARE
    ISSN: 1472-684X Vol.23 N° 1 2024 págs. 57
    Resumen
    The experience of Wish to Die is common in patients living with Advanced Disease. It has been studied worldwide and qualitative studies have contributed to the understanding of the complexity of the phenomenon of the WTD but a deeper understanding on the individual¿s views is still needed. The objective of this study was to identify common characteristics of the experience of wish to die in advanced disease. Methods. A phenomenological study was carried out with multicenter participation of patients with advanced disease who had expressed their wish to die to health professionals. Semi-structured interviews were employed to obtain an in-depth perspective of each patient¿s lived experience. A phenomenological analysis of the data collected was performed to describe and explore the characteristic aspects of the phenomenon under study. Results. Fourteen patients with advanced disease were interviewed. Most of them had cancer. In the analysis of the patients; accounts of their experiences, three common characteristics were identified: a) experiencing a state of transience; b) the attempt to reconnect with oneself; and c) additional disease-related aspects that influence the wish to die. Patients expressed the need for a safe space to address the wish to die and the importance of receiving care that considers both being and doing. Conclusions. Patients with advanced disease and wish to die experience a state of transience where the patient lives and ephemeral state of existence. Interventions focused on reinforcing the intrinsic value of the individual emerge as essential components of a compassionate accompaniment of those facing the wish to die.
  • Autores: Stone, P. (Autor de correspondencia); Candelmi, Diego Ezequiel; Kandola, K.; et al.
    Revista: CURRENT TREATMENT OPTIONS IN ONCOLOGY
    ISSN: 1527-2729 Vol.24 N° 2 2023 págs. 93 - 107
    Resumen
    Opinion 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.
  • Autores: Rijpstra, M. (Autor de correspondencia); Vissers, K.; Centeno Cortés, Carlos; et al.
    Revista: BMC PALLIATIVE CARE
    ISSN: 1472-684X Vol.22 N° 1 2023 págs. 8
    Resumen
    Background 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.
  • Autores: Urrizola Martínez, Amaia (Autor de correspondencia); Santiago, R.; Arbea Moreno, Leire
    Revista: MEDICAL TEACHER
    ISSN: 0142-159X Vol.45 N° 4 2023 págs. 412 - 418
    Resumen
    Background 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.
  • Autores: Garralda Domezain, Eduardo (Autor de correspondencia); Busa, C.; Pozsgai, E.; et al.
    Revista: EUROPEAN JOURNAL OF PUBLIC HEALTH
    ISSN: 1101-1262 Vol.33 N° 1 2023 págs. 35 - 41
    Resumen
    Background 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.
  • Autores: Arantzamendi Solabarrieta, María; Aparicio, M.; Centeno Cortés, Carlos; et al.
    Revista: PALLIATIVE CARE AND SOCIAL PRACTICE
    ISSN: 2632-3524 Vol.17 2023 págs. 26323524221147538
    Resumen
    Background: 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.
  • Autores: Goni-Fuste, B.; Pergolizzi, D.; Monforte-Royo, C. (Autor de correspondencia); et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN: 0885-3924 Vol.66 N° 4 2023 págs. 361 - 369.e6
    Resumen
    Context. Ensuring patient-centered palliative care requires a comprehensive assessment of needs beginning in the initial encounter. However, there is no generally accepted guide for carrying out this multidimensional needs assessment as a first step in palliative intervention. Objectives. To develop an expert panel-endorsed interview guide that would enable proactive and systematic Multidimensional needs Assessment in the Palliative care initial encounter (MAP). Methods. A preliminary version of the MAP guide was drafted based on a published literature review, published semistructured interviews with 20 patients, 20 family carers, and 20 palliative care professionals, and a nominal group process with palliative care professionals and a representative of the national patient's association. Consensus regarding its content was obtained through a modified Delphi process involving a panel of palliative care physicians from across Spain. Results. The published systematic literature review and qualitative study resulted in the identification of 55 needs, which were sorted and grouped by the nominal group. Following the Delphi process, the list of needs was reduced to 47, linked to six domains: Clinical history and medical conditions (n = 8), Physical symptoms (n = 17), Functional and cognitive status (n = 4), Psycho-emotional symptoms (n = 5), Social issues (n = 8), and Spiritual and existential concerns (n = 5). Conclusion. MAP is an expert panel-endorsed semi-structured clinical interview guide for the comprehensive, systematic, and proactive initial assessment to efficiently assess multiple domains while adjusting to the needs of each patient. A future study will assess the feasibility of using the MAP guide within the timeframe of the palliative care initial encounter. J Pain Symptom Manage 2023;66:361-369. (c) 2023 The Authors. Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
  • Autores: Cibula, D. (Autor de correspondencia); Raspollini, M. R.; Planchamp, F.; et al.
    Revista: VIRCHOWS ARCHIV
    ISSN: 0945-6317 Vol.482 N° 6 2023 págs. 935 - 966
    Resumen
    In 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.
  • Autores: Urrizola Martínez, Amaia (Autor de correspondencia); Santiago, R.; Gea Sánchez, Alfredo; et al.
    Revista: BMC MEDICAL EDUCATION
    ISSN: 1472-6920 Vol.23 N° 1 2023 págs. 19
    Resumen
    Background 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.
  • Autores: Cibula, D. (Autor de correspondencia); Raspollini, M. R.; Centeno Cortés, Carlos; et al.
    Revista: RADIOTHERAPY AND ONCOLOGY
    ISSN: 0167-8140 Vol.184 2023 págs. 109682
    Resumen
    In 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 evidencebased 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. & COPY; 2023 ESGO, ESTRO, ESP. Published by Elsevier B.V. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/) Radiotherapy and Oncology 184 (2023) 109682 This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
  • Autores: Predoiu, O.; Tsekezogiou, A. J.; Payne, S.; et al.
    Revista: PALIATIA- JOURNAL OF PALIATIVE CARE
    ISSN: 1844-7058 Vol.16 N° 2 2023 págs. 5 - 10
    Resumen
    Abstract 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
  • Autores: Lamfre, L. (Autor de correspondencia); Hasdeu, S.; Coller, M.; et al.
    Revista: CADERNOS DE SAUDE PUBLICA
    ISSN: 0102-311X Vol.39 N° 2 2023 págs. e00081822
    Resumen
    Home palliative care services of terminal patients may associate home care preferences with desir-able health outcomes. This study aimed to evalu-ate the cost-effectiveness of home palliative care of cancer patients in the last year of life in the pub-lic health subsector in a province of Argentina. A cost-effectiveness Markov model was developed from a social and the health funder's perspective in order to reflect the reality of home palliative care at the local level compared with usual care. Direct costs to the health system and indirect costs of unpaid informal care were estimated based on local information. Palliative care increased the likelihood of patients dying at home by 10.32% compared with usual care, with annual savings of USD 750 and USD 1,012 per patient, respectively, from both the social and the funder's perspec-tive in the public health subsector in Rio Negro. From both the social and financial perspective, the strategy to implement organized care services was more effective and lower-cost, measured by the percentage of patients who died at home. From a social perspective, the main cost inducer was the formal care provided by families, but from the funder's perspective, it refers to the salaries of the health team.
  • Autores: Tripodoro, Vilma Adriana (Autor de correspondencia); Di Gennaro, S.; Fila, J.; et al.
    Revista: ZEITSCHRIFT FUR EVIDENZ, FORTBILDUNG UND QUALITAT IM GESUNDHEITSWESEN
    ISSN: 1865-9217 Vol.180 2023 págs. 50 - 55
    Resumen
    The WHO Concept Model of Palliative Care emphasises empowering people and communities with Advance Care Planning (ACP). In Latin America, a more relational approach involving family members is suited to ACP. Improvements in doctor-patient-family relationships are needed. Policy efforts have been made to foster ACP in Argentina's healthcare system, but implementation barriers include a need for more communication skills and coordination between healthcare providers. The Shared Care Planning Group Argentina aims to promote ACP through research and training programs. It has sensitised and trained 236 healthcare providers in short courses to introduce basic information and skills. However, there needs to be specific documentation for ACP in Argentina. Research found obstacles to ACP implementation, such as the inability to converse with patients and the lack of coordination between healthcare teams. A new project will assess the self-efficacy of healthcare professionals who assist patients with Sclerosis Lateral Amyotrophic in ACP and evaluate a specific training program. Patient and public involvement in ACP remains limited in Argentina, with paternalistic medical culture and a need for more awareness and training among healthcare professionals as significant barriers. Collaborative research projects with Spain and Ecuador aim to train healthcare professionals and evaluate ACP implementation in other Latin American countries.
  • Autores: Salas Moreira, Ana Paula; Gómez Baceiredo, Beatriz; Centeno Cortés, Carlos; et al.
    Revista: PLOS ONE
    ISSN: 1932-6203 Vol.18 N° 6 2023 págs. e0286343
    Resumen
    Introduction: 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.
  • Autores: Garralda Domezain, Eduardo; Benítez Sastoque, Edgar Ricardo (Autor de correspondencia); Montero Calero, Alvaro; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN: 1096-6218 Vol.26 N° 12 2023 págs. 1709 - 1714
    Resumen
    Background: Despite a steady increase in palliative care (PC)-oriented research, authentic engagement of stakeholders with findings needs to be more used.Objective: This study aimed to explore how ATLANTES Observatory can effectively promote the global development of PC by engaging with stakeholders and addressing their specific needs and priorities.Design: An international e-survey among Observatory collaborators explored key audiences, best ways to reach them, and priority activities. Answers were evaluated according to respondents' roles (Academics, Policymakers, and clinicians) and toward impact on diverse key stakeholders. Correlation between respondents' roles with select products was studied.Results: One hundred fifty-five collaborators participated. The collaborators suggested addressing ATLANTES Global Observatory's activities to policymakers (5,6/7), professional associations (5,2/7), and health care practitioners (4,4/7). Preferred activity to reach all stakeholders is the use of websites and social networks, while particularly for policymakers, academics, and general practitioners, the conduction of atlases and articles stand out.Conclusions: Our study emphasizes prioritizing policymakers and all health care practitioners as key stakeholders in promoting PC and driving global development and integration into health care systems. By leveraging innovative web tools and social networks for dissemination, our aim is to extend the reach of our efforts beyond the PC community.
  • Autores: Martucci, G. (Autor de correspondencia); Pereira, J.; Busa, C.; et al.
    Revista: PALLIATIVE CARE AND SOCIAL PRACTICE
    ISSN: 2632-3524 Vol.17 2023
    Resumen
    Background:Although training in palliative care (PC) is increasingly frequent in medical schools, some barriers still hamper the design and implementation of effective educational programs. Information Technology-based distance learning (IT-DL) might contribute to the development of appropriate knowledge on PC in students, but it is still not clear how to best develop such curricula and how to deliver methodologically sound learning activities, allowing students to work on the complex skills required in PC.Objectives:To describe how internet-based education can be used in undergraduate medical PC education, in terms of realist theorization.Design:A realist review was carried out, producing a framework - or, in the terms of a realist review, a theory - focusing on finding out what might work, for whom, and in which circumstances, describing these variables in terms of Contexts, Mechanism, and Outcomes.Methods:An international group of experts of PC education assessed the relevance and pertinence of 256 articles resulting from systematic retrieval of literature and expert suggestions.Results:The final synthesis, mainly informed by the 43 articles rated as most relevant, is presented in propositions regarding three groups: (1) Educational theory, where (a) Cognitivism (learning as an increase in knowledge); (b) Constructivism (learning as a social, cultural, and negotiated process); and (c) Behaviorism (learning as an observable modification of behaviors) appear to be consistent with the learning outcome of PC. (2) Desired effect of the technology, suggesting the simple use of IT-DL is not an additional value per se, as it should overcome objective limits set for face-to-face activities. (3) Contextualization and duration of the curricular activity, suggesting PC training activities should be included in an organic and legitimate way in the overall curriculum.Conclusion:This field is expected to experience huge growth soon, and present and future research could use a realist approach like the one here presented to make sense of all the different variables involved.
  • Autores: Cibula, D. (Autor de correspondencia); Raspollini, M. R.; Planchamp, F.; et al.
    Revista: INTERNATIONAL JOURNAL OF GYNECOLOGICAL CANCER
    ISSN: 1048-891X Vol.33 N° 5 2023 págs. 649 - 666
    Resumen
    In 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.
  • Autores: Surges, S. M. (Autor de correspondencia); Garralda Domezain, Eduardo; Jaspers, B.; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN: 1096-6218 Vol.25 N° 11 2022 págs. 1721 - 1731
    Resumen
    In 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.
  • Autores: Belar Beitia, Alazne; Arantzamendi Solabarrieta, María (Autor de correspondencia); Menten, J.; et al.
    Revista: CANCERS
    ISSN: 2072-6694 Vol.14 N° 2 2022 págs. 301
    Resumen
    Simple Summary The involvement of patients in decision making about their healthcare plans is being emphasized, but little is known how the decision making on palliative sedation is conducted and who are involved in. The aim of this study is to understand how decisions about palliative sedation are taken. The results may help to understand the reality of this decision-making considering when and by whom the decision-making process is initiated, patient involvement, family involvement and healthcare involvement. This may contribute to identifying aspects that should be improved. Background. The involvement of patients in decision making about their healthcare plans is being emphasized. In the context of palliative sedation, it is unclear how these decisions are made and who are involved in. The aim of the study is to understand how this decision-making is taken. Method. Information from a systematic review on clinical aspects of palliative sedation prospective studies were included. PubMed, CINAHL, Cochrane, MEDLINE, and EMBASE were searched (January 2014-December 2019). Data extraction and analysis regarded: (a) When and by whom the decision-making process is initiated; (b) patient involvement; (c) family involvement and (d) healthcare involvement. Results. Data about decision making were reported in 8/10 included articles. Palliative sedation was reported in 1137 patients (only 16 of them were non-cancer). Palliative sedation was introduced by the palliative care team during the disease process, at admission, or when patients experienced refractory symptoms. Only two studies explicitly mentioned the involvement of patients in decision making. Co-decision between families and the regular health care professionals was usual, and the health care professionals involved had been working in palliative care services. Conclusion. Patient participation in decision making appeared to be compromised by limited physical or cognitive capacity and family participation is described. The possibility of palliative sedation should be discussed earlier in the disease process.
  • Autores: Sapeta, P. (Autor de correspondencia); Centeno Cortés, Carlos; Belar Beitia, Alazne; et al.
