We Don't Talk about It: Cancer Pain and American Indian Survivors.

Pain is a common symptom among cancer survivors, yet is rarely talked about by American Indians. Understanding the reasons for reduced communication by American Indian cancer survivors is important for healthcare providers, family members, and others providing treatment and support for cancer symptoms. Thirteen focus groups with Southwest American Indian adult cancer survivors were audiotaped and transcribed as part of a randomized intervention to remove barriers to cancer symptom management. Constant comparative methods were employed in the data analysis, topic categories were grouped for comparison, and final assessment followed Grounded Theory methods. Findings were categorized into two major groupings: communication with family members and communication with health care providers. Within these two groupings, three themes emerged to describe cancer pain experiences and communication barriers: (1) We don't talk about it, (2) Respect for healthcare providers; and (3) Culturally prohibitive topics on death and pain experiences. Not talking about their cancer diagnosis and cancer-related pain leaves many American Indian cancer survivors without much-needed social support, contributing to reduced treatment compliance and access to healthcare. Findings have implications for educational interventions and quality of life improvement for American Indian and other underrepresented communities.

Culture-broker and medical decoder: contributions of caregivers in American Indian cancer trajectories.

BACKGROUND: Caregivers play a special role in the management and control of cancer-related pain. For American Indians with cancer, caregivers can contribute to patient education, medication compliance, and can facilitate communication between the patient and the provider and the patient and the family. OBJECTIVE: To identify the role(s) of caregivers of American Indian cancer survivors. METHODS: As a part of a large randomized intervention designed to improve barriers to cancer symptom management, 13 focus groups were held among American Indian cancer survivors and their caregivers at Southwest reservations and urban sites. Focus groups, audiotaped and transcribed, used constant comparative methods in the analysis of caregiver dialogues. RESULTS: Caregivers are patient educators and provider culture-brokers and their communication strategies use a combination of cultural and conventional strategies in their care of American Indian cancer patients. Cultural communication styles include "talk stories" (storytelling), group (talking circles), and dialogue to manage cancer pain, educate the patient and community, and to protect the patient from stigma, reduce barriers to care, and provide support to patients and families. Active discussion with providers "re-packaged" the patient's reporting/responses to specific clinical measures (pain measure scores) and identified the need for pain medication and compliance-related issues. LIMITATIONS: Findings are not generalizable to the American Indian population outside of the sites and focus groups from which data were collected. CONCLUSIONS: 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.

The cultural constructs of cancer-related fatigue among American Indian cancer survivors.

PURPOSE: Cancer-related fatigue (CRF) is a common symptom experienced by cancer survivors. Persistent fatigue can last years after cancer treatment. CRF's origin is unknown, and there are no validated treatments. Cultural constructs (definitions, meaning, and explanations) may vary the presentation and treatment choices related to fatigue. Identifying and categorizing CRF terms and experiences among racial, ethnic, and non-English speaking groups may provide a fuller understanding of CRF to guide tailoring of interventions. We report on the cultural constructs of CRF as reported by American Indian cancer survivors. METHODS: A study of Southwest American Indians collected qualitative data on cancer survivors' experiences of fatigue. Focus groups (n = 132) at urban clinics and rural reservation sites in the Southwest collected qualitative data on cancer survivor experiences with fatigue. The sessions were audiotaped and transcribed verbatim. During analysis, common themes were coded and formed into categories following Grounded Theory analytical procedures. Relationships between categories were examined. RESULTS: CRF was described by survivors as an entity that comes into the brain, "drains life" from the body, and creates long-lasting suffering, pain, and stigma. We review the cultural constructs of fatigue and CRF's relationship to "being out of balance." CONCLUSIONS: 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.

Shared and unshared barriers to cancer symptom management among urban and rural American Indians.

PURPOSE: Before the end of the 20th century, American Indians (AIs) primarily resided in nonmetropolitan 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 subgroups: (1) structural, (2) physical, (3) supportive, or (4) 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.

HPV awareness among American Indian young adults: implications for health education.

A lack of information about American Indians' awareness and knowledge regarding the human papillomavirus (HPV) exists. This study conducted focus groups among American Indian college students in the Southwest to assess HPV awareness. Fifty-three students participated in the study. Grounded Theory analysis identified common themes. Females reported greater awareness, knowledge and perceived severity of HPV. Frequent misunderstandings about HPV were observed. Males, adolescents and young adults were recommended as intervention targets, with schools and healthcare visits as preferred avenues for education. Recommendations for developing and implementing culturally-competent HPV educational programs for American Indian adolescents and young adults are provided.

"Weaving balance into life": Development and cultural adaptation of a cancer symptom management toolkit for Southwest American Indians.

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 U.S.A. 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.