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Needs in Palliative Care from the Perspective of the Patient, Family and Health Care Professionals

A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Health Care Sciences & Services".

Deadline for manuscript submissions: closed (31 January 2022) | Viewed by 52144

Special Issue Editors


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Guest Editor
1. Nursing Department, Faculty of Health Sciences, University of Alicante, 03690 San Vicente del Raspeig, Alicante, Spain
2. Institute for Health and Biomedical Research of Alicante (ISABIAL), 03010 Alicante, Spain
Interests: palliative care; geriatrics; end of life; simulation training; communication skills; patient related outcomes

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Guest Editor
Department of Health Psychology, University of Alicante, Campus de San Vicente del Raspeig, San Vicente de el Raspeig, 03690 Alicante, Spain
Interests: complicated grief; palliative care; end-of-life; bereavement; active ageing; child neuropsychology
Special Issues, Collections and Topics in MDPI journals

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Guest Editor
Department of Nursing, Mind, Brain and Behaviour Research Institute, University of Granada, 18016 Granada, Spain
Interests: palliative care; nursing homes; qualitative research; end-of-life
Special Issues, Collections and Topics in MDPI journals

Special Issue Information

Dear Colleagues,

Palliative care involves a holistic approach to care, aimed at improving the quality of life of patients with advanced chronic diseases or in end-of-life situations, as well as providing them with a dignified death process. In a palliative care situation, in addition to the patient, the well-being and quality of life of the family and the multidisciplinary team caring for the patient takes on special relevance. In this sense, it is essential to support and cover the needs of the family and the health care team, as well as to provide adequate training for both. Being essential tools or strategies of symptoms control at a physical, psychological, social or spiritual level, good communication between the patient, family and care team is required, as well as an adequate care planning based on the needs, beliefs and values of the patient and family, which also ensures the continuity of care during the care process.

From this conceptualization of palliative care, we invite contributions to this Special Issue which include studies focused on patients with palliative needs, but also studies focused on the needs of families, studies linked to the grieving process, and studies on the needs of professionals, as these may be essential training aspects for the provision of quality palliative care (communication and self-care).

Prof. Dr. María José Cabañero Martínez
Prof. Dr. Manuel Fernández Alcántara
Prof. Rafael Montoya Juárez
Guest Editors

Manuscript Submission Information

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Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • palliative care
  • health-related quality of life
  • symptoms management
  • communication skills
  • advance care planning
  • patient preferences
  • self-care
  • grief
  • compassion
  • caregivers

Published Papers (18 papers)