    Revista: PALLIATIVE MEDICINE
    ISSN: 0269-2163 Vol.36 N° 1 2022 págs. 15 - 29
    Resumen
    Background: Coping is essential to manage palliative care professionals' challenges. The focus has been on the effects of coping mechanism; however, little is known about coping itself in palliative care. Aim: To synthesise evidence of coping strategies in palliative care professionals, and how different strategies play roles over time. Design: Systematically conducted integrative review. Data sources: PubMed; CINAHL; Medline; PsycINFO and B-ON were searched (1996-2021) combining 'coping' AND 'palliative care'. A predefined data extraction sheet was developed to report data. Two researchers performed constant comparative analysis using Nvivo(R). Results: Thirty-one studies were included. Four main strategies with recurrent reference to time were found: (a) proactive coping, involving activities to achieve self-confidence and control situations and emotions; (b) self-care based coping, including self-protection and self-awareness activities, with behavioural disconnection; (c) self-transformation coping, involving activities to accept limits; and (d) encountering deep professional meaning, is a coping mechanism based on meaning, frequently considering the deepest meaning of work. The dynamic and influencing factors were training, team interaction, professional motivation and family. They were usually protective factors, though sometimes they represented risk factors. The emotional burden associated with healthcare and systemic stressors were always risk factors. An explanatory model describes a complex and dynamic process, in which everyday strategies and more introspective strategies are combined. Conclusions: The model showed a process of adaptation and learning to persevere in palliative care. It changes over time under factors and strategies, and evolves in a personal and professional transformation, parallel to the working life. It would be worth assessing coping in healthcare professionals who chose to leave palliative care and to investigate the reasons they did so and their coping mechanisms.
  • Autores: Martínez García, Marina; Arantzamendi Solabarrieta, María; Centeno Cortés, Carlos
    Revista: MEDICINA PALIATIVA
    ISSN: 1134-248X Vol.29 N° 1 2022 págs. 1 - 2
    Resumen
    En este contexto, Erasmus + ha promovido un proyecto (RESPACC 2020-1-R001-KA202-080128) en el que participan cuatro países: Rumanía (Hospice Casa Sperantei y la Universidad de Transilvania), España (Universidad de Navarra), Grecia (Hospice Galillee) y Bélgica (European Association for Palliative Care EAPC). El proyecto ¿Competencias de Investigación para Clínicos de Cuidados Paliativos¿ (RESPACC) hace referencia a Research (Investigación) Expertise (Experiencia), Selfdevelopment (Autodesarrollo) Palliative Care (Cuidados Paliativos), Attitude (Actitud), Communication (Comunicación) y Competence (Competencia).
  • Autores: Sánchez Cárdenas, Miguel Antonio; Pourghazian, N.; Garralda Domezain, Eduardo (Autor de correspondencia); et al.
    Revista: BMC PALLIATIVE CARE
    ISSN: 1472-684X Vol.21 N° 1 2022 págs. 168
    Resumen
    Background 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.
  • Autores: Aparicio, M. (Autor de correspondencia); Centeno Cortés, Carlos; Juliá, G.; et al.
    Revista: BMJ SUPPORTIVE & PALLIATIVE CARE
    ISSN: 2045-435X Vol.12 N° E4 2022 págs. e562 - e569
    Resumen
    Objectives: 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.
  • Autores: Centeno Cortés, Carlos; Rojí Buqueras, María del Rocío (Autor de correspondencia); Portela Tejedor, María Angustias; et al.
    Revista: BMJ SUPPORTIVE & PALLIATIVE CARE
    ISSN: 2045-435X Vol.12 N° 2 2022 págs. 226 - 234
    Resumen
    Introduction: 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).
  • Autores: Van der Elst, M. (Autor de correspondencia); Payne, S.; Arantzamendi Solabarrieta, María; et al.
    Revista: BMC PALLIATIVE CARE
    ISSN: 1472-684X Vol.21 N° 1 2022 págs. 227
    Resumen
    Background: 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.
  • Autores: Pons Izquierdo, Juan José (Autor de correspondencia)
    Revista: ARBOR-CIENCIA PENSAMIENTO Y CULTURA
    ISSN: 0210-1963 Vol.198 N° 803 2022 págs. a645
    Resumen
    En el siglo XXI las acogen, por primera vez en la historia, más de la mitad de la población mundial y generan aproximadamente el 80% del PIB del planeta. Además, la evolución registrada durante las últimas décadas hace prever, según todos los indicadores, que el papel central que desde antiguo han jugado las ciudades se va a ver reforzado en el futuro. No en vano, se trata de verdaderos epicentros catalizadores del desarrollo económico y social contemporáneo. Además, la visión que se tenía sobre ellas ha ido cambiando progresivamente y, cada vez más, tienden a ser vistas como impulsoras del desarrollo sostenible global. Sin embargo, no por ello dejan de tener puntos oscuros, ya que es también en los entornos urbanos donde los principales problemas de nuestro tiempo (pobreza, violencia, contaminación, etc.) alcanzan situaciones límite y se ponen de manifiesto los contrastes sociales y económicos más dramáticos. Entre esas cuestiones se encuentra la calidad ambiental de los espacios urbanos, un factor absolutamente crítico en la actualidad, tanto por el número de personas que habita en las ciudades (y que, por tanto, están expuestas a sus condiciones), como por la repercusión que estas tienen en el conjunto del medio ambiente del planeta: la batalla de la sostenibilidad se ganará o se perderá en las ciudades. El estudio de los índices que sirven para analizar la sostenibilidad de las ciudades es el objeto de este trabajo.
  • Autores: Aparicio, M.; Centeno Cortés, Carlos; Robinson, C. A.; et al.
    Revista: QUALITATIVE HEALTH RESEARCH
    ISSN: 1049-7323 Vol.32 N° 7 2022 págs. 1126 - 1138
    Resumen
    Providing 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.
  • Autores: Sánchez Cárdenas, Miguel Antonio; Garralda Domezain, Eduardo (Autor de correspondencia); van Steijn, D.; et al.
    Revista: EASTERN MEDITERRANEAN HEALTH JOURNAL
    ISSN: 1020-3397 Vol.28 N° 8 2022 págs. 560 - 568
    Resumen
    Background: 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.
  • Autores: Seitz, K.; Cohen, J.; Deliens, L.; et al.
    Revista: JOURNAL OF GLOBAL HEALTH
    ISSN: 2047-2978 Vol.12 2022 págs. 04031
    Resumen
    Background Little is known about place of death in Latin America, although this data are crucial for health system planning. This study aims to describe place of death and associated factors in Latin America and to identify factors that contribute to inter-country differences in place of death. Methods We conducted a total population observa-tional study using death certificates of the total annu-al decedent populations in 12 countries (Argentina, Brazil, Chile, Colombia, Costa Rica, El Salvador, Gua-temala, Ecuador, Mexico, Paraguay, Peru, and Uru-guay) for the most recent available year (2016, 2017, or 2018). Data were analysed regarding place of death and multivariable logistic regression with place of death as the dependent variable was used to exam-ine associated clinical and sociodemographic factors (independent variables) in each of the countries. Results The total study sample was 2 994 685 deaths; 31.3% of deaths occurred at home, and 57.6% in hospitals. A strong variation was found among the countries with home deaths ranging from 20% (Bra-zil) to 67.9% (Guatemala) and hospital deaths from 22.3% (Guatemala) to 69.5% (Argentina). These differences between countries remained largely un-changed after controlling for sociodemographic fac-tors and causes of death. The likelihood of dying at home was consistently higher with increasing age, for those living in a rural area, and for those with a lower educational level (except in Argentina). Conclusions Most deaths in Latin America occur in hospitals, with a strong variation between countries. As clinical and sociodemographic factors included in this study did not explain country differences, other factors such as policy and health care system seem to have a crucial impact on where people die in Lat-in America.
  • Autores: Rodríguez, M. (Autor de correspondencia); Feng, A.; Menjívar, C.; et al.
    Revista: INTERNATIONAL JOURNAL OF MEDICAL INFORMATICS
    ISSN: 1386-5056 Vol.166 2022 págs. 104857
    Resumen
    Introduction: 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.
  • Autores: Sánchez Cárdenas, Miguel Antonio; Garralda Domezain, Eduardo (Autor de correspondencia); Van-Steijn, D.; et al.
    Revista: EASTERN MEDITERRANEAN HEALTH JOURNAL
    ISSN: 1687-1634 Vol.28 N° 8 2022 págs. 614 - 621
    Resumen
    The 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.
  • Autores: Yildiz, B. (Autor de correspondencia); Allan, S.; Bakan, M.; et al.
    Revista: BMJ OPEN
    ISSN: 2044-6055 Vol.12 N° 8 2022 págs. e057229
    Resumen
    Introduction Adequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families. Methods and analysis The iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights. Ethics and dissemination The cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying. Methods and analysis The iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights. Ethics and dissemination The cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying.
  • Autores: van der Ham, M.; Korfage, I.; Mori, M.; et al.
    Revista: QUALITY OF LIFE RESEARCH
    ISSN: 0962-9343 Vol.31 2022 págs. S69 - S69
  • Autores: Arantzamendi Solabarrieta, María; Belar Beitia, Alazne (Autor de correspondencia); Payne, S.; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN: 0885-3924 Vol.61 N° 4 2021 págs. 831 - 844.e10
    Resumen
    Context: Near the end of life when patients experience refractory symptoms, palliative sedation may be considered as a last treatment. Clinical guidelines have been developed, but they are mainly based on expert opinion or retrospective chart reviews. Therefore, evidence for the clinical aspects of palliative sedation is needed. Objectives: To explore clinical aspects of palliative sedation in recent prospective studies. Methods: Systematic review was conducted following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and registered at PROSPERO. PubMed, CINAHL, Cochrane, MEDLINE, and EMBASE were searched (January 2014-December 2019), combining sedation, palliative care, and prospective. Article quality was assessed. Results: Ten prospective articles were included, involving predominantly patients with cancer. Most frequently reported refractory symptoms were delirium (41%-83%), pain (25%-65%), and dyspnea (16%-59%). In some articles, psychological and existential distress were mentioned (16%-59%). Only a few articles specified the tools used to assess symptoms. Level of sedation assessment tools were the Richmond Agitation Sedation Scale, Ramsay Sedation Scale, Glasgow Coma Scale, and Bispectral Index monitoring. The palliative sedation practice shows an underlying need for proportionality in relation to symptom intensity. Midazolam was the main sedative used. Other reported medications were phenobarbital, promethazine, and anesthetic medication-propofol. The only study that reported level of patient's discomfort as a palliative sedation outcome showed a decrease in patient discomfort. Conclusion: Assessment of refractory symptoms should include physical evaluation with standardized tools applied and interviews for psychological and existential evaluation by expert clinicians working in teams. Future research needs to evaluate the effectiveness of palliative sedation for refractory symptom relief.
  • Autores: Belar Beitia, Alazne (Autor de correspondencia); Arantzamendi Solabarrieta, María; Payne, S.; et al.
    Revista: PALLIATIVE MEDICINE
    ISSN: 0269-2163 Vol.35 N° 2 2021 págs. 295 - 314
    Resumen
    Background: Palliative sedation is the monitored use of medications intended to relieve refractory suffering. The assessment of palliative sedation has been focused on the assess of the level of consciousness but a more comprehensive approach to assessment is needed. Aim: To understand how the potential effects and possible adverse events of palliative sedation in Palliative Care patients are measured. Design: Integrative review of most recent empirical research. Data sources: Cochrane Library, Embase, Medline, PubMed, and CINAHL were searched (2010-2020) using the terms sedation, palliative care, terminal care, assessment. Limits included studies in English and adults. Inclusion criteria were: scientific assessment papers, effects and complications of palliative sedation; patients with incurable illness. Results: Out of 588 titles, 26 fulfilled inclusion criteria. The Discomfort Scale-Dementia of Alzheimer Type and Patient Comfort Score were used to assess comfort. The Richmond Agitation-Sedation Scale and The Ramsay Sedation Scale are the most used to measure its effect. Refractory symptoms were assessed through multi-symptom or specific scales; except for psychological or existential distress. Delirium was assessed using the Memorial Delirium Assessment Scale and pain through the Critical Care Pain Observation Tool. The use of technical approaches to monitor effects is upcoming. There is lack of measurement of possible adverse events and variability in timing measurement. Conclusions: There are palliative care validated instruments to assess the sedation effect but this review shows the need for a more standardized approach when assessing it. Instruments should be used within an experienced and trained expert, providing a holistic assessment.
  • Autores: Martínez García, Marina (Autor de correspondencia)
    Revista: ESTUDIOS SOBRE EDUCACION
    ISSN: 1578-7001 N° 40 2021 págs. 228 - 229
  • Autores: Nitola Mendoza, Lina María (Autor de correspondencia); Centeno Cortés, Carlos
    Revista: ANALES DEL SISTEMA SANITARIO DE NAVARRA
    ISSN: 1137-6627 Vol.44 N° 1 2021 págs. 125 - 126
  • Autores: Durán Vian, Francisco (Autor de correspondencia); Pons Izquierdo, Juan José; Serrano Martínez, Miriam
    Revista: URBAN FORESTRY AND URBAN GREENING
    ISSN: 1618-8667 Vol.59 2021 págs. 127042
    Resumen
    Since the seventies, cities all over the world are rediscovering their rivers. Recreational uses of the urban streams are becoming popular and public access to the waterfronts is being improved. This has led to the construction of a wide variety of public open spaces on the riverfront with different ways of interacting with the river ecosystem. In this research, we elaborate a classification of riverfront parks based on two criteria: the position of the open space within the river corridor and the access possibilities from the open space to the water. To verify the applicability of the classification framework, seven Spanish urban rivers have been studied. Results derived from the classification process show that public recreational riverfronts can be categorized into three classes: floodplain, upland and raised spaces. Within the floodplain spaces, fluvial subclass can be distinguished from riparian subclass in that the former allows greater access to water. The case study confirms the viability of the classification system and it is useful to describe the open space classes. We found that, despite their spatial characteristics, design and use can be almost unlimited, there are patterns associated with each class. The methodology developed and its application (1) allows to know the amount of public spaces in the urban river corridor, (2) gives an organizing framework for understanding river-city recreational interactions and (3) facilitates the assessment of the riverbanks.
  • Autores: Belar Beitia, Alazne; Arantzamendi Solabarrieta, María (Autor de correspondencia); Santesteban, Y.; et al.
