BMC Palliative Care最新文献

Background: Many palliative cancer patients require inpatient hospital treatment for medical reasons, which contrasts their frequent desire to be at home. Virtual reality (VR) could be a way of bringing the home environment closer to them. First observations have shown benefits from VR for inpatients in palliative care. The aim of this qualitative, descriptive study was to explore the expectations of in-patients suffering from incurable cancer and their relatives about VR, in particular individualized VR images of the patients' own home.

Methods: Semi-structured interviews with inpatients suffering from incurable cancers and their relatives in three medical settings (palliative care, hematology, radiotherapy) of a German university hospital. Qualitative content analysis about expected benefits and concerns regarding VR-videos showing their private home; defining the main topics deductively and the subcategories inductively. We also assessed the patients' subjective perspective on their remaining time to live to estimate the impact of double awareness on the results. The Patient Advisory Board informed the study protocol and conduct.

Results: We interviewed 15 patients (8 men; age M = 63.4, SD = 11.34; range 39-82) under palliative care, and four relatives. We organized the interview content in 6 themes (general interest, desired content, non-desired content, expected benefits, concerns, and irregularities) and 26 sub-themes. Most patients and relatives were interested in using VR during hospital treatment. They often preferred viewing nature or tourist sites over seeing their home or family. Reasons could be linked to privacy concerns and the general desire for distraction from the current situation that they specified with their expectation of well-being, a break from the patient-experience, the pursue of curiosity, and the VR evoking fond memories.

Conclusion: VR seems to be of interest for palliative cancer patients, especially as distraction and relief from their illness. The desired content can be very different, so a choice from a selection of VR-content should be made available. If patients want to see videos of their own home, recordings by relatives instead of study or hospital staff seem to meet the need for privacy.

Trial registration: Registered at Deutsches Register Klinischer Studien; registration number: DRKS00032172; registration date: 11/07/2023. https://drks.de/search/de/trial/DRKS00032172.

Background: Risk perception with respect to death is a prerequisite for patients with advanced cancer when the time comes to make medical decisions. However, the nature of death risk perception remains unclear.

Method: In-depth interviews were conducted with 28 patients with advanced cancer who were recruited from two hospitals and one home-based hospice in Fujian, China. Interviews were transcribed and directed content analysis applied. The Tripartite Model of Risk Perception was used as a theoretical framework.

Results: Patients with advanced cancer perceived their risk of death in different ways. Professional communication about death risk and data-driven risk perception were common in clinical settings. Affective influences, inherent cognition, and comparisons to others or oneself also contributed to the subjects' self-perceived death risk.

Conclusion: This theory-informed qualitative study clarifies the nature of the perceived risk of death among patients with advanced cancer. The study findings offer healthcare providers a more nuanced understanding of the perceived risk of death among patients with advanced cancer.

Background: Spiritual support for patients and caregivers of critically ill patients is associated with improved quality of life. This aspect, however, is not incorporated into the current care pathways in Sri Lanka. The Spiritual Needs Assessment for Patients (SNAP) questionnaire, comprised of 3 domains: psychosocial, spiritual and religious, gives a platform for clinicians to assess the spiritual needs of those patients. This study presents the results of validation of the Sinhala version of the SNAP (S-SNAP) questionnaire.

Methods: The SNAP was translated from English to Sinhala using the standard forward and backward translation process. After verifying the content validity, unambiguity and clarity of items in a focused group discussion, and a pilot study, the pre-final version was tested among 267 volunteers with cancer selected from three state-run cancer care institutions. Data were analysed for internal consistency and item-total correlations. Factor analysis was done using Varimax rotation with Kaiser normalization. A Scree plot was also made to determine the number of factors.

