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Assessing Momentary Well-Being in People Living With Dementia: A Systematic Review of Observational Instruments.

ABSTRACT: Optimizing the possibility to lead good lives is at the core of treatment and care for people with dementia. This may be monitored by assessing well-being and quality of life. However, cognitive impairment following dementia may complicate recall-based assessment with questionnaires, and proxy-ratings from family-caregivers do not correspond well to self-reports. Thus, using observational measures represents a potentially advanced option. Systematic reviews evaluating measurement properties, interpretability and feasibility of observational instruments assessing well-being in people living with dementia are lacking. Thus, this review performed systematic searches to find peer reviewed validated instruments of relevance in the databases MEDLINE, EMBASE, PsycINFO, Web of Science, CINAHL and ProQuest. Twenty-two instruments assessing well-being were included for evaluation of measurement properties based on the systematic approach of the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN). The evaluation included risk of bias on study level, and assessment of measurement properties on instrument level including content validity, construct validity, structural validity, internal consistency, measurement invariance, cross-cultural validity, measurement error and inter-rater/intra-rater/test-retest reliability and responsiveness. Additionally, the feasibility and interpretability of the measures were evaluated. No single instrument could be recommended based on existing publications. Thus, we provide general recommendations about further assessment and development of these instruments. Finally, we describe the most promising instruments and offer guidance with respect to their implementation and use in clinical and research contexts.

SUBMITTER: Madso KG

PROVIDER: S-EPMC8649635 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundEnabling people with dementia to 'live well' is a policy and research priority in many countries. However, instruments for measuring outcomes of psychosocial interventions designed to promote well-being in dementia are often derived from a symptom-focused, loss/deficit approach, or from broad quality of life concepts. A pan-European dementia working group called for research on the development of an alternative asset/strengths-based conceptual framework of well-being in dementia. This paper takes forward this recommendation by developing such a framework and using this to map relevant self-report outcome measures.MethodsThree scoping reviews of published studies were conducted iteratively. First, we examined the literature on lived experiences of well-being and quality of life in people with dementia and then the wider dementia literature for application of well-being constructs. The synthesised findings generated conceptual domains of well-being in people with dementia. Corresponding self-report instruments used in dementia research were scoped, categorised within the conceptual framework and their potential value in measuring outcomes for people with dementia was examined.FindingsSix conceptual domains for the measurement of well-being and 35 self-report instruments that have been used with people with dementia were identified. Six instruments were developed specifically for people with dementia, five were derived from the gerontological literature and 24 from the well-being literature. Fifteen instruments and one sub-scale have been examined for psychometric properties amongst people with dementia. To date, 20 have been used as outcome measures, with seven measuring change over time. A number of identified instruments utilise traditional retrospective Likert-scaling response formats, limiting their potential for use with some groups of people with dementia.ConclusionAn assets/strengths-based framework is presented, outlining structural domains for selecting self-report measures of well-being in people with dementia. It provides a foundation for enhancing research into processes and outcomes of psychosocial interventions, including instrument development, more precise matching of intervention aims with outcome measurement, and newer technology-based 'in-the-moment' measurement.

Project description:Feelings of well-being and happiness fluctuate over time and contexts. Ecological Momentary Assessment (EMA) studies can capture fluctuations in momentary behavior, and experiences by assessing these multiple times per day. Traditionally, EMA was performed using pen and paper. Recently, due to technological advances EMA studies can be conducted more easily with smartphones, a device ubiquitous in our society. The goal of this review was to evaluate the literature on smartphone-based EMA in well-being research in healthy subjects. The systematic review was conducted according to the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines. Searching PubMed and Web of Science, we identified 53 studies using smartphone-based EMA of well-being. Studies were heterogeneous in designs, context, and measures. The average study duration was 12.8 days, with well-being assessed 2–12 times per day. Half of the studies included objective data (e.g. location). Only 47.2% reported compliance, indicating a mean of 71.6%. Well-being fluctuated daily and weekly, with higher well-being in evenings and weekends. These fluctuations disappeared when location and activity were accounted for. On average, being in nature and physical activity relates to higher well-being. Working relates to lower well-being, but workplace and company do influence well-being. The important advantages of using smartphones instead of other devices to collect EMAs are the easier data collection and flexible designs. Smartphone-based EMA reach far larger maximum sample sizes and more easily add objective data to their designs than palm-top/PDA studies. Smartphone-based EMA research is feasible to gain insight in well-being fluctuations and its determinants and offers the opportunity for parallel objective data collection. Most studies currently focus on group comparisons, while studies on individual differences in well-being patterns and fluctuations are lacking. We provide recommendations for future smartphone-based EMA research regarding measures, objective data and analyses. Electronic supplementary material The online version of this article (10.1007/s10902-020-00324-7) contains supplementary material, which is available to authorized users.

Project description:PurposeMost of what is known about resident burnout and wellness comes from cross-sectional snapshot surveys. The purpose of this study was to elicit qualitative perspectives on wellness from a cohort of internal residents over time using ecological momentary assessment.MethodDrawing on principles of ecological momentary assessment, 13 different open-ended survey prompts were delivered between October and March during the 2019-2020 academic year. Participants were 88 randomly selected internal medicine residents from 4 internal medicine training programs in the Northeast.ResultsThe response rate was 95%. Three main themes regarding wellness were self, program/education environment, and medical/structural system. A fourth theme, the desire to provide quality patient care, cut across all other themes. The patient care theme repeatedly stressed residents' desire to spend more time with patients. The self theme primarily reflected messages about personal emotions and the need for work-life balance and wellness. The program/education environment theme reflected the value of learning, teamwork and community, and program culture. The medical/structural system theme showed that residents' experiences were shaped by the efficiency of their days and largely a product of their schedules and administrative support. Closing advice to future trainees was optimistic and reassuring.ConclusionsWhile findings support much of what has been learned via single-occasion survey snapshots, an ecological momentary assessment design allowed a deeper dive into contextual associations. The results affirm the primacy of patient care and also highlight the value of teamwork and culture. Peers and program leaders are heavily influential in setting the tone for the learning experience, whether for the day or with a more enduring message of respect and support. There is opportunity to maximize high- or higher-value learning experiences for residents and find solutions to reduce and reframe the perceived "low-value administrative work" that is part of care coordination.

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Assessing Momentary Well-Being in People Living With Dementia: A Systematic Review of Observational Instruments.

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