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Exploring Community-Dwelling Older Adults' Considerations About Values and Preferences for Future End-of-Life Care: A Study from Sweden.

ABSTRACT: BACKGROUND AND OBJECTIVES:There is a substantial body of research on advance care planning (ACP), often originating from English-speaking countries and focused on health care settings. However, studies of content of ACP conversations in community settings remain scarce. We therefore explore community-dwelling, older adults' reasoning about end-of-life (EoL) values and preferences in ACP conversations. RESEARCH DESIGN AND METHODS:In this participatory action research project, planned and conducted in collaboration with national community-based organizations, we interviewed 65 older adults without known EoL care needs, about their values and preferences for future EoL care. Conversations were stimulated by sorting and ranking statements in a Swedish version of GoWish cards, called the DöBra cards, and verbatim transcripts were analyzed inductively. RESULTS:While participants shared some common preferences about EoL care, there was great variation among individuals in how they reasoned. Although EoL preferences and prioritizations could be identical, different individuals explained these choices very differently. We exemplify this variation using data from four participants who discussed their respective EoL preferences by focusing on either physical, social, existential, or practical implications. DISCUSSION AND IMPLICATIONS:A previously undocumented benefit of the GoWish/DöBra cards is how the flexibility of the card statements support substantial discussion of an individual's EoL preferences and underlying values. Such in-depth descriptions of participants' reasoning and considerations are important for understanding the very individual nature of prioritizing EoL preferences. We suggest future users of the DöBra/GoWish cards consider the underlying reasoning of individuals' prioritizations to strengthen person-centeredness in EoL conversations and care provision.

SUBMITTER: Eneslatt M

PROVIDER: S-EPMC7491437 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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Exploring Community-Dwelling Older Adults' Considerations About Values and Preferences for Future End-of-Life Care: A Study from Sweden.

Eneslätt Malin M Helgesson Gert G Tishelman Carol C

The Gerontologist 20200901 7

<h4>Background and objectives</h4>There is a substantial body of research on advance care planning (ACP), often originating from English-speaking countries and focused on health care settings. However, studies of content of ACP conversations in community settings remain scarce. We therefore explore community-dwelling, older adults' reasoning about end-of-life (EoL) values and preferences in ACP conversations.<h4>Research design and methods</h4>In this participatory action research project, plann ...[more]

PMID: 32201894

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Project description:BackgroundEnd-of-life preferences may change over time, e.g. due to illness progression or life events. Research on stability of end-of-life preferences has largely focused on life-sustaining treatments in seriously ill patients or medical decision-making based on hypothetical illness scenarios and possible treatment options. Few studies focus on community-dwellers in natural settings. The aim of this study was thus to explore if and how community-dwelling, older adults' prioritizations and reasoning about values and preferences for future end-of-life care change over time.MethodsUsing a mixed-methods design, we explored stability of end-of-life preferences in older community-dwelling adults without imminent end-of-life care needs. At two timepoints (T1 and T2), 5.5-12 months apart, 52 individuals discussed what would be important to them at the end-of-life, through open conversations and while using DöBra cards, a Swedish version of GoWish cards. Participants ranked their most important card statements from 1 to 10. Stability in card rankings, i.e. a card recurring in the top-10 ranking at T2 regardless of position, was explored using descriptive statistics and non-parametric analyses. Participants' reasoning about card choices were explored with longitudinal qualitative analysis.ResultsStability between T1 and T2 in the top-10 priorities ranged from 20 to 80%, median 60%. Stability in cards rankings could not be explained by changes in participants' health status, extent of card use (no/little/frequent use) between interviews, or days between T1 and T2, nor was it related to demographic variables. Qualitative analysis showed that consistent reasoning was not always paired with consistency in card choices and changed card choices were not always related to changes in reasoning.ConclusionsLongitudinal exploration combining DöBra card rankings with underlying reasoning about end-of-life preferences over time furthers knowledge on the dynamics between values and preferences in end-of-life decision-making. Individuals' end-of-life preferences in form of card choices were relatively stable over time albeit with large variation between different individuals. However, the values and underlying reasoning that participants used to motivate their choices appeared more stable than ranking of card choices. We thus conclude that concurrent conversation-based exploration is a more comprehensive indicator of end-of-life values and preferences over time than ranking of cards alone.

