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Aim. To describe the development of a self-administered questionnaire to study the nursing research culture in a Spanish hospital. Background. There is urgent need to promote nursing research in Spain. To do this, it is imperative to understand the Spanish nursing research culture. As no valid Spanish instrument was available, a new instrument called the Nursing Research Questionnaire was developed. Design. A survey and psychometric approach. Methods. The development and testing of the instrument had three phases which included: identification of concepts and questions; pilot work of the first draft of the tool; and a survey and further test of the instrument. Results. The new instrument was a self-administered questionnaire which contained 43 items divided into three main sections: nurses' research capability; research related activity; and factors influencing research development. The pilot work and the survey results indicated adequate content and face validity of the tool. The internal consistencies of the tool for the four subscales ranged from 0·25-0·93, and the intraclass correlation coefficients in three subscales were over 0·70. Conclusions. This paper describes the development of a self-administered questionnaire to gather information about the nursing research culture in a Spanish hospital. After further refinement, its use will provide information that will contribute to the development of nursing research in Spain. Relevance to clinical practice. The new instrument could be used to provide an understanding of the research culture among nurses in Spain, which will help to design targeted interventions to promote nursing research activity and improve the quality of nursing practice and patient care. [ABSTRACT FROM AUTHOR]

AIM: This paper is a report of a review undertaken to identify, critically analyse and synthesize the psychosocial experience of cancer recurrence for survivors and family members. BACKGROUND: Recurrence of cancer is an event after which life changes for families. Individuals move from being short- or long-term survivors of cancer to being patients once more. Families move from a state of fear of recurrence to one of uncertainty and distress as a result of the new crisis. DATA SOURCES: MEDLINE, CINAHL and CancerLit databases were searched for the period January 1980-2007. Reference lists of papers were conducted for relevant studies. The search terms recurrence, recurrent cancer, experience, survivor and family were searched for separately and in combination. REVIEW METHODS: A narrative review was conducted. Data were categorized in terms of issues during survivorship and concerns after recurrence. RESULTS: Three main categories were identified that explained survivors' and families' experiences of recurrent cancer: (1) fear of recurrence during survivorship, (2) when cancer recurs: families facing new challenges and (3) distress because of recurrence. CONCLUSION: Recurrence is a distressing experience for survivors and families because they have to face again psychosocial effects of cancer, such as uncertainty, distress and concerns about death. Care should not be addressed simply to survivors, but should include the general well-being of families beyond their survivorship and support to manage better psychosocial issues occurring when a member has a recurrence of cancer. [ABSTRACT FROM AUTHOR]

ARANTZAMENDI M. & KEARNEY N. (2004) European Journal of Cancer Care 13, 23–31 The psychological needs of patients receiving chemotherapy: an exploration of nurse perceptions This study explored the perceptions of a group of registered oncology nurses about the psychological needs of patients with cancer receiving chemotherapy and how the nurses meet these. Eight nurses who provided chemotherapy and were working in a local oncology centre participated. A semi-structured interview was used to explore nurses’ perceptions, and how they meet these patients’ needs. The analysis of interview transcripts revealed that these nurses agreed that patients with cancer receiving chemotherapy had psychological needs. Moreover, they were conscious that some of the physical side-effects could have a psychological impact on the patients. Although nurses did not use any assessment tool for psychological assessment, they identified two main stages during the treatment when patients needed more psychological support: at the beginning and at the end of the chemotherapy. They explained how they tried to meet patients’ psychological needs but they also mentioned several factors that influenced the psychological support that patients received. [ABSTRACT FROM AUTHOR]

