Caregiver Expectations: Predictors of a Worse Than Expected Caregiving Experience at the End of Life

Context: The gap between informal caregivers' expectations of caregiving at the end of life and their actual caregiving experience has important affective and behavioral consequences.

Objectives: This study analyzes for the first time the characteristics of those caregivers who report a worse or much worse than expected caregiving experience, providing a potential for future targeted intervention into the caregiving experience.

Methods: The South Australian Health Omnibus is an annual, random, face-to-face, and cross-sectional survey. From 2000 to 2007, respondents were asked a range of questions about end-of-life care, including in several years a question about how the caregiving experience compared with caregivers' expectation(s). Family members and friends who reported a worse or much worse than expected caregiving experience were the focus of this analysis. Univariable and multivariable logistic regression models were created to better define this group.

Results: Of the 1628 active caregivers for people at the end of life, almost half (48.3%) reported a worse or much worse than expected caregiving experience. A worse or much worse than expected caregiving experience was significantly associated with gender and with level of care provided. Women who provided daily hands-on care were significantly more likely to have a worse than expected experience compared with women who provided intermittent care (odds ratio [OR] 0.65; 95% CI 0.48-0.88; P = 0.005) or rare care (OR 0.39; 95% CI 0.27-0.56; P < 0.001). Of all those providing rare care, women were significantly less likely than men to report a worse than expected caregiving experience (OR 0.61; 95% CI 0.41-0.93; P = 0.020).

Conclusion: Caregiver expectations represent a novel and important focus for investigation into the caregiver experience. Explicitly eliciting expectations may in future lead to ways of better supporting caregivers.