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12 pages, 375 KiB  
Article
“Keeping the Light On”: A Qualitative Study on Hope Perceptions at the End of Life in Portuguese Family Dyads
by Carlos Laranjeira, Maria Anjos Dixe, Isabel Semeão, Sara Rijo, Catarina Faria and Ana Querido
Int. J. Environ. Res. Public Health 2022, 19(3), 1561; https://doi.org/10.3390/ijerph19031561 - 29 Jan 2022
Cited by 11 | Viewed by 3275
Abstract
Hope performs an important role in how patients and their families cope with suffering and stressful events. To better inform practice and theory on hope, palliative care research should include both patients and their family carers, given their strong interdependence. The aim of [...] Read more.
Hope performs an important role in how patients and their families cope with suffering and stressful events. To better inform practice and theory on hope, palliative care research should include both patients and their family carers, given their strong interdependence. The aim of this study was to explore how hope is experienced in dyads formed by end-of-life patients and their family carers. In this qualitative study, data were collected by in-depth interviews with seven Portuguese family dyads. Analysis followed a thematic analysis approach. The analysis of the interviews shed light on the importance of hope for all participants, and the challenges involved. Family dyads noted several barriers and facilitators to perceptions of hope. Barriers to hope included limitations imposed by illness, feelings of anguish and helplessness, and poor communication with clinicians. Hope facilitators included supportive others, positive thinking and sense of humour, connection with nature, faith in religion and science, and a sense of compassion with others and altruism. Given the multidimensional scope of hope, the main challenge for family dyads is to look beyond the disease itself. Thus, palliative care teams should be encouraged to support and foster realistic hope, helping families prepare for death, in the context of advanced cancer. Full article
18 pages, 1321 KiB  
Article
Avoidant Coping of the Decision-Making Process on the Location of Care in Old Age: A Possible Conspiracy of Silence?
by Gema Serrano-Gemes, Isabel Gil, Adriana Coelho and Rafael Serrano-del-Rosal
Int. J. Environ. Res. Public Health 2021, 18(24), 12940; https://doi.org/10.3390/ijerph182412940 - 8 Dec 2021
Viewed by 2284
Abstract
The conspiracy of silence is extremely important due to both its high incidence and its consequences. This process usually occurs in situations of palliative care, or death; however, this concept is also mentioned in the literature linked to other contexts. Therefore, our objective [...] Read more.
The conspiracy of silence is extremely important due to both its high incidence and its consequences. This process usually occurs in situations of palliative care, or death; however, this concept is also mentioned in the literature linked to other contexts. Therefore, our objective was to study whether the conspiracy of silence may be extrapolated to the context of decision-making on the location of care in old age. To this end, we first analyzed the in-depth semi structured qualitative interviews conducted with older people, caregivers, and professionals, about decision-making on the location of care in old age. Subsequently, a comparative analysis was performed between the basic elements of the conspiracy of silence and this decision-making. Our findings revealed an avoidance process developed by all three groups. Furthermore, this decision-making presents similarities with the conspiracy of silence in the process of avoidance coping and denial that is developed. However, there are significant differences, as information is not withheld from the older person, who has an active attitude in the process of avoidance. Decision-making on the location of care in old age does not exactly match the conspiracy of silence process, but it does seem to correspond to a pact of silence. Full article
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9 pages, 4286 KiB  
Article
Perceived Competence in the Face of Death before and after Nursing Studies: An Intrasubject Longitudinal Study
by Enrique Sáez-Alvarez, Pilar Medrano-Abalos, Cristina Cunha-Pérez, Jesús Cuesta-Fernández and Salvador Martín-Utrilla
Int. J. Environ. Res. Public Health 2021, 18(22), 12084; https://doi.org/10.3390/ijerph182212084 - 17 Nov 2021
Cited by 1 | Viewed by 1640
Abstract
Perceived competence is a subject’s perception of being able to interact effectively with the environment. Perceived Competence in the face of death in Nursing degree programs in which the presence of the subject of death and bereavement is key becomes more topical and [...] Read more.