Background: Discussing death, particularly among future healthcare professionals, remains a challenge. The "Death Café" initiative offers a relaxed setting for such conversations, and this study investigates its educational potential for medical students., Objectives: To assess the effectiveness of "Death Café" as an educational tool for medical students in palliative care, and to understand students' perceptions and reflections on death and end-of-life topics post-participation., Design: An exploratory qualitative design was employed, analyzing reflections submitted by medical students following voluntary participation in a Death Café session., Methods: Medical students from a course on palliative care participated in the "Death Café," a structured yet informal discussion about death in a relaxed café setting. Subsequently, participants submitted written reflections on their experiences. These reflections were analyzed using a thematic analysis method, identifying emerging themes related to the students' perceptions of death, the event, and its impact on their future medical practice., Results: Forty-two students attended the Death Café. Twenty-one reflections were collected from 29 medical students who participated. Most students found the "Death Café" environment conducive to open conversations about death. Key themes included recognizing the fragility of life, the role of medical professionals in end-of-life care, and the personal and professional growth derived from such reflections. The students also highlighted the transformative nature of the event, shifting from discussing death in general to pondering on their roles as future healthcare professionals. Positive feedback indicated the absence of negative comments about the activity, with suggestions provided for future iterations., Conclusion: The "Death Café" serves as an innovative pedagogical approach to medical education, particularly in palliative care teaching. It offers students a platform for sincere dialogue on death and reinforces the significance of integrating innovative methods in medical training. This initiative not only enriches personal understanding but also emphasizes the commitment to holistic patient care., Competing Interests: The authors declare that there is no conflict of interest., (© The Author(s), 2024.)

Background: Understanding the principles and practice of research by health care professionals helps to improve the evidence base for palliative care practice and service delivery. Research is a core competency in palliative care that enables the identification and addressing of problems for patients and their families, establishes best practice and improves ways to manage pain, other symptoms, and concerns. This work was undertaken in the research for all palliative care clinicians (RESPACC) Erasmus+ project. Aim: To identify and develop a set of core research competencies within a structured framework for all members of the multidisciplinary palliative team. Design: A multi-method approach was used including rapid review of literature, Nominal Group Technique, and expert consultation. A quiz to self-assess research competencies outlined within the Framework was produced. Results: The Framework includes 17 competencies organized in 7 domains: The clinical context, Scientific thinking and research design, Ethics and regulatory framework for research, Study and site management, Data management and informatics, Communication and relationships, and Research leadership. In the consultation process 6 of the 17 competencies were considered as required by each individual team member, and 3 to be present within the palliative care team. Conclusion: Using a multi-method approach, the first Palliative Care Research Framework identifying core research competencies for palliative care clinicians has been developed. The aim of the framework was not to transform palliative care clinicians into researchers, but to ensure that clinicians understand the important role of research and its integration into clinical practice.

Background: Palliative care professionals face emotional challenges when caring for patients with serious advanced diseases. Coping skills are essential for working in palliative care. Several types of coping strategies are mentioned in the literature as protective. However, little is known about how coping skills are developed throughout a professional career., Aim: To develop an explanatory model of coping for palliative care professionals throughout their professional career., Design: A grounded theory study. Two researchers conducted constant comparative analysis of interviews., Setting/participants: Palliative care nurses and physicians across nine services from Spain and Portugal ( n  = 21). Theoretical sampling included professionals who had not continued working in palliative care., Results: Professionals develop their coping mechanisms in an iterative five-stage process. Although these are successive stages, each one can be revisited later. First: commencing with a very positive outlook and emotion, characterized by contention. Second: recognizing one's own vulnerability and experiencing the need to disconnect. Third: proactively managing emotions with the support of workmates. Fourth: cultivating an integrative approach to care and understanding one's own limitations. Fifth: grounding care on inner balance and a transcendent perspective. This is a transformative process in which clinical cases, teamwork, and selfcare are key factors. Through this process, the sensations of feeling overwhelmed sometimes can be reversed because the professional has come to understand how to care for themselves., Conclusions: The explicative model presents a pathway for personal and professional growth, by accumulating strategies that modulate emotional responses and encourage an ongoing passion for work., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: 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., (© 2024. The Author(s).)

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., Trial Registration: This study is registered at Clinicaltrials.gov since January 22, 2021, registration number: NCT04719702., (© 2023. The Author(s).)

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., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s), 2023.)

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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Introduction: Family members significantly value the professional and humane support that medical teams provide in the process of caring for patients with advanced diseases. Communication is currently changing, making it of interest to explore technology's possible influence on communication and on the care relationship. It remains unknown whether this can vary based on increased use of technology in patient care. Using communication 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 professional's support (i.e., accompaniment, comfort) and the professional's qualities (i.e., professionalism, kindness). 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 professionals' 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., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2022 Elsevier B.V. All rights reserved.)

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 health care. 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.

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.

