Contributions of American Indian Cancer Caregivers in Cancer Pain Management

Caregivers play a special role in the management and control of cancer-related pain. For American Indians (AI) with cancer, caregivers can contribute to patient education, medication compliance, and can facilitate communication between the patient-provider and patient-family. This paper reports on caregiver contribution to cancer pain management among AIs and highlights effective strategies. As a part of a large randomized intervention designed to improve barriers to cancer symptom management, 13 focus groups were held among AI cancer survivors and their caregivers at Southwest reservations and urban sites. Focus groups, audio taped and transcribed, employed constant comparative methods in the analysis of caregiver dialogues. Caregivers use a combination of cultural and conventional strategies in their care of AI cancer patients. Cultural communication styles include “talk stories” (storytelling), group (talking circles), and dialogue (pain talk) within cultural groups on topics of pain management/control. “Pain talk” was used to manage cancer pain, to educate the patient and community, and to protect the patient from stigma, reduce barriers to care, and to provide support to patients and families. Active discussion with providers “re-packaging” the patient’s reporting/responses to specific clinical measures (pain measure scores), identifying need for pain medication and compliance issues was reported. Caregivers acted as “cultural brokers” to enlighten providers to cultural nuances associated with patient care. However, caregivers voiced that cultural restriction for not discussing illness openly was a sanction and an important barrier.