Sociocultural perspective on organ and tissue donation among reservation-dwelling American Indian adults

Objective. To discover the sociocultural patterns that influence decisions about organ and tissue donation among American Indian (AI) adults. Design. This qualitative ethnographic study used a social-ecological framework. A snowball sampling technique was used to recruit 21 Oglala Lakota Sioux participants (age 19 years) living on the Pine Ridge Indian Reservation in South Dakota, USA. Face-to-face interviews were conducted using open-ended questions derived from the social-ecological perspective of Stokols (1992). Interviews were audiotaped and transcribed. Data were categorized into construct codes to identify concepts and to discover emerging themes. Results. Personal and environmental themes regarding organ and tissue donation emerged. There were two personal themes: uncertain knowledge and the diabetes crisis. Participants knew very little about organ and tissue donation but there was a basic understanding of donor/recipient compatibility. The prevalence of diabetes in the community is contributing to a dire need for kidney donors. The diabetes crisis was acknowledged by every participant. There were three environmental themes: cultural transitions, healthcare system competence and outreach efforts. Traditional cultural beliefs such as entering the spirit world with an intact body were acknowledged. However, conversations reflected re-examination of traditional beliefs because of the need for kidney donors. The healthcare environmental context of organ and tissue donation emerged as a theme. Participants were not confident that the local health system was prepared to either address traditional beliefs about organ and tissue donation or implement a donation protocol. The final theme was the environmental context of outreach efforts. Participants desired relevant outreach targeted to the community and disseminated through local communication networks including the family, the media and tribal leaders. Conclusions. Sociocultural factors relevant to the personal and environmental context of the social ecological model influenced beliefs about organ and tissue donation among the Lakota people in this study. Outreach programs aimed at increasing donation need to respect traditional beliefs yet present the choice about organ and tissue donation within the cultural context. Telling the stories of community members affected by both diabetes and donation is important. Promoting family conversation is critical. Healthcare systems must approach potential donor families with an understanding of traditional beliefs and respect for the process of family communication about organ and tissue donation.