dc.contributor.author | Roche, M | |
dc.contributor.author | Higgs, P | |
dc.contributor.author | Aworinde, J | |
dc.contributor.author | Cooper, C | |
dc.date.accessioned | 2024-06-21T09:11:31Z | |
dc.date.available | 2024-06-21T09:11:31Z | |
dc.date.issued | 2020-02-20 | |
dc.identifier.citation | Moïse Roche, Paul Higgs, Jesutofunmi Aworinde, Claudia Cooper, A Review of Qualitative Research of Perception and Experiences of Dementia Among Adults From Black, African, and Caribbean Background: What and Whom Are We Researching?, The Gerontologist, Volume 61, Issue 5, August 2021, Pages e195–e208, https://doi.org/10.1093/geront/gnaa004 | en_US |
dc.identifier.issn | 0016-9013 | |
dc.identifier.uri | https://qmro.qmul.ac.uk/xmlui/handle/123456789/97596 | |
dc.description.abstract | Background and Objectives
Black, African, and Caribbean (BAC) families are disproportionately affected by dementia but engage less with services. Studies reporting their experiences of dementia have tended to aggregate people from diverse backgrounds, without considering the impact of this diversity, or researchers’ ethnicities. We investigated participants’ and researchers’ ethnic identities, exploring how this relates to findings.
Research Design and Methods
We searched electronic databases in September 2018, for qualitative studies exploring how participants of Black ethnicity understand and experience dementia and dementia care. We reported participants’ and researchers’ ethnicities, and meta-synthesized qualitative findings regarding how ethnicity influences experiences and understanding of dementia.
Results
Twenty-eight papers reported 25 studies; in United States (n = 17), United Kingdom (n = 7), and Netherlands (n = 1). 350/492 (71%) of participants were in U.S. studies and described as African American; participants in U.K. studies as Caribbean (n = 45), African/Caribbean (n = 44), African (n = 28), Black British (n = 7), or Indo-Caribbean (n = 1); and in Netherlands as Surinamese Creole (n = 17). 6/25 (24%) of studies reported involving recruiters/interviewers matching participants’ ethnicity; and 14/25 (56%) involved an author/advisor from a BAC background during analysis/procedures. We identified four themes: Dementia does not relate to me; Inappropriate and disrespectful services; Kinship and responsibility; Importance of religion.
Discussion and Implications
Studies were mostly from a U.S. African American perspective, by researchers who were not of BAC background. Themes of dementia diagnosis and services feeling less relevant to participants than the majority population resonated across studies. We caution against the racialization of these findings, which can apply to many differing minority groups. | en_US |
dc.format.extent | E195 - E208 | |
dc.publisher | Oxford University Press | en_US |
dc.relation.ispartof | GERONTOLOGIST | |
dc.rights | This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited. | |
dc.subject | Ethnic discordance | en_US |
dc.subject | Cultural nuance | en_US |
dc.subject | Diversity and identity | en_US |
dc.subject | Racial terminology issues | en_US |
dc.title | A Review of Qualitative Research of Perception and Experiences of Dementia Among Adults From Black, African, and Caribbean Background: What and Whom Are We Researching? | en_US |
dc.type | Article | en_US |
dc.rights.holder | © The Author(s) 2020. Published by Oxford University Press on behalf of The Gerontological Society of America. | |
dc.identifier.doi | 10.1093/geront/gnaa004 | |
pubs.author-url | https://www.webofscience.com/api/gateway?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000685224800004&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=612ae0d773dcbdba3046f6df545e9f6a | en_US |
pubs.issue | 5 | en_US |
pubs.notes | Not known | en_US |
pubs.publication-status | Published | en_US |
pubs.volume | 61 | en_US |
rioxxterms.funder | Default funder | en_US |
rioxxterms.identifier.project | Default project | en_US |
qmul.funder | Exploring and meeting the needs of Black African and Caribbean elders with dementia and their family carers: a qualitative study::Alzheimer's Society | en_US |