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

Abstract

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.

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