As migrant populations age, the care system is confronted with the question how to respond to care needs of an increasingly diverse population of older adults. We used qualitative intersectional analysis to examine differential preferences and experiences with care at the end of life of twenty-five patients and their relatives from Suriname, Morocco and Turkey living in The Netherlands. Our analysis focused on the question how–in light of impairment–ethnicity, religion and gender intersect to create differences in social position that shape preferences and experiences related to three main themes: place of care at the end of life; discussing prognosis, advance care, and end-of-life care; and, end-of-life decision-making. Our findings show that belonging to an ethnic or religious minority brings forth concerns about responsive care. In the nursing home, patients’ minority position and the interplay thereof with gender make it difficult for female patients to request and receive responsive care. Patients with a strong religious affiliation prefer to discuss diagnosis but not prognosis. These preferences are at interplay with factors related to socioeconomic status. The oversight of this variance hampers responsive care for patients and relatives. Preferences for discussion of medical aspects of care are subject to functional impairment and faith. Personal values and goals often remain unexpressed. Lastly, preferences regarding medical end-of-life decisions are foremost subject to religious affiliation and associated moral values. Respondents’ impairment and limited Dutch language proficiency requires their children to be involved in decision-making. Intersecting gendered care roles determine that mostly daughters are involved. Considering the interplay of aspects of social identity and their effect on social positioning, and pro-active enquiry into values, goals and preferences for end-of-life care of patients and their relatives are paramount to achieve person centred and family-oriented care responsive to the needs of diverse communities.
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Background Clients facing decision-making for long-term care are in need of support and accessible information. Construction of preferences, including context and calculations, for clients in long-term care is challenging because of the variability in supply and demand. This study considers clients in four different sectors of long-term care: the nursing and care of the elderly, mental health care, care of people with disabilities, and social care. The aim is to understand the construction of preferences in real-life situations. Method Client choices were investigated by qualitative descriptive research. Data were collected from 16 in-depth interviews and 79 client records. Interviews were conducted with clients and relatives or informal caregivers from different care sectors. The original client records were explored, containing texts, letters, and comments of clients and caregivers. All data were analyzed using thematic analysis. Results Four cases showed how preferences were constructed during the decision-making process. Clients discussed a wide range of challenging aspects that have an impact on the construction of preferences, e.g. previous experiences, current treatment or family situation. This study describes two main characteristics of the construction of preferences: context and calculation. Conclusion Clients face diverse challenges during the decision-making process on long-term care and their construction of preferences is variable. A well-designed tool to support the elicitation of preferences seems beneficial.
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Background: end-of-life care is not always in line with end-of-life preferences, so patients do not always die at their preferred place of death (PPD). This study aims to identify factors associated with patients' PPD and changes in PPD. Methods: we prospectively collected data on PPD at four time points within 6 months from 230 acutely hospitalised older patients who were part of the control group in a stepped-wedge randomised controlled trial. Associations between patient characteristics and preferences were calculated using multivariable (multinomial) logistic regression analysis. Results: the mean age of participants was 80.7 years. 47.8% of the patients had no PPD at hospital admission. Patients previously admitted to hospital preferred to die at home (home versus no preference: odds ratio [OR] 2.38, 95% confidence interval [CI] 1.15-4.92; home versus healthcare facility: OR 3.25, 95% CI 1.15-9.16). Patients with more chronic diseases preferred the healthcare facility as their PPD (healthcare facility versus no preference: OR 1.33, 95% CI 1.09-1.61; healthcare facility versus home: OR 1.21, 95% CI 1.00-1.47). 32 of 65 patients changed their preference during follow-up, and most of these had no PPD at hospital admission (home versus no preference: OR 0.005, 95% CI ≤0.001-0.095) and poorer self-rated well-being (OR 1.82, 95% CI 1.07-3.08). Conclusions: almost half of the patients had no PPD at baseline. Previous hospital admission, having more chronic diseases and living alone are associated with having a PPD. Introducing PPD could make older people aware of PPD and facilitate optimal palliative care.
