American Indians, comprised of nearly 500 tribes, have been characterized in terms of common values (self-sufficiency, group identity, and strong spirituality) and traditions (traditional healers, practices that promote harmony, and celebrations). Lesser known are the considerable differences across tribal groups, reflecting true cultural differences and the influence of their surrounding communities, economic and educational resources, health care, and other sociopolitical factors. Mental retardation is significantly elevated in American Indians, with school age prevalence estimated to be 11 percent or more. American Indian families have a remarkable heritage of resilience, but there is little information about family supports. This proposal focuses on families affected by mental retardation in 2 distinctive communities: the Sioux Indians on the Pine Ridge Reservation (South Dakota) and the Alabama Indian Affairs Commission, representing 7 tribes, including the recently federally recognized Poarch Band of the Creek Tribe. The proposed study builds upon preliminary research and collaborations with these two Native American organizations.
The specific aims are: (1) to document, from an ethnographic perspective, traditional values, beliefs, and cultural responses to mental retardation in 2 diverse American Indian communities; (2) to observe how families use informal and formal support systems, particularly to foster the well-being of their child with mental retardation. Both the societal sustaining system and the nurturing system will be studied in terms of culture- specific and culture-preferred means of maintaining the family's strengths; (3) to gather data about barriers and facilitators related to effective family functioning; (4) to compile family case histories, through collaboration with the families and community leaders, to facilitate future research and improve service delivery and community support for families; and (5) to use the data gathered in Specific Aims 1- 4 to help refine a general eco-cultural conceptual model of family adjustment. This research will be conducted in close collaboration with the Oglala Sioux Tribe and the Alabama Indian Affairs Commission. A multi-method approach will be used, relying on ethnographic and participant observation techniques, valued community informants, semi-structured interviews and family assessment tools (already pilot-tested), and school and clinic records. A series of 5 interrelated studies will include > 200 parents, extended family members, children, teachers, health care workers, neighbors, and community leaders as informants. A population-based sample of 75 Sioux families and 75 Alabama Indian families with children, 5-12 years old, who are mentally retarded, will participate in the longitudinal study of family adaptation. This research will provide the first extensive data base about American Indian families, mental retardation, and the role of culture and community.