Perceived competence is a subject’s perception of being able to interact effectively with the environment. Perceived Competence in the face of death in Nursing degree programs in which the presence of the subject of death and bereavement is key becomes more topical and relevant. The objective of this study is to determine whether this competence is improved through Nursing Studies. This study was designed as paired repeated intrasubject measures, initial measurement at the beginning of the first year and second measurement in the fourth year of the Nursing degree. One hundred and seventeen nursing students were assessed. Significant improvement is evidenced in three of the four dimensions of Perceived Competence in the face of death (Accompaniment and Communication: 25.70/29.34; Self-Confidence: 9.64/12.78; Management of Self-Fear: 13.18/14.66). These results show notable differences with their cross-sectional predecessors, suggesting the need for further studies in this field to consolidate a still developing body of knowledge. Full article
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11 pages, 375 KiB  
Article
Efficacy of a Standardised Patient Simulation Programme for Chronicity and End-of-Life Care Training in Undergraduate Nursing Students
by Silvia Escribano, María José Cabañero-Martínez, Manuel Fernández-Alcántara, Sofía García-Sanjuán, Rafael Montoya-Juárez and Rocío Juliá-Sanchis
Int. J. Environ. Res. Public Health 2021, 18(21), 11673; https://doi.org/10.3390/ijerph182111673 - 6 Nov 2021
Cited by 12 | Viewed by 3458
Abstract
Background: Standardised patient simulations seem to be useful for improving the communication skills of health sciences students. However, it is important to define the effectiveness of these types of interventions in complex scenarios linked to disease chronicity and end-of-life contexts. Methods: A quasi-experimental [...] Read more.
Background: Standardised patient simulations seem to be useful for improving the communication skills of health sciences students. However, it is important to define the effectiveness of these types of interventions in complex scenarios linked to disease chronicity and end-of-life contexts. Methods: A quasi-experimental study with pre- and post-intervention measures was carried out in a single group. A total of 161 nursing students completed different assessment instruments to measure their attitudes towards communication (Attitude Toward Communication Scale), self-efficacy (Self-Efficacy of Communication Skills, SE-12), and communication skills (Health Professionals Communication Skills Scale, EHC-PS) before and after simulation training with standardised patients. The objective of the program was to train students in non-technical skills for complex situations involving chronicity and end-of-life care. It comprised eight sessions lasting 2.5 h each. Results: The results showed notable baseline gender differences in attitudes towards communication and in the informative communication dimension, with women obtaining higher scores. The participants’ self-efficacy and communication skills significantly improved after completing the intervention, with no significant differences being found for the attitudes towards communication variable. Conclusion: The standardised patient simulation programme for complex scenarios related to chronicity and end-of-life contexts improved communication self-efficacy and communication skills in these nursing students. In future work it will be important to analyse the influence of gender and attitudes towards communication as variables in the learning of communication skills in nursing students. Full article
14 pages, 376 KiB  
Article
Implementation and Knowledge of the Clinical Practice Guide for Palliative Care in the Ecuadorian Primary Care Level
by Tamara Rodríguez Quintana, Viviana Dávalos-Batallas, Ana-Magdalena Vargas-Martínez, Lucelly López, Patricia Bonilla-Sierra, María-de-las-Mercedes Lomas-Campos and Fatima Leon-Larios
Int. J. Environ. Res. Public Health 2021, 18(21), 11573; https://doi.org/10.3390/ijerph182111573 - 4 Nov 2021
Cited by 2 | Viewed by 1932
Abstract
Ecuador assumed the commitment of including Palliative Care (PC) in its health policies. In 2014, the Ministry of Public Health (Ministerio de Salud Pública, MSP) approved the Clinical Practice Guide for Palliative Care (Guía de Práctica Clínica sobre Cuidados Paliativos, GPCCP), [...] Read more.
Ecuador assumed the commitment of including Palliative Care (PC) in its health policies. In 2014, the Ministry of Public Health (Ministerio de Salud Pública, MSP) approved the Clinical Practice Guide for Palliative Care (Guía de Práctica Clínica sobre Cuidados Paliativos, GPCCP), with application at the national level, as a mandatory internal regulation in all institutions belonging to the National Health System. In 2021, there is no evidence about the degree of implementation. The objective was to evaluate the implementation (I) of the GPCCP guide and the knowledge (C) of the health personnel working in the Zone 7 Health Centers (HCs). This is a cross-sectional, descriptive, and prospective study. A total of 292 professionals were interviewed: managers (38), physicians (150), and nurses (104). Three surveys based on the GPCCP guide were elaborated: one for the implementation, which was applied to the individuals in charge, and the others to assess the health professionals’ knowledge. The SPSS program was used, version 25. In the three groups, more than half of the participants had no training in PC, 91.2% of the HCs have the GPCCP guide, there is PC medical history (MH) in 38.2%, and morphine is used in 14.7%. The implementation of the GPCCP guide was inadequate in 52.9% of the cases. Only 25% treat the agony symptoms and 30%, delirium; 4.4% acknowledge the use of morphine in dyspnea, and 13.3% identify the subcutaneous route as the first choice for hydration at the end-of-life phase. Strategies to implement the GPCCP guide and to improve the health personnel’s knowledge must be implemented in Zone 7 centers. Full article