Results: The mean (SD) age of subjects was 63.2 (11.4) years. The total S-SNAP score ranged from 22 to 88 (maximum 88). The overall Cronbach's alpha was 0.94 while item-total correlations varied from 0.26 to 0.87. Total SNAP score showed inverse correlations with age, Charleson Comorbidity index and Barthel index while a positive correlation was seen with the Karnofsky performance status scale (p < 0.05). Kaiser-Meyer-Olkein value of 0.92 (P = < 0.001) for Bartlett's test indicated adequate sampling and non-linearity of factors. The scree plot showed a four-factor structure explaining 76% variation. Meaning of life and relationship with a supernatural being and religious rituals are loaded as 2 different factors. Worries, fears and forgiveness are grouped as the third factor while relaxation, coping and sharing feelings are loaded separately.

Conclusions: The S-SNAP is a reliable and valid tool to assess spiritual suffering among patients with cancers conversant in the Sinhala language.

Background: Knowledge of health care utilization at the end of life in Parkinson's disease (PD) is sparse. This study aims to investigate end of life health care utilization, characterized by emergency room (ER) visits, receipt of specialized palliative care (SPC), and acute hospital deaths in a Swedish population-based PD cohort.

Methods: We conducted a retrospective cohort study on deceased patients (≥ 18 years) with a PD diagnosis during their last year of life (n = 922), based on health care-provider data from Region Stockholm´s data warehouse, for the study period 2015-2021. Univariable and multivariable logistic regression analyses tested associations and adjusted Odds ratios (aORs) were calculated.

Results: During the last month of life, approx. half of the cohort had emergency room (ER) visits and risk of frailty (measured by Hospital Frailty Risk Score) significantly predicted these visits (aOR, 3.90 (2.75-5.55)). In total, 120 people (13%) received SPC during their last three months of life, which positively associated with risk for frailty, (aOR, 2.65 (1.43-4.94, p = 0.002). In total, 284 people (31%) died in acute hospital settings. Among community-dwellers, male gender and frailty were strongly associated with acute hospital deaths (aOR, 1.90 (1.15-3.13, p = 0.01) and 3.70 (1.96-6.98, p < 0.0001)).

Conclusions: Rates of ER visits at end of life and hospital deaths were relatively high in this population-based cohort. Considering a high disease burden, referral to SPC at end of life was relatively low. Sex-specific disparities in health care utilization are apparent. Identifying people with high risk for frailty could assist the planning of optimal end-of-life care for people with PD.

Background: Cancer affects not only the person with the disease but those around them. Being a family member is described as strenuous and, often, associated with stress, anxiety and feelings of loneliness. There is a heightened risk of distress for family of those with fast-progressing, severe oesophageal or gastric cancer. Early palliative care involving family is vital yet often overlooked. In order to include family members in early palliative care their management in everyday life needs to be explored.

Method: Qualitative inductive interview study using content analysis guided by Graneheim and Lundman.

Result: The analysis resulted in the overarching theme "Managing the disease together but still alone". Three categories were identified: Adapting to the disease, Taking control of the situation, Processing emotions. Each category described family members management in various aspects of everyday life together with the ill person and alone.

Conclusion: The results may contribute to an awareness of family members' management of large parts of everyday life and, further, their feelings of loneliness, and indicates that family members should be included early in oesophageal or gastric cancer palliative care. Further studies are needed to develop the content of such family-inclusive early palliative care.

Background: Palliative care is becoming an essential component of healthcare, but there is insufficient research on how integration across different levels of care (micro, meso, and macro) is realized in practice. Without such integration, care may become fragmented, leading to suboptimal patient outcomes. While many studies have explored palliative care models, there is a gap in understanding how priorities for integrated care align across these levels within healthcare ecosystems. Specifically, it is unclear whether key actions at each level are shared, coordinated, and supported effectively, making it difficult to implement sustainable, cohesive care strategies. Our study aims to explore the extent to which important goals (i.e., priorities) are shared across the micro, meso, and macro levels of the palliative care ecosystem in Flanders, Belgium.

