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American Indians, community-based participatory research, end of life, patient and family, qualitative



  1. Colclough, Yoshiko Yamashita PhD, RN
  2. Brown, Gary M. MSED


An absence of hospice care may prevent individuals from receiving an optimal end-of-life experience. American Indian traditions pose challenges concerning the use of hospice care. For example, it is taboo to discuss end-of-life care and death. The study focus was identification of tribal values, contributing factors, and decision making regarding end of life. The study was conducted on an American Indian reservation through a partnership between an American Indian community and a university. Community-based participatory research was used throughout the study. Grounded Theory guided this study. Interviews were conducted by the study team among American Indian community members who experienced life-threatening illness. End-of-life experiences for these participants focused on the concept of struggle, coping by seeking knowledge, and applying connectedness to family, community, spirituality, and health care providers. The majority of the participants coped with the struggle through traditional cultural values and ceremonies to reach living. Their culturally ideal end of life was identified as being a proud Indian and living the Indian way of life to the end. Participants offered suggestions to assist American Indians in overcoming the stigma of discussing end-of-life issues.