    Revista: BMJ SUPPORTIVE & PALLIATIVE CARE
    ISSN: 2045-435X Vol.11 N° 2 2021 págs. 156 - 162
    Resumen
    OBJECTIVE:Cultural backgrounds and values have a decisive impact on the phenomenon of the wish to die (WTD), and examination of this in Mediterranean countries is in its early stages. The objectives of this study were to establish the prevalence of WTD and to characterise this phenomenon in our cultural context. METHODS:A cross-sectional study with consecutive advanced inpatients was conducted. Data about WTD (Assessing Frequency & Extent of Desire to Die (AFFED) interview) and anxiety and depression (Edmonton Symptom Assessment System-revised (ESAS-r)) were collected through two face-to-face clinical encounters. Data were analysed with descriptive statistics, ¿2 and analysis of variance. RESULTS:201 patients participated and 165 (82%) completed both interviews. Prevalence of WTD was 18% (36/201) in the first interview and 16% (26/165) in the second interview (p=0.25). After the first interview, no changes in depression (p=0.60) or anxiety (p=0.90) were detected. The AFFED shows different experiences within WTD: 11% of patients reported a sporadic experience, while 7% described a persistent experience. Thinking about hastening death (HD) appeared in 8 (22%) out of 36 patients with WTD: 5 (14%) out of 36 patients considered this hypothetically but would never take action, while 3 (8%) out of 36 patients had a more structured idea about HD. In this study, no relation was detected between HD and frequency of the appearance of WTD (p=0.12). CONCLUSIONS:One in five patients had WTD. Our findings suggest the existence of different experiences within the same phenomenon, defined according to frequency of appearance and intention to hasten death. A linguistically grounded model is proposed, differentiating the experiences of the 'wish' or 'desire' to die, with or without HD ideation.
  • Autores: Hjorth, N. E. (Autor de correspondencia); Hufthammer, K. O.; Sigurdardottir, K.; et al.
    Revista: BMJ SUPPORTIVE & PALLIATIVE CARE
    ISSN: 2045-435X 2021
    Resumen
    Objectives Advance care planning (ACP) is not systematically performed in Argentina or Norway. We used the post-bereavement survey of the ERANet-LAC International Care Of the Dying Evaluation (CODE) project (2017-2020) to examine the proportion of relatives who were offered an ACP conversation, the proportion of those not offered it who would have wanted it and whether the outcomes differed between those offered a conversation and those not. Methods Relatives after cancer deaths in hospitals answered the CODE questionnaire 6-8 weeks post bereavement, by post (Norway) or interview (Argentina). Two additional questions asked if the relative and patient had been invited to a conversation about wishes for the patient's remaining lifetime, and, if not invited, whether they would have wanted such a conversation. The data were analysed using mixed-effects ordinal regression models. Results 276 participants (Argentina 98 and Norway 178) responded (56% spouses, 31% children, 68% women, age 18-80+). Fifty-six per cent had been invited, and they had significantly more positive perceptions about care and support than those not invited. Sixty-eight per cent of the participants not invited would have wanted an invitation, and they had less favourable perceptions about the care, especially concerning emotional and spiritual support. Conclusions Relatives who had been invited to a conversation about wishes for the patient's remaining lifetime had more positive perceptions about patient care and support for the relatives in the patient's final days of life. A majority of the relatives who had not been invited to an ACP conversation would have wanted it.
  • Autores: Haugen, D. F.; Hufthammer, K. O.; Gerlach, C.; et al.
    Revista: ONCOLOGIST
    ISSN: 1083-7159 Vol.26 N° 7 2021 págs. E1273 - E1284
    Resumen
    Background Recognized disparities in quality of end-of-life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries. Materials and Methods A postbereavement survey was conducted by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the international version of the Care Of the Dying Evaluation (i-CODE) questionnaire 6-8 weeks postbereavement. Primary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patient's last days of life. Results Of 1,683 potential participants, 914 i-CODE questionnaires were completed (response rate, 54%). Approximately 94% reported the doctors treated their family member with dignity and respect always or most of the time; similar responses were given about nursing staff (94%). Additionally, 89% of participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3-17.8). Although 87% of participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase. Conclusion This is the first study assessing quality of care for dying cancer patients from the bereaved relatives' perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. (ClinicalTrials.gov Identifier: NCT03566732). Implications for Practice Previous studies have shown that bereaved relatives' views represent a valid way to assess care for dying patients in the last days of their life. The Care Of the Dying Evaluation questionnaire is a suitable tool for quality improvement work to help determine areas where care is perceived well and areas where care is perceived as lacking. Health care professionals need to sustain high quality communication into the last phase of the cancer trajectory. In particular, discussions about what to expect when someone is dying and the provision of hydration in the last days of life represent key areas for improvement.
  • Autores: Carvajal Valcárcel, Ana; Aradilla-Herrero, A. (Autor de correspondencia); Edo-Gual, M.; et al.
    Revista: NURSE EDUCATION TODAY
    ISSN: 0260-6917 Vol.101 2021 págs. 104879
    Resumen
    Education in palliative care is a required competence for the nursing degree.Pedagogical strategies in palliative care are mainly aimed at promoting an understanding of patients with advanced disease. Phenomenological texts are stories intended to evoke lived experiences and help understand these complex situations. However, there is no evidence regarding the experience of reading phenomenological texts in nursing. The aim of this study is to determine what impact nursing students have when reading a phenomenological text about the experience of people living with advanced cancer. The students¿ writings showed that reading the phenomenological text caused them to reflect and feel moved and challenged. The impact on the students is grouped into three categories: the experience of the corporeality of patients makes students aware of the importance of the body; the disease as an individual transformative process challenges students; and the experiences of advanced cancer patients make students aware of the importance of how they care for patients and their families. The reading of a phenomenological text on the experience of living with advanced cancer is innovative and may be a teaching method that promotes care focused on the person with advanced illness, key aspect for student¿s competency in clinical practice.
  • Autores: Sánchez Cárdenas, Miguel Antonio (Autor de correspondencia); Garralda Domezain, Eduardo; Benítez Sastoque, Edgar Ricardo; et al.
    Revista: INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH
    ISSN: 1660-4601 Vol.18 N° 20 2021 págs. 10753
    Resumen
    Background: The coverage of palliative care (PC) may be understood as a country's capacity to offer prevention and relief from serious health-related suffering in relation to an existing need. The aim of this study is to estimate European countries & PRIME; coverage capacities. Method: Secondary analysis of three indicators, including the number of specialized services (SSPC), integration capacity scores (ICS) and the PC needs. By means of a K-medians clustering supervised algorithm, three coverage profiles were obtained: (1) Advanced: countries with high ICS and SSPC, and low PC needs; (2) Limited: countries with low ICS and SSPC, and low PC needs; and (3) Low: countries with low ICS and SSPC and high PC needs. Results: On average, the ratio of specialized services per population was 0.79 per 100,000 inhabitants, the average ICS was 19.62 and the average number of deceased patients with SHS per 100,000 inhabitants was 5.69. Twenty countries (41%) reached an advanced coverage profile. Nine countries (18%) demonstrated a limited coverage profile; and 20 countries (41%) fell under a low-coverage capacity. Conclusion: The level of palliative care coverage across Europe shows that 59% of European countries have either limited or very low availability of PC resources as regards their palliative care needs.</p>
  • Autores: Trinchete Reigada, Carla Manuela; Centeno Cortés, Carlos; Gonçalves, E.; et al.
    Revista: INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH
    ISSN: 1660-4601 Vol.18 N° 10 2021 págs. 5348
    Resumen
    PC continues to be misunderstood within the world of healthcare. PC professionals are key agents for promoting a greater understanding of their field. It aims to examine the messages, both implicit and explicit, that PC professionals transmit about themselves and their work within their teams and to other health professionals. Methods: Focused ethnographic secondary analysis, exploring the interactions of PC professionals as it happens at everyday work. An inductive thematic analysis was developed from 242 h of observation of the daily work practices of palliative care professionals, focusing on their interactions with others. The data was coded without predefined categories, and the analysis was performed independently by two researchers. Results: Palliative professionals communicate that they are part of an active team working in an organized manner. They value and feel proud of their work. Despite the intensity of their work, these professionals are always available to others, to whom they demonstrate a clear professional identity. They convey their expertise in alleviating suffering, respectful behavior and collaborative ability. Conclusion: Professionals, in their daily work, communicate through their messages the essence of palliative care. It is essential that PC professionals perceive themselves as potential influencers and explicitly transmit the reasons for their intervention. Otherwise, others will perpetuate myths, misunderstandings, lack of positive PC reputation
  • Autores: Pallotti, M. C. (Autor de correspondencia); López Fidalgo, Jesús Fernando; Centeno Cortés, Carlos; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN: 1096-6218 Vol.24 N° 7 2021 págs. 1061 - 1066
    Resumen
    Objective: Recognizing delirium phenomenology (DP) aids the early diagnosis of this syndrome and improves quality of life in patients with advanced cancer. The aim of this study was to identify the neurobehavioral and cognitive patterns of delirium-related symptoms in persons with advanced cancer. Methods: We conducted an observational comparative prospective study on delirium in patients with advanced cancer in different palliative care settings, assessing the presentation/evolution of DP with the Memorial delirium assessment scale (MDAS). Results: Two hundred twenty-seven patients were enrolled on hospital/hospice admission. Of these, 57 were admitted with delirium, 170 without delirium, and 31 developed delirium during hospitalization. Of the 88 patients admitted with delirium or who developed it during hospitalization, only 32 underwent two consecutive MDAS evaluations (at diagnosis and after one week). Delirium resolved in 22 patients (first average MDAS score 10.08 vs. second 3.6 [p < 0.001]). Disorientation, short-term memory, and memory span were altered in all patients with unresolved delirium. The same features were altered in 18 (80%), 17 (80%), and 16 (70%) of the patients with resolved delirium, respectively, and in 58 (35%), 114 (67%), and 38 (23%) of no-delirium patients, respectively. Conclusion: Cognitive-related symptoms appear to be the most prevalent and earliest signs of DP in patients with advanced cancer.
  • Autores: Connor, S. R.; Centeno Cortés, Carlos; Garralda Domezain, Eduardo; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN: 0885-3924 Vol.61 N° 4 2021 págs. 812 - 816
    Resumen
    Context: Palliative care is an emerging health care service essential for every health care system. Information on the current status of palliative care service delivery is needed in order to understand the gap between need for palliative care and current capacity to deliver. Objectives: To estimate the number of providers delivering palliative care worldwide and the patients they served in 2017. Methods: Estimates were obtained from a sample of countries from each World Bank income group using typical case purposive sampling methods. Reliable data from the United States, and eight additional countries were used for the high-income group. For low and middle-income countries (LMICs), in order to determine an estimate of the number of patients served 30 countries representative of palliative care service delivery in each region and income group were surveyed. Results: Results from the mapping levels of palliative care development survey identified a total of approximately 25,000 palliative care service delivery teams globally. The total estimate of patients served in 2017 was approximately seven million. Conclusion: Significant disparities in palliative care access exist both by region and income group. The European and Pan-American regions had most while the Eastern Mediterranean, Southeast Asian, and African regions had least. Much more needs to be done to develop and deliver palliative care in LMICs where 80% of the need for palliative care exists. With about 70% of operating palliative care services in high income countries and only 30% in LMICs, a major effort to develop palliative care in these settings is urgently needed.
  • Autores: van Steijn, D. (Autor de correspondencia); Pons Izquierdo, Juan José; Garralda Domezain, Eduardo; et al.
    Revista: INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH
    ISSN: 1660-4601 Vol.18 N° 19 2021 págs. 10345
    Resumen
    Background: Palliative care is a priority for health systems worldwide, yet equity in access remains unknown. To shed light on this issue, this study compares populations' driving time to specialized palliative care services in three countries: Ireland, Spain, and Switzerland. Methods: Network analysis of the population's driving time to services according to geolocated palliative care services using Geographical Information System (GIS). Percentage of the population living within a 30-min driving time, between 30 and 60 minutes, and over 60 min were calculated. Results: The percentage of the population living less than thirty minutes away from the nearest palliative care provider varies among Ireland (84%), Spain (79%), and Switzerland (95%). Percentages of the population over an hour away from services were 1.87% in Spain, 0.58% in Ireland, and 0.51% in Switzerland. Conclusion: Inequities in access to specialized palliative care are noticeable amongst countries, with implications also at the sub-national level.
  • Autores: Trinchete Reigada, Carla Manuela (Autor de correspondencia); Hermida-Romero, S.; Sandgren, A.; et al.
    Revista: INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING
    ISSN: 1748-2623 Vol.16 N° 1 2021 págs. 1955441
    Resumen
    Background University students are the future professionals who will influence society. It is thus essential to improve students' understanding of palliative care (PC), especially those in the non-health field, to generate and encourage propitious opinions about PC. This study describes the perceptions of PC among university students from different disciplines. Method Qualitative exploratory study using virtual focus groups (FGs) and design thinking (DT) approach. An intentional sample of students from various disciplines, universities and cities from Spain were selected. Numerous researchers from different fields were involved in the discussion of the final thematic analysis. Results Four themes and seven subthemes were found: i) Students have an ambiguous understanding about PC; ii) PC is not a common issue for non-health students; ii) Students see PC as an important and necessary field; iii) Students build counter-narratives against PC myths, demonstrating PC brings key benefits into people's lives; iv) PC is a synonym of death. Conclusion Despite the fact that students do not know much about PC, the topic easily arouses reflection and positive discussion. Through the conversations they find positive values and arguments against misunderstand- ing. Students from different disciplines could be the target of innovative educational initia- tives and the social debate on PC.
  • Autores: Sánchez Cárdenas, Miguel Antonio (Autor de correspondencia); León, M. X.; Rodríguez-Campos, L. F.; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN: 0885-3924 Vol.62 N° 2 2021 págs. 293 - 302
    Resumen
    Context. The national evaluation of an individual country is a tool used to improve the universal provision of palliative care. The evaluation of a country's internal situation, by means of an analysis of the development of palliative care by region, may also be an instrument for improvement. Objectives. The aim of this study was to understand the regional development of palliative care in Colombia, through the application of international indicators. Methods. Regional development was analyzed for Colombia, with a country-specific adaptation of the evaluation method used in the latest edition of the Palliative Care World Map (Clark D, 2020), the need for palliative care per death with serious health-related suffering (Knaul FN, 2019), and the coverage of specialized services, following European standards (Centeno, 2016). A total of 33 of the country's regions were classified. Results. Some 41% of the people who die in Colombia need palliative care. The average figure for specialized services is 0.5/100,000 inhabitants, with a maximum coverage of 51%. In Colombia, there are 12 regions with a generalized level of provision; six regions with isolated provision, nine regions developing their capacity, four with no known activity, and two at an advanced level of palliative care integration. The regions with the highest level of palliative care development coincide with higher demand and coverage of specialized services. Conclusion. Regional palliative care development is unequal and unbalanced. Applying international indicators to levels of regional development allows for the identification of geographical inequalities and highlights low palliative care development, especially in the rural areas of the country. (C) 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
  • Autores: Goldraij, G. (Autor de correspondencia); Tripodoro, Vilma Adriana; Aloisio, M.; et al.
