Roche, M;
Higgs, P;
Aworinde, J;
Cooper, C;
(2020)
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
10.1093/geront/gnaa004.
(In press).
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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.
| Type: | Article |
|---|---|
| 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? |
| Location: | United States |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1093/geront/gnaa004 |
| Publisher version: | https://doi.org/10.1093/geront/gnaa004 |
| Language: | English |
| Additional information: | This work is licensed under a Creative Commons Attribution 4.0 International License. The images or other third party material in this article are included in the Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/ |
| Keywords: | Cultural nuance, Diversity and identity, Ethnic discordance, Racial terminology issues |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry |
| URI: | https://discovery-pp.ucl.ac.uk/id/eprint/10092376 |
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