Palliative Care and Social Practice最新文献

Background: Spousal loss is a profoundly challenging experience, often leading to heightened risks of anxiety, depression, and prolonged grief. In the context of cancer, bereavement is further complicated by the caregiving role and the emotional toll of anticipating the end of life. Palliative care plays a crucial role in alleviating suffering, with Continuous Deep Sedation Until Death (CDSUD) being one approach to managing end-of-life distress. However, the impact of CDSUD on the grieving process remains underexplored.

Objective: This study explores the emotional trajectories of bereaved spouses about CDSUD, aiming to identify differences in grief experiences between those whose spouses received CDSUD and those who did not.

Methods: From September 2022 to April 2024, 13 participants were recruited from French hospital facilities. They were divided into two groups: Group 1 (n = 7) spouses of patients who received CDSUD, and Group 2 (n = 6) whose spouses did not. Data were collected through online semi-structured interviews and analyzed using ALCESTE software.

Results: Group 1 revealed two main themes: (1) Palliative Care, Sedation, and Disease History; (2) Grieving Process, Social Relationship Changes, Couple's History, and Difficult Moments. Group 2 presented three themes: (1) Disease History, (2) Family Background, and (3) Final Hours and Care Team. CDSUD was associated with an abrupt loss, while in its absence, bereaved spouses described extended caregiving and heightened emotional distress.

Conclusion: Bereavement experiences varied based on CDSUD usage, with implications for anticipatory grief and bereavement support. Both groups highlighted the need for enhanced support systems for grieving spouses.

Background: Clinical practice is an important part of nursing education as it helps nursing students transition into competent health professionals capable of providing quality services. However, research studies convey their significant role as a stressor for nursing students when they encounter end-of-life situations during clinical practice. Furthermore, the perceptions of nursing students regarding end-of-life care (EOLC) have not been exhaustively studied in the Ugandan context.

Objective: This study was conducted to understand nursing students' perceptions about EOLC during clinical practice at Mulago National Referral Hospital.

Design: This qualitative study employed a phenomenological approach and was conducted among fifteen nursing students from Makerere University who were assigned to clinical practice at Mulago National Referral Hospital, Kampala, Uganda in 2023.

Method: Participants were purposively selected for the study from third- and fourth-year undergraduate nursing students. Data were gathered through semi-structured in-depth interviews which were audio-recorded, transcribed, and thematically analyzed using Atlas.ti version 6 software.

Results: Three main themes emerged from the data: (i) reactions to the physical process of EOLC; (ii) changes in ideas about dying patients; and (iii) student attitudes toward dying patients. Participants described their reactions as chaotic, devastated, and scared during their first encounter with care for dying patients. They also highlighted how their attitudes evolved from unfavorable impressions to positive perceptions as they gained experience.

Conclusion: In this study, nursing students exhibited divisive attitudes toward EOLC starting with uncertainty and fear, then often growing into confidence and compassion. These powerful experiences show how much EOCL can shape students personally and professionally, highlighting the need for greater support in their educational journey. Further research could help understand how this process unfolds in different settings.

Background: The COVID-19 pandemic highlighted various issues regarding healthcare providers' well-being and their need for employer support.

Objectives: This study aims to show the extent and manner in which end-of-life care providers were supported by their employers during the COVID-19 pandemic, and whether their needs and the support they received matched.

Design: A longitudinal mixed-methods study among healthcare providers delivering end-of-life care during the COVID-19 pandemic.

Methods: Surveys were conducted at four timepoints (n = 302), and interviews were conducted at three timepoints (n = 17) during the first 18 months of the pandemic. Descriptive analysis was performed on the quantitative data, and thematic analysis was conducted on the interview data.

Results: The survey indicated that healthcare providers' need for support decreased over the pandemic, yet 18 months after its onset, nearly one in five still needed more support than usual. About one in three healthcare providers felt inadequately supported emotionally across the four periods. Disparities in employer support were found, with fewer healthcare providers receiving support than those who desired it. Interviews revealed that healthcare providers needed their employers to show interest and appreciation and involve them in decision-making. There was also a need for accessible professional support, efforts to reduce the stigma around seeking it, and the facilitation of peer support. In addition, healthcare providers desired practical support during the crisis, such as COVID-19 protection, scheduling, and good information provision.