Methods: We applied a multimethod study using the analytic hierarchy process method (AHP). This consists of three sequential steps: a broad literature search and interviews with Belgian stakeholders (n = 12) to determine the criteria for the organization of integrated care; focus groups (n = 8) with patients, their relatives and caregivers to establish the completeness and relevance of the criteria; and prioritization of the criteria using a questionnaire among 305 Flemish participants (patients, relatives, caregivers and policy makers).

Results: Our findings revealed that integration is imbalanced, with priorities being most emphasized at the micro level (57%), followed by the meso (29%) and macro (14%) level. Functional enablers dominate at the macro (80%) and meso organizational level (67%), while normative enablers are emphasized at the meso professional (67%) and micro level (75%). Effective palliative care requires vertical coordination of these enablers: for instance, transparent communication with patients at the micro level depends on cross-organizational information exchange at the meso level, supported by a unified data system at the macro level.

Conclusion: Achieving integrated palliative care requires deliberate alignment of priorities across all levels of the ecosystem. While each level plays a unique role, palliative care is comprehensive and effective only by sharing both functional and normative enablers across micro, meso, and macro level.

Background: Effective medication management is crucial for ensuring timely pain and symptom control at the end of life. Dying in pain is a major concern for patients, yet some find less effective pain control at home. Family caregivers (FCGs) play a vital role in managing pain and symptom control for dying patients. However, the experience of administering medications at home for terminal-stage patients has not been widely recognized or understood. Our study aimed to explore the experiences of FCGs in administering medications to adult dying patients.

Methods: We conducted a directed content analysis of data from 73 semi-structured interviews with FCGs across 19 Chinese provinces from 2021 to 2023. FCGs were recruited through the Voluntary Cooperative Network Research. We asked, "Could you recall the end-of-life care process for the patients?" We aligned the themes with the five issues identified by Wilson et al. (2018): administration, organizational skills, empowerment, relationships, and support.

Results: FCGs in China exhibit concerns about over-engagement and empowerment in medication administration, concealing medication information from the patient, and medication accessibility. FCGs faced significant challenges in accurately identifying and addressing pain and symptoms, determining appropriate dosages, accessing effective medications, and managing the emotional stress associated with potential medication errors. Financial burden, medication regulatory restrictions, geographical inequality, and travel restrictions during COVID impeded patients and FCGs from accessing medication. A culturally specific finding is the use of alternative medicine at the end of life.

Conclusion: Our findings build upon Wilson et al.'s framework and extend their insights on empowerment, highlighting the need for policies to support home-based palliative care professionals in training FCGs for effective medication administration.

Background: Cancer patients benefit from Virtual Reality (VR) in burdensome situations, but evidence is scarce for palliative situations. Based on earlier work in palliative care, individualized VR interventions like seeing the patient's home may address a patient's wish to be at home and thus have a greater effect compared to standard VR content. Yet, some patients and relatives may be concerned about their privacy. Also, patient stakeholders raised concerns about triggering depressed mood or homesickness.

Aim: To test the feasibility and safety of individualized vs. standard 360°video VR interventions in palliative cancer inpatients.

Methods: Prospective observational study with patient-reported outcome measurement using validated instruments of well-being (MDBF), symptoms and psychosocial burden (IPOS), cybersickness (SSQ), presence experience (SPES), subjective benefit (2 items), content analysis of interviews, and field notes. Individualized VR content was recorded with action camcorder-technology to protect the patients' privacy.

Results: Seventeen patients participated, median age 65 years (range 20-82), 9 women (53%), 8 single or widowed (47%), 4 childless (23.5%), 4 academics (23.5%), with a median length of stay of 9 days (1-75) in the hematology (10), palliative care (3), or radiotherapy (2) unit of a German university hospital. Eight patients (53.3%) chose their own home environments or family for individualized VR-content. All participants enjoyed the intervention. Compared to standard VR content the individualized VR tended to have a stronger effect on well-being and emotional touch. It was not inferior in terms of psychosocial burden and cybersickness. No subjective and relevant side effects occurred. The patients well tolerated the assessments. However, most patients demanded a lighter headset and a desire for more interactivity.