    Revista: BMJ OPEN QUALITY
    ISSN: 2399-6641 Vol.10 N° 3 2021 págs. e001436
    Resumen
    Poor communication contributes to morbidity and mortality, not only in general medical care but also at the end oflife. This leads to issues relating to symptom control and quality of care. As part of an international project focused on bereaved relatives' perceptions about quality of end-of-life care, we undertook a quality improvement (QI) project in a general hospital in Cordoba city, Argentina. By using two iterative QI cycles, we launched an educational process and introduced a clinical mnemonic tool, I-PASS, during ward handovers. The introduction of the handover tool was intended to improve out-of-hours care. Our clinical outcome measure was ensuring comfort in at least 60% of dying patients, as perceived by family carers, during night shifts in an oncology ward during the project period (March-May 2019). As process-based measures, we selected the proportion of staff completing the I-PASS course (target 60%) and using I-PASS in at least 60% of handovers. Participatory action research was the chosen method. During the study period, 13/16 dying patients were included. We received 23 reports from family carers about the level of patient comfort during the previous night. Sixty-five per cent of healthcare professionals completed the I-PASS training. The percentage of completed handovers increased from 60% in the first Plan-Do-Study-Act (PDSA) cycle to 68% in the second one. The proportion of positive reports about patient comfort increased from 63% (end of the first PDSA cycle) to 87% (last iterative analysis after 3 months). Moreover, positive responses to 'Did doctors and nurses do enough for the patient to be comfortable during the night?' increased from 75% to 100% between the first and the second QI cycle. In conclusion, we achieved the successful introduction and staff training for use of the I-PASS tool. This led to improved perceptions by family carers, about comfort for dying patients.
  • Autores: Arias Casais, Natalia Sofía (Autor de correspondencia); Garralda Domezain, Eduardo; Sánchez Cárdenas, Miguel Antonio; et al.
    Revista: BMC PALLIATIVE CARE
    ISSN: 1472-684X Vol.20 N° 1 2021 págs. 36
    Resumen
    Background: Palliative care (PC) development cannot only be assessed from a specialized provision perspective. Recently, PC integration into other health systems has been identified as a component of specialized development. Yet, there is a lack of indicators to assess PC integration for pediatrics, long-term care facilities, primary care, volunteering and cardiology. Aim: To identify and design indicators capable of exploring national-level integration of PC into the areas mentioned above. Methods: A process composed of a desk literature review, consultation and semi-structured interviews with EAPC task force members and a rating process was performed to create a list of indicators for the assessment of PC integration into pediatrics, long-term care facilities, primary care, cardiology, and volunteering. The new indicators were mapped onto the four domains of the WHO Public Health Strategy. Results: The literature review identified experts with whom 11 semi-structured interviews were conducted. A total of 34 new indicators were identified for national-level monitoring of palliative care integration. Ten were for pediatrics, five for primary care, six for long-term care facilities, seven for volunteering, and six for cardiology. All indicators mapped onto the WHO domains of policy and education while only pediatrics had an indicator that mapped onto the domain of services. No indicators mapped onto the domain of use of medicines.
  • Autores: Arantzamendi Solabarrieta, María (Autor de correspondencia); Sapeta, P.; Collete, N.; et al.
    Revista: PALLIATIVE MEDICINE REPORTS
    ISSN: 2689-2820 Vol.2 N° 1 2021 págs. 34 - 39
    Resumen
    Emotional exhaustion is a problem many palliative care professionals face during their activity. Art therapy is emotionally beneficial for palliative patients that experience suffering, but its impact on professionals¿ experience of suffering has not been researched. Aim:To examine the immediate reactions of professionals after an art therapy workshop focused on personal self-care, also considering previously used coping strategies. Design: A four-hour art therapy workshop was designed including a generic qualitative study of participants. Participants were palliative care professionals and their reactions were examined using an ad hoc questionnaire with open-ended questions. Descriptive analysis of quantitative variables and thematic analysis of open-ended questions were conducted. Results: Seventeen professionals participated voluntarily. They rated the workshop positively, using words like ¿calm¿ and ¿relaxation¿ to express the effects of the workshop, which they considered therapeutic and a source of self-awareness. For some, it allowed them to release emotions; for others, it enabled introspection and opened up a more elaborated emotional response. They thought artistic expression would be useful for their colleagues, or even for their own personal development. In the workshop, professionals opened up and explained how they face intense moments on a day-to-day basis: how they approach the situation, or how they try to control their surroundings; how they disconnect/dista
  • Autores: Seitz, K.; Deliens, L.; Cohen, J.; et al.
    Revista: REVISTA PANAMERICANA DE SALUD PUBLICA-PAN AMERICAN JOURNAL OF PUBLIC HEALTH
    ISSN: 1020-4989 Vol.45 2021 págs. e149
    Resumen
    Objective. This paper assesses the availability and quality of death certificate data in Latin America and the feasibility of using these data to study place of death and associated factors. Methods. In this comparative study, we collected examples of current official death certificates and digital data files containing information about all deaths that occurred during 1 year in 19 Latin American countries. Data were collected from June 2019 to May 2020. The records for place of death and associated variables were studied. The criteria for data quality were completeness, number of ill-defined causes of death and timeliness. Results. All 19 countries provided copies of current official death certificates and 18 of these registered the place of death. Distinguishing among hospital or other health care institution, home and other was possible for all countries. Digital data files with death certificate data were available from 12 countries and 1 region. Three countries had data considered to be of high quality and seven had data considered to be of medium quality. Categories for place of death and most of the predetermined factors possibly associated with place of death were included in the data files. Conclusions. The quality of data sets was rated medium to high in 10 countries. Hence, death certificate data make it feasible to conduct an international comparative study on place of death and the associated factors in Latin America.
  • Autores: Tripodoro, Vilma Adriana (Autor de correspondencia); Llanos, V.; Daud, M. L.; et al.
    Revista: ECANCERMEDICALSCIENCE
    ISSN: 1754-6605 Vol.15 2021 págs. 1316
    Resumen
    Background: Early identification of palliative needs has proven benefits in quality of life, survival and decision-making. The NECesidades PALiativas (NECPAL) Centro Coordinador Organizacion Mundial de la Salud - Instituto Catalan de Oncologia (CCOMS-ICO (c)) tool combines the physician's insight with objective disease progression parameters and advanced chronic conditions. Some parameters have been independently associated with mortality risk in different populations. According to the concept of the 'prognostic approach' as a companion of the 'palliative approach', predictive models that identify individuals at high mortality risk are needed. Objective: We aimed to identify prognostic factors of mortality in cancer in our cultural context. Method: We assessed cancer patients with palliative needs until death using this validated predictive tool at three hospitals in Buenos Aires City. This multifactorial, quantitative and qualitative non-dichotomous assessment process combines subjective perception (the surprise question: Would you be surprised if this patient dies in the next year?) with other parameters, including the request (and need) for palliative care (PC), the assessment of disease severity, geriatric syndromes, psychosocial factors and comorbidities, as well as the use of healthcare resources. Results: 2,104 cancer patients were identified, 681 were NECPAL+ (32.3%). During a 2-year follow-up period, 422 NECPAL+ patients died (61.9%). The mean overall survival was 8 months. A multivariate model was constructed with significant indicators in univariate analysis. The best predictors of mortality were: nutritional decline (p < 0.000), functional decline (p < 0.000), palliative performance scale (PPS) <= 50 (p < 0.000), persistent symptoms (p < 0.002), functional dependence (p < 0.000), poor treatment response (p < 0.000), primary cancer diagnosis (p = 0.024) and condition (in/outpatients) (p < 0.000). Only three variables remained as survival predictors: low response to treatment (p < 0.001), PPS <= 50 (p < 0.000) and condition (in/outpatients) (p < 0.000). Conclusion: This prospective model aimed to improve cancer survival prediction and timely PC referral in Argentinian hospitals.
  • Autores: Arias Casais, Natalia Sofía; Centeno Cortés, Carlos (Autor de correspondencia)
    Revista: ANALES DEL SISTEMA SANITARIO DE NAVARRA
    ISSN: 1137-6627 Vol.43 N° 1 2020 págs. 107 - 108
  • Autores: Zambrano, S. C. (Autor de correspondencia); Centeno Cortés, Carlos; Larkin, P. J.; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN: 1096-6218 Vol.23 N° 2 2020 págs. 184 - 191
    Resumen
    Background: The term "palliative care" (PC) has often been found to have a negative connotation leading some to suggest rebranding and some services to change their name. Perceptions of the PC community about the term remain largely unexplored. Objective: To explore how PC researchers/academics perceive the term is the objective of this study. Design: This is a cross-sectional survey of attendees to the 10th World Research Congress of the EAPC. The questionnaire covered areas of academic activity, including the use of the term. We analyzed data through descriptive and nonparametric statistics and open responses through content analysis. Participants: Academics and researchers in PC were the participants in this study. Results: Of 318 respondents, the majority were women (65%), physicians (48%), and had a postgraduate degree (90%). For 40%, the term hindered the positioning of PC, 28% worried about using the term, and 55% did not discuss these difficulties. We found significant differences between responses and several demographics (e.g., younger age and higher likelihood of worrying about the term). Through open responses, we identified that the term is widely in use, and that its limitations are seen as a cultural by-product, and not as something that a name change would solve. Conclusions: Senior PC academics, researchers, and clinicians have an onus to ensure that colleagues with limited PC experience have the opportunity to discuss and explore the impact of the term on the practice of research. Regarding the term itself, the community's views are conclusive: although using the term will remain a difficult task, the field's identity is in the name.
  • Autores: Clark, D.; Baur, N.; Clelland, D.; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN: 0885-3924 Vol.59 N° 4 2020 págs. 794-807.e4
    Resumen
    Context: Palliative care is gaining ground globally and is endorsed in high level policy commitments, but service provision, supporting policies, education and funding are incommensurate with rapidly growing need. Objectives: To describe current levels of global palliative care development and report on changes since 2006. Methods: An online survey of experts in 198 countries generated 2017 data on 10 indicators of palliative care provision, fitted to six categories of development. Factor analysis and discriminant analysis showed the validity of the categorization. Spearman correlation analyses assessed the relationship with World Bank Income Level (WBIL), Human Development Index (HDI) and Universal Health Coverage (UHC). Results: Numbers (percentages) of countries in each development category were: 1) no known palliative care activity 47 (24%); 2) capacity-building 13 (7%); 3a) isolated provision 65 (33%); 3b) generalized provision 22 (11%); 4a) preliminary integration into mainstream provision 21 (11%); 4b) advanced integration 30 (15%). Development levels were significantly associated with WBIL (rS= 0·4785), UHC (rS=0·5558) and HDI (rS=0·5426) with p < 0.001. Net improvement between 2006-2017 saw 32 fewer countries in categories 1/2, 16 more countries in 3a/3b, and 17 more countries in 4a/4b. Conclusion: Palliative care at the highest level of provision is available for only 14% of the global population and is concentrated in European countries. An 87% global increase in serious health related suffering amenable to palliative care interventions is predicted by 2060. With need rising, palliative care is not reaching the levels required by at least half the global population.
  • Autores: La Rosa Salas, Virginia; Arbea Moreno, Leire (Autor de correspondencia); Vidaurreta Fernández, Marta; et al.
    Revista: EDUCACION MEDICA
    ISSN: 1575-1813 Vol.21 N° 6 2020 págs. 386 - 396
    Resumen
    La asistencia sanitaria centrada en el paciente es la clave para una atención humana a la persona y a su familia. La práctica colaborativa en equipos interprofesionales resulta imprescindible para alcanzar una atención sanitaria de calidad. La universidad tiene la responsabilidad de preparar a sus graduados para trabajar en equipos interprofesionales. Una enseñanza/aprendizaje centrada en la persona, fundamentada en las competencias que definen la educación interprofesional, es clave para que nuestros estudiantes reconozcan la necesidad del trabajo colaborativo. Este artículo detalla un proyecto docente de educación interprofesional de la Universidad de Navarra, donde estudiantes de las facultades de medicina, enfermería y farmacia aprenden juntos y de manera gradual, las claves de cómo trabajar en equipo.
  • Autores: Pergolizzi, D.; Crespo, I.; Balaguer, A.; et al.
    Revista: BMJ OPEN
    ISSN: 2044-6055 Vol.10 N° 2 2020 págs. e034413
    Resumen
    We aim to design and evaluate a proactive and systematic method for the needs assessment using quality guidelines for developing complex interventions. This will involve patients, their relatives and healthcare professionals in all phases of the study and its communication to offer clinical practice a reliable approach to address the palliative needs of patients. Methods and analysis To design and assess the feasibility of an evidence-based, proactive and systematic Multidimensional needs Assessment in Palliative care (MAP) as a semistructured clinical interview guide for initial palliative care encounter/s in patients with advanced cancer. This is a two-phase multisite project conducted over 36 months between May 2019 and May 2022. Phase I includes a systematic review, discussions with stakeholders and Delphi consensus. The evidence gathered from phase I will be the basis for the initial versions of the MAP, then submitted to Delphi consensus to develop a preliminary guide of the MAP for the training of clinicians in the feasibility phase. Phase II is a mixed-methods multicenter feasibility study that will assess the MAP¿s acceptability, participation, practicality, adaptation and implementation. A nested qualitA nested qualitative study preliminary clues about the benefits and barriers of the MAP. The evidence gathered from phase II will build a MAP user guide and educational programme for use in clinical practice.
  • Autores: Trinchete Reigada, Carla Manuela; Arantzamendi Solabarrieta, María; Centeno Cortés, Carlos
    Revista: BMC PALLIATIVE CARE
    ISSN: 1472-684X Vol.19 N° 1 2020 págs. 88
    Resumen
    Despite 50 years of modern palliative care (PC), a misunderstanding of its purpose persists. The concept ¿Palliative Care¿ can be linked to feelings of fear, anxiety and death, instead of compassion, support or appropriate care. Society is still afraid to speak its name, and specialized units are identified as ¿places of death¿ as opposed to ¿places of life¿ meant to treat suffering. This issue is prohibitive to the implementation and development of PC policies worldwide. It is imperative to identify what message PC professionals are relaying to patients and other health care specialists and how that message may condition understandings of the right to access PC. Methods A qualitative study, employing focused ethnography and participant observation (PO) of the daily interaction of PC professionals with patients and family members in three different PC services. Two researchers independently conducted a thematic analysis, followed by member checking with participants. Results A total of 242 hours of participant observation revealed the following messages sent by PC professionals in their daily interaction with patients and families: i) We are focused on your wellbeing; ii) You matter: we want to get to know you; iii) Your family is important to us. Conclusion The complexity of PC discourses contributes to the difficulty of identifying a clear universal message between PC professionals, patients and families. The PC professionals observed transmit a simple message focused on their actions rather than their identity, which may perpetuate some social/cultural misunderstandings of PC. It seems there is a common culture, based on the same values and attitudes, within the messages that PC professionals transmit to patients and their families. PC teams are characterised by their availability.
