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.

There is a need for culturally appropriate education concerning fatigue, techniques for reducing fatigue, and support for American Indian cancer survivors and other vulnerable populations.

Purpose Before the end of the 20th century, American Indians (AIs) primarily resided in non-metropolitan areas. Shifting demographic trends have led to a majority of AIs now living in urban areas, leading to new health care barriers for AIs. AIs experience the poorest survival from all cancers combined compared to all other racial groups. Identifying and classifying barriers to cancer care may facilitate supportive interventions and programs to improve access and treatment. Methods A 5-year cancer symptom management project targeted AIs in the Southwest. The first phase of the randomized clinical trial consisted of 13 focus groups (N=126) of cancer patients/survivors and their caregivers. Discussions explored existing and perceived barriers and facilitators to cancer symptom management and cancer treatment. Findings Significant barriers to cancer-related care were found among urban AIs, as compared to their rural counterparts. Barriers were classified within 4 sub-groups: a) structural, b) physical, c) supportive, or d) cultural. Urban AIs reported barriers that are both structural and physical (inadequate access to care and public transportation) and supportive (lack of support, resources and technology, and less access to traditional healing). Rural participants reported communication and culture barriers (language differences, illness beliefs and low levels of cancer care knowledge), as well as unique structural, physical and supportive barriers. Conclusion It is important to identify and understand culturally and geographically influenced barriers to cancer treatment and symptom management. We provide recommendations for strategies to reduce health disparities for AIs that are appropriate to their region of residence and barrier type.

There is little research on cancer symptom management among Indigenous populations. This paper reports on the predictors of cancer pain management among American Indian cancer patients/survivors and their caregivers/family. The intervention was a symptom management toolkit delivered via traditional talking circles vs. standard care (control) at eight randomized reservation and urban clinic sites in the Southwest. Participants (N=184) were American Indian adults diagnosed with cancer and/or caregiver/family members. The primary outcome measure collected via pre-test and post-test questionnaires was the ability to manage cancer pain. Significant differences at post-test were the ability to manage cancer-related pain (p=.02) and a close relationship (p=.0018) that proved significant for intervention participants and was instrumental in fostering their ability to manage pain. The study also showed improvement in the desire and ability to improve cancer pain management among intervention participants. Programs targeting American Indians should use culturally appropriate education to improve management of cancer-related symptoms.

Caregivers are "cultural brokers" who inform providers of the cultural nuances associated with American Indian patient care. However, caregivers voiced that cultural restriction for not discussing illness openly was a sanction and an important barrier.