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

Article English OPEN
Lloyd, Cathy E. ; Johnson, Mark R. D. ; Mughal, Shanaz ; Sturt, Jackie ; Collins, Gary S. ; Roy, Tapash ; Bibi, Rukhsana ; Barnett, A. H. (2008)

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 r
  • References (31)
    31 references, page 1 of 4

    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.

  • Metrics
    No metrics available
Share - Bookmark