  • Autores: Arias Casais, Natalia Sofía; Garralda Domezain, Eduardo; Pons Izquierdo, Juan José; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN: 0885-3924 Vol.60 N° 4 2020 págs. 746 - 753
    Resumen
    Context. Approximately 170,000 children in need of palliative care die every year in Europe without access to it. This field remains an evolving specialty with unexplored development. Objectives. To conduct the first regional assessment of pediatric palliative care (PPC) development and provision using data from the European Association for Palliative Care atlas of palliative care 2019. Methods. Two surveys were conducted. The first one included a single question regarding PPC service provision and was addressed by European Association for Palliative Care atlas informants. The second one included 10 specific indicators derived from an open-ended interview and rating process; a specific network of informants was enabled and used as respondents. Data were analyzed and presented in the map of the figure. Results. Data on PPC service provision were gathered from 51 of 54 (94%) European countries. Additional data were collected in 34 of 54 (62%) countries. A total of 680 PPC services were identified including 133 hospices, 385 home care services, and 162 hospital services. Nineteen countries had specific standards and norms for the provision of PPC. Twenty-two countries had a national association, and 14 countries offered education for either pediatric doctors or nurses. In seven countries, specific neonatal palliative care referral services were identified. Conclusion. PPC provision is flourishing across the region; however, development is less accentuated in low-to-middle-income countries. Efforts need to be devoted to the conceptualization and definition of the models of care used to respond to the unmet need of PPC in Europe. The question whether specialized services are required or not should be further explored. Strategies to regulate and cover patients in need should be adapted to each national health system. (C) 2020 The Authors. Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine.
  • Autores: Arias Casais, Natalia Sofía (Autor de correspondencia); López Fidalgo, Jesús Fernando; Garralda Domezain, Eduardo; et al.
    Revista: PALLIATIVE MEDICINE
    ISSN: 0269-2163 Vol.34 N° 8 2020 págs. 1044 - 1056
    Resumen
    Background: Service provision is a key domain to assess national-level palliative care development. Three editions of the European Association for Palliative Care (EAPC) Atlas of Palliative Care monitored the changes in service provision across Europe since 2005. Aim: To study European trends of specialized service provision at home care teams, hospital support teams, and inpatient palliative care services between 2005 and 2019. Design: Secondary analysis was conducted drawing from databases on the number of specialized services in 2005, 2012, and 2019. Ratios of services per 100,000 inhabitants and increase rates on number of services for three periods were calculated. Analysis of variance (ANOVA) analyses were conducted to determine significant changes and chi-square to identify countries accounting for the variance. Income-level and sub-regional ANOVA analysis were undertaken. Setting: 51 countries. Results: Forty-two countries (82%) increased the number of specialized services between 2005 and 2019 with changes for home care teams (104% increase-rate), inpatient services (82%), and hospital support teams (48%). High-income countries showed significant increase in all types of services (p <¿0.001), while low-to-middle-income countries showed significant increase only for inpatient services. Central¿Eastern European countries showed significant improvement in home care teams and inpatient services, while Western countries showed significant improvement in hospital support a
  • Autores: Radbruch, L. (Autor de correspondencia); De Lima, L. ; Knaul, F.; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN: 0885-3924 Vol.60 N° 4 2020 págs. 754 - 764
    Resumen
    Context. The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. Objective. The main objective of this article is to present the research behind the new definition. Methods. The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. Results. The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. Conclusion. Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span. (C) 2020 The Authors. Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine.
  • Autores: Arantzamendi Solabarrieta, María (Autor de correspondencia); García Rueda, Noelia; Carvajal Valcárcel, Ana; et al.
    Revista: QUALITATIVE HEALTH RESEARCH
    ISSN: 1049-7323 Vol.30 N° 8 2020 págs. 1143 - 1155
    Resumen
    Abstract Literature suggests that it is possible to live well with advanced cancer but little is known about the process. In this article, we present a secondary analysis of experiences of living with advanced cancer (n=22) that refines the theory of ¿Living Well with Chronic Illness¿ for a different context and population. The refined theory explains the experience of living well with advanced cancer illuminating a five phase iterative process: struggling, accepting, living with advanced cancer, sharing the illness experience, and reconstructing life. These five phases revolve around the core concept of Awareness of Dying, which varied from awareness of the possibility of dying, to accepting the possibility of dying, to acceptance that ¿I am dying.¿ Awareness of Dying led to a focus on living well with advanced cancer and movement towards living a life rather than living an illness.
  • Autores: Arbea Moreno, Leire; Díaz González, Juan Antonio; Centeno Cortés, Carlos; et al.
    Revista: EDUCACION MEDICA
    ISSN: 1575-1813 Vol.21 N° 3 2020 págs. 207-211
  • Autores: Zambrano, S. C. (Autor de correspondencia); Haugen, D. F.; van der Heide, A.; et al.
    Revista: BMC PALLIATIVE CARE
    ISSN: 1472-684X Vol.19 N° 1 2020 págs. 184
    Resumen
    BackgroundIn contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life.In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person.MethodsFollowing the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set.DiscussionCore Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.
  • Autores: Pallotti, M. C.; López Fidalgo, Jesús Fernando; Biasco, G.; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN: 1096-6218 Vol.23 N° 9 2020 págs. 1227 - 1232
    Resumen
    Background: Delirium in advanced cancer inpatient ranges between 13% and 85%. Reasons for this variability on the reported data could be related to the setting where they are admitted. Methods: This is an observational, comparative, prospective study on delirium diagnosis and delirium course of advanced cancer inpatients in two different palliative care settings. Hospice (C1) versus palliative care supportive team (C2). Differences between delirium precipitants, delirium treatment, and delirium survival were observed. Results: From 582 consecutive admissions, 494 from C1 and 88 from C2, finally 227 patients met inclusion criteria, were entered in the study. Total population delirium rate at admission, if we add both centers, was 57 patients (25%), 46 (26%) from C1 and 11 (22%) from C2; no statistically significant differences between delirium rate at admission between the two centers were found (chi(2)). When delirium course between delirious patients admitted in C1 and C2 was analyzed, a significantly higher rate of delirium reversibility was found in C2 [11/14 (78%)] versus [9/65 (14%)] in C1 (chi(2) p <= 0.001). Conclusion: The frequency of delirium at admission and during the hospitalization in advanced cancer patients does not seem to be related to the setting, what seems to be related is the delirium course.
  • Autores: Antoñanzas-Baztan, E.; Pumar Méndez, María Jesús; Marín-Fernández, B.; et al.
    Revista: NURSE EDUCATION IN PRACTICE
    ISSN: 1471-5953 Vol.45 2020
    Resumen
    The objective of this study was to determine the effect of an education short course on professional¿ self-efficacy in the area of breastfeeding care. The intervention had a pre-post design. A total of 43 healthcare professionals attended the course. The Kirkpatrick model for the development, implementation and evaluation of education actions was used for a 4.5-h course. The aspects evaluated included professionals¿ satisfaction and learning regarding confidence to support lactating mothers, perceived transfer of knowledge to the workplace and organizational changes. Data were collected using self-administered questionnaires (participants, unit managers, and education planners), before and after the intervention. Participants' satisfaction with the education action was high in all of the aspects measured (greater than 3.9 in scores of 0¿5). Professionals showed a significant increase in self-efficacy levels for supporting breastfeeding (Wilcoxon test p-value = < 0.05, before intervention: median = 55, [IQR] = 11; after intervention: median = 60, [IQR] = 14). Participants, managers and organizers of the course identified changes in the way that professionals cared for breastfeeding mothers. In conclusion, this educational intervention enhanced professional self-efficacy and performance in breastfeeding care.
  • Autores: Errasti Ibarrondo, María Begoña; Wilson, D. M. ; Choperena Armendáriz, Ana
    Revista: INTERNATIONAL JOURNAL OF QUALITATIVE METHODS
    ISSN: 1609-4069 Vol.19 N° 1 2020 págs. 65
  • Autores: Trinchete Reigada, Carla Manuela (Autor de correspondencia); Sapeta, P.; Centeno Cortés, Carlos
    Revista: CURRENT OPINION IN SUPPORTIVE AND PALLIATIVE CARE
    ISSN: 1751-4258 Vol.13 N° 4 2019 págs. 337 - 343
    Resumen
    Purpose of review Qualitative research in the field of palliative care allows for a crucial study of the final stage of life from a social point of view and cultural perspective. This review evaluates the advantages and challenges of applying an ethnographic approach to palliative care research. Recent findings Thirteen ethnographic articles on organization or quality of care, decision-making, delirium, death, and the process of dying, were reviewed. Most studies use interviews, participant observation, and field notes as their primary data collection techniques. In ethnographic research, cultural issues, relationships and interactions of a group, the meanings and perceptions of the participants, the communication process, and the use of language in a particular and natural context were analyzed. Data collection and information analysis took an average of 14 months in the included studies. Summary The ethnographic method, applied with rigor, is valuable in the analysis of a real phenomenon if the particular context in which the study developed is well defined. With an ethnographic approach, researchers can uncover cultural nuances that evidence different realities.
  • Autores: Aparicio, M. (Autor de correspondencia); Centeno Cortés, Carlos; Robinson, C.; et al.
    Revista: JOURNAL OF NURSING MANAGEMENT
    ISSN: 0966-0429 Vol.27 N° 2 2019 págs. 286 - 300
    Resumen
    AimTo synthesize existing evidence regarding gratitude in health care relationships, with a specific focus on expressions of gratitude from patients and their families to health professionals, including their meaning and impact. BackgroundStudying expressions of gratitude by patients and their families within the scope of health care is an innovative way of identifying the most valuable elements of care. EvaluationA scoping review of three data bases was conducted using the terms gratitude and health professionals (1984-2016). Data were extracted, analysed thematically and synthesized. Key IssuesA total of 32 publications were identified, around half being opinions or reflections. Thematic analysis resulted in the identification of three themes: the characteristics of expressions of gratitude, the focus of expressions of gratitude and the effect of gratitude on health professionals. ConclusionsExpressions of gratitude by patients and their families may have an important personal and professional effect on health professionals that is long lasting. A systematic study of its effect is needed. Implications for Nursing ManagementGratitude from patients and their families may contribute to motivation and retention among health professionals. Gratitude can be nurtured and is associated with a healthy work environment.
  • Autores: Arias Casais, Natalia Sofía (Autor de correspondencia); Garralda Domezain, Eduardo; De Lima, L. ; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN: 1096-6218 Vol.22 N° 5 2019 págs. 580 - 590
    Resumen
    Background: Indicators assessing national-level palliative care (PC) development used for cross-national comparison depict progress on this field. There is current interest on its inclusion in global monitoring frameworks. Objective: Identify and conceptualize those most frequently used for international PC development reporting. Design: Systematic review. Data Sources: PubMed, CINAHL, Google Scholar, and Google targeting national-level development indicators used for cross-national comparison. Additional search requesting experts' suggestions on key studies and "snow-balling" on reference section of all included studies. Identified indicators were listed and categorized in dimensions: services, use of medicines, policy, and education. Results: Fifty-four studies were included. Development has been evaluated using 480 different formulations of 165 indicators, 38 were highly reported. Thirty-two fell into proposed dimensions, 11 for use of medicines, 9 for policy, 7 for services, and 5 for education. Six into complementary dimensions: research, professional activity, and international cooperation. Six were the most frequently used indicators: number of PC services per population (40 reports), existence of PC national plan, strategy, or program (25), existence of palliative medicine specialization (22), availability and allocation of funds for PC (13), medical schools, including PC, in undergraduate curricula (13), and total use of opioids-morphine equivalents (11). Conclusion: There is a clear pattern for national-level PC development evaluation repeatedly using a small number of indicators. Indicators addressing generalistic provision, integration into health systems, and specific fields such as pediatric lack. This study invites international discussion on a global consensus on PC-development assessment.
  • Autores: Martínez García, Marina (Autor de correspondencia); Centeno Cortés, Carlos
    Revista: ANALES DEL SISTEMA SANITARIO DE NAVARRA
    ISSN: 1137-6627 Vol.42 N° 3 2019 págs. 257 - 260
  • Autores: Centeno Cortés, Carlos (Autor de correspondencia); Arias-Casais, N.
    Revista: THE LANCET. GLOBAL HEALTH
    ISSN: 2214-109X Vol.7 N° 7 2019 págs. E815 - E816
  • Autores: Reigada, C. (Autor de correspondencia); Martin-Utrilla, S. ; Perez-Ros, P.; et al.
    Revista: HELIYON
    ISSN: 2405-8440 Vol.5 N° 8 2019 págs. e02196
    Resumen
    Audio-visual materials play a fundamental role in the context of education, care and clinical treatment, as they seem to have a high impact on public awareness. This study aims to describe what messages are perceived by the society at an International Festival of Short Films and Art on Diseases that may help to understand difficult topics, such as illness, dying and suffering. Through an observational, descriptive, cross-sectional study, using full participant observation and an open, self-administered questionnaire, 32 short films were analysed during a healthcare art festival. Categories were developed using inductive content analysis. The message perceived by the participants, after the viewing of the shorts and reflection of the debates among the attendees, were considered in four categories: i) creative and positive education is possible; ii) awareness of preconception and practical duties; iii) meaning of life changes the experience of illness; iv) family and caregivers also experienced suffering. The short films are considered as an excellent tool to generate social dialogue and debate. Public events can be understood as an opportunity to acquire, in an emotional and critical manner, other competencies for public awareness. Together, they are capable of communicating difficult messages through a fast, positive, and creative way.
