Lloyd, Cathy E., Johnson, Mark, 1948 Mar. 16-, Mughal, Shanaz, Sturt, Jackie, Collins, Gary S., Roy, Tapash, Bibi, Rukhsana and Barnett, A. H. (Anthony H.), 1951-. (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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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 > 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
Date:	30 March 2008
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
References:	1. Harding S, Balarajan R: Longitudinal study of socio-economic differences in mortality among South Asian and West Indian migrants. Ethn Health 2001, 6:121-9. 2. Hemingway H, Whitty CJ, Shipley M, Stansfield MS, Brunner E, Fuhrer R: Psychosocial risk factors for coronary heart disease in White, South Asian and Afro-Caribbean civil servants: the Whitehall II study. Ethn Dis 2001, 11:391-400. 3. Rhodes P, Nocon A: A problem of communication? Diabetes care among Bangladeshi people in Bradford. Health & Soc Care in the Community 2003, 11:45-54. 4. Erens P, Primatesta P, Prior G: Health Survey for England: The health of minority ethnic groups. London, Department of Health; 2001. 5. Baradaran H, Knill-Jones R: Assessing knowledge, attitudes and understanding of Type 2 diabetes amongst ethnic groups in Glasgow, Scotland. Pract Diab Int 2004, 21:143-148. 6. Greenhalgh T, Helman C, Chowdhury AM: Health beliefs and folk models of diabetes in British Bangladeshis: a qualitative study. BMJ 1998, 316:978-983. 7. Vyas A, Haidery AZ, Wiles PG, Gill S, Roberts C, Cruickshank JK: A pilot randomized trial in primary care to investigate and improve knowledge, awareness and self-management among South Asians with diabetes in Manchester. Diabetic Med 2003, 20:1022-1026. 8. Lawton J, Ahmad N, Hanna L, Douglas M, Hallowell N: Diabetes service provision: a qualitative study of the experiences and views of Pakistani and Indian patients with Type 2 diabetes. Diabetic Med 2006, 23:1003-1007. 9. Collins GS, Johnson MRD: Addressing ethnic diversity in health outcome measurement: a systematic and critical review of the literature. [http://www2.warwick.ac.uk/fac/med/research/csri/ ethnicityhealth/research/ethtom_summary/]. 10. Hunt S, Bhopal R: Self-reports in research with non-English speakers. BMJ 2003, 327:352-353. 11. O'Hare P, Raymond NT, Mughal S, Dodd L, Hanif W, Ahmed Y, Mishra K, Jones A, Kumar S, Szczepura A, Hillhouse EW, Barnett AH: Evaluation of enhanced diabetes care to patients of South Asian Ethnicity: The United Kingdom Asian Diabetes Study (UKADS). Diabetic Med 2004, 21:1357-65. 12. Lloyd CE: Researching the views of diabetes service users from South Asian backgrounds; a reflection on some of the issues. In A Reader in Promoting Public Health: Challenge and Controversy Edited by: Douglas J, Earle Handsley S, Lloyd CE, Spurr SM. London: Sage; 2007:140-146. 13. National Patient Safety Agency: National research ethics service [http://www.nres.npsa.nhs.uk]. (accessed 10th March 2008). 14. Bhutta ZA: Beyond informed consent. Bulletin of the World Health Organisation 2004, 82(10):771-777. 15. Newton SK, Appiah-Poku J: The perspectives of researchers on obtaining informed consent in developing countries. Dev World Bioeth 2007, 7:19-24. 16. Helgesson G: How to handle informed consent in longitudinal studies when participants have a limited understanding of the study. J Med Ethics 2005, 31:670-673. 17. Akkad A, Jackson C, Kenyon S, Dixon-Woods M, Taub N, Habiba M: Patients' perceptions of written consent: questionnaire study. BMJ 2006, 333(7567):528. 18. Barata PC, Gucciardi E, Ahmed F, Stewart DE: Cross-cultural perspectives on research participation and informed consent. Soc Sci Med 2006, 62:479-490. 19. Boulton M, Parker M: Informed consent in a changing environment. Social Science and Medicine 2007, 65(11):2187-2198. 20. Lloyd CE, Mughal S, Sturt J, O'Hare P, Barnett AH: Using self-complete questionnaires in a South Asian population with diabetes: problems and solutions. Diversity in Health & Social Care 2006, 3:245-51. 21. McLean CA, Campbell CM: Locating research informants in a multi-ethnic community: ethnic identities, social networks and recruitment methods. Ethnicity & Health 2003, 8:41-61. 22. Bandesha G, Litva A: Perceptions of community participation and health gain in a community project for the South Asian population: A qualitative study. Journal of Public Health 2005, 27:241-245. 23. Johnson MRD: Engaging Communities and Users: Health and Social Care Research with Ethnic Minority Communities. In Health and Social Research in Multi-ethnic Societies Edited by: Nazroo JY. London: Routledge; 2006:48-64. 24. Szczepura A, Johnson MRD, Gumber A, Jones K, Clay D, Shaw A: An overview of the research evidence on ethnicity and communication in healthcare. Report to the Department of Health Coventry: Warwick Medical School (CEEHD) (ISBN 0 9535430 4 8) 2005 [http:// www2.warwick.ac.uk/fac/med/research/csri/ethnicityhealth/research/ communicationsreview.pdf]. 25. Miller T, Boulton M: Changing constructions of informed consent: qualitative research and complex social worlds. Social Science and Medicine 2007, 65(11):2199-2211. 26. Communication and Survey Policy Studies Institute: Asian language and communications survey. CSPSI London; 1994. 27. Hussain-Gambles M, Atkin K, Leese B: South Asian participation in clinical trials: the views of lay people and professionals. Health Policy 2006, 77:149-165. 28. Staniszewska S, Ahmed L, Jenkinson C: The conceptual validity and appropriateness of using health-related quality of life measures with minority ethnic groups. Ethnicity & Health 1999, 4:51-63. 29. Greenhalgh T, Collard A, Begum N: Sharing stories: complex intervention for diabetes education is minority ethnic groups who do not speak English. BMJ 2005, 330:628-631. 30. Lloyd CE, Sturt J, Johnson MRD, Mughal S, Collins GS, Barnett AH: Development of alternative modes of data collection in South Asians with Type 2 diabetes. Diabetic Med 2008, 25(4):455-62. 31. Kai J, Hedges C: Minority ethnic community participation in needs assessment and service development in primary care: perceptions of Pakistani and Bangladeshi people about psychological distress. Health Exp 1999, 2(1):7-20.
URI:	http://wrap.warwick.ac.uk/id/eprint/230

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