13 pages, 382 KiB  
Article
Influence of Palliative Care Training on Nurses’ Attitudes towards End-of-Life Care during the COVID-19 Pandemic in Spain
by Encarna Chisbert-Alapont, Isidro García-Salvador, María Jesús De La Ossa-Sendra, Esperanza Begoña García-Navarro and Marisa De La Rica-Escuín
Int. J. Environ. Res. Public Health 2021, 18(21), 11249; https://doi.org/10.3390/ijerph182111249 - 26 Oct 2021
Cited by 7 | Viewed by 2936
Abstract
Aim: This study aims to assess the influence of training on nurses’ attitudes toward end-of-life care during the COVID-19 pandemic alarm state in Spain. Design: Cross-sectional descriptive study. Data collection was carried out by means of an ad hoc questionnaire using Google Forms [...] Read more.
Aim: This study aims to assess the influence of training on nurses’ attitudes toward end-of-life care during the COVID-19 pandemic alarm state in Spain. Design: Cross-sectional descriptive study. Data collection was carried out by means of an ad hoc questionnaire using Google Forms in April and May 2020. The score of attitudes toward end-of-life care was used, to which sociodemographic variables and training in palliative care were added. Methods: Data were collected from 238 nursing professionals who had cared for COVID-19 and non-COVID-19 adult patients at the end-of-life stage in a hospital or nursing home. Results: Results showed that 51% of the nurses in the sample had training in palliative care. However, the percentage decreased to 38.5% among those who cared for COVID-19 patients and to 44.5% in those who cared for non-COVID-19 patients. In relation to attitudes about end-of-life care, more positive attitudes and a higher mean score were found in the trained group. Conclusions: Palliative care training is a key element in end-of-life care and is even more important in times of COVID-19. Impact: Although end-of-life accompaniment has been studied, few studies have included the influence of training on this during the pandemic. This study identifies key elements of accompaniment and training in a comparison of COVID-19 and non-COVID-19 patients during the pandemic. In relation to attitudes toward end-of-life care, the results showed a more positive attitude and a higher mean score in the trained group (3.43 ± 0.37 versus 3.21 ± 0.32), the difference being statistically significant (p < 0.001). Full article
14 pages, 2063 KiB  
Article
Population’s Potential Accessibility to Specialized Palliative Care Services: A Comparative Study in Three European Countries
by Danny van Steijn, Juan José Pons Izquierdo, Eduardo Garralda Domezain, Miguel Antonio Sánchez-Cárdenas and Carlos Centeno Cortés
Int. J. Environ. Res. Public Health 2021, 18(19), 10345; https://doi.org/10.3390/ijerph181910345 - 30 Sep 2021
Cited by 5 | Viewed by 2297
Abstract
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 [...] Read more.
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. Full article
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12 pages, 360 KiB  
Article
Personal and Emotional Factors of Nursing Professionals Related to Coping with End-of-Life Care: A Cross-Sectional Study
by María Povedano-Jiménez, Carmen Ropero-Padilla, Miguel Rodriguez-Arrastia and María Paz García-Caro
Int. J. Environ. Res. Public Health 2021, 18(18), 9515; https://doi.org/10.3390/ijerph18189515 - 9 Sep 2021
Cited by 4 | Viewed by 3360
Abstract
The death of a patient can be a traumatic event, causing emotional and psychological distress in professional nurses and potentially hampering the quality of their care. Optimal self-perceived coping with death involves valuing these difficult situations as challenges and actively coping with work-related [...] Read more.
The death of a patient can be a traumatic event, causing emotional and psychological distress in professional nurses and potentially hampering the quality of their care. Optimal self-perceived coping with death involves valuing these difficult situations as challenges and actively coping with work-related stress during the care of the dying patient. Thus, the aim of this study was to assess Spanish nurses’ self-perceived competence with patient death and investigate its relationship with their personality traits, anxiety and fear of death. A cross-sectional study based on a web-based survey was conducted. A sample of 534 Spanish nurses provided socio-demographic information and answered validated questionnaires. Most participants perceived their coping with death as optimal. Men and nurses older than 31 years coped better with death. Professionals with an optimal self-perception showed significantly lower scores on all personality dimensions evaluated, while a higher level of the anxiety trait predicted worse coping. Although with medium explanatory power, psychoticism, anxiety, and fear of death were the main predictors of the development of optimal coping with death among Spanish nurses. These characteristics together with information from the work environment and evidence-based practice could help to develop better routines and contexts of care for nurses working in end-of-life care. Full article
