Grey literature scoping review: a synthesis of the application of participatory methodologies in underrepresented groups at an elevated risk of dementia
Abstract 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 thos...
Saved in:
| Main Authors: | , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMC
2025-05-01
|
| Series: | BMC Medical Research Methodology |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12874-025-02577-3 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1850109966941159424 |
|---|---|
| author | Katrina Messiha Nicole Thomas Carol Brayne Danielle M. Agnello Lea R. Delfmann Maria Giné-Garriga Sonia Lippke John Downey |
| author_facet | Katrina Messiha Nicole Thomas Carol Brayne Danielle M. Agnello Lea R. Delfmann Maria Giné-Garriga Sonia Lippke John Downey |
| author_sort | Katrina Messiha |
| collection | DOAJ |
| description | Abstract 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. Ethics and dissemination Ethical approval was not required for this grey literature scoping review. Clinical trial number Not applicable. |
| format | Article |
| id | doaj-art-e1bb42b3b7dc4ff694c1c81adc4b424a |
| institution | OA Journals |
| issn | 1471-2288 |
| language | English |
| publishDate | 2025-05-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Research Methodology |
| spelling | doaj-art-e1bb42b3b7dc4ff694c1c81adc4b424a2025-08-20T02:37:57ZengBMCBMC Medical Research Methodology1471-22882025-05-0125111310.1186/s12874-025-02577-3Grey literature scoping review: a synthesis of the application of participatory methodologies in underrepresented groups at an elevated risk of dementiaKatrina Messiha0Nicole Thomas1Carol Brayne2Danielle M. Agnello3Lea R. Delfmann4Maria Giné-Garriga5Sonia Lippke6John Downey7Department of Public and Occupational Health, Amsterdam Public Health Research Institute, Amsterdam UMC, Vrije Universiteit AmsterdamCambridge Public Health, Department of Psychiatry, Herschel Smith Building, University of Cambridge School of Clinical MedicineCambridge Public Health, Department of Psychiatry, Herschel Smith Building, University of Cambridge School of Clinical MedicineSchool of Health & Life Sciences, Glasgow Caledonian UniversityDepartment of Public Health and Primary Care, Faculty of Medicine and Health Sciences, Ghent UniversityDepartment of Sport Sciences, Faculty of Psychology, Education and Sport Sciences Blanquerna, Universitat Ramon LlullSchool of Business, Social & Decision Sciences, Constructor UniversitySchool of Nursing and Midwifery, University of PlymouthAbstract 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. Ethics and dissemination Ethical approval was not required for this grey literature scoping review. Clinical trial number Not applicable.https://doi.org/10.1186/s12874-025-02577-3AgeingBrain healthCo-creationCo-designCo-productionSuper diversity |
| spellingShingle | Katrina Messiha Nicole Thomas Carol Brayne Danielle M. Agnello Lea R. Delfmann Maria Giné-Garriga Sonia Lippke John Downey Grey literature scoping review: a synthesis of the application of participatory methodologies in underrepresented groups at an elevated risk of dementia BMC Medical Research Methodology Ageing Brain health Co-creation Co-design Co-production Super diversity |
| title | 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_short | 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 |
| topic | Ageing Brain health Co-creation Co-design Co-production Super diversity |
| url | https://doi.org/10.1186/s12874-025-02577-3 |
| work_keys_str_mv | AT katrinamessiha greyliteraturescopingreviewasynthesisoftheapplicationofparticipatorymethodologiesinunderrepresentedgroupsatanelevatedriskofdementia AT nicolethomas greyliteraturescopingreviewasynthesisoftheapplicationofparticipatorymethodologiesinunderrepresentedgroupsatanelevatedriskofdementia AT carolbrayne greyliteraturescopingreviewasynthesisoftheapplicationofparticipatorymethodologiesinunderrepresentedgroupsatanelevatedriskofdementia AT daniellemagnello greyliteraturescopingreviewasynthesisoftheapplicationofparticipatorymethodologiesinunderrepresentedgroupsatanelevatedriskofdementia AT leardelfmann greyliteraturescopingreviewasynthesisoftheapplicationofparticipatorymethodologiesinunderrepresentedgroupsatanelevatedriskofdementia AT mariaginegarriga greyliteraturescopingreviewasynthesisoftheapplicationofparticipatorymethodologiesinunderrepresentedgroupsatanelevatedriskofdementia AT sonialippke greyliteraturescopingreviewasynthesisoftheapplicationofparticipatorymethodologiesinunderrepresentedgroupsatanelevatedriskofdementia AT johndowney greyliteraturescopingreviewasynthesisoftheapplicationofparticipatorymethodologiesinunderrepresentedgroupsatanelevatedriskofdementia |