Grey literature scoping review: a synthesis of the application of participatory methodologies in underrepresented groups at an elevated risk of dementia

Background Diverse populations are more exposed to life course influences on adverse ageing, including brain ageing. Research into dementia in the United Kingdom inadvertently lacks diversity. Therefore, there is a need for more inclusive dementia research, developed in a way to ensure those who are...

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Autores: Messiha, Katrina, Thomas, Nicole, Brayne, Carol, Agnello, Danielle Marie, Delfmann, Lea Rahel, Giné-Garriga, Maria, Lippke, Sonia, Downey, John
Tipo de recurso: artículo
Fecha de publicación:2025
País:España
Institución:Universitat Ramon Llull (URL)
Repositorio:DAU Arxiu Digital de la Universitat Ramon Llull
OAI Identifier:oai:dnet:dau_________::2d4930af0529c8fbed7212d131535618
Acceso en línea:http://hdl.handle.net/20.500.14342/6255
https://doi.org/10.1186/s12874-025-02577-3
Access Level:acceso abierto
Palabra clave:Envelliment
Demència
Co-creació
Revisió sistemàtica
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spelling Grey literature scoping review: a synthesis of the application of participatory methodologies in underrepresented groups at an elevated risk of dementiaMessiha, KatrinaThomas, NicoleBrayne, CarolAgnello, Danielle MarieDelfmann, Lea RahelGiné-Garriga, MariaLippke, SoniaDowney, JohnEnvellimentDemènciaCo-creacióRevisió sistemàticaBackground Diverse populations are more exposed to life course influences on adverse ageing, including brain ageing. Research into dementia in the United Kingdom inadvertently lacks diversity. Therefore, there is a need for more inclusive dementia research, developed in a way to ensure those who are currently missing from standard health data are represented. This may warrant the use of co-creation (emphasising collaborative creation and solution development), drawing on participatory methodologies in healthcare, research and service delivery. Methods This study presents a scoping review of grey literature using Arksey and O’Malley’s methodology. Literature was sourced from the Patient Experience Library and supplemented by a targeted Google Scholar search, employing snowball sampling to identify additional materials. The search strategy incorporated keywords such as “marginalised”, “vulnerable”, “disadvantaged” and participatory terms like “co-creation” and “co-design”. Two reviewers independently screened and extracted key higher-level attributes (e.g., type of report, purpose of the activity (design), participating stakeholders/target populations) as well as data related to “co-creation process dimensions” and “participation levels”. Results Our review identified 30 grey literature reports on participatory methodologies among underrepresented groups living with or at elevated risk of dementia, covering diverse locations within the United Kingdom. The reported activities aimed to enhance healthcare and social services through stakeholder participation. Our findings highlight a focus on multi-stakeholder collaborative action as the dominant co-creation dimension identified. However, there was also a notable absence of more inclusive methodologies, with consultation being the most commonly used approach. Conclusions Our scoping review highlights the value of grey literature in understanding participatory methodologies for underrepresented populations at risk of or living with dementia. It reveals there is still a potential need to shift from mere consultations to sustained partnerships, promoting meaningful inclusion and greater ownership of (health) outcomes among these populations.info:eu-repo/semantics/publishedVersionBMCUniversitat Ramon Llull. Facultat de Psicologia, Ciències de l'Educació i de l'Esport Blanquerna202620262025info:eu-repo/semantics/article13application/pdfhttp://hdl.handle.net/20.500.14342/6255https://doi.org/10.1186/s12874-025-02577-3reponame:DAU Arxiu Digital de la Universitat Ramon Llullinstname:Universitat Ramon Llull (URL)InglésBMC Medical Research Methodology, 25,122 (2025)© L'autor/aAttribution-NonCommercial-NoDerivatives 4.0 Internationalhttp://creativecommons.org/licenses/by-nc-nd/4.0/info:eu-repo/semantics/openAccessoai:dnet:dau_________::2d4930af0529c8fbed7212d1315356182026-06-21T06:40:37Z
dc.title.none.fl_str_mv Grey literature scoping review: a synthesis of the application of participatory methodologies in underrepresented groups at an elevated risk of dementia
title Grey literature scoping review: a synthesis of the application of participatory methodologies in underrepresented groups at an elevated risk of dementia
spellingShingle Grey literature scoping review: a synthesis of the application of participatory methodologies in underrepresented groups at an elevated risk of dementia
Messiha, Katrina
Envelliment
Demència
Co-creació
Revisió sistemàtica
title_short Grey literature scoping review: a synthesis of the application of participatory methodologies in underrepresented groups at an elevated risk of dementia
