Evidence map›Paper›PMID 38391860›Full record

ArticleHealthcare (Basel, Switzerland)2024

'Misdiagnosed and Misunderstood': Insights into Rarer Forms of Dementia through a Stepwise Approach to Co-Constructed Research Poetry.

Paul M Camic, Mary Pat Sullivan, Emma Harding, Martha Gould, Lawrence Wilson, Sam Rossi-Harries, Adetola Grillo, Roberta McKee-Jackson, Susan M Cox, Joshua Stott and 3 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Healthcare (Basel, Switzerland), 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–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

3 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
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

13 authors.

Paul M CamicDementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London WC1N 3AR, UK.ORCID 0000-0002-4444-6544
Mary Pat SullivanSchool of Social Work, Faculty of Education and Professional Studies, Nipissing University, North Bay, ON P1B 8L7, Canada.
Emma HardingDementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London WC1N 3AR, UK.ORCID 0000-0001-9675-2335
Martha GouldIndependent Researcher, North Bay, ON P1B 8L7, Canada.
Lawrence WilsonIndependent Researcher, Sonic Studios, Rye, East Sussex TN31 7NY, UK.
Sam Rossi-HarriesDementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London WC1N 3AR, UK.
Adetola GrilloSchool of Social Work, Faculty of Education and Professional Studies, Nipissing University, North Bay, ON P1B 8L7, Canada.
Roberta McKee-JacksonDementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London WC1N 3AR, UK.ORCID 0000-0003-3740-3113
Susan M CoxW. Maurice Young Centre for Applied Ethics, School of Population and Public Health, University of British Columbia, Vancouver, BC V6T 1Z3, Canada.ORCID 0000-0001-7459-9587
Joshua StottResearch Department of Clinical, Educational and Health Psychology, University College London, London WC1E 6BT, UK.
Emilie V BrotherhoodDementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London WC1N 3AR, UK.ORCID 0000-0002-6244-7735
Gill WindleAgeing and Dementia @ Bangor, Dementia Services Development Centre, School of Health Sciences, Bangor University, Bangor LL57 2EE, UK.
Sebastian J CrutchDementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, London WC1N 3AR, UK.

Funding

Economic and Social Research Council ES/S010467/1National Institute for Health Research ES/S010467/1
6 · The paper itself

Abstract

This study investigated co-constructed research poetry as a way to understand the lived experiences of people affected by rarer dementia and as a means to use poetry to convey those experiences to healthcare professionals. Using mixed methods, 71 people living with rarer dementia and care-partners (stakeholders) contributed to co-constructing 27 poems with professional poets; stakeholders' verbatim words were analysed with descriptive qualitative analysis. Stakeholders were also surveyed and interviewed about their participation. Healthcare professionals (

Indexed as

arts and healthcaregiverscare-partners (care-partner and carer are used interchangeably in this paper)carershealthcare professionalsinherited dementianon-memory led dementiaqualitativevirtual environmentsyoung onset dementia

Identifiers

PMID38391860
PMCPMC10887667

What OpenQuestion holds

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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.