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 ® ., 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.

Background: Nominal group technique (NGT) is a well-established research method for establishing consensus. Owing to the COVID-19 pandemic, research methods need to be adapted to engage with participants online. Objective: To determine the feasibility and acceptability of adapting NGT to an online format. Setting: Palliative care clinicians ( n  = 31) in Greece, Romania, and Spain. Methods: NGT discussions were used to elicit palliative care clinicians' opinions, and to rank priorities regarding their understanding and needs about clinical research. Preliminary online training of country-based facilitators was followed by content analysis of debriefing reports to capture learning related to the online NGT format. Results/Implementation: Three NGT sessions used online platforms (Zoom/MS Office/Mentimeter) for the meetings. Analysis of the facilitator reports generated three themes: preparation/facilitation/timing; optimizing technology; and interactions. Conclusions: Conducting NGT meetings online is viable and may be advantageous when compared with traditional face-to-face meetings, but requires careful preparation for participants to contribute effectively.

Objectives: The wish to die (WTD) is a complex experience sometimes accompanied by intention to hasten death. The aim of this study is to identify the predictive factors for WTD and hastening death intention (HDI) in Spanish patients with advanced illness., Methods: This is a subanalysis of a larger cross-sectional study conducted on patients experiencing advanced illness (N=201). Sociodemographic data and data related to symptom burden (Edmonton Symptom Assessment System-Revised), depressive and anxious symptoms (Hospital Anxiety and Depression Scale), demoralisation (Spanish version of the Demoralisation Scale), perceived loss of dignity (Patient Dignity Inventory) and WTD (Assessing Frequency and Extent of Desire to Die) were collected. The analysis used univariate and multivariate logistic regression., Results: The prevalence of WTD in the sample was 18%, with 8 out of 36 patients reporting HDI. The independent factors predictive of WTD were (1) knowledge of approximate prognosis (OR=4.78; 95% CI 1.20 to 10.8; p=0.001); (2) symptom burden (OR=1.05; 95% CI 1.00 to 1.09; p=0.038); and (3) the Demoralisation Scale subsection 'lack of meaning and purpose in life' (OR=1.61; 95% CI 1.30 to 1.99; p=0.000). An independent predictive factor for HDI was the Demoralisation Scale subsection 'patients' distress and coping abilities' (OR=1.47; 95% CI 1.04 to 2.08; p=0.028), while having religious beliefs was a protective factor (OR=0.13; 95% CI0.17 to 0.97; p=0.047)., Conclusions: Demoralisation was found to be the only common triggering factor for WTD and HDI, although experiences share certain features. Identification of the predictive factors for WTD and HDI may contribute to their prevention and management., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Pedagogical strategies in palliative care are diverse and mainly aimed to understand patients with advanced disease and improving their care. Phenomenological texts are stories intended to evoke lived experiences and help understand complex situations., Aim: To determine what thoughts, experiences and feelings nursing students have when reading a phenomenological text about the experience of a person living with advanced cancer., Design and Method: A descriptive qualitative study with palliative care students of the nursing degree at two university centres. The students reflected on a phenomenological text. A thematic analysis of the 14 reflections was performed. The reflections were analysed inductively and independently, and periodic sessions were held to discuss the identified categories and topics., Results: 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 with advanced disease makes students aware of the importance of the body; the disease as an individual transformative process challenges students; and the experiences of people with advanced cancer make students aware of the importance of how they care for patients and their families., Conclusion: The reading of a phenomenological text on the experience of living with advanced cancer may be a teaching method that can generate experiences that promote reflective and experiential learning in nursing students. It seems to be a useful tool for teaching in subjects focusing on person-centred care., (Copyright © 2021 Elsevier Ltd. All rights reserved.)

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, χ 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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Introduction: Palliative care continues to be misunderstood within the world of healthcare. Palliative care professionals are key agents for promoting a greater understanding of their field. This study aims to examine the messages, both implicit and explicit, that palliative care professionals transmit about themselves and their work within their teams and to other health professionals., Methods: Focused ethnographic secondary analysis, exploring the interactions of palliative care 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 palliative care professionals perceive themselves as potential influencers and explicitly transmit the reasons for their intervention. Otherwise, others will perpetuate the myths, misunderstandings, and lack of a positive reputation for palliative care.

