BMC Palliative Care最新文献

Background: Web-based interventions targeted at family caregivers has become a quickly expanding research field, none the least since a growing number of patients with incurable illness are being cared for at home. Spouses, who are also family caregivers, constitute an especially vulnerable group in need of support when they are cohabitating with the ill patient and research shows that communication regarding the illness is important, yet challenging. This study therefore explored effects of a family caregiver-targeted web-based psycho-educational intervention on communication about incurable illness and remaining life between spouses and patients receiving specialized home care.

Methods: The study had a pre-post-design. An intervention containing videos and texts about family caregiving was developed and made accessible via a website. Thirty-nine spouses (67% women, median age: 61) were recruited from specialised home care services. At baseline, and after 4 weeks of access to the website, spouses completed a questionnaire about communication with the patient regarding incurable illness and remaining life. Data was analyzed using the Wilcoxon signed-rank test.

Results: No significant changes were found between baseline and follow-up. Most spouses did, however, report having talked with the patient about the illness being incurable (64%) and how the illness affected the patient physically (64%) and psychologically (77%) during the past month already at baseline. Regarding communication about the remaining life and how to manage once the patient had passed away, 46-59% instead reported not having had these conversations with the patient ever.

Conclusions: A majority of the spouses had talked about aspects of the illness and its consequences already at baseline, indicating that these matters are important to spousal caregivers of patients with incurable illness. However, a sizeable portion had not ever talked to the patient about how to manage once the patient had passed away, suggesting there are barriers to such conversations that need to be further explored. Future research on web-based psychoeducational interventions targeted at family caregivers need to address barriers and the diverse support needs regarding communication, especially about the remaining life, among spouses of patients with incurable illness.

Trial registration: The study was first registered on clinicaltrials.gov(NCT03676283) on 2018.09.12.

Background: With an increased number of people living with multiple progressive diseases, online education courses have been created to address the growing need for competence in palliative care. However, there is limited knowledge about the form and content of these courses, or of participants' experiences. This study aims to map the status, content, and evaluation of online palliative care courses in Sweden.

Methods: This exploratory study used both quantitative and qualitative methods. The study process involved searching for online palliative care courses on the web and through contact with Swedish palliative care organisations, and then participating in these courses, surveying education providers, and analysing and validating responses. Quantitative data were analysed using descriptive statistics, while thematic analysis was applied to the free-text responses.

Results: Nine online courses provided by five different organisations were mapped. These courses educated over 30 000 healthcare professionals, predominantly assistant nurses and registered nurses. There was a large discrepancy between the number of people who enrolled in and the number who completed the online courses. Shortcomings identified related to lack of systematic evaluation from the participants' perspectives, if and how knowledge was integrated into clinical practice, and difficulties in making the courses sustainable.

Conclusion: Overarching and national systems for online education are needed. These would require sustainability considerations and guidelines for implementation, evaluation and follow-up of non-university-based online educational initiatives in palliative care. In addition, it is crucial for employers to support professionals undergoing such education, ensuring that they are given opportunities to share their feelings and discuss any challenging thoughts that arise during and after the course.

Background: The psychosocial needs of families in which a parent is affected by life-threatening illness and has dependent children are extensive. However, few family-based interventions have been scientifically evaluated and even fewer have been evaluated long term. Therefore, the specific objectives of this study were to describe the parents' perceptions of the timing and length of FTI in relation to the illness trajectory, to explore what activities learnt by the FTI still were practiced in the long-term and what content of FTI was perceived as most valuable to cope in the long-term.

Methods: This qualitative study involved a follow-up with nine parents (ill parents, n = 3, coparents, n = 6) 4 to 5 years after participating in FTI, where one parent was cared for in specialised palliative homecare. FTI is a psychosocial family-based intervention that consists of 6-11 manual-based meetings with the families led by an educated interventionist. FTI focuses on facilitating family communication about illness-related subjects, supporting parenting, and making the children's needs visible. The data collection consisted of interviews and was analysed according to the phenomenographic method, focused on variations in perceptions.

Results: The parents perceived FTI as a way to alleviate feelings of loneliness, and some families were still using the obtained communication tools at the time of the interview. They also perceived that FTI contributed to the children being more open about their own feelings and thoughts. However, the parents wanted extended support after FTI ended based on their individual needs, for example, during and after bereavement, deteriorated health or occasional challenges faced by children in crisis. The parents perceived the peer support gained in conjunction with FTI as important social and emotional support both during and after the intervention. The interventionists were perceived as professional persons who promoted open and honest communication during FTI.