12 pages, 538 KiB  
Article
Could Caregivers’ Stressful Care Experiences Be Related to Their Attitudes towards Advance Care Planning? A Cross-Sectional Descriptive Study
by Pei-Yu Tsai, Wen-Han Huang and Yu-Jun Chang
Int. J. Environ. Res. Public Health 2021, 18(17), 9038; https://doi.org/10.3390/ijerph18179038 - 27 Aug 2021
Cited by 2 | Viewed by 2071
Abstract
Previous research has shown that care experiences influence the willingness for advance care planning (ACP). Family caregivers have increased contact with medical providers and procedures in the process of caring, and they have also witnessed the disability and suffering of patients. However, few [...] Read more.
Previous research has shown that care experiences influence the willingness for advance care planning (ACP). Family caregivers have increased contact with medical providers and procedures in the process of caring, and they have also witnessed the disability and suffering of patients. However, few studies have focused on family caregivers to understand their attitudes towards ACP. The aim of this cross-sectional study was to acknowledge family caregivers’ attitudes towards ACP and the related factors, especially care stress and experiences during the care process. We interviewed 291 family caregivers, and the demographics of the caregivers and care recipients, the clinical condition of care recipients, and the caregivers’ stress and care experiences were collected via anonymous questionnaires. Multiple logistic regression was performed to determine the factors associated with the attitudes towards ACP. We found that the caregiver having private health insurance (p < 0.001) and a completed DNR (p < 0.001) and the experience of recipients admitted to the ICU (p = 0.019) are associated with caregiver’s positive attitudes towards ACP. The greater the stress of conflict within a family over care decisions, the more participants think that ACP is important (p = 0.011). It is suggested that (1) in a family-centered culture, a public strategy for promoting ACP could be to emphasize the benefits of ACP in reducing family conflicts, and (2) when people make financial plans, they should also be provided with information about ACP to enable them to form a more integral plan for their future. Full article
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18 pages, 527 KiB  
Article
Professionals’ Expectations and Preparedness to Implement Knowledge-Based Palliative Care at Nursing Homes before an Educational Intervention: A Focus Group Interview Study
by Helene Åvik Persson, Gerd Ahlström and Anna Ekwall
Int. J. Environ. Res. Public Health 2021, 18(17), 8977; https://doi.org/10.3390/ijerph18178977 - 26 Aug 2021
Cited by 3 | Viewed by 2553
Abstract
The provision of knowledge-based palliative care is rare in nursing homes. There are obstacles to practically performing this because it can be difficult to identify when the final stage of life begins for older persons. Educational interventions in palliative care in nursing homes [...] Read more.
The provision of knowledge-based palliative care is rare in nursing homes. There are obstacles to practically performing this because it can be difficult to identify when the final stage of life begins for older persons. Educational interventions in palliative care in nursing homes are a challenge, and joint efforts are needed in an organisation, including preparedness. The aim was to explore professionals’ expectations and preparedness to implement knowledge-based palliative care in nursing homes before an educational intervention. This study has a qualitative focus group design, and a total of 48 professionals working in nursing homes were interviewed with a semi-structured interview guide. Qualitative content analysis with an inductive approach was used for the analysis. One major theme was identified: professionals were hopeful yet doubtful about the organisation’s readiness. The main categories of increased knowledge, consensus in the team, and a vision for the future illustrate the hopefulness, while insufficient resources and prioritisation illustrate the doubts about the organisation’s readiness. This study contributes valuable knowledge about professionals’ expectations and preparedness, which are essential for researchers to consider in the planning phase of an implementation study. The successful implementation of changes needs to involve strategies that circumvent the identified obstacles to organisations’ readiness. Full article
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12 pages, 339 KiB  
