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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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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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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A first episode of psychosis (FEP) is a stressful, often life-changing experience. Scarce information is available about personal preferences regarding their care needs during and after a FEP. Whereas a more thorough understanding of these preferences is essential to aid shared decision-making during treatment and improve treatment satisfaction. Methods: Face-to-face interviews with participants in remission of a FEP were setup, addressing personal preferences and needs for care during and after a FEP. The interviews were conducted by a female and a male researcher, the latter being an expert with lived experience. Results: Twenty individuals in remission of a FEP were interviewed, of which 16 had been hospitalized. The distinguished themes based on personal preferences were tranquility, peace and quietness, information, being understood, support from significant others, and practical guidance in rebuilding one's life. Our findings revealed that the need for information and the need to be heard were often not sufficiently met. For 16/20 participants, the tranquility of inpatient treatment of the FEP was pre-dominantly perceived as a welcome safe haven. The presence and support of family and close friends were mentioned as an important factor in the process of achieving remission.
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Background: During the process of decision-making for long-term care, clients are often dependent on informal support and available information about quality ratings of care services. However, clients do not take ratings into account when considering preferred care, and need assistance to understand their preferences. A tool to elicit preferences for long-term care could be beneficial. Therefore, the aim of this qualitative descriptive study is to understand the user requirements and develop a web-based preference elicitation tool for clients in need of longterm care. Methods: We applied a user-centred design in which end-users influence the development of the tool. The included end-users were clients, relatives, and healthcare professionals. Data collection took place between November 2017 and March 2018 by means of meetings with the development team consisting of four users, walkthrough interviews with 21 individual users, video-audio recordings, field notes, and observations during the use of the tool. Data were collected during three phases of iteration: Look and feel, Navigation, and Content. A deductive and inductive content analysis approach was used for data analysis. Results: The layout was considered accessible and easy during the Look and feel phase, and users asked for neutral images. Users found navigation easy, and expressed the need for concise and shorter text blocks. Users reached consensus about the categories of preferences, wished to adjust the content with propositions about well-being, and discussed linguistic difficulties. Conclusion: By incorporating the requirements of end-users, the user-centred design proved to be useful in progressing from the prototype to the finalized tool ‘What matters to me’. This tool may assist the elicitation of client’s preferences in their search for long-term care.
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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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Background: The majority of patients diagnosed with early-stage breast cancer are in a position to choose between having a mastectomy or lumpectomy with radiation therapy (breast-conserving therapy). Since the long-term survival rates for mastectomy and for lumpectomy with radiation therapy are comparable, patients’ informed preferences are important for decision-making. Although most clinicians believe that they do include patients in the decision-making process, the information that women with breast cancer receive regarding the surgical options is often rather subjective, and does not invite patients to express their preferences. Shared decision-making (SDM) is meant to help patients clarify their preferences, resulting in greater satisfaction with their final choice. Patient decision aids can be very supportive in SDM. We present the protocol of a study to β test a patient decision aid and optimise strategies for the implementation of SDM regarding the treatment of early-stage breast cancer in the actual clinical setting. Methods/design: This paper concerns a preimplementation and post-implementation study, lasting from October 2014 to June 2015. The intervention consists of implementing SDM using a patient decision aid. The intervention will be evaluated using qualitative and quantitative measures, acquired prior to, during and after the implementation of SDM. Outcome measures are knowledge about treatment, perceived SDM and decisional conflict. We will also conduct face-to-face interviews with a sample of these patients and their care providers, to assess their experiences with the implementation of SDM and the patient decision aid.
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Offering physical activities matching with the preferences of residents in long-term care facilities could increase compliance and contribute to client-centered care. A measure to investigate meaningful activities by using a photo-interview has been developed (“MIBBO”). In two pilot studies including 133 residents living on different wards in long-term care facilities, feasibility, most chosen activities, and consistency of preferences were investigated. It was possible to conduct the MIBBO on average in 30 min with the majority (86.4%) of residents. The most frequently chosen activities were: gymnastics and orchestra (each 28%), preparing a meal (31%), walking (outside, 33%), watering plants (38%), and feeding pets (40%). In a retest one week after the initial interview 69.4% agreement of chosen activities was seen. The MIBBO seems a promising measure to help health care professionals in identifying residents’ preferred activities. Future research should focus on the implementation of the tailored activity plan, incorporating it into the daily routine.
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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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