  • Autores: Arias Casais, Natalia Sofía (Autor de correspondencia); Garralda Domezain, Eduardo; López Fidalgo, Jesús Fernando; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN: 0885-3924 Vol.58 N° 3 2019 págs. 445 - 453.e1
    Resumen
    Context. International consensus on indicators is necessary to standardize the global assessment of palliative care (PC) development. Objectives. To identify the best indicators to assess current national-level PC development. Methods. Experts in PC development were invited to rate 45 indicators organized by domains of the World Health Organization Public Health Strategy in a two-round RAND/UCLA-modified Delphi process. In the first round, experts rated indicators by relevance, measurability, and feasibility (1-9). Ratings were used to calculate a global score (1-9). Indicators scoring >7 proceeded to the second round for fine-tuning of global scores. Median, confidence interval, Content Validity Index, and Disagreement Index were calculated. Indicators scoring a lower limit 95% confidence interval of >7 and a Content Validity Index of >= 0.30 were selected. Results. 24 experts representing five continents and several organizations completed the study. 25 indicators showed a high content validity and level of agreement. Policy indicators (n = 8) included the existence of designated staff in the National Ministry of Health and the inclusion of PC services in the basic health package and in the primary care level list of services. Education indicators (n = 4) focused on processes of official specialization for physicians, inclusion of teaching at the undergraduate level, and PC professorship. Use of medicines indicators (n = 4) consisted of opioid consumption, availability, and prescription requirements. Services indicators (n = 6) included number and type of services for adults and children. Additional indicators for professional activity (n = 3) were identified. Conclusion. The first list including 25 of the best indicators to evaluate PC development at a national level has been identified. (C) 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
  • Autores: Noguera Tejedor, Antonio Luís; Arantzamendi Solabarrieta, María; López Fidalgo, Jesús Fernando; et al.
    Revista: INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH
    ISSN: 1660-4601 Vol.16 N° 24 2019
    Resumen
    Quality medical education, centred on patient¿s needs, is crucial to develop the health professionals that our society requires. Research suggests a strong contribution of palliative care education to professionalism. The aim of this study was to design and validate a self-report inventory to measure student¿s professional development. Method: Sequential exploratory strategy mix method. Inventory was built based on the themes that emerged from the analysis of four qualitative studies about nurse and medical students¿ perceptions related to palliative care teaching interventions (Ballesteros et al 2014, Centeno et al 2014&2017, Rojí et al 2017). The structure and psychometrics of the inventory obtained has been tested in two different surveys with two different groups of medical students. Inventory reliability and construct validity were tested in the first survey group. To verify the inventory structure a confirmatory factor analysis was performed in a second survey group. Results: the has 33-items and seven dimensions: holistic approach, caring for and understanding the patient, personal growth, teamwork, decision-making, patient evaluation, and being a health care professional. Cronbach¿s-alpha was 0.73-0,84 in all seven domains, ICC: 0.95. The confirmatory factor analysis CFI was 1 with a Standardized Root Mean Square index 0,088(SRMR) and obtained a 0,99 goodness-of-fit R-square coefficient. Conclusions: This inventory is valid to assess student¿s professional development
  • Autores: Carrasco Gimeno, Jose Miguel (Autor de correspondencia); Gómez Baceiredo, Beatriz; Navas García, Alex; et al.
    Revista: PLOS ONE
    ISSN: 1932-6203 Vol.14 N° 1 2019 págs. e0211106
    Resumen
    Background Lack of social awareness is a major barrier to the development of palliative care. Mass media influences public opinion, and frequently deal with palliative care contributing to its image and public understanding. Aim To analyse how palliative care is portrayed in Spanish newspapers, as well as the contribution made by the press to its social representation. Design Based on criteria of scope and editorial plurality, four print newspapers were selected. Using the newspaper archive MyNews (www.mynews.es), articles published between 2009 and 2014 containing the words "palliative care" or "palliative medicine" were identified. Sociological discourse analysis was performed on the identified texts on two levels: a) contextual analysis, focusing on the message as a statement; b) interpretative analysis, considering the discourse as a social product. Results We examined 262 articles. Politician and healthcare professionals were the main representatives transmitting messages on palliative care. The discourses identified were characterised by: strong ideological and moral content focusing on social debate, strong ties linking palliative care and death and, to a lesser degree, as a healthcare service. The messages transmitted by representatives with direct experience in palliative care (professionals, patients and families) contributed the most to building a positive image of this healthcare practice. Overall, media reflect different interests in framing public understanding about palliative care. Conclusion The knowledge generated about how palliative care is reflected in the printed media may help to understand better one of the main barriers to its development not only in Spain, but also in other contexts.
  • Autores: Aparicio Pérez, María Dolores (Autor de correspondencia); Centeno Cortés, Carlos; Arantzamendi Solabarrieta, María
    Revista: BMC PALLIATIVE CARE
    ISSN: 1472-684X Vol.18 N° 1 2019 págs. 28
    Resumen
    Background: In palliative care (PC) patients and relatives (P/R) often show their gratitude to the healthcare professionals (HP) who care for them. HP appreciate these displays of gratitude, although the impact of the same has not been examined in detail. Publications analysed tell personal experiences in which HP say that displays of gratitude create sensations of well-being, pride and increased motivation to carry on caring. No systematic examination in PC was found. These aspects related to gratitude may be important in the field of PC, where there is constant exposure to suffering and the preoccupation which arises from wanting to help HP to go on with their work, but it needs closer study and systemisation. The purpose of this study is to understand the significance and the role of the gratitude received from P/R for palliative care health professionals (PCHP). Methods: A suitable mixed method will be used. The first phase will be quantitative and will consist of a survey, piloted by experts, whose goal is to explore the current situation in Spain as regards displays of gratitude received by HP at PC services. It will be sent by e-mail. The results from this part will be incorporated into the second part which will be qualitative and whose goal is to understand the significance of the experience of receiving displays of gratitude from the perspective of PCHP, using a phenomenological approach. Interviews will be undertaken amongst PCHP. The interview guide will be designed after taking the survey results into account. The project has been granted ethical approval. Discussion: These results are set to provide a key contribution within the context of the growing preoccupation on how to care for HP, how to ensure retention and keep them from resigning, as well as preventing burnout, emotional fatigue and boosting their resilience. In order to do this, it is both interesting and ground breaking, to analyse the repercussion of spontaneous gratitude shown by P/R towards PCHP, to see if this is a useful resource to reduce these problems and to encourage the greater presence of dignity and humanisation, for both those receiving care and for those providing it. This gratitude may be one of these strategies.
  • Autores: Baur, N; Centeno Cortés, Carlos; Garralda Domezain, Eduardo; et al.
    Revista: WELLCOME OPEN RESEARCH
    ISSN: 2398-502X Vol.4 N° 77 2019
  • Autores: Belar Beitia, Alazne; Arantzamendi Solabarrieta, María (Autor de correspondencia); Rodríguez-Núñez, A.; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN: 0885-3924 Vol.57 N° 3 2019 págs. 627 - 634
    Resumen
    CONTEXT: Demoralization is a state of existential distress in patients with advanced illness, typically with coping difficulties, feelings of loss of sense, and purpose in life and despair, among other things. The New Demoralization Scale (DS-II) is an evaluation tool for this syndrome, which has recently been reformulated on a shorter scale. OBJECTIVES: The objective of this study was to obtain a Spanish version of the DS-II and to assess its psychometric properties in advanced cancer patients in Spain and a number of Latin American countries. METHODS: Following a translation-back translation process, a validation study and a confirmatory analysis using structural equation models with their corresponding latent constructs were undertaken. Patients completed the DS-II in Spanish (DS-II (es)), the Hospital Anxiety and Depression Scale, and the Edmonton Symptom Assessment System-revised. Reliability was studied according to internal consistency; construct validity and concurrent validity with the Hospital Anxiety and Depression Scale and the Edmonton Symptom Assessment System-revised; discriminant validity using the Karnofsky Performance Status scale; and feasibility, with response ratio and required time. Cutoff points were established, and sensitivity and specificity were studied. RESULTS: The DS-II (es) was obtained. One hundred fifty patients completed the validation study. The confirmatory analysis showed coherence, and all items correlated positively with their subscales and with the overall scale. Cronbach's alpha for the DS-II (es) was 0.88, for the sense and purpose subscale 0.83, and for the coping ability 0.79. Demoralization correlated significantly with emotional distress (rho = 0.73, P < 0.001). The tool distinguished between patients with diverse functional levels (rho = -0.319, P = 0.001). Cutoff points at 10 and 20 out of 32 were established. The scale showed high sensitivity (81.97%) and specificity (80.90%). The prevalence of demoralization was 33% in our sample. CONCLUSION: The Spanish version of the new Kissane DS-II demoralization scale has shown to be valid, reliable, and feasible with adequate psychometric properties.
  • Autores: Trinchete Reigada, Carla Manuela; Centeno Cortés, Carlos; Arantzamendi Solabarrieta, María
    Revista: PALLIATIVE MEDICINE
    ISSN: 0269-2163 Vol.33 N° 1 2019 págs. 125
  • Autores: Noguera Tejedor, Antonio Luís (Autor de correspondencia); Robledano, R.; Garralda Domezain, Eduardo
    Revista: CURRENT OPINION IN SUPPORTIVE AND PALLIATIVE CARE
    ISSN: 1751-4258 Vol.12 N° 4 2018 págs. 495 - 503
    Resumen
    Purpose of review The aim of this review is to understand how palliative care teaching (PCT) as a patient-centered learning model, influences medical undergraduate students' professional development. Recent findings To study PCT medical undergraduate students' learning experiences, we have employed the medical teaching concept, 'hidden curriculum,' as a way of describing attitudes and behavior conveyed implicitly by palliative care educators. Fifteen studies were selected: ten of those studies used a qualitative approach; two are theoretical explanations of the topic explored, one guideline, one review and just one quantitative study, made up the review. Medical undergraduate students reported that after PCT, they felt they had acquired better attitudes for effective integration with the patient, such as empathy or holistic care; ethical principles, such as respect or humanization of their clinical practice; and commitment to an improvement in competences, such as self-awareness or self-esteem. They also reported improved behavior in effective integration with patients, such as communication, caring for patients' families, and when addressing psychosocial, cultural and spiritual aspects; their commitment to improvement in competences, such as dealing with emotions and uncertainty; they learned team work as an effective way to interact within the health system; and to become more reliable, making themselves more available and dedicating enough time to each patient. Summary PCT seems to be an effective way of fostering medical undergraduate students' patient-centered professional development.
  • Autores: Pallotti, M. C. (Autor de correspondencia); Noguera Tejedor, Antonio Luís; Rhee, J. Y.; et al.
    Revista: BMJ SUPPORTIVE & PALLIATIVE CARE
    ISSN: 2045-435X Vol.8 N° 3 2018 págs. 356- +
  • Autores: Girbau, M. B. (Autor de correspondencia); Monedero Rodríguez, Pablo; Centeno Cortés, Carlos
    Revista: ANALES DEL SISTEMA SANITARIO DE NAVARRA
    ISSN: 1137-6627 Vol.41 N° 2 2018 págs. 283 - 284
  • Autores: Rhee, J. Y. (Autor de correspondencia); Foley, K.; Morrison, R. S.; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN: 0885-3924 Vol.55 N° 5 2018 págs. E2 - E4
  • Autores: Bush, S. H. (Autor de correspondencia); Lawlor, P. G.; Ryan, K. ; et al.
    Revista: ANNALS OF ONCOLOGY
    ISSN: 0923-7534 Vol.29 2018 págs. 143 - 165
  • Autores: Yennurajalingam, S. (Autor de correspondencia); Rodrigues, L. F.; Shamieh, O. M.; et al.
    Revista: ONCOLOGIST
    ISSN: 1083-7159 Vol.23 N° 4 2018 págs. 501 - 506
    Resumen
    Background. There are limited data on illness understanding and perception of cure among advanced cancer patients around the world. The aim of the study was to determine the frequency and factors associated with inaccurate perception of curability among advanced cancer patients receiving palliative care across the globe. Materials and Methods. Secondary analysis of a study to understand the core concepts in end-of-life care among advanced cancer patients receiving palliative care from 11 countries across the world. Advanced cancer patients were surveyed using a Patient Illness Understanding survey and Control Preference Scale. Descriptive statistics and multicovariate logistic regression analysis were performed. Results. Fifty-five percent (763/1,390) of patients receiving palliative care inaccurately reported that their cancer is curable. The median age was 58, 55% were female, 59% were married or had a partner, 48% were Catholic, and 35% were college educated. Sixty-eight percent perceived that the goal of therapy was "to get rid of their cancer", and 47% perceived themselves as "seriously ill". Multicovariate logistic regression analysis shows that accurate perception of curability was associated with female gender (odds ratio [OR] 0.73, p= .027), higher education (OR 0.37, p< .0001), unemployment status (OR 0.69, p= .02), and being from France (OR 0.26, p< .0001) and South Africa (OR 0.52, p= .034);
  • Autores: Rullán, M. (Autor de correspondencia); Arantzamendi Solabarrieta, María; Carvajal Valcárcel, Ana; et al.
    Revista: PALLIATIVE & SUPPORTIVE CARE
    ISSN: 1478-9523 Vol.16 N° 1 2018 págs. 73-79
    Resumen
    ICS ATLANTES The PDI has intrinsic therapeutic value and is useful in clinical practice, and it is also a way of examining issues related to dignity and the meaning of life within the context of advanced-stage illness. There is a need for studies that examine patient experiences through a PDI-based intervie
  • Autores: Rhee, J. Y.; Garralda Domezain, Eduardo; Namisango, E.; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN: 0885-3924 Vol.56 N° 2 2018 págs. 230 - 238
    Resumen
    CONTEXT: To date, there is no study comparing palliative care (PC) development among African countries. OBJECTIVE: To analyze comparatively PC development in African countries based on region-specific indicators. METHODS: Data were obtained from the APCA Atlas of PC in Africa and a comparative analysis conducted. Nineteen indicators were developed and defined through qualitative interviews with African PC experts and a two-round modified Delphi consensus process with international experts on global PC indicators. Indicators were grouped by the WHO public health strategy for PC dimensions. These indicators were then sent as a survey to key informants in 52/54 African countries. Through an expert weighting process and ratings from the modified Delphi, weights were assigned to each indicator. RESULTS: Surveys were received from 89% (48/54) of African countries. The top three countries in overall PC development were, in order, Uganda, South Africa, and Kenya. Variability existed by dimension. The top three countries in specialized services were Uganda, South Africa, and Nigeria; in policies, it was Botswana followed by parity among Ethiopia, Rwanda, and Swaziland; in medicines, it was Swaziland, South Africa, then Malawi; in education, it was equivalent between Uganda and Kenya, then Ghana and Zambia. CONCLUSION: Uganda, South Africa, and Kenya are the highest performing countries and were the only ones with composite scores greater than 0.5 (50%). However, not one country universally supersedes all others across all four PC dimensions. The breakdown of rankings by dimension highlights where even high-performing African countries can focus their efforts to further PC development.
  • Autores: Hjermstad, MJ; Aass, N; Aielli, F; et al.