Conclusions: Individualization of VR content shows potential for enhancement of immersion, which improves the VR experience and does not harm in terms of depressed mood or worsening of symptoms. The patients' and family desire for privacy is feasible with the support of family members who recorded the individualized videos, which is easily manageable today. We suggest a pragmatic randomized clinical trial to compare the effects of individualized vs. standard VR-content.

Trial registration: Registered at German Clinical Trials Register (Deutsches Register Klinischer Studien; DRKS); registration number: DRKS00032172; registration date: 11/07/2023.

Background and objectives: The growing number of terminally ill patients has underscored the importance of equipping healthcare workers with adequate palliative care knowledge and self-efficacy. This study aimed to compare the palliative care knowledge and self-efficacy of nurses in intensive care units (ICUs) with those in general wards at hospitals affiliated with Kerman University of Medical Sciences in 2023.

Methods: This descriptive-comparative cross-sectional study involved nurses from intensive care units and general wards of three hospitals affiliated with Kerman University of Medical Sciences, for a total sample size of 300 nurses (150 in each group). The samples were selected using convenience sampling. The data collection tools included a demographic information questionnaire, the Palliative Care Knowledge Test (PCKT), and the Palliative Care Self-Efficacy Scale (PCSES). Convenience Sampling method was used. The data were analyzed using SPSS 23. Descriptive statistics (frequency, percentage, mean, and standard deviation) and inferential statistics (independent t-test, Mann-Whitney U test and multivariate stepwise regression) were employed. Statistical significance was determined by a p-value of ≤ 0.05.

Findings: The mean score for palliative care knowledge was 10.59 (± 2.10) for nurses in intensive care units and 10.43 (± 2.33) for nurses in general wards, with no significant difference between the two groups (P = 0.53). Similarly, the mean score for palliative care self-efficacy was 28.01 (± 10.29) for nurses in intensive care units and 27.98 (± 10.33) for nurses in general wards, with no significant difference between the groups (P = 0.98). Variables such as the history of caring for dying patients in the hospital (P = 0.004) or at home (P = 0.01), workplace (P = 0.002), and work experience (P = 0.03) were identified as the main predictors of palliative care knowledge and palliative care self-efficacy was affected by age (P < 0.001), history of participation in palliative care training courses (P = 0.008), and palliative care knowledge score (P = 0.01).

Discussion and conclusion: This study revealed no significant difference in total scores of palliative care knowledge or self-efficacy between nurses in intensive care units and general wards It is suggested that more efforts be made to increase the knowledge and self-efficacy of all nurses, especially nurses in ICU departments, till providing a standard palliative care setting.

Background: The prevalence of dementia is increasing worldwide and many people with the condition require some level of palliative care. However, the trajectories of function and symptom burden in palliative care services at the end of life remain unclear. This study aimed to describe and compare the longitudinal trajectories of function and symptom burden among patients with dementia between hospital versus palliative community care services in the last two weeks of life.

Methods: A retrospective cohort study used data from the Australian Palliative Care Outcomes Collaboration. Patients with dementia who died between 1 January 2013 and 31 December 2020 from the Australian Palliative Care Outcomes Collaboration. Four validated clinical instruments were used to collect outcomes on each individual's function and symptom distress and severity. Multilevel models were used to estimate the differences in clinical trajectories between hospital and community-based palliative care in the last two weeks of life.

Results: Patients with dementia tended to have low levels of distress for most symptoms but increasing levels of functional impairment. There were no or only marginally significant differences in the symptom trajectories between the community and hospital groups (OR ranged from 0.57 to 1.97). Although clinical trajectories of function were relatively similar between two groups, statistically higher functional indicators were observed for people when admitted to community palliative care services (OR = 0.42 and 2.27, respectively).

Conclusions: Our findings suggest that community-based palliative care services can be as effective as hospital-based care for many patients with dementia nearing the end of life. With appropriate support for families, community-based care could serve as a viable alternative to hospital-based care for some patients in the final stages of dementia.