The Hopi Tribe Caregiver Experience

Abstract

Background: A family caregiver provides unpaid assistance to a family member/friend with a chronic disease, illness or disability. The 2000 Behavioral Risk Factor Surveillance Survey estimates that 16 % of adult American Indians (AIs) are caregivers but little is known about AI caregivers. Methods: The Hopi Survey of Cancer and Chronic Disease (HSCCD) collected knowledge and personal experience from Hopi men and women. Self-identified caregivers answered a subset of questions specific to caregiving. To further document characteristics of caregivers, the Hopi Adult Caregiver Survey (HACS) was administered to self-identified Hopi caregivers to understand the experience caregiving, amount/type of care provided, difficulties, health, desired support services, resilience and stress. Response data was analyzed using descriptive statistics, variables association with stress or resilience was assessed through linear regression. Results: From the HSCCD, approximately 20% of the 500 Hopi participants self-identified as caregivers; 56% were female. Stress was the most common personal concern. In the HACS, 44 female Hopi caregivers were interviewed. All cared for family members and provided transportation, housework, and medical related care. Over 77% would not consider placing their relative in an assisted living facility. Stress was again the most frequently identified personal concern but high resilience scores were associated with low stress scores. Discussion: Compared to national data, Hopi female caregivers are older, provide more care hours/week, more duties, and for more years of service. Given that many tribes do not have, and in some cases resist, institutionalized caregiving, this information is critical for tribes to develop strategies to support and sustain this preferred system of care for the elderly, chronically ill and disabled. Recommendation: Increasing caregivers’ personal resilience strategies may be a way of mitigating negative effects associated with stress, the primary concern of caregivers.