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:Many patients show deterioration in functioning and increased care needs in the last year of life. End-of-life care needs and health care utilization might differ between groups of acutely hospitalized older patients.Aim:To investigate differences in geriatric conditions, advance care planning, and health care utilization in patients with cancer, organ failure, or frailty, who died within 1 year after acute hospitalization.Design:Prospective cohort study conducted between 2002 and 2008, with 1-year follow-up.Setting:University teaching hospital in the Netherlands.Participants:Aged ⩾65 years, acutely hospitalized for ⩾48 h, and died within 1 year after hospitalization. At admission, all patients received a systematic comprehensive geriatric assessment. Hospital records were searched for advance care planning information and health care utilization. Differences between patient groups were calculated.Results:In total, 306 patients died within 1 year after acute admission (35%) and were included; 151 with cancer, 98 with end-stage organ failure, and 57 frail older persons. At hospital admission, 72% of the frail group had delirium and/or severe pre-existing cognitive impairment. The frail and organ failure group had many pre-existing disabilities. Three months post-discharge, 75% of the frail and organ failure group had died, 45% of these patients had an advance care plan in their hospital records.Conclusion:Patients with frailty and organ failure had highest rates of geriatric conditions at hospital admission and often had missing information on advance care planning in the hospital records. There is a need to better identify end-of-life needs for these groups.
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Memory forms the input for future behavior. Therefore, how individuals remember a certain experience may be just as important as the experience itself. The peak-and-end-rule (PE-rule) postulates that remembered experiences are best predicted by the peak emotional valence and the emotional valence at the end of an experience in the here and now. The PE-rule, however, has mostly been assessed in experimental paradigms that induce relatively simple, one-dimensional experiences (e.g. experienced pain in a clinical setting). This hampers generalizations of the PE-rule to the experiences in everyday life. This paper evaluates the generalizability of the PE-rule to more complex and heterogeneous experiences by examining the PE-rule in a virtual reality (VR) experience, as VR combines improved ecological validity with rigorous experimental control. Findings indicate that for more complex and heterogeneous experiences, peak and end emotional valence are inferior to other measures (such as averaged valence and arousal ratings over the entire experiential episode) in predicting remembered experience. These findings suggest that the PE-rule cannot be generalized to ecologically more valid experiential episodes.
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Quality of life serves a reference against which you can measure the various domains of your own life or that of other individuals, and that can change over time. This definition of the World Health Organization encompasses many elements of daily living, including features of the individual and the environment around us, which can either be the social environment, the built environment, or other environmental aspects. This is one of the rationales for the special issue on “Quality of Life: The Interplay between Human Behaviour, Technology and the Environment”. This special issue is a joint project by the Centre of Expertise Health Innovation of the Hague University of Applied Sciences in The Netherlands. The main focus of this Special Issue is how optimising the interplay between people, the environment, and technology can enhance people’s quality of life. The focus of the contributions in this special issue is on the person or end‐user and his or her environment, both the physical, social, and digital environment, and on the interaction between (1) people, (2) health, care, and systems, and (3) technology. Recent advances in technology offer a wide range of solutions that support a healthy lifestyle, good quality of life, and effective and efficient healthcare processes, for a large number of end‐users, both patients/clients from minus 9 months until 100+ years of age, as well as practitioners/physicians. The design of new services and products is at the roots of serving the quality of life of people. Original article at MDPI; DOI: https://doi.org/10.3390/ijerph16245106 (Editorial of Special Issue with the same title: "Quality of Life: The Interplay between Human Behaviour, Technology and the Environment")
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Impaired motor function is a prominent characteristic of aging. Inflammatory processes and oxidative stress from advanced glycation end-products are related to impaired motor function and could plausibly be a contributing factor to the pathogenesis of paratonia, a specific motor disorder in people with dementia. Severe paratonia results in a substantial increase of a caretaker's burden and a decrease in the quality of life. The pathogenesis of paratonia is not well understood, and no effective interventions are available to combat it. Intensive glycaemic control, reducing oxidative stress, possibly combined with a low AGE diet and AGE targeting medication may be the key method for preventing advanced glycation end-product accumulation and reducing the inflammatory burden as well as possibly postponing or preventing paratonia.