    Revista: BMJ SUPPORTIVE & PALLIATIVE CARE
    ISSN: 2045-435X Vol.8 N° 4 2018 págs. 456 - 467
    Resumen
    Objectives Palliative care (PC) services and patients differ across countries. Data on PC delivery paired with medical and self-reported data are seldom reported. Aims were to describe (1) PC organisation and services in participating centres and (2) characteristics of patients in PC programmes. Methods This was an international prospective multicentre study with a single web-based survey on PC organisation, services and academics and patients¿ self-reported symptoms collected at baseline and monthly thereafter, with concurrent registrations of medical data by healthcare providers. Participants were patients ¿18 enrolled in a PC programme. Results 30 centres in 12 countries participated; 24 hospitals, 4 hospices, 1 nursing home, 1 home-care service. 22 centres (73%) had PC in-house teams and inpatient and outpatient services. 20 centres (67%) had integral chemotherapy/radiotherapy services, and most (28/30) had access to general medical or oncology inpatient units. Physicians or nurses were present 24 hours/7 days in 50% and 60% of centres, respectively. 50 centres (50%) had professorships, and 12 centres (40%) had full- time/part-time research staff. Data were available on 1698 patients: 50% females; median age 66 (range 21¿97); median Karnofsky score 70 (10¿ 100); 1409 patients (83%) had metastatic/ disseminated disease; tiredness and pain in the past 24 hours were most prominent. During follow-up, 1060 patients (62%) died; 450 (44%) <3 months from inclusion and 701 (68%)
  • Autores: Rhee, J. ; Garralda Domezain, Eduardo; Centeno Cortés, Carlos
    Revista: MEDICINA PALIATIVA
    ISSN: 1134-248X Vol.25 N° 3 2018 págs. 119 - 120
  • Autores: Centeno Cortés, Carlos; Sitte, T.; de Lima, L.; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN: 1096-6218 Vol.21 N° 10 2018 págs. 1398-1407
    Resumen
    Resumen Contexto: La Academia Pontificia de la Vida (PAV) es una institucion academica de la Santa Sede (Vaticano) cuyo objetivo es promover una vision catolica de la etica biomedica. La PAV invito a una serie de expertos en Cuidados Paliativos (CP) de todo el mundo, de todas las creencias, a desarrollar recomendaciones estrategicas para el desarrollo global de CP (Grupo PAL-LIFE). Diseno: Trece expertos internacionales reconocidos por su actividad promotora global de CP participaron en un estudio Delphi on-line. En un proceso de cuatro rondas, se pidio a los participantes que identificasen los grupos de interes o instituciones claves para la promocion de CP y que propusieran, para cada uno de ellos, recomendaciones estrategicas para el desarrollo de CP. Cada ronda incorporaba los comentarios de las rondas previas hasta lograr el consenso en las recomendaciones mas importantes. En una ultima fase, al grupo de expertos se le solicito la jerarquizacion por importancia de los grupos clave en una escala de 1 a 13. Tambien se solicitaron sugerencias concretas para la implementacion de las recomendaciones. Mediante analisis cluster se ordenaron los grupos de interes en dos niveles de importancia para el desarrollo de CP. Resultados: Trece recomendaciones fueron seleccionadas como las mas importantes (una por cada grupo clave). Las recomendaciones para los grupos mejor puntuados fueron: (1) Responsables Politicos: garantizar el acceso universal a los CP; (2) Academia: ofrecer cursos obligatorios de CP en el pregrado; (3) Profesionales sanitarios: promover una certificacion adecuada; (4) Hospitales e Instituciones sanitarias: asegurar el acceso a medicamentos de CP; y (5) Asociaciones de CP: ser promotoras eficaces y trabajar con los gobiernos en la implementacion de las recomendaciones internacionales sobre CP. Tambien se presentan recomendaciones para los ocho grupos clave restantes. Discusion: Este documento representa la posicion oficial de la PAV en lo que respecta a estrategias de promocion para el desarrollo de los CP en el mundo.
  • Autores: Rhee, J.; Garralda Domezain, Eduardo; Namisango, E.; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN: 0885-3924 Vol.55 N° 5 2018 págs. 1313 - 1320
    Resumen
    CONTEXT: Factors contributing to and impeding palliative care (PC) development in Africa can provide insights into current strategies for advancing PC. OBJECTIVES: To identify key factors affecting PC development in African countries from in-country PC experts' perspectives. METHODS: Sixteen PC experts from seven African countries undertook semi-structured interviews on PC development in their respective countries. An interpretive description approach was adopted, with data analyzed using constant comparison. RESULTS: Emerged themes included: drivers, strengths, challenges, and aspirations for PC development in Africa. Drivers included advocates and pioneering organizations, HIV/AIDS, culture of caregiving, and the World Health Assembly PC Resolution. Strengths included community health workers, the special role of nurses, diversity of services, and short training courses. Challenges included lack of PC education, lack of standardization in implementation, limited availability of and/or accessibility to morphine, poverty and disease burden, and lack of funding for PC. Aspirations included integration of PC, specialization in PC, nurse prescribing, and strong partnerships with Ministries of Health. Factors already highlighted in the literature were only briefly discussed. CONCLUSION: The key factors underpinning PC development in the seven countries contributed to the beginnings of PC in Africa, fueled by advocates that built on existing strengths to maximize opportunities
  • Autores: Johnson, M. J.; Jamali, A.; Ross, J.; et al.
    Revista: THORAX
    ISSN: 0040-6376 Vol.73 N° 9 2018 págs. 880 - 883
    Resumen
    The inter-rater/test-retest reliability and construct validity of a palliative care needs assessment tool in interstitial lung disease (NAT:PD-ILD) were tested using NAT:PD-ILD-guided video-recorded consultations, and NAT:PD-ILD-guided consultations, and patient and carer-report outcomes (St George's Respiratory Questionnaire (SGRQ)-ILD, Carer Strain Index (CSI)/Carer Support Needs Assessment Tool (CSNAT)). 11/16 items reached at least fair inter-rater agreement; 5 items reached at least moderate test-retest agreement. 4/6 patient constructs demonstrated agreement with SGRQ-I scores (Kendall's tau-b, 0.24-20.36; P<0.05). 4/7 carer constructs agreed with the CSI/CSNAT items (kappa, 0.23-20.53). The NAT:PD-ILD is reliable and valid. Clinical effectiveness and implementation are to be evaluated. The tool is available through the The National Institute for Health and Care Excellence (NICE).
  • Autores: Wilson, D. M. (Autor de correspondencia); Brow, R.; Playfair, R.; et al.
    Revista: SOCIETIES
    ISSN: 2075-4698 Vol.8 N° 4 2018 págs. 108
    Resumen
    Healthcare services are one of the twelve determinants of population health. While all types of healthcare services are important, timely access to hospital-based care when needed is critical. For three decades, long waits and wait lists for hospital admission and inpatient care have been a concern in Canada. Undersupply of hospital beds to meet population needs may be the cause of this as hospitals were downsized due to government funding cutbacks and hospital expansion has not occurred since despite population growth and aging. The availability of hospital beds for palliative population health needs may therefore be an issue, particularly as longstanding concern exists about terminally-ill and dying people being frequently admitted to hospital and having long hospital stays. A decline in hospital deaths in many developed countries, including Canada, could indicate that palliative population needs for hospital-based care are not being met. This paper compares the number of hospitals and hospital beds that exist in 9 Canadian provinces and 15 developed countries in relation to population and spatial considerations in an attempt to determine an optimal number of hospital beds for the general public and thus also palliative population health needs. Methods: Document analysis. Publicly-available hospital, population, and geographic information was sought for 9 Canadian provinces and 15 developed countries and compared. Results: Major differences in citizen to hospital bed ratios and citizen to hospital ratios across provinces and countries were found. The availability of hospitals and hospital beds clearly varies. Conclusion: Some regions may have too few hospitals and hospital beds to meet the palliative and other care needs of their citizens. Sufficient beds should exist so necessary admissions to hospital can occur without harmful delay.
  • Autores: Yennurajalingam, S. (Autor de correspondencia); Rodrigues, L. F.; Shamieh, O. M.; et al.
    Revista: PALLIATIVE MEDICINE
    ISSN: 0269-2163 Vol.32 N° 4 2018 págs. 870 - 880
    Resumen
    Background: Understanding patients' decision control preferences is important in providing quality cancer care. Patients¿ decisional control preference can be either active (patients prefer to make decisions themselves), shared (collaborative between patient, their physician, and/or family), or passive (patients prefer that the decisions are made by either the physician and/or their family). Aim: To determine the frequency and predictors of passive decision control preferences among advanced cancer patients. We also determined the concordance between actual decision-making and decision control preferences and its association with patient satisfaction. Design: In this cross-sectional survey of advanced cancer patients referred to palliative care across 11 countries, we evaluated sociodemographic variables, Control Preference Scale, and satisfaction with the decisions and care. Results: A total of 1490 participants were evaluable. Shared, active, and passive decision control preferences were 33%, 44%, and 23%, respectively. Passive decision control preferences (odds ratio, p value) was more frequent in India (4.34, <0.001), Jordan (3.41, <0.001), and France (3.27, <0.001). Concordance between the actual decision-making and decision control preferences was highest in the United States (k=0.74) and lowest in Brazil (0.34).
  • Autores: Noguera Tejedor, Antonio Luís; Bolognesi, D.; Garralda Domezain, Eduardo; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN: 1096-6218 Vol.21 N° 11 2018 págs. 1621 - 1626
    Resumen
    Background: In Europe in recent decades, university teaching of palliative medicine (PM) has evolved. In some countries it has been introduced as a compulsory subject in all medical schools, but in a majority of countries it remains an isolated subject at few universities. Objective: To explore how PM has been introduced into the curricula and how it is currently being taught at different European universities. Method: Case study method using face-to-face semistructured interviews with experienced PM professors, comparing how they have developed PM undergraduate programs at their universities. Results: An intentional sample of eight university professors from Spain, France, UK, Italy, Hungary, Sweden, Germany, and Poland was chosen. The introduction of PM in the universities depends on the existence of a favorable social and political context in relation to palliative care and the initiative of pioneers, trusted by students, to push this education forward. A PM curriculum frequently starts as an optional subject and becomes mandatory in a short period. In the reported universities, PM uses a wide variety of teaching methods, such as lectures, workshops, role-plays, and discussions. PM assessment included tests, discussions, reflections, portfolios, and research works. According to respondents' opinions, lack of recognition, funding, and accredited teachers, along with competition from other curricula, are the main barriers for palliative medicine teaching development at universities. Conclusion: Diverse paths and tools have been identified for PM teaching in Europe. The described cases may shed light on other medical schools to develop PM curricula.
  • Autores: Rhee, J. Y. (Autor de correspondencia); Garralda Domezain, Eduardo; Namisango, E.; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN: 1096-6218 Vol.21 N° 3 2018 págs. 342-353
  • Autores: Barahona, E. ; Pinhao, R. ; Galindo, V. ; et al.
    Revista: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
    ISSN: 0885-3924 Vol.55 N° 3 2018 págs. 968 - 972
    Resumen
    Background. Although Memorial Delirium Assessment Scale (MDAS) is a successful tool for delirium evaluation and monitoring, it is nevertheless important to determine whether cutoff scores vary according to the studied population. The main objective of this study was to evaluate the diagnostic sensitivity of the recently validated Spanish version of the MDAS. The secondary objective was to analyze possible diagnostic differences when used in a hospice or general hospital setting. Methodology. A prospective study was conducted with advanced cancer patients in two settings (hospice and general hospital). A diagnosis of delirium was established according to clinical criteria and the Confusion Assessment Method. Sensitivity (S), specificity (Sp), positive predictive value, and negative predictive value were determined according to the receiver operating characteristics curve. The MDAS values for different centers were studied using nonparametric tests (Mann-Whitney). Results. A total of 67 patients were included, 28 of whom had been diagnosed with delirium (15/40 hospice and 13/27 general hospital). The mean MDAS scores were 13.6 and 5.5 for the delirium and nondelirium groups, respectively. A cutoff score of 7 gave the optimal screening diagnosis balance (S 92.6%, Sp 71.8%, positive predictive value 70.1%, and negative predictive value 93.3%). Diagnoses of anxiety and depression were not related with delirium (P <= 0.44). A diagnosis of dementia was related to delirium (P <= 0.052) but did not influence the diagnostic sensitivity of MDAS (P <= 0.26). No differences were found between hospice and general hospital settings as regards the diagnostic sensitivity of MDAS. Conclusion. A screening cutoff of 7 appears to be optimal for MDAS Spanish version. No differences were found between advanced cancer patients cared for in a hospice or general hospital. However, more research is required to define the MDAS cutoff for patients with advanced cancer and dementia. (C) 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
  • Autores: Errasti Ibarrondo, María Begoña; Jordán, J. A.; Pérez Diez del Corral, Mercedes; et al.
    Revista: JOURNAL OF ADVANCED NURSING
    ISSN: 0309-2402 Vol.74 N° 7 2018 págs. 1723 - 1734
    Resumen
    Aims To offer a complete outlook in a readable easy way of van Manen's hermeneutic¿phenomenological method to nurses interested in undertaking phenomenological research. Background Phenomenology, as research methodology, involves a certain degree of complexity. It is difficult to identify a single article or author which sets out the didactic guidelines that specifically guide research of this kind. In this context, the theoretical¿practical view of Max van Manen's Phenomenology of Practice may be seen as a rigorous guide and directive on which researchers may find support to undertake phenomenological research. Design Discussion paper. Data sources This discussion paper is based on our own experiences and supported by literature and theory. Our central sources of data have been the books and writings of Max van Manen and his website ¿Phenomenologyonline¿. Implications for nursing The principal methods of the hermeneutic¿phenomenological method are addressed and explained providing an enriching overview of phenomenology of practice. A proposal is made for the way the suggestions made by van Manen might be organized for use with the methods involved in Phenomenology of Practice: Social sciences, philosophical and philological methods. Thereby, nurse researchers interested in conducting phenomenological research may find a global outlook and support to understand and conduct this type of inquiry which draws on the art.
  • Autores: Centeno Cortés, Carlos; Sitte, T.; de-Lima, L.; et al.
    Revista: JOURNAL OF PALLIATIVE MEDICINE
    ISSN: 1096-6218 Vol.21 N° 10 2018 págs. 1389 - 1397
    Resumen
    ackground: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican), which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC (PAL-LIFE group). Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In a last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13-point scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development. Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round, and, of those, 13 recommendations were chosen as the most important (1 for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top 5 groups were as follows: (1) Policy makers: Ensure universal access to PC; (2) Academia: Offer mandatory PC courses to undergraduates; (3) Healthcare workers: PC professionals should receive adequate certification; (4) Hospitals and healthcare centers: Every healthcare center should ensure access to PC medicines; and (5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. A recommendation for each of the remaining eight groups is also presented. Discussion: This white paper represents a position statement of the PAV developed through a consensus process in regard to advocacy strategies for the advancement of PC in the world.