Article
Family Physicians’ Perspectives on Their Role in Palliative Care: A Double Focus Group in Portugal
by Carlos Seiça Cardoso, Filipe Prazeres, Beatriz Xavier and Bárbara Gomes
Int. J. Environ. Res. Public Health 2021, 18(14), 7282; https://doi.org/10.3390/ijerph18147282 - 7 Jul 2021
Cited by 7 | Viewed by 2394
Abstract
Background: Aggravated by the COVID-19 pandemic, the provision of palliative care for patients with palliative care needs emerges as a necessity more than ever. Most are managed in primary care by their family physicians (FP). This study aimed to understand the perspectives of [...] Read more.
Background: Aggravated by the COVID-19 pandemic, the provision of palliative care for patients with palliative care needs emerges as a necessity more than ever. Most are managed in primary care by their family physicians (FP). This study aimed to understand the perspectives of specialist and trainee FPs about their role in palliative care. Methods: we conducted a double focus-group study consisting of two separate online focus-groups, one with FP specialists (n = 9) and one with FP trainees (n = 10). Results: FPs already gather two fundamental skills for the provision of palliative care: the capacity to identify patients’ needs beyond physical symptoms and the recognition that the patient belongs to a familiar, psychosocial, and even spiritual environment. They perceive their role in palliative care to be four-fold: early identification of patients with palliative care needs, initial treatment, symptom management, and patient advocacy. Participants recognized the need for palliative care training and provided suggestions for training programs. Conclusion: FPs share a holistic approach and identify multiple roles they can play in palliative care, from screening to care and advocacy. Organizational barriers must be addressed. Short training programs that combine theory, practice, and experiential learning may further the potential for FPs to contribute to palliative care. Full article
11 pages, 868 KiB  
Article
A Comparison of the Survival, Place of Death, and Medical Utilization of Terminal Patients Receiving Hospital-Based and Community-Based Palliative Home Care: A Retrospective and Propensity Score Matching Cohort Study
by Cheng-Pei Lin, Min-Shiow Tsay, Yi-Hui Chang, Hung-Cheng Chen, Ching-Yu Wang, Yun-Shiuan Chuang and Chien-Yi Wu
Int. J. Environ. Res. Public Health 2021, 18(14), 7272; https://doi.org/10.3390/ijerph18147272 - 7 Jul 2021
Cited by 7 | Viewed by 2906
Abstract
Evidence shows that community-based palliative home care (PHC) provision enhances continuous care and improves patient outcomes. This study compared patient survival, place of death, and medical utilization in community- versus hospital-based PHC. A retrospective cohort study was conducted of patients aged over 18 [...] Read more.
Evidence shows that community-based palliative home care (PHC) provision enhances continuous care and improves patient outcomes. This study compared patient survival, place of death, and medical utilization in community- versus hospital-based PHC. A retrospective cohort study was conducted of patients aged over 18 referred to either community- or hospital-based PHC from May to December 2018 at a tertiary hospital and surrounding communities in Southern Taiwan. A descriptive analysis, Chi-square test, t-test, and Log-rank test were used for the data analysis of 131 hospital-based PHC patients and 43 community-based PHC patients, with 42 paired patient datasets analyzed after propensity score matching. More nurse visits (p = 0.02), fewer emergency-room visits (p = 0.01), and a shorter waiting time to access PHC (p = 0.02) were found in the community group. There was no difference in the duration of survival and hospitalization between groups. Most hospital-based patients (57%) died in hospice wards, while most community-based patients died at home (52%). Community-based PHC is comparable to hospital-based PHC in Taiwan. Although it has fewer staffing and training requirements, it is an alternative for terminal patients to meet the growing end-of-life care demand. Full article
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7 pages, 292 KiB  
Article
Palliative Care Professionals’ Message to Others: An Ethnographic Approach
by Carla Reigada, Carlos Centeno, Edna Gonçalves and Maria Arantzamendi
Int. J. Environ. Res. Public Health 2021, 18(10), 5348; https://doi.org/10.3390/ijerph18105348 - 17 May 2021
Cited by 3 | Viewed by 2658
Abstract
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 [...] Read more.
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. Full article
13 pages, 354 KiB  
Article
Cultural Adaptation and Validation of the Quality of Dying in Long-Term Care Scale (QoD-LTC) for Spanish Nursing Homes
by Daniel Puente-Fernández, Rosel Jimeno-Ucles, Emilio Mota-Romero, Concepción Roldán, Katherine Froggatt and Rafael Montoya-Juárez
Int. J. Environ. Res. Public Health 2021, 18(10), 5287; https://doi.org/10.3390/ijerph18105287 - 16 May 2021
Cited by 3 | Viewed by 2969
Abstract
