American Indian Family Caregivers' Perceptions of Burden and Needed Support Services

Abstract

American Indian families are frequently the primary providers of long-term care for functionally dependent elders. In spite of the rapid growth in the numbers and needs of older American Indians, little is known about the experiences and perceived needs of their informal caregivers. This study used focus groups with family caregivers of frail elders from 5 tribes to elicit caregivers' views of their situation and needed support services. Findings revealed a strong cultural mandate to provide elder care despite the lack of access to essential long-term care services. Major sources of caregiver burden included anxiety about managing in-home medical care, problems in dealing with psychosocial aspects of care, strains on family relations, and negative effects on personal health and well-being. Desired services identified by these caregivers included caregiver training and support groups, enhanced care coordination, adult day care and respite. Cultural considerations in developing these services are discussed.