Hard lives, God's help, and struggling through: caregiving in Arkansas Delta

The purpose of this ethnographic study was to describe the experience of African American adults providing in-home care for a family member with chronic confusion living in the Arkansas Delta. We conducted this study over fourteen months in two rural Delta counties using participant observation and in-depth interviews. The majority of caregivers were adult daughters. Nearly half attributed chronic confusion to a difficult life and emotional stress or "worry;" a third believed it to be a natural component of "old age." Caregivers tended to view their work as an expression of love and devotion that was accompanied by emotional stress and personal sacrifice. While just under half of the caregivers had no other family members willing or available to assist with the physical care of the elder, the majority were able to turn to family members for emotional support. Further they identified strong religious beliefs as the primary force that sustained them in the caregiving role. The centrality of spirituality, faith/religion was noted in nearly all aspects of life. Faith in God was seen as continuing to be an important aspect of the care recipients' lives as well. Recipients' spiritual needs were addressed by accompanying the care recipient to church services and reading Bible passages to them on a regular basis. Selective community services (i.e., adult day care, home health services) were used that supported efforts at maintaining the family caregiver role. Findings are discussed within the context of historical and sociopolitical factors of the geographic region.