BACKGROUND: Minority ethnic groups are often excluded from research, and the reasons for this are complex. OBJECTIVE: This study aimed to explore why minority ethnic groups do not participate in research, and how their participation can be increased. METHODS: Ninety-one interviews were undertaken with people who either had (n = 48) or had not (n = 43) responded to the invitation to take part in a community heart failure screening study. These were split across four ethnic groups (African Caribbean, Bangladeshi, Indian and Pakistani) and between men and women. Participants were interviewed once, face-to-face, either in English or with an interpreter if they wished. Interview transcripts were analysed thematically. RESULTS: The main reason for participating in the screening study was for a health/heart check. Many participants either had not understood that it was research or had not known what this meant. Most people who did not participate had not remembered receiving the invitation or had been unavailable at the time. Few participants, including those who had and those who had not participated in the screening study, had any understanding of the objectives and nature of research. Once this had been briefly explained to them, many described altruistic reasons for why they would participate in research in the future. CONCLUSIONS: We have shown that South Asians and Black African-Caribbean communities are willing to take part in research as long as they are approached directly and the reasons for the research and potential benefits are explained clearly to them.
BACKGROUND: Minority ethnic groups are often excluded from research, and the reasons for this are complex. OBJECTIVE: This study aimed to explore why minority ethnic groups do not participate in research, and how their participation can be increased. METHODS: Ninety-one interviews were undertaken with people who either had (n = 48) or had not (n = 43) responded to the invitation to take part in a community heart failure screening study. These were split across four ethnic groups (African Caribbean, Bangladeshi, Indian and Pakistani) and between men and women. Participants were interviewed once, face-to-face, either in English or with an interpreter if they wished. Interview transcripts were analysed thematically. RESULTS: The main reason for participating in the screening study was for a health/heart check. Many participants either had not understood that it was research or had not known what this meant. Most people who did not participate had not remembered receiving the invitation or had been unavailable at the time. Few participants, including those who had and those who had not participated in the screening study, had any understanding of the objectives and nature of research. Once this had been briefly explained to them, many described altruistic reasons for why they would participate in research in the future. CONCLUSIONS: We have shown that South Asians and Black African-Caribbean communities are willing to take part in research as long as they are approached directly and the reasons for the research and potential benefits are explained clearly to them.
Authors: Saskia C Sanderson; Michael A Diefenbach; Randi Zinberg; Carol R Horowitz; Margaret Smirnoff; Micol Zweig; Samantha Streicher; Ethylin Wang Jabs; Lynne D Richardson Journal: J Community Genet Date: 2013-06-22
Authors: Donna M Lecky; Deborah Nakiboneka-Ssenabulya; Tom Nichols; Peter Hawkey; Kim Turner; Keun-Taik Chung; Mike Thomas; Helen Lucy Thomas; Li Xu McCrae; Sahida Shabir; Susan Manzoor; Adela Alvarez-Buylla; Steve Smith; Cliodna McNulty Journal: BMJ Open Date: 2017-12-10 Impact factor: 2.692
Authors: Catherine John; Nicola F Reeve; Robert C Free; Alexander T Williams; Ioanna Ntalla; Aliki-Eleni Farmaki; Jane Bethea; Linda M Barton; Nick Shrine; Chiara Batini; Richard Packer; Sarah Terry; Beverley Hargadon; Qingning Wang; Carl A Melbourne; Emma L Adams; Catherine E Bee; Kyla Harrington; José Miola; Nigel J Brunskill; Christopher E Brightling; Julian Barwell; Susan E Wallace; Ron Hsu; David J Shepherd; Edward J Hollox; Louise V Wain; Martin D Tobin Journal: Int J Epidemiol Date: 2019-06-01 Impact factor: 7.196