Abstract
Although caregiving to patients with terminal illness is known to be a stressful burden to family members, little attention has been focused on work-related problems. We aimed to investigate employment status and work-related difficulties of family caregivers of terminal cancer patients, comparing with the general population. Using structured questionnaires, we assessed family caregivers of 481 cancer patients determined by physicians to be terminally ill, from 11 university hospitals and the National Cancer Center in Korea. Among 381 family caregivers of terminal cancer patients (response rate, 87.6%), 169 (43.9%) were not working before cancer diagnosis, but currently 233 (63.7%) were not working. Compared with the general population (36.5%), the percentage of not working among the family caregivers was higher (OR = 2.39; 95% CI= 1.73-3.29). A major reason for not working was to provide assistance to the patients (71.6%). 40.6% of those who continued working and 32.3% of those who not working family members reported extreme fatigue. Caregivers of old age, those who were female, those with a lower household income, and those caring for patients with a low performance status were not working at a more significant rate. Family caregivers of terminal cancer patients suffer job loss and severe work-related difficulties, probably due to caregiving itself and to fatigue. We need to develop supportive programs to overcome the burden of caregivers of the terminally ill.
Highlights
Caregiving to patients with terminal illness is known to be a stressful burden to family members (Chochinov et al, 2011; Fairfield et al, 2012; Kimman et al, 2012; Tordoff et al, 2012), little attention has been focused on the impact of caregiving on employment status and work-related difficulties among family members of patients with terminal illness
We found that not working was higher among caregivers of terminal cancer patients (63.7%) than among the general populations (36.5%)
Our results were similar to the findings of previous studies of caregivers of cancer patients; that is, previous studies showed that 20% of caregivers provided fulltime or constant care (Bukki et al, 2011), 5-20% of caregivers had quit their jobs or declined advancement as a result of caregiving (Dybicz et al, 2011; Fairfield et al, 2012; Pantilat et al, 2012)
Summary
Caregiving to patients with terminal illness is known to be a stressful burden to family members (Chochinov et al, 2011; Fairfield et al, 2012; Kimman et al, 2012; Tordoff et al, 2012), little attention has been focused on the impact of caregiving on employment status and work-related difficulties among family members of patients with terminal illness. We aimed to evaluate employment status and work-related difficulties of family caregivers with terminal cancer patients, comparing with the general population. Caregiving to patients with terminal illness is known to be a stressful burden to family members, little attention has been focused on work-related problems. We aimed to investigate employment status and work-related difficulties of family caregivers of terminal cancer patients, comparing with the general population. We need to develop supportive programs to overcome the burden of caregivers of the terminally ill
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