Background: There is a need for instruments that can evaluate the psychosocial quality of dying in nursing homes. The aim of this study was to adapt and validate the Quality of Dying in Long-Term Care scale (QoD-LTC) to the Spanish context. Methods: Descriptive [...] Read more.
Background: There is a need for instruments that can evaluate the psychosocial quality of dying in nursing homes. The aim of this study was to adapt and validate the Quality of Dying in Long-Term Care scale (QoD-LTC) to the Spanish context. Methods: Descriptive cross-sectional study. Fourteen nurses from 7 facilities in southern Spain assessed 153 residents who died in the centers; validity, reliability, and feasibility were evaluated. Results: The Spanish version consists of 11 items with acceptable reliability (α = 0.681). Three factors model was validated by principal components analysis. A mean of 180.62 (SD = 86.66) seconds is needed to fill it in. An inter-observer 0.753 (95% CI: 0.391–0.900, p< 0.001) and intra-observer 0.855 (95% CI: 0.568–0.951 p = 0.001) reliability were observed. Weak correlation was observed; positive with mono-item question (0.322) and negative with Eastern Cooperative Oncology Group (ECOG) with a value of (−0.321) and Integrated Palliative outcome scale (IPOS) with a value of (−0.252). Conclusions: The QoD-LTC scale presents an adequate factorial structure, internal consistency, and feasibility to evaluate psychosocial quality of dying in nursing homes. It can be used as a quality indicator. Full article
9 pages, 314 KiB  
Article
Family Caregiver Suffering in Caring for Patients with Amyotrophic Lateral Sclerosis in Korea
by Juyeon Oh, Jung-A Kim and Min Sun Chu
Int. J. Environ. Res. Public Health 2021, 18(9), 4937; https://doi.org/10.3390/ijerph18094937 - 6 May 2021
Cited by 2 | Viewed by 2529
Abstract
The purpose of this study was to describe the meaning of the suffering experience of Korean ALS family caregivers. This is a descriptive phenomenological study that included ten participants using convenience sampling with maximum variation in a tertiary hospital in Seoul, South Korea. [...] Read more.
The purpose of this study was to describe the meaning of the suffering experience of Korean ALS family caregivers. This is a descriptive phenomenological study that included ten participants using convenience sampling with maximum variation in a tertiary hospital in Seoul, South Korea. Colaizzi’s data analysis method was used to inductively determine themes and formulate meanings. The three main themes derived from analysis were: “frustration with seeing a patient suffering”, “burnout at the cost of a life of dedication”, and “desperate need for help”. Caregivers experience high levels of suffering, which can come in various forms depending on the circumstances of the particular patient and family. Especially, distress from seeing a loved one suffering was another aspect of suffering in Korean ALS caregivers, reflecting strong family ties. At the same time, patients are in desperate need of help and support from their families. Thus, it is essential to provide care to lessen the causes of distress and meet the needs of not only patients, but also caregivers through family-centered care to improve overall quality of life for all involved. Full article
8 pages, 338 KiB  
Article
Knowledge of Palliative Care in Ecuador
by Paula Hidalgo-Andrade, Guido Mascialino, Diego Miño, Matías Mendoza and Anna Belén Marcillo
Int. J. Environ. Res. Public Health 2021, 18(9), 4840; https://doi.org/10.3390/ijerph18094840 - 30 Apr 2021
Cited by 6 | Viewed by 3102
Abstract
Palliative care is a holistic approach to care for people with chronic, advanced, and life-threatening illnesses. It improves the quality of life of patients and their caregivers. However, there is still limited access to palliative care in many countries. Knowledge about palliative care [...] Read more.
Palliative care is a holistic approach to care for people with chronic, advanced, and life-threatening illnesses. It improves the quality of life of patients and their caregivers. However, there is still limited access to palliative care in many countries. Knowledge about palliative care is key to increase its availability. Thus, this article aimed to explore the knowledge of the general population about palliative care in Ecuador. The study had a descriptive cross-sectional design. Through snowball sampling, between September 2019 and January 2020, 257 people completed an anonymous online questionnaire about general and specific aspects of palliative care. Descriptive and ANOVA analyses indicate that people have many misconceptions about palliative care and how it should be provided. Gender, education, training, occupation, and experience as caregivers were related to the total level of knowledge about palliative care. Regression analyses show other variables as predictors of knowledge. This study highlights the lack of knowledge about specific issues within palliative care in the general population in Ecuador. It also shows the need to develop and implement education measures to fill these gaps and enhance access to palliative care in health systems. Full article