title_full Grey literature scoping review: a synthesis of the application of participatory methodologies in underrepresented groups at an elevated risk of dementia
title_fullStr Grey literature scoping review: a synthesis of the application of participatory methodologies in underrepresented groups at an elevated risk of dementia
title_full_unstemmed Grey literature scoping review: a synthesis of the application of participatory methodologies in underrepresented groups at an elevated risk of dementia
title_sort Grey literature scoping review: a synthesis of the application of participatory methodologies in underrepresented groups at an elevated risk of dementia
dc.creator.none.fl_str_mv Messiha, Katrina
Thomas, Nicole
Brayne, Carol
Agnello, Danielle Marie
Delfmann, Lea Rahel
Giné-Garriga, Maria
Lippke, Sonia
Downey, John
author Messiha, Katrina
author_facet Messiha, Katrina
Thomas, Nicole
Brayne, Carol
Agnello, Danielle Marie
Delfmann, Lea Rahel
Giné-Garriga, Maria
Lippke, Sonia
Downey, John
author_role author
author2 Thomas, Nicole
Brayne, Carol
Agnello, Danielle Marie
Delfmann, Lea Rahel
Giné-Garriga, Maria
Lippke, Sonia
Downey, John
author2_role author
author
author
author
author
author
author
dc.contributor.none.fl_str_mv Universitat Ramon Llull. Facultat de Psicologia, Ciències de l'Educació i de l'Esport Blanquerna
dc.subject.none.fl_str_mv Envelliment
Demència
Co-creació
Revisió sistemàtica
topic Envelliment
Demència
Co-creació
Revisió sistemàtica
description Background Diverse populations are more exposed to life course influences on adverse ageing, including brain ageing. Research into dementia in the United Kingdom inadvertently lacks diversity. Therefore, there is a need for more inclusive dementia research, developed in a way to ensure those who are currently missing from standard health data are represented. This may warrant the use of co-creation (emphasising collaborative creation and solution development), drawing on participatory methodologies in healthcare, research and service delivery. Methods This study presents a scoping review of grey literature using Arksey and O’Malley’s methodology. Literature was sourced from the Patient Experience Library and supplemented by a targeted Google Scholar search, employing snowball sampling to identify additional materials. The search strategy incorporated keywords such as “marginalised”, “vulnerable”, “disadvantaged” and participatory terms like “co-creation” and “co-design”. Two reviewers independently screened and extracted key higher-level attributes (e.g., type of report, purpose of the activity (design), participating stakeholders/target populations) as well as data related to “co-creation process dimensions” and “participation levels”. Results Our review identified 30 grey literature reports on participatory methodologies among underrepresented groups living with or at elevated risk of dementia, covering diverse locations within the United Kingdom. The reported activities aimed to enhance healthcare and social services through stakeholder participation. Our findings highlight a focus on multi-stakeholder collaborative action as the dominant co-creation dimension identified. However, there was also a notable absence of more inclusive methodologies, with consultation being the most commonly used approach. Conclusions Our scoping review highlights the value of grey literature in understanding participatory methodologies for underrepresented populations at risk of or living with dementia. It reveals there is still a potential need to shift from mere consultations to sustained partnerships, promoting meaningful inclusion and greater ownership of (health) outcomes among these populations.
publishDate 2025
dc.date.none.fl_str_mv 2025
2026
2026
dc.type.none.fl_str_mv info:eu-repo/semantics/article
format article
dc.identifier.none.fl_str_mv http://hdl.handle.net/20.500.14342/6255
https://doi.org/10.1186/s12874-025-02577-3
url http://hdl.handle.net/20.500.14342/6255
https://doi.org/10.1186/s12874-025-02577-3
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.relation.none.fl_str_mv BMC Medical Research Methodology, 25,122 (2025)
dc.rights.none.fl_str_mv © L'autor/a
Attribution-NonCommercial-NoDerivatives 4.0 International
http://creativecommons.org/licenses/by-nc-nd/4.0/
info:eu-repo/semantics/openAccess
rights_invalid_str_mv © L'autor/a
Attribution-NonCommercial-NoDerivatives 4.0 International
http://creativecommons.org/licenses/by-nc-nd/4.0/
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv 13
application/pdf
dc.publisher.none.fl_str_mv BMC
publisher.none.fl_str_mv BMC
dc.source.none.fl_str_mv reponame:DAU Arxiu Digital de la Universitat Ramon Llull
instname:Universitat Ramon Llull (URL)
instname_str Universitat Ramon Llull (URL)
reponame_str DAU Arxiu Digital de la Universitat Ramon Llull
collection DAU Arxiu Digital de la Universitat Ramon Llull
repository.name.fl_str_mv
repository.mail.fl_str_mv
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