Conclusion: FTI is found to promote family communication both in a short- and long-term perspectives according to parents. They also found FTI useful in reducing their feelings of loneliness. Support over a longer period of time is desired and extra FTI meetings may strengthen the family as a whole in parallel with additional support for parents and children during the illness trajectory and in bereavement. They received support in dealing with strong and difficult emotions and learned conversational techniques that they still used at the time of the interview, indicating that the lessons learnt was integrated and valuable many years after the last FTI meeting.

Background: Specialized outpatient palliative care (SAPV) is a component of palliative care in Germany, which assists approximately 10% of palliative patients. The majority of these patients have a malignant disease and are at increased risk of complications or severe infection. Antibiotic stewardship (ABS) measures are implemented to optimize antibiotic administration; however, there is little data available in this area, particularly for SAPV. Therefore, we examined the extent to which ABS measures can be meaningfully used or implemented in SAPV.

Methods: After establishing a corresponding interview guide, 15 experts from specialized areas were interviewed on this subject by the Institute for Market Research in Healthcare Munich (IMIG) through audio-registered individual interviews. The interviews were analyzed using the qualitative content analysis method according to Mayring.

Results: All 15 experts participated. The primary benefits cited were greater safety in the prescription and decision-making process for antibiotics in the areas of SAPV and improved quality of life. The implementation of continuous ABS measures for SAPV was considered difficult in some cases and linked to certain prerequisites, such as supportive advice from existing systems. The possibility of further training for SAPV members in the area of ABS was considered particularly advantageous.

Conclusions: The implementation of ABS measures in SAPV is feasible in principle; however, it is difficult to implement under the current conditions. Close cooperation with an existing external ABS expert/team will be helpful. This will provide more security for a small, but relevant proportion of SAPV patients, and for the SAPV team treating them.

Background: Early palliative care interventions in oncology, as recommended by international oncology societies, promote patient understanding and support decision-making. At the same time, shared decision-making models are being developed to enhance patient participation as part of a new model of patient-physician relationship. For patients with palliative needs, this participation is essential and helps to avoid futile and aggressive treatments at the end of life. The aim of this study is to observe decision making during meetings between oncology and palliative care professionals, focusing particularly on the components of shared decision-making models, but also on the role played by palliative care professionals.

Methods: We conducted a non-participant observation of multidisciplinary meetings and outpatient clinic activities in two Comprehensive Cancer Centres in France. Field notes were then coded using thematic content analysis. Deductive analysis was conducted using the observation grid developed from Elwyn's three-talk model.

Results: Only a few elements of the different models of shared decision-making are apparent in the multidisciplinary meetings. Palliative care professionals emphasise the importance of involving patients and providing them with information about the advantages and disadvantages of different treatment options. However, patient involvement in decision-making remains difficult in daily practice. Decisions to discontinue oncological treatment are often driven by clinical and biological signs of terminal evolution rather than shared decision-making.

Conclusions: There are still cultural and organisational barriers to actual implementation of early integrated onco-palliative care. Promotion of shared decision making can be a strong lever of change which is frequently mobilised by palliative care teams.

Background: Palliative Sedation (PS) at the end of life is practiced and perceived differently by health professionals depending on the geographical location in which they provide their health care. Taking into account this heterogeneity, it is necessary to expand knowledge and provide data on this clinical practice in different contexts and countries. On the other hand, the identification of factors associated with PS could help healthcare professionals, at an early stage, to identify patients more likely to require sedation. The aim of this study was to describe the prevalence and characteristics related to PS in a specialised Palliative Care setting, as well as to analyse factors that could be associated with this procedure.

Methods: This was a cross-sectional study including n = 533 patients who died during the study period in a Palliative Care Unit. Clinical and functional (Barthel and Palliative Performance Scale) variables and the level of complexity were collected. For each patient we assessed whether PS had been performed and, if so, we described the type of sedation, continuity and depth, refractory symptoms, medication used, informed consent and place of death. A multivariate logistic regression model was used to analyse the relationship between several independent variables and PS.

Results: The prevalence of PS was 16.7% (n = 82). Most frequent refractory symptoms were delirium (36.1%), pain (31.9%) and dyspnoea (25%). Factors associated with having a higher odds of PS were having already started treatment with strong opioids (OR = 2.10; 95% CI = 1.16-3.90) and a lower dependency for activities of daily living (OR = 0.41; 95% CI = 0.23-0.70) on admission at PC. Informed consent for sedation was given mainly by representation and only in 19% of cases by the patient himself.

