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

Abstract

Background: 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. Methods: 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. 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 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. Conclusion: 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.

Trajectories of caregiver burden and related factors in family caregivers of patients with lung cancer

“…Among this burden domain, spending lots of time in care‐giving and not being employed are identified. Similar as the previous study that 19.6% of caregivers leave their jobs, 16% of the FCs quit their jobs before patients receiving first treatment in this study. Financial strain might become another burden following disruption of the FCs' schedule and job loss.…”

Changes in Economic Status of Households Associated with Catastrophic Health Expenditures for Cancer in South Korea

“…In addition, family members may have to reduce paid work to accommodate treatment schedules, emotional needs, and other demands, such as providing support and care for the family member receiving treatment (Longo et al, 2006). Family caregivers of terminal cancer patients suffer job loss and severe work-related difficulties, probably due to caregiving itself and to fatigue (Kim et al, 2013). Taken together, high medical expenses as well as change in job status for the cancer patient as well as family members may result in catastrophic health expenditures for the household.…”

The Economic Burden of Cancer in Korea in 2009

“…The Economic Burden of Cancer in Korea in 2009 So Young Kim 1,2 Jong-Hyock Park 2,3 *, Kyoung Hee Kang 2 , Inuk Hwang 2 , Hyung Kook Yang 2 , Young-Joo Won 2 , Hong-Gwan Seo 2 , Dukhyoung Lee 2 , Seok-Jun Yoon 4 level of both objective (e.g., patient hospitalizations, providing transportation) and subjective burden (e.g., emotional trauma, worry, reduced caregiver wellbeing) that family caregivers experience (Shin et al, 2012;Turkoglu and Kilic, 2012;Kim et al, 2013). For example, cancer forces some patients to give up their work either temporarily or permanently, which lead to the health-related impact of cancer on society (You et al, 2013;Hanly and Sharp, 2014).…”