Involvement of ethnic minorities in cancer research: experiences, barriers and recommendations


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Claire Foster

University of Southampton, UK

Abstract

Involvement of ethnic minorities in cancer research: experiences, barriers and recommendations

Patients from ethnic minority groups are under-represented in cancer research. This is significant as research is integral to the development of cancer services and therapies. Failing to involve patients from these backgrounds can result in services and therapies that are inappropriate or unable to meet the needs of ethnic minority groups. This paper presents findings from a multi-site study involving cancer patients from diverse ethnic backgrounds that 1) identifies research attitudes, experiences and awareness of research 2) identifies barriers to participation in research 3) identifies the experiences and strategies of research nurses 4) generates recommendations for recruitment into cancer research studies. The study adopted an exploratory, qualitative approach, employing semi-structured and narrative interviews. Cancer patients and research nurses were recruited from two Acute NHS Trusts. Additional cancer patients were recruited through community organisations, such as support groups. A purposive sample was used to ensure representation of different ethnicities (South Asian, Chinese, Black African / Black Caribbean), languages (Hindi, Gujarati, Urdu, Punjabi, Cantonese, Mandarin, English), research experience (novice; involved) and gender. Data were analysed using holistic, content and thematic analysis. This paper focuses on two key areas. First, the research experiences, attitudes and awareness of cancer patients and barriers to their involvement in research will be discussed. Second, the recruitment experiences and strategies adopted by research nurses will be presented. Recommendations generated from the study will help to enable researchers, research nurses and trial centres to develop culturally relevant research design and strategies for recruitment. This will help to maximise opportunities for participation in cancer research.