Conclusions: Early opioid use and functional status act as factors associated with PS, becoming as clinical evaluations of particular interest during the disease trajectory, which could help to improve individualised care plans for patients at the end of life.

Background: Maintaining quality of care and improving the quality of life (QOL) of patients and their families are important issues in palliative care. Therefore, there is a need to continuously evaluate the quality and outcomes of the care provided. In Japan, the Japan hospice and palliative evaluation (J-HOPE) study series has been conducted every three to four years since 2010, and we will conduct the fifth J-HOPE study (J-HOPE5). In the present paper, we describe the protocol of the J-HOPE5 study. The main objectives are: (1) to evaluate the processes, structures and outcomes of care at hospices or palliative care units; (2) to examine bereaved family members' self-reported psychosocial condition, such as grief and depression as bereavement outcomes; (3) to provide data to ensure and improve the quality of care provided by participating institutions via feedback based on the results from each institution; and (4) to provide clinical and academic information regarding the implications of various issues in palliative care by conducting specific research.

Methods: We will conduct a cross-sectional, anonymous, self-reported questionnaire survey. In total, 153 institutions have agreed to participate in this study, meaning that approximately 12,240 bereaved family members (n = 80/institution) will be sent a questionnaire.

Discussion: This is one of the largest cross-sectional bereavement surveys to evaluate the quality of specialized palliative care for patients with cancer, both in Japan and worldwide. The large sample size of this study will enable wide analyses of specific targets and topics.

Background: People experiencing homelessness access specialist palliative care late in their illness trajectory, if at all. There is also little evidence they receive generalist palliative care or are given opportunities to engage in Advance Care Planning. This qualitative study describes the central role of key workers in supporting access to healthcare in homeless communities and identifies implications for improving palliative care provision.

Methods: Qualitative data were collected via focus groups and individual interviews with staff working for a key provider of support and housing/accommodation for people experiencing homelessness in an urban area of Aotearoa New Zealand.

Results: The ability to provide palliative care for people experiencing homelessness is dependent upon supporting engagement with mainstream health services. It is here that we identified the key worker role as central due to the complex and expert work they undertake to facilitate healthcare access for their clients. As a result of the high burden of chronic conditions this community experiences, most of this work related to support managing serious conditions, as well as death and dying. Key workers often went 'above and beyond' to support their clients in engaging with mainstream health services, during outpatient appointments, hospital admissions and in emergency department settings. They felt clinicians in these settings did not recognise the knowledge they held about the person, or their skills in terms of providing trauma informed care. The inflexibility of current care provision, as well as people experiencing homelessness feeling stigmatised, and neither valued nor respected in these settings, also created barriers to receiving care.

Conclusions: New models of palliative care are required which recognise the central role of non-health care key support staff and engage them more actively in supporting people experiencing homelessness when they interact with mainstream health services. Such models will need to be responsive to the nature and complexity of palliative care need in this population and facilitate support for people who typically do not see healthcare spaces as safe. The trusted relationships key workers have developed over time are crucial resources for identifying palliative care need and supporting access to palliative care for people experiencing homelessness.

Background: Predicting the survival time of patients at the end of life can provide more accurate treatment and care programs for patients. The purpose of this study was to investigate the factors impacting 14-day survival at the end of life.

Method: This was a retrospective study. Patients with advanced cancer admitted to the Department of Palliative Medicine in a tertiary hospital in China in 2021 were included and classified into group A (survival time ≤ 14 days) or group B (survival time > 14 days). Patient demographic characteristics, palliative performance scale (PPS) scores, Barthel index scores, Fracture Risk Assessment Scale (FRAIL) scale scores, clinical features and laboratory test results were extracted from medical records. Univariable and multivariable logistic regression analyses were used to identify predictors of death within 14 days. Survival time was compared between frail and nonfrail patients.

Results: A total of 261 patients were included (122 in group A and 139 in group B), with a median survival time of 17 (13.04, 20.96) days. There were significant differences in age, FRAIL score, PPS, Barthel index, dyspnea, edema, C-reactive protein and white blood cell count between the two groups. According to the multivariable logistic regression analysis, the PPS could predict the risk of death within 14 days (OR = 6.818, 95% CI = 3.944-11.785, p < 0.001). The median survival time was 48 (33.71, 62.29) days in the nonfrail group (n = 34) and 15 (12.46, 17.54) days in the frail group (n = 227) (p < 0.001).

Conclusions: A lower PPS increases the risk of 14-day mortality in patients at the end of life. Frailty may shorten the survival time of patients at the end of life.