Belar, A. (Alazne)
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- Cross-sectional survey of the wish to die among palliative patients in Spain: one phenomenon, different experiences(2021) Lama, M. (Marcos); Martinez-Garcia, M. (Marina); Santesteban, Y. (Yolanda); Olza-Moreno, I. (Inés); Rullán, M. (María); Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); López-Fidalgo, J. (Jesús); Belar, A. (Alazne); Breeze, R. (Ruth)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, χ2 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.
- Sedazio Aringarria bizitzaren amaieran (infografikoa)(2021-10-08) Hasselaar, J. (Jeroen); Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); Belar, A. (Alazne)
- An analysis of the experiences of bereaved relatives and health care providers following palliative sedation: a study protocol for a qualitative international multicenter case study(2022) Menten, J. (Johan); Payne, S. (Sheila); Jaspers, B. (Birgit); Hasselaar, J. (Jeroen); Centeno, C. (Carlos); Surges, S. M. (Séverine M.); Arantzamendi-Solabarrieta, M. (María); Van-der-Elst, M. (M.); Preston, N. (Nancy); Brunsch, H. (Holger); Belar, A. (Alazne); Adile, C. (Claudio)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 fve 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 frst full case will be analyzed by all researchers after being translated into English using a preprepared 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 diferent 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 diferent researchers in 5 countries, some diferences may occur which possibly makes it difcult to compare cases, but using a rigorous methodology will minimize this risk.
- Sedación paliativa en el final de la vida (infográfico)(2021-10-08) Hasselaar, J. (Jeroen); Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); Belar, A. (Alazne)Infográfico que explica aspectos fundamentales de la sedación paliativa: cuándo se aplica, qué es, enfoque de equipo, anticipación y cuidado, proporcionalidad, cómo se evalúa, etcétera.
- How palliative care professionals develop coping competence through their career: a grounded theory.(2024) Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); Belar, A. (Alazne); Sapeta, P. (Paula)ICS-ATLANTES 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 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.
- Palliative sedation at the end of life (infographic)(2021-10-08) Hasselaar, J. (Jeroen); Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); Belar, A. (Alazne)
- Wish to die and hasten death in palliative care: a cross-sectional study factor analysis(BMJ Publishing Group, 2021) Lama, M. (Marcos); Martinez-Garcia, M. (Marina); Santesteban, Y. (Yolanda); Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); López-Fidalgo, J. (Jesús); Belar, A. (Alazne)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.
- Multicenter Study of the Psychometric Properties of the New Demoralization Scale (DS-II) in Spanish-Speaking Advanced Cancer Patients(Elsevier, 2019) Santesteban, Y. (Yolanda); Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); López-Fidalgo, J. (Jesús); Consigli, S. (Sara); Belar, A. (Alazne); Martínez, M. (Marina); Rodríguez-Núñez, A. (Alfredo)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 translationeback 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 Systemerevised. Reliability was studied according to internal consistency; construct validity and concurrent validity with the Hospital Anxiety and Depression Scale and the Edmonton Symptom Assessment Systemerevised; 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 1⁄4 0.73, P < 0.001). The tool distinguished between patients with diverse functional levels (rho 1⁄4 0.319, P 1⁄4 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. J Pain Symptom Manage 2019;57:627e634. 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
- Proactive and systematic multidimensional needs assessment in patients with advanced cancer approaching palliative care: a study protocol(BMJ Publishing Group, 2020) Rocafort, J. (Javier); Noguera, A. (Antonio); Monforte-Royo, C. (Cristina); Pergolizzi, D. (Denise); Alonso-Babarro, A. (Alberto); Balaguer, A. (Albert); Goni-Fuste, B. (Blanca); Pérez-Bret, E. (Encarnación); Mateo-Ortega, D. (Dolors); Centeno, C. (Carlos); Nabal, M. (María); Arantzamendi-Solabarrieta, M. (María); May, L. (Luis); Rodríguez-Prat, A. (Andrea); Pascual, A. (Antonio); Moreno-Alonso, D. (Deborah); Belar, A. (Alazne); Julià-Torras, J. (Joaquim); Martínez, M. (Marina); Crespo, I. (Iris)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.
- Cross-sectional survey of the wish to die among palliative patients in Spain: one phenomenon, different experiences(Cambridge University Press, 2020) Lama, M. (Marcos); Santesteban, Y. (Yolanda); Olza-Moreno, I. (Inés); Rullán, M. (María); Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); López-Fidalgo, J. (Jesús); Belar, A. (Alazne); Martínez, M. (Marina); Breeze, R. (Ruth)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, χ2 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.