Conclusion: The COVID-19 pandemic has revealed issues concerning the well-being of healthcare providers. This study gives insight into the amount and type of employer support needed. However, the support provided has often been misaligned with the needs of healthcare providers. As we face another potential healthcare crisis with shortages and high workloads, it is important to maintain focus on the well-being of healthcare providers. Employers must invest in appropriate and effective support measures.

Background: Assessing and quantifying anxiety levels among oncology professionals across different disciplines, along with evaluating the role of social support networks within healthcare institutions, can inform the development of targeted interventions aimed at enhancing staff engagement, translating research findings into practical workplace strategies, and ultimately reducing anxiety levels.

Objective: This study aims to examine the perceptions among cancer-diagnosed workers across disciplines of workplace support systems in alleviating anxiety among employees with cancer in oncology settings in Jordan.

Methods: A cross-sectional study was undertaken at the King Husain Cancer Center in Amman, Jordan. A proportionate sampling strategy was employed to select the sample population of 354 oncology professionals from various disciplines. Data were gathered using self-administered questionnaires on Generalized Anxiety Disorder-7, work-related issues, and work support systems.

Results: The mean age of participants was 42.3 years. The majority of participants (n = 185, 52.3%) were of stage II cancer. In terms of treatment types received by the patients, the majority received chemotherapy (n = 325, 91.8%), while the remaining patients underwent surgery (n = 13, 3.7%). Pearson correlation was utilized to assess the relationship between anxiety disorders and variables of age and duration of diagnosis with cancer. The results demonstrated a statistically significant correlation with age (r = 0.49, p = 0.037) and duration of diagnosis (r = 0.61, p = 0.027).

Conclusion: The study highlights the importance of workplace support systems in reducing anxiety among workers with cancer in Jordan, highlighting the need for structured and sustainable interventions to improve their well-being. This study highlights the importance of investing in workplace support programs for oncology workers with cancer, thereby raising job satisfaction, reducing burnout, and improving patient-care outcomes.

Background: The healthcare needs of people living in areas of high deprivation are complicated by the cumulative effect of the sociodemographic factors known to impact on health outcomes, such as income, housing and education. Of note, for people living in more deprived areas, life expectancy is shorter and the onset of chronic disease and multimorbidity occurs much earlier. While the relationship between area deprivation and access to palliative care is becoming more widely researched, the vast majority of studies to date have focused on referrals to specialist palliative care services. This is problematic given the dominant model of generalist-specialist palliative care in high-income countries which assumes that most people will have a level of palliative care need that can be managed by non-specialist palliative care services.

Objective: To identify associations between area deprivation and the use of generalist and specialist palliative care services in the last year of life.

Design: A retrospective population-based cohort study.

Methods: People aged over 18 years who died between January 2015 and December 2020 were identified within one geographical area of Aotearoa New Zealand. Using the National Health Identifier, deaths were matched to generalist and specialist palliative care service data.

Results: A significant association was found between area deprivation and health service use in the last year of life. Of note, people living in rural areas of deprivation were significantly less likely to receive a hospital (p = <0.000) or inpatient hospice admission (p = <0.000). They were also less likely to have contact with their general practitioner (p = 0.007) or experience a specialist outpatient clinic appointment (p = 0.001).

Conclusion: This study has revealed inequities in health service use across generalist and specialist palliative care services for people living in areas of deprivation. Of note, findings have highlighted how rurality amplifies inequities in access to appropriate palliative care. Further research is needed to better understand the consequences of these apparent inequities.

Background: There is initial evidence that biographical audio recordings have a positive effect on people with advanced, incurable illnesses, but also that such recordings can represent a major challenge. Little is yet known about the interactions of positive and negative effects, as well as certain groups of patients with incurable illnesses.

Objectives: The aim of this study is to identify positive and negative effects of a personal family audiobook recording on incurably ill patients with underage children, suggestions for improving the implementation, and feasibility in parallel with somatic treatment.

Design: Qualitative, descriptive study.

Methods: Semi-structured interviews, transcribed and analyzed using qualitative content analysis. The main categories were set deductively; the subcategories were developed inductively.

Results: Twelve patients with advanced, incurable diseases (66.67% female; age in years M = 43.6, range: 38-55) with children (<18 years) after recording a personal family audiobook. Patients experienced positive (e.g., relief, gratitude), negative (e.g., insecurity, sadness), and neutral emotions (e.g., feeling emotional, ambivalent). They described positive (e.g., pleasant memories) and negative effects for themselves (e.g., self-criticism), for their family (e.g., creating a legacy, no understanding, respectively), as well as positive and negative effects within the process of recording the audiobook (e.g., grateful for support, time investment, respectively). Some patients mentioned unspecific positive effects. The recording was easy to implement, as planning and implementation were individually adapted to the patients' needs. All patients would recommend the audiobook.