  • Autores: Tobalina Pulido, L.; Pons Izquierdo, Juan José
    Libro: Educar para transformar: Innovación pedagógica, calidad y TIC en contextos formativos
    ISSN: 978-84-1122-469-7 2023 págs. 3475 - 3480
    Resumen
    La 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.
  • Autores: Salas Moreira, Ana Paula; Gómez Baceiredo, Beatriz
    Libro: Comunicación y salud: el gran reto del siglo XXI
    ISSN: 978-84-7074-734-2 2023 págs. 67 - 82
    Resumen
    En un esfuerzo por encontrar una vía de comunicación alternativa con la sociedad para que entienda qué son los cuidados paliativos,, el proyecto EnPositive-PAL llevó a cabo un estudio en el 2020 con estudiantes universitarios. Se decidió trabajar con universitarios por la variedad de sus perfiles y porque son los futuros profesionales de la sociedad, lo que permite empezar el cambio desde edades tempranas. En el estudio se exploraron las percepciones de estos estudiantes sobre los cuidados paliativos. Se confirmó que no entienden los cuidados paliativos y los ven como un sinónimo de muerte (Reigada et al., 2021). Además, para los estudiantes de carreras no relacionadas con el sector salud, el tema de los cuidados paliativos era poco común. Sin embargo, también descubrieron que una vez que entendían lo que eran, los estudiantes consideraban que los cuidados paliativos eran necesarios y beneficiosos (Reigada et al., 2021). En este capítulo se muestran los resultados de la intervención piloto.
  • Autores: Garralda Domezain, Eduardo; Surges, S.; Busa, C.; et al.
    Libro: The role of palliative sedation in palliative care
    ISSN: 9789090377414 2023 págs. 39 - 44
  • Autores: Pons Izquierdo, Juan José
    Libro: Re-visioning Geography. Supporting the SDGs in the post-COVID era
    ISSN: 978-3-031-40746-8 2023 págs. 57 - 73
    Resumen
    Story maps are one of the most common and useful ways to conduct virtual field trips or virtual tours, in places both near and far. Though new, they are growing rapidly and cover many themes, including the 2030 Agenda and Sustainable Development Goals (SDGs). The ease with which story maps can bring environmental case studies into the classroom in a visually attractive way, while combining different materials (maps, texts, photos, videos, etc.) on one webpage and promoting user-interaction, make them an excellent teaching tool. They can also be employed in many non-academic contexts, such as the dissemination or awareness of values among the population as a whole or among specific groups. Although there are thousands of environmental story maps, related research and scientific articles have been scarce. Through a review of the main bibliographic databases (in Science and Scopus), the importance of story maps in support of the SDGs is analysed and their main characteristics described: approaches, tools used, methodologies, training levels, etc. The study finds growing interest in story maps relating to environmental issues among researchers. There is a particular focus on education: half deal with various aspects of story maps as a pedagogical tool. Finally, this paper highlights that the vast majority of articles address specific case studies, rather than more general issues.
  • Autores: Pons Izquierdo, Juan José; Montoro Gurich, Carolina
    Libro: Libro de trabajos aportados al XVI Coloquio de Geografía Urbana Málaga-Melilla
    ISSN: 978-84-930012-9-2 2022 págs. 434 - 446
    Resumen
    Las áreas urbanas españolas están inmersas en un fuerte proceso de envejecimiento demográfico, que afecta prácticamente a todas ellas y que las acerca cada vez más a los niveles alcanzados por las zonas rurales del país. A través de la explotación de los datos de la Estadística del Padrón Continuo entre los años 2012 y 2021, a escala de sección censal, se aborda la evolución de la distribución de los mayores (personas de 65 y más años) por área urbana, así como el análisis de las diferencias en la concentración espacial a escala intraurbana, con la intención de ver si la población envejecida se reparte uniformemente por cada una de las ciudades o bien se encuentra polarizada en determinados barrios. El resultado del análisis realizado muestra un envejecimiento cada vez mayor del mundo urbano, una diferencia creciente entre las áreas urbanas más envejecidas (noroeste peninsular) y las más jóvenes (costa mediterránea) y un ligero descenso de la concentración de los mayores en secciones censales concretas y, por tanto, un reparto más homogéneo de estas personas en el conjunto de las áreas urbanas.
  • Autores: Pons Izquierdo, Juan José
    Libro: El papel del territorio y de las políticas territoriales en la Estrategia de Recuperación, Trasformación y Resiliencia
    ISSN: 978-84-9133-477-4 2022 págs. 507 - 519
    Resumen
    La 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.
  • Autores: Pons Izquierdo, Juan José
    Libro: Cuestiones transversales en la innovación de la docencia y la investigación de las ciencias sociales y jurídicas: Especial referencia al impacto del COVID-19, las nuevas tecnologías y metodologías, las perspectivas de género y la diversidad
    ISSN: 978-84-1377-591-3 2021 págs. 757 - 775
    Resumen
    El período de la pandemia COVID-19 ha servido para ensayar la utilización de herramientas digitales que pretenden situar al estudiante en lugares a los que no se podía acceder por las restricciones sanitarias, recreando de alguna manera la visita y ofreciendo los mismos contenidos que de otra manera se hubieran aprendido in situ. Se habla así de excursiones o visitas virtuales, que pretenden ser un sustitutivo del acceso presencial a los lugares concretos que interesa conocer. Este no es un aspecto novedoso, ya que se viene trabajando en la línea de nuevos tipos de formatos docentes desde hace mucho tiempo, aunque, bien es cierto, que la pandemia ha multiplicado los ejemplos de aplicación. En el ámbito concreto de las Ciencias de la Tierra, el desarrollo de la tecnología de los sistemas de información geográfica online ha supuesto la llegada de toda una serie de herramientas de trabajo, que permiten al docente acercar el territorio hasta las aulas, utilizando para ello mapas interactivos y otros materiales como fotografías, vídeos, textos y un sinfín de materiales docentes.
  • Autores: Centeno Cortés, Carlos; Payne, S.; Garralda Domezain, Eduardo
    Libro: Oxford textbook of Palliative Medicine
    ISSN: 9780198821328 2021 págs. 3 - 13
  • Autores: Clark, D.; Centeno Cortés, Carlos; Clelland, D.; et al.
    Libro: Global atlas of palliative care
    ISSN: 978-0-9928277-2-4 2020 págs. 45 - 58
    Resumen
    The Global Atlas of Palliative Care is a source of essential information on the status of palliative care worldwide. This second edition of the Global Atlas reveals some of the changes that have occurred since the first edition was published in 2014. For instance, we now have a better idea of how many people need palliative care worldwide. In the 1st edition a conservative estimate of 40 million has now been more accurately estimated as over 56.8 million, including 25.7 million in the last year of life.
  • Autores: Trinchete Reigada, Carla Manuela; Pelttari, L.; Radbruch, L.; et al.
    Libro: EAPC Atlas of palliative care in Europe 2019
    ISSN: 9789463883443 2019 págs. 77 - 80
  • Autores: Trinchete Reigada, Carla Manuela; Froggatt, K.; Van-den-Block, L.
    Libro: EAPC Atlas of palliative care in Europe 2019
    ISSN: 9789463883443 2019 págs. 73 - 76
  • Autores: Arantzamendi Solabarrieta, María; Belar Beitia, Alazne; Rojí Buqueras, María del Rocío
    Libro: Textbook of Palliative Care
    ISSN: 978-3-319-77738-2 2019 págs. 1 - 24
    Resumen
    Textbook of Palliative Care is a comprehensive, clinically relevant and state-of-the art book, aimed at advancing palliative care as a science, a clinical practice and as an art. Palliative care has been part of healthcare for over fifty years but we still find ourselves having to explain its nature and practice to colleagues and to the public in general. Healthcare education and training has been slow to recognize the vital importance of ensuring that all practitioners have a good understanding of what is involved in the care of people with serious or advanced illnesses and their families. However, the science of palliative care is advancing and our understanding concerning many aspects of palliative care is developing rapidly. The book is divided into separate sections for ease of use. Over 100 chapters written by experts in their given fields provide up-to-date information on a wide range of topics of relevance to those providing care towards the end of life no matter what the disease may be. We present a global perspective on contemporary and classic issues in palliative care with authors from a wide range of disciplines involved in this essential aspect of care. The Textbook includes sections addressing aspects such as symptom management and care provision, organization of care in different settings, care in specific disease groups, palliative care emergencies, ethics, public health approaches and research in palliative care.
  • Autores: Arantzamendi Solabarrieta, María (Editor); Crespo Sesmero, Mariano Juan (Editor)
    ISSN: 978-84-313-3804-6 2022
    Resumen
    SECCIÓN 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
  • Autores: Pastrana, T.; De-Lima, L.; Sánchez Cárdenas, Miguel Antonio; et al.
    ISSN: 978-0-9989787-4-1 2021
  • Autores: Bouësseau, M. C. (Coordinador); Sánchez Cárdenas, Miguel Antonio; Garralda Domezain, Eduardo; et al.
    ISSN: 978-92-4-003336-8 2021
    Resumen
    Assessing the development of palliative care worldwide: a set of actionable indicators provides a refined set of actionable indicators that can be used by countries to monitor and assess the development of palliative care. The indicators have been identified on the basis of their relevance and feasibility by experts from across the globe. The indicators are applicable to all settings including countries in the very early stages of palliative care development. The target audience of this report includes policy-makers, palliative care programme managers and health-care workers. The closing section of the report is dedicated to detailed support to country stakeholders on the selection and implementation of palliative care indicators at national or sub-national levels.
  • Autores: Arias-Casais, N.; Garralda Domezain, Eduardo; Rhee, J. Y.; et al.
    ISSN: 9789463883443 2019
  • Autores: Arias-Casais, N.; Garralda Domezain, Eduardo; López Fidalgo, Jesús Fernando; et al.
    ISSN: 978-0-9989787-1-0 2019
    Resumen
    List of national-level palliative care indicators providing a specific, evidence-based starting point on the development of palliative care, adding evidence to existence studies and allowing for replication. Furthermore, this allows for assessing national level progress and conducting comparative analysis and prospective studies. Tracking the indicators across time offers the opportunity to pool data data in a same repository that could be prospectively evaluated, allowing for trends in palliative care development at the international level.
  • Autores: Centeno Cortés, Carlos; Sitte, T.; de Lima, L.; et al.
    ISSN: 978-88-266-0295-0 2019

Proyectos desde 2018

  • Título: 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-I00
    Investigador principal: INES OLZA MORENO.
    Financiador: AGENCIA ESTATAL DE INVESTIGACION
    Convocatoria: 2022 AEI Proyectos de Generación del Conocimiento
    Fecha de inicio: 01-09-2023
    Fecha fin: 31-08-2027
    Importe concedido: 57.250,00€
    Otros fondos: Fondos FEDER
  • Título: Patient Dignity Question como intervención para el alivio del sufrimiento: Estudio de metodología mixta en pacientes con enfermedad avanzada
    Código de expediente: PI22/01504
    Investigador principal: MARIA ARANTZAMENDI SOLABARRIETA, ALAZNE BELAR BEITIA.
    Financiador: INSTITUTO DE SALUD CARLOS III
    Convocatoria: 2022 AES Proyectos de investigación
    Fecha de inicio: 01-01-2023
    Fecha fin: 31-12-2025
    Importe concedido: 10.890,00€
    Otros fondos: Fondos FEDER
  • Título: Traducción, adaptación cultural y validación de la escala Person-Centred Practice Inventory-Staff (PCPI-S) y la escala Centred practice inventory-student (PCPI-ST)
    Código de expediente: PI20/01644
    Investigador principal: ANA CARVAJAL VALCARCEL.
    Financiador: INSTITUTO DE SALUD CARLOS III
    Convocatoria: 2020 AES Proyectos de investigación
    Fecha de inicio: 01-01-2021
    Fecha fin: 31-12-2024
    Importe concedido: 58.080,00€
    Otros fondos: Fondos FEDER
  • Título: Dignidad y deseos de morir en pacientes con enfermedad avanzada: estudio de factores asociados y de las vivencias de los pacientes y profesionales
    Código de expediente: PI18/01703
    Investigador principal: CARLOS CENTENO CORTES.
    Financiador: INSTITUTO DE SALUD CARLOS III
    Convocatoria: AES2018 PI
    Fecha de inicio: 01-01-2019
    Fecha fin: 31-12-2022
    Importe concedido: 20.570,00€
    Otros fondos: Fondos FEDER
  • Título: Patrones multimodales de representación del tiempo
    Código de expediente: FFI2015-70876-P
    Investigador principal: CRISTOBAL PAGAN CANOVAS, INES OLZA MORENO.
    Financiador: MINISTERIO DE CIENCIA, INNOVACIÓN Y UNIVERSIDADES
    Convocatoria: 2015 MINECO EXCELENCIA. PROYECTOS I+D
    Fecha de inicio: 01-01-2016
    Fecha fin: 31-12-2018
    Importe concedido: 26.015,00€
    Otros fondos: Fondos FEDER
  • Título: PALCYCLES PALliative Care Yields Cancer welLbEing Support
    Código de expediente:
    Investigador principal: MARIA ARANTZAMENDI SOLABARRIETA
    Financiador: COMISIÓN EUROPEA
    Convocatoria: HORIZON-HLTH-2021-DISEASE-04
    Fecha de inicio: 01-09-2022
    Fecha fin: 31-08-2027
    Importe concedido: 400.500,00€
    Otros fondos: -
  • Título: RESPACC - Research for all palliative care clinicans
    Código de expediente: 2020-1-RO01-KA202-080128
    Investigador principal: CARLOS CENTENO CORTES
    Financiador: COMISIÓN EUROPEA
    Convocatoria: KA202-Strategic partnerships for vocational education and training
    Fecha de inicio: 01-12-2020
    Fecha fin: 30-11-2022
    Importe concedido: 47.478,00€
    Otros fondos: -
  • Título: Palliative sedation
    Código de expediente: 825700
    Investigador principal: CARLOS CENTENO CORTES
    Financiador: COMISIÓN EUROPEA IGC INTERNATIONAL GROWTH CENTRE
    Convocatoria: H2020-SC1-BHC-23-2018
    Fecha de inicio: 01-01-2019
    Fecha fin: 31-12-2023
    Importe concedido: 607.125,00€
    Otros fondos: -
  • Título: ARTE Y TRANSFORMACIÓN SOCIAL
    Investigador principal: RICARDO ISIDRO PIÑERO MORAL
    Financiador: UNIVERSIDAD DE NAVARRA
    Convocatoria: 2020 Convocatoria PIUNA, 2021 Convocatoria PIUNA
    Fecha de inicio: 01-09-2020
    Fecha fin: 31-08-2022
    Importe concedido: 21.500,00€