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., (Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Emotional exhaustion is a problem many palliative care (PC) professionals face during their activity. Art therapy is emotionally beneficial for palliative patients who experience suffering, but its impact on professionals' experience of suffering has not been researched. Objective: 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 PC 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 such as "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/distance themselves; and how they consider circumstances as a learning process and source of self-nurturing. Participants described art therapy as calming, healing the most intense feelings, and feeding the soul. Conclusion: Professionals reacted immediately with enthusiasm to art therapy, positively assessing its effects. Some attributed effects are in line with daily strategies of connecting with one's inner self. Others are about promoting self-awareness and inner peace, while providing healing opportunities. Art therapy may play a role in self-care for the PC professional, and should be researched further. Research Ethics Committee of the Universidad de Navarra approved the study (Number: 2019.167)., Competing Interests: No competing financial interests exist., (© María Arantzamendi et al., 2021; Published by Mary Ann Liebert, Inc.)

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.

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.

Background: Despite 50 years of modern palliative care (PC), a misunderstanding of its purpose persists. The original message that PC is focused on total care, helping to live until the person dies, is being replaced and 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 h 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.

Introduction: The benefits of palliative care rely on how healthcare professionals assess patients' needs in the initial encounter/s; crucial to the design of a personalised therapeutic plan. However, there is currently no evidence-based guideline to perform this needs assessment. 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 qualitative study will purposively sample a subset of participants to add 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., Ethics and Dissemination: Ethical approval for this study has been granted by the university research ethics committee where the study will be carried out (approval reference MED-2018-10). Dissemination will be informed by the results obtained and communication will occur throughout., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Introduction : Quality medical education, centered on a 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 mixed method. The inventory is built based on the themes that emerged from the analysis of four qualitative studies about nursing and medical students' perceptions related to palliative care teaching interventions (see Ballesteros et al. 2014, Centeno et al. 2014 and 2017, Rojí et al. 2017). The structure and psychometrics of the inventory obtained is tested in two different surveys with two different groups of medical students. Inventory reliability and construct validity are tested in the first survey group. To verify the inventory structure, a confirmatory factor analysis is performed in a second survey group. Results : The inventory has 33 items and seven dimensions: a 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 comparative fit index (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 new inventory is grounded on student's palliative care teaching experiences and seems to be valid to assess student's professional development.

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.

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., (Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Aim: To 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., Background: Studying 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., Evaluation: A 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 Issues: A 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., Conclusions: Expressions 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 Management: Gratitude 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., (© 2018 John Wiley & Sons Ltd.)

Phenomenology of practice is a useful, rigorous way of deeply understanding human phenomena. Therefore, it allows research to be conducted into nursing's most sensitive and decisive aspects. While it is a widely used research approach and methodology in nursing, it is seldom addressed and made use of in its practical and applied value. This article aimed to approach the global outlook of van Manen's hermeneutic-phenomenological method to better understand its theoretical background and to address and support the contribution this method can make to nursing, if rigorously applied. For a professional discipline like nursing, van Manen's approach is especially interesting because, in addition to contributing to the body of knowledge of nursing, it provides a special kind of knowledge that allows nurses to act in a more reflective manner, and with tact and skill, in certain situations and relationships that arise in their daily practice. A more in-depth understanding of this research methodology may help nurse-researchers make good use of it and also harness knowledge derived from this type of research. This comes as a result of assuming that phenomenological texts, the final product of the research, have tremendous educational potential for people who read them carefully., (© 2018 John Wiley & Sons Ltd.)

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., Conclusion: The approach in this article may help nurse scholars and researchers reach an overall, encompassing perspective of the main methods and activities involved in doing phenomenological research. Nurses interested in doing phenomenology of practice are expected to commit with reflection and writing., (© 2018 John Wiley & Sons Ltd.)

