Caregiving on the Hopi Reservation: Findings from the 2012 Hopi Survey of Cancer and Chronic Disease

A family caregiver provides unpaid assistance to a family member/friend with a chronic disease, illness or disability. The caregiving process can affect a caregiver’s quality of life by reducing time for themselves, for other family members and for work. The 2000 Behavioral Risk Factor Surveillance Survey estimates that 16 % of adult American Indians (AIs) are caregivers. A 2012 survey collected knowledge and personal experience data from a random sample of Hopi men and women (248 men and 252 women). Self-identified caregivers answered questions on time spent caregiving, caregiver difficulties and services requested. Approximately 20 % of the 500 Hopi participants self-identified as caregivers (N = 98), with 56 % female. Caregivers in contrast to non-caregivers had a lower percentage of ever having a mammogram (86, 89 %), a higher percentage of ever having had a Pap smear test (89.1, 85.6 %), a prostate specific antigen test (35, 30.6 %) and ever having had a colonoscopy (51.2, 44 %). Almost 21 % of caregivers reported difficulty with stress and 49 % reported it as their greatest caregiver difficulty. More males (28.6 %) identified financial burden as the greatest difficulty than females (p = 0.01). Training on patient care was the service that caregivers would like to receive most (18.2 %). The percentage of Hopi’s providing caregiving was similar to national averages, although among men, was somewhat higher than national data (44 vs. 34 %). Stress was identified as a difficulty, similar to national studies.