N18 Facilitating involvement of patients from ethnic minority groups in research: experiences of offering patients a choice of interviewer

Research output: Contribution to conferencePosterpeer-review

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Author(s)

Department/unit(s)

Conference

ConferenceEuropean Crohn's and Colitis Organisation 15th Annual Congress
Abbreviated titleECCO-2020 Inflammatory Bowel Disease
CountryAustria
CityVienna
Conference date(s)12/02/2015/02/20

Publication details

DateIn preparation - 2020
DatePublished (current) - Jan 2020
Number of pages1
Original languageEnglish

Abstract

Background: Recruitment of Inflammatory Bowel Disease (IBD) patients from an ethnic minority background to research is known to be very low. It has been suggested that interviewer characteristics may affect the willingness of individuals to take part in research, with some researchers advocating ethnicity and gender matching. A study on UK South Asian adults’ experiences of living with Inflammatory Bowel Disease (IBD), provided an opportunity to explore these methodological issues further.

Methods: The study comprised qualitative interviews with adult patients with IBD identifying themselves as Indian/British Indian, Pakistani/British Pakistani, and Bangladeshi/British Bangladeshi. They were recruited from five clinics across England. Rather than presupposing what participants’ preferences might be, patients were offered a choice of interviewer in terms of the following characteristics: gender, shared experience (or not) of IBD, ethnicity and language (Bengali, Gujarati, Hindi, Mirpuri, Punjabi, Urdu). These interviewers were a particular type of ‘peer researcher’; distinctive in that they are a professional researchers and assumptions have not been made about the ‘peer’ characteristic which is most pertinent to study participants.

Results: Adopting this study design required strategic planning in terms of resources and research management. Recruitment to the study was good, with over 40% of those invited (n=41) returning a response form indicating an interest in taking part. Some had no preference over who interviewed them (8 women, 6 men). Where a preference was expressed, gender was the most important factor. Almost all favoured a female rather than a male interviewer (12 versus 1). The next most frequently requested option was for an interviewer with personal experience of IBD (n=11). Very few prioritised the ethnicity of the interviewer. Of those that did, two also requested to be interviewed in a South Asian language. Involvement of ‘peer interviewers’ in the development of the interview guide led to the addition of research questions that would not otherwise have been included. In some interviews, shared experience (between interviewer and interviewee) increased the richness of data elicited which, on occasion, threatened ‘even-ess’ of emphasis across the dataset.

Conclusion: The study achieved an above average recruitment rate, the sampling frame was achieved, and rich data was generated. The research team intend to adopt a similar approach in future studies where it is anticipated recruitment to the study may be challenging and the topics for discussion are sensitive.



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