Review

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14 pages, 1660 KiB  
Review
Palliative Care in Older People with Multimorbidities: A Scoping Review on the Palliative Care Needs of Patients, Carers, and Health Professionals
by Laura Llop-Medina, Yu Fu, Jorge Garcés-Ferrer and Ascensión Doñate-Martínez
Int. J. Environ. Res. Public Health 2022, 19(6), 3195; https://doi.org/10.3390/ijerph19063195 - 8 Mar 2022
Cited by 11 | Viewed by 4600
Abstract
Although numerous studies have been conducted previously on the needs of cancer patients at the end of their life, there is a lack of studies focused on older patients with non-oncological complex chronic multipathologies. Examining these needs would help to gain a greater [...] Read more.
Although numerous studies have been conducted previously on the needs of cancer patients at the end of their life, there is a lack of studies focused on older patients with non-oncological complex chronic multipathologies. Examining these needs would help to gain a greater understanding of the profile of this specific population within the palliative care (PC) pathway and how the health and care systems can address them. The aim of this review was to identify the needs influencing PC among older patients with multimorbidities, their relatives or informal caregivers, and the health professionals who provide care for these patients. A scoping literature review guided by the Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist was carried out with literature searched in the Medline, Embase, CINAHL, WoS, Cochrane Library, PsycINFO, and Scopus databases from 2009 to 2022. Eighty-one studies were included, demonstrating a great variety of unaddressed needs for PC among chronic older patients and the complexity in detecting those needs and how to refer them to PC pathways. This review also suggested a scarcity of tools and limited pathways for professionals to satisfy their needs for these patients and their families, who often felt ignored by the system. Substantial changes will be needed in health and care systems at the institutional level, providing more specialized PC environments and systematizing PC processes. Full article
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Other

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22 pages, 802 KiB  
Systematic Review
Patient Identification for Serious Illness Conversations: A Scoping Review
by Rebecca Baxter, Erik K. Fromme and Anna Sandgren
Int. J. Environ. Res. Public Health 2022, 19(7), 4162; https://doi.org/10.3390/ijerph19074162 - 31 Mar 2022
Cited by 8 | Viewed by 2315
Abstract
Serious illness conversations aim to align medical care and treatment with patients’ values, goals, priorities, and preferences. Timely and accurate identification of patients for serious illness conversations is essential; however, existent methods for patient identification in different settings and population groups have not [...] Read more.
Serious illness conversations aim to align medical care and treatment with patients’ values, goals, priorities, and preferences. Timely and accurate identification of patients for serious illness conversations is essential; however, existent methods for patient identification in different settings and population groups have not been compared and contrasted. This study aimed to examine the current literature regarding patient identification for serious illness conversations within the context of the Serious Illness Care Program and/or the Serious Illness Conversation Guide. A scoping review was conducted using the Joanna Briggs Institute guidelines. A comprehensive search was undertaken in four databases for literature published between January 2014 and September 2021. In total, 39 articles met the criteria for inclusion. This review found that patients were primarily identified for serious illness conversations using clinical/diagnostic triggers, the ’surprise question’, or a combination of methods. A diverse assortment of clinicians and non-clinical resources were described in the identification process, including physicians, nurses, allied health staff, administrative staff, and automated algorithms. Facilitators and barriers to patient identification are elucidated. Future research should test the efficacy of adapted identification methods and explore how clinicians inform judgements surrounding patient identification. Full article
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