Gathering information to develop palliative care programs for Alaska's Aboriginal peoples

Over an eight-year period, the authors conducted focus groups in six Alaska Aboriginal communities. They sought information about traditional ways of caring for the dying, current values and preferences surrounding death, the kind of support caregivers need, and how a palliative care program could assist families caring for loved ones in the community. Focus groups are a standard qualitative research tool for gathering information when a new program or service is planned. However, for Alaska's Aboriginal people living in remote settings, the standard focus group design is not useful. That design was modified to reflect cultural norms and communication methods while adhering to standards of qualitative research. Communities selected represented different groups of Alaska's Indigenous people; 84 Aboriginal elders participated. Culturally modified focus groups yielded rich and useful information about historical and traditional practices surrounding death. Participants also vocalized expectations and concerns regarding their own eventual deaths. The process of conducting six different focus groups throughout Alaska yielded valuable information about community engagement in Aboriginal communities.