Taboo Topics, Cultural Voices, Native Lessons

In the course of research among American Indian/Alaska Native populations, taboo topics may be elicited. How communication about these taboo topics is handled by researchers may have significant consequences for the on-going sharing of information by research participants. Identifying taboo topics, learning how to respond to them, and learning from elder respondents who employ such techniques as Native language responses, counseling (we don't talk about it, or place and time to talk about it), and storytelling methods are important processes in research among Indigenous populations. As background, this presentation describes the results of the first phase of a large randomized clinical trial designed to reduce or overcome barriers to cancer-related symptom management among American Indians residing in the Southwest. Focus groups (N=126) among cancer patients, survivors, and family members were conducted in 2008-2009. The focus group discussions explored culturally-embedded communication styles, barriers, and preferences between cancer patients/survivors, researchers and healthcare providers. Grounded theory methods were used to identify taboo topics and to provide examples of recommended responses. We report on the categories of taboo topics that were identified in the focus groups and about culturally-competent methods for responding to these cancer-related questions and concerns. Illustrations of elder recommendation and elder modeling of responses are provided. An explanatory model was formed to analyze communication regarding taboo topics, such as sexuality, disease diagnosis, death, and pain. Identifying and understanding taboo topics and culturally-appropriate methods for cross-cultural health communication supported by Native elders may facilitate proper symptom management for cancer and other diseases.