Project description:BackgroundAn estimated 20-30% of community-dwelling Canadian adults aged 65 years or older experience one or more falls each year. Fall-related injuries are a leading cause of hospitalization and can lead to functional independence. Many fall prevention interventions, often based on modifiable risk factors, have been studied. Apart from the magnitude of the benefits and harms from different interventions, the preferences of older adults for different interventions as well as the relative importance they place on the different potential outcomes may influence recommendations by guideline panels. These reviews on benefits and harms of interventions, and on patient values and preferences, will inform the Canadian Task Force on Preventive Health Care to develop recommendations on fall prevention for primary care providers.MethodsTo review the benefits and harms of fall prevention interventions, we will update a previous systematic review of randomized controlled trials with adaptations to modify the classification of interventions and narrow the scope to community-dwelling older adults and primary-care relevant interventions. Four databases (MEDLINE, Embase, Cochrane Central Register of Controlled Trials, Ageline), reference lists, trial registries, and relevant websites will be searched, using limits for randomized trials and date (2016 onwards). We will classify interventions according to the Prevention of Falls Network Europe (ProFANE) Group's taxonomy. Outcomes include fallers, falls, injurious falls, fractures, hip fractures, institutionalization, health-related quality of life, functional status, and intervention-related adverse effects. For studies not included in the previous review, screening, study selection, data extraction on outcomes, and risk of bias assessments will be independently undertaken by two reviewers with consensus used for final decisions. Where quantitative analysis is suitable, network or pairwise meta-analysis will be conducted using a frequentist approach in Stata. Assessment of the transitivity and coherence of the network meta-analyses will be undertaken. For the reviews on patient preferences and outcome valuation (relative importance of outcomes), we will perform de novo reviews with searches in three databases (MEDLINE, PsycInfo, and CINAHL) and reference lists for cross-sectional, longitudinal quantitative, or qualitative studies published from 2000. Selection, data extraction, and risk of bias assessments suitable for each study design will be performed in duplicate. The analysis will be guided by a narrative synthesis approach, which may include meta-analysis for health-state utilities. We will use the CINeMa approach to a rate the certainty of the evidence for outcomes on intervention effects analyzed using network meta-analysis and the GRADE approach for all other outcomes.DiscussionWe will describe the flow of literature and characteristics of all studies and present results of all analyses and summary of finding tables. We will compare our findings to others and discuss the limitations of the reviews and the available literature.Systematic review registrationThis protocol has not been registered.

Project description:BackgroundPrevention programs, and specifically exercise, can reduce falls among community-dwelling older adults, but low adherence limits the benefits of effective interventions. Technology may overcome some barriers to improve uptake and engagement in prevention programs, although less is known on adherence for providing them via this delivery mode. We aimed to synthesize evidence for adherence to technology-based falls prevention programs in community-dwelling older adults 60 years and older. We conducted a systematic review following standard guidelines to identify randomized controlled trials for remote delivered (i.e., no or limited in-person sessions) technology-based falls prevention programs for community-dwelling older adults. We searched nine sources using Medical Subject Headings (MeSH) terms and keywords (2007-present). The initial search was conducted in June 2023 and updated in December 2023. We also conducted a forward and backward citation search of included studies. Two reviewers independently conducted screening and study assessment; one author extracted data and a second author confirmed findings. We conducted a random effects meta-analysis for adherence, operationalized as participants' completion of program components, and aimed to conduct meta-regressions to examine factors related to program adherence and the association between adherence and functional mobility. We included 11 studies with 569 intervention participants (average mean age 74.5 years). Studies used a variety of technology, such as apps, exergames, or virtual synchronous classes. Risk of bias was low for eight studies. Five interventions automatically collected data for monitoring and completion of exercise sessions, two studies collected participants' online attendance, and four studies used self-reported diaries or attendance sheets. Studies included some behavior change techniques or strategies alongside the technology. There was substantial variability in the way adherence data were reported. The mean (range) percent of participants who did not complete planned sessions (i.e., dropped out or lost to follow-up) was 14% (0-32%). The pooled estimate of the proportion of participants who were adherent to a technology-based falls prevention program was 0.82 (95% CI 0.68, 0.93) for studies that reported the mean number of completed exercise sessions. Many studies needed to provide access to the internet, training, and/or resources (e.g., tablets) to support participants to take part in the intervention. We were unable to conduct the meta-regression for adherence and functional mobility due to an insufficient number of studies. There were no serious adverse events for studies reporting this information (n = 8). The use of technology may confer some benefits for program delivery and data collection. But better reporting of adherence data is needed, as well as routine integration and measurement of training and skill development to use technology, and behavior change strategies within interventions. There may be an opportunity to rethink or reimagine how technology can be used to support people's adoption and integration of physical activity into daily life routines.

Dataset Information

Exploring Community-Dwelling Older Adults' Considerations About Values and Preferences for Future End-of-Life Care: A Study from Sweden.

Publications

Exploring Community-Dwelling Older Adults' Considerations About Values and Preferences for Future End-of-Life Care: A Study from Sweden.

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