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Step 2 - Communicating with research subjects

Communicating with research subjects

Cultural competence in:

Communicating with research subjects

Language, interpreters

“When necessary, investigators must use the services of interpreters who have the language and knowledge competencies necessary to ensure that consent is informed, rational, and voluntary. Having children serve as interpreters to obtain parent permission is not permissible because it may result in misinformation or may undermine respectful parent–child relationships. In small and cohesive ethnic communities, individuals qualified to serve as interpreters may have other role relationships with prospective participants and their families. Through careful and respectful questioning, investigators must determine whether these multiple relationships could be exploitative or otherwise harmful to participants, must select alternative interpreters when feasible, and must take steps to ensure that consent is voluntary and that participant confidentiality is protected” (Fisher, Hoagwood, Boyce, Duster, Frank, Grisso, Levine, Macklin, Spencer, Takanishi, Trimble, & Zayas 2002;Fisher & Wallace 2000).

Cultural nuances of privacy and confidentiality – for subject, family, community

A key principle of research with diverse communities is that there are numerous dimensions of diversity, not only ethnicity, language and country of birth, but also other sources of variation such as refugeehood or marginality in the community. “When working with rural or small and unique ethnic populations, investigators need to be aware of the added difficulties of protecting the confidentiality of individuals and their communities. During the recruitment, implementation, and dissemination stages of research, investigators should take extra precautions to protect the privacy and identity of research participants, their families, and their communities” (Fisher, Hoagwood, Boyce, Duster, Frank, Grisso, Levine, Macklin, Spencer, Takanishi, Trimble, & Zayas 2002;Fisher & Wallace 2000).

Cultural issues in the consequences of health researchers/professionals asking for consent

Finally, Ashcroft et al. highlight instances where the very act of asking for consent may, for cultural reasons, place potential participants in a shaming, embarrassing or otherwise difficult situation. Such cases are especially complicated where there are differences in understanding and expectations around the role of health professional and patient, and a request for consent may be interpreted as disorienting or else difficult to refuse.

“Investigators can enhance informed consent protections through individual and community awareness mechanisms aimed at educating prospective participants, their guardians, and their communities about the research process and participants’ rights. Such mechanisms include the use of recruitment handbooks and the dissemination of information through community-based speakers, bureaus, mass media, parent–school associations, health care centers, and religious organizations. Informed decisions to participate are also facilitated by providing prospective participants and their guardians with time to consider the information and to discuss it with family members or community elders” (Fisher, Hoagwood, Boyce, Duster, Frank, Grisso, Levine, Macklin, Spencer, Takanishi, Trimble, & Zayas 2002;Fisher & Wallace 2000).

“Informed consent procedures must be conducted in a language understood and preferred by prospective participants and their guardian or guardians; researchers should recognize that children and adolescents may have different language competencies and preferences than adult members of their families. Investigators should also ensure that consent forms translated from English or other languages are adequate. These forms should be translated using procedures that ensure equivalency” (Fisher, Hoagwood, Boyce, Duster, Frank, Grisso, Levine, Macklin, Spencer, Takanishi, Trimble, & Zayas 2002;Fisher & Wallace 2000).