title: Securing recruitment and obtaining informed consent in minority ethnic groups in the UK.
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.
  
  
  CONCLUSIONS
  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 rates.
authors: Faculty of Health & Social Care, The Open University, Milton Keynes, UK. c.e.Lloyd@open.ac.uk
authors: Cathy E
authors: CE
authors: Lloyd
authors: Mark R D
authors: MR
authors: Johnson
authors: Shanaz
authors: S
authors: Mughal
authors: Jackie A
authors: JA
authors: Sturt
authors: Gary S
authors: GS
authors: Collins
authors: Tapash
authors: T
authors: Roy
authors: Rukhsana
authors: R
authors: Bibi
authors: Anthony H
authors: AH
authors: Barnett
mesh_terms: D000328:Adult; D000368:Aged; D001208:Asia / Q000208:ethnology; D001296:Audiovisual Aids; D003625:Data Collection / Q000379:methods; D003924:Diabetes Mellitus, Type 2 / Q000208:ethnology* / Q000628:therapy; D005006:Ethnicity; D005260:Female; D017144:Focus Groups; D006302:Health Services Research / Q000941:ethics; D006801:Humans; D007258:Informed Consent; D008297:Male; D008875:Middle Aged; D008913:Minority Groups; D018579:Patient Selection; D011795:Surveys and Questionnaires; D006113:United Kingdom