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Abstract Purpose To determine the predictive value of quality of life for mortality at the domain and item levels. Methods This longitudinal study was carried out in a sample of 479 Dutch people aged 75 years or older living independently, using a follow-up of 7 years. Participants completed a self-report questionnaire. Quality of life was assessed with the WHOQOL-BREF, including four domains: physical health, psychological, social relationships, and environment. The municipality of Roosendaal (a town in the Netherlands) indicated the dates of death of the individuals. Results Based on mean, all quality of life domains predicted mortality adjusted for gender, age, marital status, education, and income. The hazard ratios ranged from 0.811 (psychological) to 0.933 (social relationships). The areas under the curve (AUCs) of the four domains were 0.730 (physical health), 0.723 (psychological), 0.693 (social relationships), and 0.700 (environment). In all quality of life domains, at least one item predicted mortality (adjusted). Conclusion Our study showed that all four quality of life domains belonging to the WHOQOL-BREF predict mortality in a sample of Dutch community-dwelling older people using a follow-up period of 7 years. Two AUCs were above threshold (psychological, physical health). The findings offer health care and welfare professionals evidence for conducting interventions to reduce the risk of premature death.
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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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Introduction Many health care interventions have been developed that aim to improve or maintain the quality of life for frail elderly. A clear overview of these health care interventions for frail elderly and their effects on quality of life is missing. Purpose To provide a systematic overview of the effect of health care interventions on quality of life of frail elderly. Methods A systematic search was conducted in Embase, Medline (OvidSP), Cochrane Central, Cinahl, PsycInfo and Web of Science, up to and including November 2017. Studies describing health care interventions for frail elderly were included if the effect of the intervention on quality of life was described. The effects of the interventions on quality of life were described in an overview of the included studies. Results In total 4,853 potentially relevant articles were screened for relevance, of which 19 intervention studies met the inclusion criteria. The studies were very heterogeneous in the design: measurement of frailty, health care intervention and outcome measurement differ. Health care interventions described were: multidisciplinary treatment, exercise programs, testosterone gel, nurse home visits and acupuncture. Seven of the nineteen intervention studies, describing different health care interventions, reported a statistically significant effect on subdomains of quality of life, two studies reported a statistically significant effect of the intervention on the overall quality of life score. Ten studies reported no statistically significant difference between the intervention and control groups. Conclusion Reported effects of health care interventions on frail elderly persons’ quality of life are inconsistent, with most of the studies reporting no differences between the intervention and control groups. As the number of frail elderly persons in the population will continue to grow, it will be important to continue the search for effective health care interventions. Alignment of studies in design and outcome measurements is needed.
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Emotions are a key component of tourism experiences, as emotions make experiences more valued and more memorable. Peak-and-end-theory states that overall experience evaluations are best predicted by the emotions at the most intense and final moments of an experience. Peak-and-end-theory has mostly been studied for relatively simple experiences. Recent insights suggest that peak-and-end-theory does not necessarily hold for tourism experiences, which tend to be more heterogeneous and multi-episodic in nature. Through the novel approach of using electrophysiological measures in combination with experience reconstruction, the applicability of the peak-and-end-theory to the field of tourism is addressed by studying a musical theatre show in a theme park resort. Findings indicate that for a multi-episodic tourism experience, hypotheses from the peak-and-end-theory are rejected for the experience as a whole, but supported for individual episodes within the experience. Furthermore, it is shown that electrophysiology sheds a new light on the temporal dynamics of experience
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Estimating the remaining useful life (RUL) of an asset lies at the heart of prognostics and health management (PHM) of many operations-critical industries such as aviation. Mod- ern methods of RUL estimation adopt techniques from deep learning (DL). However, most of these contemporary tech- niques deliver only single-point estimates for the RUL without reporting on the confidence of the prediction. This practice usually provides overly confident predictions that can have severe consequences in operational disruptions or even safety. To address this issue, we propose a technique for uncertainty quantification (UQ) based on Bayesian deep learning (BDL). The hyperparameters of the framework are tuned using a novel bi-objective Bayesian optimization method with objectives the predictive performance and predictive uncertainty. The method also integrates the data pre-processing steps into the hyperparameter optimization (HPO) stage, models the RUL as a Weibull distribution, and returns the survival curves of the monitored assets to allow informed decision-making. We vali- date this method on the widely used C-MAPSS dataset against a single-objective HPO baseline that aggregates the two ob- jectives through the harmonic mean (HM). We demonstrate the existence of trade-offs between the predictive performance and the predictive uncertainty and observe that the bi-objective HPO returns a larger number of hyperparameter configurations compared to the single-objective baseline. Furthermore, we see that with the proposed approach, it is possible to configure models for RUL estimation that exhibit better or comparable performance to the single-objective baseline when validated on the test sets.
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