Development and dissemination of a cancer symptom management toolkit for American Indian patients and caregivers

There is a dearth of culturally appropriate self-management education tailored for American Indians (AIs). The cultural backgrounds of AI patients and caregivers can influence the uptake of information, shape attitudes towards cancer and symptom management, and determine the likelihood of understanding the information received. For this project 13 focus groups (n=126) were employed to identify desired content, format and delivery of a cancer symptom management toolkit (educational materials) for Southwest American Indians. Sessions were audiotaped and transcriptions were coded using Grounded Theory. Toolkit development involved creation of new materials, adaptation of pre-existing materials, and incorporation of Southwest cultural content and imagery suggested by participants, including myths, tips and expectations about cancer and symptom management. Participants indicated materials should include “real” American Indian cancer survivor experiences, and reported on preferred size, style and format of materials. In addition, local community resources and suggestions for communication strategies were requested. The complete “Weaving Balance into Life” toolkit is comprised of a self-help guide, resource directory, video, and supplementary materials. Toolkits were distributed via 8 weekly Talking Circles, a historical and culturally appropriate vehicle for transmitting information, with participants receiving a new component to “build” their toolkit each week. This presentation will include final outcomes of toolkit use and talking circles delivery during the intervention phase. It is necessary to work with American Indian populations ensure cancer education materials are acceptable and to disseminate materials in a way that will effectively reach these populations.