Employment Status and Work-Related Difficulties among Family Members of Terminally Ill Patients Compared with the General Population

Background: Although caregiving to patients with terminal illness is known to be a stressful burdento family members, little attention has been focused on work-related problems. We aimed to investigateemployment status and work-related difficulties of family caregivers of terminal cancer patients, comparingwith the general population.
Methods: Using structured questionnaires, we assessed family caregivers of481 cancer patients determined by physicians to be terminally ill, from 11 university hospitals and theNational Cancer Center in Korea.
Results: 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 amongthe family caregivers was higher (OR=2.39; 95%CI= 1.73-3.29). A major reason for not working was toprovide assistance to the patients (71.6%). 40.6% of those who continued working and 32.3% of thosewho 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 notworking at a more significant rate.
Conclusion: Family caregivers of terminal cancer patients suffer job lossand severe work-related difficulties, probably due to caregiving itself and to fatigue. We need to developsupportive programs to overcome the burden of caregivers of the terminally ill.