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

By Cathy E. Lloyd, Mark R. D. Johnson, Shanaz Mughal, Jackie Sturt, Gary S. Collins, Tapash Roy, Rukhsana Bibi and A. H. Barnett


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

Topics: R1
Publisher: Biomed central
Year: 2008
OAI identifier: oai:wrap.warwick.ac.uk:230

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  1. (2003). A: A problem of communication? Diabetes care among Bangladeshi people in Bradford. doi
  2. (2005). A: An overview of the research evidence on ethnicity and communication in healthcare. Report to the Department of Health Coventry: Warwick Medical School (CEEHD)
  3. (2008). AH: Development of alternative modes of data collection in South Asians with Type 2 diabetes. Diabetic Med doi
  4. (2004). AH: Evaluation of enhanced diabetes care to patients of South Asian Ethnicity: The United Kingdom Asian Diabetes Study (UKADS). Diabetic Med doi
  5. (2006). AH: Using self-complete questionnaires in a South Asian population with diabetes: problems and solutions.
  6. (1998). AM: Health beliefs and folk models of diabetes in British Bangladeshis: a qualitative study. BMJ doi
  7. (2004). Assessing knowledge, attitudes and understanding of Type 2 diabetes amongst ethnic groups in Glasgow, Scotland. Pract Diab Int doi
  8. (2001). Balarajan R: Longitudinal study of socio-economic differences in mortality among South Asian and West Indian migrants. Ethn Health doi
  9. (2004). Beyond informed consent. Bulletin of the World Health Organisation
  10. (2007). Changing constructions of informed consent: qualitative research and complex social worlds. Social Science and Medicine doi
  11. (2003). CM: Locating research informants in a multi-ethnic community: ethnic identities, social networks and recruitment methods. Ethnicity & Health doi
  12. (2006). Cross-cultural perspectives on research participation and informed consent. Soc Sci Med doi
  13. (2006). Diabetes service provision: a qualitative study of the experiences and views of Pakistani and Indian patients with Type 2 diabetes. Diabetic Med doi
  14. Engaging Communities and Users: Health and Social Care Research with Ethnic Minority Communities.
  15. (2006). Habiba M: Patients' perceptions of written consent: questionnaire study. BMJ doi
  16. (2001). Health Survey for England: The health of minority ethnic groups. London, Department of Health;
  17. (2005). How to handle informed consent in longitudinal studies when participants have a limited understanding of the study. doi
  18. (2007). Informed consent in a changing environment. Social Science and Medicine doi
  19. (2003). 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 doi
  20. (2005). Litva A: Perceptions of community participation and health gain in a community project for the South Asian population: A qualitative study. doi
  21. (1999). Minority ethnic community participation in needs assessment and service development in primary care: perceptions of Pakistani and Bangladeshi people about psychological distress. Health Exp doi
  22. 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/].
  23. (2001). Psychosocial risk factors for coronary heart disease in White, South Asian and Afro-Caribbean civil servants: the Whitehall II study. Ethn Dis
  24. (2007). Researching the views of diabetes service users from South Asian backgrounds; a reflection on some of the issues.
  25. (2008). Safety Agency: National research ethics service [http://www.nres.npsa.nhs.uk]. (accessed 10th
  26. (2005). Sharing stories: complex intervention for diabetes education is minority ethnic groups who do not speak English. BMJ doi
  27. (2006). South Asian participation in clinical trials: the views of lay people and professionals. Health Policy doi
  28. (1994). Survey Policy Studies Institute: Asian language and communications survey. CSPSI London;
  29. (1999). The conceptual validity and appropriateness of using health-related quality of life measures with minority ethnic groups. Ethnicity & Health doi
  30. (2007). The perspectives of researchers on obtaining informed consent in developing countries. Dev World Bioeth doi

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