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Background: A transitional care pathway (TCP) could improve care for older patients in the last months of life. However, barriers exist such as unidentified palliative care needs and suboptimal collaboration between care settings. The aim of this study was to determine the feasibility of a TCP, named PalliSupport, for older patients at the end of life, prior to a stepped-wedge randomized controlled trial. Methods: A mixed-method feasibility study was conducted at one hospital with affiliated primary care. Patients were ≥ 60 years and acutely hospitalized. The intervention consisted of (1) training on early identification of the palliative phase and end of life conversations, (2) involvement of a transitional palliative care team during admission and post-discharge and (3) intensified collaboration between care settings. Outcomes were feasibility of recruitment, data collection, patient burden and protocol adherence. Experiences of 14 professionals were assessed through qualitative interviews. Results: Only 16% of anticipated participants were included which resulted in difficulty assessing other feasibility criteria. The qualitative analysis identified misunderstandings about palliative care, uncertainty about professionals' roles and difficulties in initiating end of life conversations as barriers. The training program was well received and professionals found the intensified collaboration beneficial for patient care. The patients that participated experienced low burden and data collection on primary outcomes and protocol adherence seems feasible. Discussion: This study highlights the importance of performing a feasibility study prior to embarking on effectiveness studies. Moving forward, the PalliSupport care pathway will be adjusted to incorporate a more active recruitment approach, additional training on identification and palliative care, and further improvement on data collection.
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Purpose: Collaborative deliberation comprises personal engagement, recognition of alternative actions, comparative learning, preference elicitation, and preference integration. Collaborative deliberation may be improved by assisting preference elicitation during shared decision-making. This study proposes a framework for preference elicitation to facilitate collaborative deliberation in long-term care consultations. Methods: First, a literature overview was conducted comprising current models for the elicitation of preferences in health and social care settings. The models were reviewed and compared. Second, qualitative research was applied to explore those issues that matter most to clients in long-term care. Data were collected from clients in long-term care, comprising 16 interviews, 3 focus groups, 79 client records, and 200 online client reports. The qualitative analysis followed a deductive approach. The results of the literature overview and qualitative research were combined. Results: Based on the literature overview, five overarching domains of preferences were described: “Health”, “Daily life”, “Family and friends”, ”Living conditions”, and “Finances”. The credibility of these domains was confirmed by qualitative data analysis. During interviews, clients addressed issues that matter in their lives, including a “click” with their care professional, safety, contact with loved ones, and assistance with daily structure and activities. These data were used to determine the content of the domains. Conclusion: A framework for preference elicitation in long-term care is proposed. This framework could be useful for clients and professionals in preference elicitation during collaborative deliberation.
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BackgroundHospital admissions are common in the last phase of life. However, palliative care and advance care planning (ACP) are provided late or not at all during hospital admission.AimTo provide insight into the perceptions of in-hospital healthcare professionals concerning current and ideal practice and roles of in-hospital palliative care and advance care planning.MethodsAn electronic cross-sectional survey was send 398 in-hospital healthcare professionals in five hospitals in the Netherlands. The survey contained 48 items on perceptions of palliative care and ACP.ResultsWe included non-specialists who completed the questions of interest, resulting in analysis of 96 questionnaires. Most respondents were nurses (74%). We found that current practice for initiating palliative care and ACP was different to what is considered ideal practice. Ideally, ACP should be initiated for almost every patient for whom no treatment options are available (96.2%), and in case of progression and severe symptoms (94.2%). The largest differences between current and ideal practice were found for patients with functional decline (Current 15.2% versus Ideal 78.5%), and patients with an estimated life expectancy <1 year (Current 32.6% versus ideal 86.1%). Respondents noted that providing palliative care requires collaboration, however, especially nurses noted barriers like a lack of inter-professional consensus.ConclusionsThe differences between current and ideal practice demonstrate that healthcare professionals are willing to improve palliative care. To do this, nurses need to increase their voice, a shared vision of palliative care and recognition of the added value of working together is needed.
