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Securing recruitment and obtaining informed consent in minority ethnic groups in the UK

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Lloyd, Cathy E., Johnson, Mark R. D., Mughal, Shanaz, Sturt, Jackie, Collins, Gary S., Roy, Tapash, Bibi, Rukhsana and Barnett, A. H.. (2008) Securing recruitment and obtaining informed consent in minority ethnic groups in the UK. BMC Health Services Research, Vol.8 (No.68). ISSN 1472-6963

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Official URL: http://dx.doi.org/10.1186/1472-6963-8-68

Abstract

Background: Previous health research has often explicitly excluded individuals from minority
ethnic backgrounds due to perceived cultural and communication difficulties, including studies
where there might be language/literacy problems in obtaining informed consent. This study
addressed these difficulties by developing audio-recorded methods of obtaining informed consent
and recording data. This report outlines 1) our experiences with securing recruitment to a
qualitative study investigating alternative methods of data collection, and 2) the development of a
standardised process for obtaining informed consent from individuals from minority ethnic
backgrounds whose main language does not have an agreed written form.
Methods: Two researchers from South Asian backgrounds recruited adults with Type 2 diabetes
whose main language was spoken and not written, to attend a series of focus groups. A screening
tool was used at recruitment in order to assess literacy skills in potential participants. Informed
consent was obtained using audio-recordings of the patient information and recording patients'
verbal consent. Participants' perceptions of this method of obtaining consent were recorded.
Results: Recruitment rates were improved by using telephone compared to face-to-face methods.
The screening tool was found to be acceptable by all potential participants. Audio-recorded
methods of obtaining informed consent were easy to implement and accepted by all participants.
Attrition rates differed according to ethnic group. Snowballing techniques only partly improved
participation rates.
Conclusion: Audio-recorded methods of obtaining informed consent are an acceptable
alternative to written consent in study populations where literacy skills are variable. Further
exploration of issues relating to attrition is required, and a range of methods may be necessary in
order to maximise response and participation r

Item Type:

Journal Article

Subjects:

R Medicine > R Medicine (General)

Divisions:

Faculty of Social Sciences > Economics
Faculty of Medicine > Warwick Medical School > Translational & Systems Medicine > Metabolic and Vascular Health
Faculty of Medicine > Warwick Medical School

Library of Congress Subject Headings (LCSH):

Informed consent (Medical law), Minorities -- Medical care -- Great Britain

Journal or Publication Title:

BMC Health Services Research

Publisher:

Biomed central

ISSN:

1472-6963

Official Date:

30 March 2008

Dates:

Date	Event
30 March 2008	Published

Volume:

Vol.8

Number:

No.68

Identification Number:

10.1186/1472-6963-8-68

Status:

Peer Reviewed

Publication Status:

Published

Access rights to Published version:

Open Access

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