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Special Issue "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: 31 January 2022.

Special Issue Editors

Prof. Dr. María José Cabañero-Martínez
E-Mail Website
Guest Editor
Nursing department, Faculty of Health Sciences, University of Alicante, 03690 San Vicente del Raspeig (Alicante), Spain; 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
Prof. Dr. Manuel Fernández Alcántara
E-Mail Website
Guest Editor
Department of Health Psychology, University of Alicante, Campus de San Vicente del Raspeig - 03690 San Vicente de el Raspeig, Alicante, Spain
Interests: complicated grief; palliative care; end-of-life; bereavement; active ageing; child neuropsychology
Special Issues and Collections in MDPI journals
Prof. Rafael Montoya Juárez
E-Mail Website
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 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

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All papers will be peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access semimonthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2300 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 (9 papers)

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Research

Article
Personal and Emotional Factors of Nursing Professionals Related to Coping with End-of-Life Care: A Cross-Sectional Study
Int. J. Environ. Res. Public Health 2021, 18(18), 9515; https://doi.org/10.3390/ijerph18189515 - 09 Sep 2021
Viewed by 387
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
Article
Could Caregivers’ Stressful Care Experiences Be Related to Their Attitudes towards Advance Care Planning? A Cross-Sectional Descriptive Study
Int. J. Environ. Res. Public Health 2021, 18(17), 9038; https://doi.org/10.3390/ijerph18179038 - 27 Aug 2021
Viewed by 405
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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Article
Professionals’ Expectations and Preparedness to Implement Knowledge-Based Palliative Care at Nursing Homes before an Educational Intervention: A Focus Group Interview Study
Int. J. Environ. Res. Public Health 2021, 18(17), 8977; https://doi.org/10.3390/ijerph18178977 - 26 Aug 2021
Viewed by 388
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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Article
Family Physicians’ Perspectives on Their Role in Palliative Care: A Double Focus Group in Portugal
Int. J. Environ. Res. Public Health 2021, 18(14), 7282; https://doi.org/10.3390/ijerph18147282 - 07 Jul 2021
Viewed by 677
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
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
Int. J. Environ. Res. Public Health 2021, 18(14), 7272; https://doi.org/10.3390/ijerph18147272 - 07 Jul 2021
Cited by 1 | Viewed by 772
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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Article
Palliative Care Professionals’ Message to Others: An Ethnographic Approach
Int. J. Environ. Res. Public Health 2021, 18(10), 5348; https://doi.org/10.3390/ijerph18105348 - 17 May 2021
Viewed by 872
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
Article
Cultural Adaptation and Validation of the Quality of Dying in Long-Term Care Scale (QoD-LTC) for Spanish Nursing Homes
Int. J. Environ. Res. Public Health 2021, 18(10), 5287; https://doi.org/10.3390/ijerph18105287 - 16 May 2021
Viewed by 730
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
Article
Family Caregiver Suffering in Caring for Patients with Amyotrophic Lateral Sclerosis in Korea
Int. J. Environ. Res. Public Health 2021, 18(9), 4937; https://doi.org/10.3390/ijerph18094937 - 06 May 2021
Viewed by 708
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
Article
Knowledge of Palliative Care in Ecuador
Int. J. Environ. Res. Public Health 2021, 18(9), 4840; https://doi.org/10.3390/ijerph18094840 - 30 Apr 2021
Viewed by 951
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
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