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this thesis was simply a research done to see how the manor amsterdam can use technologies to enhance its guest eperience. Surveys and intervews were conducted to see what the guest preferences were after which an implementation process was also drawn up.
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BackgroundSpecialist palliative care teams are consulted during hospital admission for advice on complex palliative care. These consultations need to be timely to prevent symptom burden and maintain quality of life. Insight into specialist palliative care teams may help improve the outcomes of palliative care.MethodsIn this retrospective observational study, we analyzed qualitative and quantitative data of palliative care consultations in a six-month period (2017 or 2018) in four general hospitals in the northwestern part of the Netherlands. Data were obtained from electronic medical records.ResultsWe extracted data from 336 consultations. The most common diagnoses were cancer (54.8%) and organ failure (26.8%). The estimated life expectancy was less than three months for 52.3% of all patients. Within two weeks after consultation, 53.2% of the patients died, and the median time until death was 11 days (range 191) after consultation. Most patients died in hospital (49.4%) but only 7.5% preferred to die in hospital. Consultations were mostly requested for advance care planning (31.6%). End-of-life preferences focused on last wishes and maintaining quality of life.ConclusionThis study provides detailed insight into consultations of palliative care teams and shows that even though most palliative care consultations were requested for advance care planning, consultations focus on end-of-life care and are more crisis-oriented than prevention-oriented. Death often occurs too quickly after consultation for end-of-life preferences to be met and these preferences tend to focus on dying. Educating healthcare professionals on when to initiate advance care planning would promote a more prevention-oriented approach. Defining factors that indicate the need for timely palliative care team consultation and advance care planning could help timely identification and consultation.
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In this paper the first phase of a descriptive research project on musical preferences and music listening habits of first year’s conservatoire students is presented. The paper presents the background of the research project, the construction of a survey and the first results of this survey, which indicate that musical preferences and music listening habits of first year’s conservatoire students are highly varied. Possible refinements for the survey are discussed.The paper ends with first notions on how to not only use the findings for descriptive ends but also put them in the broader perspective of more general research on musical preferences.
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Background: Team-based palliative care interventions have shown positive results for patients at the end of life in both hospital and community settings. However, evidence on the effectiveness of transmural, that is, spanning hospital and home, team-based palliative care collaborations is limited. Aim: To systematically review whether transmural team-based palliative care interventions can prevent hospital admissions and increase death at home. Design: Systematic review and meta-analysis. Data sources: MEDLINE (Ovid), Embase (Ovid), CINAHL (Ebsco), PsychINFO (Ovid), and Cochrane Library (Wiley) were systematically searched until January 2021. Studies incorporating teams in which hospital and community professionals co-managed patients, hospital-based teams with community follow-up, and case-management interventions led by palliative care teams were included. Data was extracted by two researchers independently. Results: About 19 studies were included involving 6614 patients, of whom 2202 received an intervention. The overall pooled odds ratio of at least one hospital (re)admissions was 0.46 (95% confidence interval (CI) 0.34–0.68) in favor of the intervention group. The highest reduction in admission was in the hospital-based teams with community follow-up: OR 0.21 (95% CI 0.07–0.66). The pooled effect on home deaths was 2.19 (95% CI 1.26–3.79), favoring the intervention, with also the highest in the hospital-based teams: OR 4.77 (95% CI 1.23–18.47). However, studies had high heterogeneity regarding intervention, study population, and follow-up time. Conclusion: Transmural team-based palliative care interventions, especially hospital-based teams that follow-up patients at home, show an overall effect on lowering hospital admissions and increasing the number of patients dying at home. However, broad clinical and statistical heterogeneity of included studies results in uncertainty about the effect size.
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