title: Cross-cultural perspectives on research participation and informed consent.
abstract: This study examined Portuguese Canadian and Caribbean Canadian immigrants' perceptions of health research and informed consent procedures. Six focus groups (three in each cultural group) involving 42 participants and two individual interviews were conducted. The focus groups began with a general question about health research. This was followed by three short role-plays between the moderator and the assistant. The role-plays involved a fictional health research study in which a patient is approached for recruitment, is read a consent form, and is asked to sign. The role-plays stopped at key moments at which time focus group participants were asked questions about their understanding and their perceptions. Focus group transcripts were coded in QSR NUDIST software using open coding and then compared across cultural groups. Six overriding themes emerged: two were common in both the Portuguese and Caribbean transcripts, one emphasized the importance of trust and mistrust, and the other highlighted the need and desire for more information about health research. However, these themes were expressed somewhat differently in the two groups. In addition, there were four overriding themes that were specific to only one cultural group. In the Portuguese groups, there was an overwhelming positive regard for the research process and an emphasis on verbal as opposed to written information. The Caribbean participants qualified their participation in research studies and repeatedly raised images of invasive research.
authors.affiliation: Women's Health Program, University Health Network, Toronto, Ont., Canada. Paula.barata@uhn.on.ca
authors.forename: Paula C
authors.initials: PC
authors.lastname: Barata
authors.forename: Enza
authors.initials: E
authors.lastname: Gucciardi
authors.forename: Farah
authors.initials: F
authors.lastname: Ahmad
authors.forename: Donna E
authors.initials: DE
authors.lastname: Stewart
mesh_terms: D000328:Adult; D000368:Aged; D001294:Attitude to Health; D035843:Biomedical Research; D017691:Caribbean Region / Q000208:ethnology; D003431:Cross-Cultural Comparison; D004641:Emigration and Immigration; D005260:Female; D017144:Focus Groups; D006801:Humans; D007258:Informed Consent / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D009864:Ontario; D018579:Patient Selection; D011174:Portugal / Q000208:ethnology; D035842:Research Subjects / Q000523:psychology*; D012381:Role Playing; D011795:Surveys and Questionnaires; D035502:Trust