Conclusion: There was evidence that the audiobook strengthened coping strategies; the concept of generativity seems particularly important. Nevertheless, the process was described as exhausting and challenging. Therefore, patients should decide whether they want to record a family audiobook and should be in sufficiently good mental and physical condition when they start the recording.

Trial registration: German Clinical Trials Register (Deutsches Register Klinischer Studien; DRKS00029252); registration date: June 10, 2022.

Background: The relief of patients' suffering is central to the philosophy and practice of palliative care. Few studies have focused on interdisciplinary palliative care providers' experiences in addressing patients' nonphysical suffering-suffering that is emotional, psychological, social, spiritual, and/or existential in nature. This study contributes to and expands the empirical knowledge base in this area.

Objective: To identify existing discourses within how palliative care providers talk about their experiences working with patients' nonphysical suffering, and how these discourses may affect palliative care providers and impact clinical care.

Design: This study's methodological approach was informed by discourse analysis, grounded in a poststructural theoretical framework. Discourse analysis guided by poststructural theory highlights that: discourses are constructed; discourses are imbued with tensions and/or contradictions; and discourses do things-they have effects.

Methods: Twenty-four interdisciplinary palliative care providers across Canada participated in semi-structured phone interviews in 2020. Eligible participants had a minimum of 2 years' experience providing palliative care to adult patients in diverse settings, and self-identified as having experience working with patients' nonphysical suffering.

Results: Two competing discourses shape providers' work with patients' nonphysical suffering: (1) 'Expectations of palliative care to relieve nonphysical suffering' and (2) 'Barriers to nonphysical suffering's relief'. The expectation that palliative care will relieve patients' nonphysical suffering emanates from patients and families, from medical teams outside of palliative care, and from providers themselves. Multiple barriers to nonphysical suffering's relief exist at the patient, provider, and systems levels. Providers may experience helplessness, and inadequacy, and can avoid patients' nonphysical suffering when they feel unable to relieve it.

Conclusion: Palliative care has long ascribed nonphysical suffering's relief to the ability of a patient to transcend their own suffering, or a palliative care provider to facilitate/support that transcendence. Findings call into question and expand this long-standing discourse by pushing the field to consider how multiple intersecting barriers at patient, provider, and systems levels shape-and limit-palliative care's call for the relief of nonphysical suffering. Findings have implications for patient care, and interdisciplinary palliative care training, education, and research.

Background: Living in remote and rural areas is associated with worse health outcomes and poorer end-of-life care. Inequality in access to high-quality palliative care due to rurality is a worldwide problem. There is a need to evaluate potential ways, such as using telemedicine, to enhance palliative care and support patients to remain within their communities.

Objective: To understand the experiences of patients, carers and specialist palliative care professionals to receive/deliver video consultations in a rural setting.

Design: Qualitative semi-structured interviews with reflective thematic analysis.

Methods: Patients, their informal carers (family/friend) and members of the community specialist palliative care team were invited to qualitative interview to explore their experience of using video consultations.

Results: Four themes were generated including: (1) interpersonal communication, (2) enhanced provision with subthemes: physical distance and reducing travel and quick and convenient access to care, (3) flexible blended models of care and (4) organisational and practical barriers.

Conclusion: In many situations, video consultations were felt to be beneficial to enable convenient and reliable access to specialist palliative care for patients living remotely. They are feasible, acceptable and practical for patients, their families and healthcare professionals. However, video consultations must be offered as an option to enhance care rather than replace in-person home visits, which are required in some situations. Further research is needed to explore how to ensure this increased accessibility is inclusive and supports disadvantaged older patients and those of lower socio-economic position.

The extension of assisted dying to those whose natural death is not reasonably foreseeable has very real implications for how we think about life-limiting illness and the systems of care we design to palliate suffering. We now have a new idea of a life-limiting illness; dying is a result of an illness's impact on quality of life, not length of life. In this article, I tell the story of "Sam," whose complex illness and suffering led her to choose an assisted death. I reflect on my own responses to Sam and conclude with a dream for a palliative system of care designed uniquely to support those choosing death over a life of suffering.