“Weaving Balance into Life”: Development and cultural adaptation of a cancer symptom management toolkit for Southwest American Indians

Abstract

Introduction Self-management of cancer symptoms has the potential to decrease the suffering of cancer survivors while improving their health and quality of life. For many racial/ethnic groups, culturally appropriate self-management instruction is not readily available. This paper reports on the first symptom management toolkit developed for American Indian cancer survivors. Methods Part of a larger research study, a three-phase project tested a cancer symptom self-management toolkit to be responsive to the unique learning and communication needs of American Indians in the Southwest USA. American Indian cancer survivors and family members participated in 13 focus groups to identify cultural concepts of cancer and illness beliefs, communication styles, barriers, and recommendations for self-management techniques. Sessions were audiotaped and transcriptions were coded using Grounded Theory. Results Participants expressed a need for an overview of cancer, tips on management of common symptoms, resources in their communities, and suggestions for how to communicate with providers and others. The “Weaving Balance into Life” toolkit is comprised of a self-help guide, resource directory, and video. Preferred presentation style and content for the toolkit were pilot tested. Discussion/conclusions American Indian survivors favor educational materials that provide information on symptom management and are tailored to their culture and beliefs. Suggestions for adapting the toolkit materials for other American Indian populations are made. Implications for cancer survivors Many cancer survivors lack effective self-management techniques for symptoms, such as pain, fatigue, and depression. The toolkit promotes self-management strategies for survivors and provides family members/caregivers tangible ways to offer support.

Self‐management support from the perspective of patients with a chronic condition: a thematic synthesis of qualitative studies

“…Professionals were valued for their expert knowledge. Patients needed information from an expert about diagnosis, symptoms, treatment options, side‐effects and possible interaction effects and instruction on alleviating symptoms themselves . Support should be available shortly after symptoms arise or when there are problems with medication .…”

“…Support should be available shortly after symptoms arise or when there are problems with medication . In some studies, patients appreciated information about spiritual matters and complementary therapy . Professionals also helped evaluate internet information, a role attributed to relatives in another study .…”

“…Professionals also helped evaluate internet information, a role attributed to relatives in another study . Information about health‐care facilities was needed from professionals . Some studies pointed out that providing information to relatives is important as well .…”

Challenges in cancer self-management of patients with limited English proficiency

“…[323334] While the results from these programs were supportive to cancer patient self-management, the development of such program and validation of usefulness and sustainability for cancer patients who have language and cultural barriers are still limited. [3536]…”

Influence of Framing and Graphic Format on Comprehension of Risk Information among American Indian Tribal College Students

“…However, cultural preferences may still be an important component of health communication. A recent study incorporating 13 focus groups made up of American Indian cancer survivors from the Southwest U.S. found that participants preferred educational materials tailored to their belief and culture [26]. …”