Palliative caregivers who would not take on the caring role again

Context: Health and social services rely heavily on family and friends for caregiving at the end of life. Objectives: This study sought to determine the prevalence and factors associated with an unwillingness to take on the caregiving role again by interviewing former caregivers of palliative care patients. Methods: The setting for this study was South Australia, with a population of 1.6 million people (7% of the Australian population) and used the South Australian Health Omnibus, an annual, face-to-face, cross-sectional, whole-of-population, multistage, systematic area sampling survey, which seeks a minimum of 3000 respondents each year statewide. One interview was conducted per household with the person over the age of 15 who most recently had a birthday. Using two years of data (n = 8377; 65.4% participation rate), comparisons between those who definitely would care again and those who would not was undertaken. Results: One in 10 people across the community provided hands-on care for someone close to them dying an expected death in the five years before being interviewed. One in 13 (7.4%) former caregivers indicated that they would not provide such care again irrespective of time since the person's death and despite no reported differences identified in unmet needs between those who would and would not care again. A further one in six (16.5%) would only "probably care again." The regression model identified that increasing age lessens the willingness to care again (odds ratio [OR] 3.94; 95% confidence interval [CI] 1.56, 9.95) and so does lower levels of education (OR 0.413; 95% CI 0.18, 0.96) controlling for spousal relationship. Conclusion: These data suggest that assessment of willingness to care needs to be considered by clinical teams, especially in the elderly. Despite most active caregivers being willing to provide care again, a proportion would not.