Enabling participation of Black and Minority Ethnic (BME) and seldom-heard communities in health research: A case study from the SCAMP adolescent cohort study
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Author(s)
Type
Journal Article
Abstract
Aim: To investigate barriers and facilitators to BME parental consent for children’s involvement in data-sharing aspects of study on mobile phone and wireless device use (SCAMP). To co-produce solutions to increase participation.
Methods: Focus groups, telephone interviews, community event, PPI Café; symposium with public, participants and researchers.
Results: Barriers were concerns about the research, practical constraints, poor communication. Facilitators were value of research, benefits to others. Solutions to increase participation were community support and clear, simple communication. Overall, trust in the research and the researchers was a key focus of enabling participation.
Sharing recommendations: Symposium generated ideas about improving participation including tailoring participant information, engaging with local advocates, involving people in research design and delivery.
Key words: Seldom heard, BME, research participation, co-production, PPI, parental consent
Methods: Focus groups, telephone interviews, community event, PPI Café; symposium with public, participants and researchers.
Results: Barriers were concerns about the research, practical constraints, poor communication. Facilitators were value of research, benefits to others. Solutions to increase participation were community support and clear, simple communication. Overall, trust in the research and the researchers was a key focus of enabling participation.
Sharing recommendations: Symposium generated ideas about improving participation including tailoring participant information, engaging with local advocates, involving people in research design and delivery.
Key words: Seldom heard, BME, research participation, co-production, PPI, parental consent
Date Issued
2020-09-22
Date Acceptance
2020-05-05
Citation
Research for All, 2020, 4 (2), pp.207-219
ISSN
2399-8121
Publisher
UCL IOE Press
Start Page
207
End Page
219
Journal / Book Title
Research for All
Volume
4
Issue
2
Copyright Statement
© 2020 Bruton, Jones, Jenkins, Davies, Ward and Toledano. This is an open-access article distributed under the terms of the Creative Commons Attribution Licence (CC BY) 4.0 https://creativecommons.org/licenses/by/4.0/, which permits unrestricted use, distribution and reproduction in any medium, provided the original author and source are credited
License URL
Sponsor
Department of Health
UK Department of Health via the Research Initiative on Health and Mobile Telecommunications
Grant Number
091/0212
Reference number: 091/0212
Publication Status
Published