Barata Paula C, Gucciardi Enza, Ahmad Farah, Stewart Donna E
Women's Health Program, University Health Network, Toronto, Ont., Canada.
Soc Sci Med. 2006 Jan;62(2):479-90. doi: 10.1016/j.socscimed.2005.06.012. Epub 2005 Jul 20.
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.
本研究考察了葡萄牙裔加拿大移民和加勒比裔加拿大移民对健康研究及知情同意程序的看法。研究开展了六个焦点小组（每个文化群体三个），共有42名参与者，并进行了两次个人访谈。焦点小组以一个关于健康研究的一般性问题开场。随后，主持人与助手进行了三场短剧表演。这些短剧围绕一项虚构的健康研究展开，内容包括向一名患者进行招募、为其宣读同意书并请其签字。短剧在关键时刻暂停，此时会向焦点小组参与者询问他们的理解和看法。焦点小组的文字记录在QSR NUDIST软件中采用开放式编码进行编码，然后在不同文化群体间进行比较。出现了六个首要主题：其中两个在葡萄牙裔和加勒比裔的文字记录中都很常见，一个强调信任与不信任的重要性，另一个突出了对更多健康研究信息的需求和渴望。然而，这两个主题在两个群体中的表达方式略有不同。此外，还有四个首要主题仅特定于一个文化群体。在葡萄牙裔群体中，对研究过程有着压倒性的积极看法，并强调口头而非书面信息。加勒比裔参与者对参与研究持保留态度，并反复提及侵入性研究的画面。
