Evidence map›Paper›PMID 31832863›Full record

ArticleJournal of bioethical inquiry2019

"A Real Bucket of Worms": Views of People Living with Dementia and Family Members on Supported Decision-Making.

Craig Sinclair, Kate Gersbach, Michelle Hogan, Meredith Blake, Romola Bucks, Kirsten Auret, Josephine Clayton, Cameron Stewart, Sue Field, Helen Radoslovich and 5 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of bioethical inquiry, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
17citing papers in PubMed, 2 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

17 citing papers in PubMed, 2 syntheses or guidelines pooled it.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

15 authors.

Craig SinclairRural Clinical School of Western Australia, University of Western Australia Albany Centre, 31 Stirling Terrace, Albany, Western Australia, 6330, Australia. c.sinclair@unsw.edu.au.ORCID http://orcid.org/0000-0003-2734-2951
Kate GersbachBrightwater Group, 3/355 Scarborough Beach Road, Osborne Park, Western Australia, 6017, Australia.
Michelle HoganHelping Hand Aged Care, 34 Molesworth Street, North Adelaide, South Australia, 5006, Australia.
Meredith BlakeUWA Law School, University of Western Australia, 35 Stirling Highway, Crawley, Western Australia, 6009, Australia.
Romola BucksSchool of Psychological Science, University of Western Australia, 35 Stirling Highway, Crawley, Western Australia, 6009, Australia.
Kirsten AuretRural Clinical School of Western Australia, University of Western Australia Albany Centre, 31 Stirling Terrace, Albany, Western Australia, 6330, Australia.
Josephine ClaytonHammondCare Centre for Learning & Research in Palliative Care and Northern Clinical, School, Greenwich Hospital, University of Sydney, Sydney, New South Wales, 2065, Australia.
Cameron StewartUniversity of Sydney Law School, University of Sydney, Sydney, New South Wales, 2006, Australia.
Sue FieldUWA Law School, University of Western Australia, Hackett Drive, Crawley, Western Australia, 6009, Australia.
Helen RadoslovichHelping Hand Aged Care, 34 Molesworth Street, North Adelaide, South Australia, 5006, Australia.
Meera AgarImproving Palliative, Aged and Chronic Care through Clinical Research and Translation, (IMPACCT), University of Technology Sydney, 235 Jones Street, Ultimo, New South Wales, 2007, Australia.
Angelita MartiniBrightwater Group, 3/355 Scarborough Beach Road, Osborne Park, Western Australia, 6017, Australia.
Meredith GreshamHammondCare Dementia Centre, 97 River Road, Greenwich, New South Wales, 2065, Australia.
Kathy WilliamsDementia Australia Consumer Dementia Network, National Office, 42 MacQuarie Street, Barton, Canberra, Australian Capital Territory, 2600, Australia.
Sue KurrleNorthern Clinical School, University of Sydney, Sydney, New South Wales, 2006, Australia.

Funding

Cognitive Decline Partnership Centre 1324
6 · The paper itself

Abstract

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six interviews (twenty-one dyadic and fifteen individual) were undertaken with fifty-seven participants (twenty-five people living with dementia and thirty-two family members) across three states in Australia. Interpretative Phenomenological Analysis (IPA) was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants' experiences with decision-making: "the person in relationship over time" and "maintaining involvement." Participant views on the practical issues associated with supported decision-making are addressed under the themes of "facilitating decision-making," "supported decision-making arrangements," "constraints on decision-making," and "safeguarding decision-making." While participants endorsed the principles of supported decision-making as part of their overarching strategy of "maintaining involvement" in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual "constraints on decision-making" also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a "spectrum approach" to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population.

Indexed as

Decision MakingAgedAged, 80 and overAustraliaDementiaFamilyFemaleHumansInterviews as TopicMaleMental CompetencyMiddle AgedProxyTime FactorsAlzheimer’sCapacityDementiaPhenomenologySubstitute decision-makingSupported decision-making

Identifiers

PMID31832863
PMCPMC6937221

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.