Objective: The Patient Dignity Inventory (PDI) evaluates sources of distress related to the feeling of loss of dignity and was designed for patients at the end of life. The aim of the present work was to generate a better understanding of the experiences of healthcare staff when using the PDI., Method: An exploratory qualitative study is presented about the experience of 4 professionals who applied the PDI to 124 advanced-cancer patients. Our study consisted of an analysis of their experiences, taken from information generated in a focus group. A thematic analysis was performed on the information generated at that meeting by two researchers working independently., Results: The initial experiences with the PDI on the part of the professionals led them to systematically administer the questionnaire as part of an interview instead of having patients fill it out themselves in written form. What started out as an evaluation very often led to a profound conversation on the meaning of life, dignity, and other sensitive, key issues related to the process of the illness., Significance of Results: 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 interview.

Background: Medical Schools are challenged to improve palliative care education and to find ways to introduce and nurture attitudes and behaviours such as empathy, patient-centred care and wholistic care. This paper describes the curriculum and evaluation results of a unique course centred on palliative care decision-making but aimed at introducing these other important competencies as well., Methods: The 20 h-long optional course, presented in an art museum, combined different learning methods, including reflections on art, case studies, didactic sessions, personal experiences of faculty, reflective trigger videos and group discussions. A mixed methods approach was used to evaluate the course, including a) a post-course reflective exercise; b) a standardized evaluation form used by the University for all courses; and c) a focus group., Results: Twenty students (2nd to 6th years) participated. The course was rated highly by the students. Their understanding of palliative care changed and misconceptions were dispelled. They came to appreciate the multifaceted nature of decision-making in the palliative care setting and the need to individualize care plans. Moreover, the course resulted in a re-conceptualization of relationships with patients and families, as well as their role as future physicians., Conclusions: Palliative care decision-making therefore, augmented by the visual arts, can serve as a vehicle to address several competencies, including the introduction of competencies related to being patient-centred and empathic.

Aim: To explore the views of current and ex-smoker nurses on their role in supporting patients to stop smoking., Background: Long-term conditions are closely linked to harmful lifestyle behaviours, including smoking and overeating. Health professionals have an important role to play in promoting healthier lifestyles. It has been described that nurses' health behaviours may be a barrier to their health promotion practice. There is a need to gain further understanding on why nurses' health promotion activity is influenced by their own health behaviour., Design: A secondary analysis of qualitative data gathered in 2010 in the context of a project that aimed to develop a smoking cessation intervention for nurses., Methods: Eleven transcripts of semi-structured interviews conducted with nurses (current and ex-smokers) working in one university hospital in Spain. Data were analysed using framework analysis., Findings: Nurses who smoked engaged in social justification in terms of social norms and work stress. Only nurses who had quit smoking were able to identify the negative feelings it generated and the effect that it had on their past health promotion practice. This was expressed by ex-smokers as an internal conflict that prevented them from supporting patients with their own habit., Conclusion: Nurses who smoke may be inhibited as health promoters without being aware of it. Interventions that focus on helping these professionals deal with the challenges associated with these encounters are necessary if health promotion practices are to be enhanced. Targeting this conflict might also work to improve their lifestyle, which would expand the potential impact to professionals' own health., (© 2017 John Wiley & Sons Ltd.)

Background: Family members are involved in the care of palliative patients at home and therefore, should be viewed as important sources of information to help clinicians better understand the quality palliative care service patients receive. The objective of the study was to analyse what is valued most by family carers undergoing bereavement of a palliative care home service in order to identify factors of quality of care., Methods: Qualitative exploratory study based on documentary analysis. Content analysis of 77 gratitude documents received over 8 years by a palliative home service in Odivelas, near Lisbon (Portugal) was undertaken, through an inductive approach and using investigator triangulation. Frequency of distinct categories was quantitatively defined., Results: Three different content categories emerged from the analysis: a) Recognition of the care received and the value of particular aspects of care within recognised difficult situations included aspects such as kindness, listening, attention to the family, empathy, closeness, affection and the therapeutic relationships established (63/77 documents); b) Family recognition of the achievements of the palliative care team (29/77) indicated as relief from suffering for the patient and family, opportunity of dying at home, help in facing difficult situations, improvement in quality of life and wellbeing, and feeling of serenity during bereavement; c) Messages of support (45/77) related to the need of resources provided. The relational component emerges as an underlying key aspect of family carers' experience with palliative care home service., Conclusion: Family carers show spontaneous gratitude for the professionalism and humanity found in palliative care. The relational component of care emerges as key to achieve a high quality care experience of palliative care homes service, and could be one indicator of quality of palliative care.