Challenges faced by informal caregivers of hospice patients in Uganda

Background: Serious illness can cause economic devastation for families. Locally run patient day care programs, or programs for training caregivers for future caregiving employment, could provide a measure of economic resilience. We sought to gather pilot data on the circumstances of informal caregivers and the desirability of such programs. Methods: In a convenience sample of patients' informal caregivers (ICs) visiting Hospice Africa Uganda in January 2006, face-to-face, survey interviews in local languages were conducted by hospice volunteers. Results: Sixty-two surveys were completed. Eighty-seven percent of ICs were family members. Frequent needs reported by ICs were financial assistance (89%), free medications (77%), opportunities for income (52%), and caregiver training (44%). Caring for a terminally ill family member pressured ICs to stop attending school (51%), marry (32%), take embarrassing jobs (47%), or take jobs with health risks (42%). If a local day care center existed, 94% of respondents stated they would use it; 80% reported they would consider hiring a caregiver. Barriers to hiring a caregiver included costs (98%), patient preference (54%), and discomfort with a nonrelative caregiver ( 42%). Importantly, 96% reported interest in becoming a trained and certified caregiver. A minority of respondents felt that paid caregiving would go against their cultural traditions. Conclusion: Most ICs in this survey faced financial and personal hardships. A large majority reported that they would use day care or hired home care for their patients if it existed, and also reported interest in becoming certified, paid caregivers. These data suggest that an economic resilience option for families based on IC training in palliative care might work at Hospice Africa Uganda.