Employment implications of informal cancer caregiving

Abstract

Purpose: Previous research describing how informal cancer caregiving impacts employment has been conducted in small samples or a single disease site. This paper provides population-based estimates of the effect of informal cancer caregiving on employment and characterizes employment changes made by caregivers.

Methods: The samples included cancer survivors with a friend or family caregiver, participating in either the Medical Expenditure Panel Survey Experiences with Cancer Survivorship Survey (ECSS) (n = 458) or the LIVESTRONG 2012 Survey for People Affected by Cancer (SPAC) (n = 4706). Descriptive statistics characterized the sample of survivors and their caregivers' employment changes. Multivariable logistic regression identified predictors of caregivers' extended employment changes, comprising time off and changes to hours, duties, or employment status.

Results: Among survivors with an informal caregiver, 25 % from the ECSS and 29 % from the SPAC reported that their caregivers made extended employment changes. Approximately 8 % of survivors had caregivers who took time off from work lasting ≥2 months. Caregivers who made extended employment changes were more likely to care for survivors: treated with chemotherapy or transplant; closer to diagnosis or end of treatment; who experienced functional limitations; and made work changes due to cancer themselves compared to caregivers who did not make extended employment changes.

Conclusions: Many informal cancer caregivers make employment changes to provide care during survivors' treatment and recovery.

Implications for cancer survivors: This study describes cancer caregiving in a prevalent sample of cancer survivors, thereby reflecting the experiences of individuals with many different cancer types and places in the cancer treatment trajectory.

Keywords: Caregivers; Cost-of-illness; Employment; Neoplasms; Quality of life.

Figure 1

Proportion of informal caregivers who made extended employment changes (ECSS and SPAC) ^{1 1} Extended employment changes were assessed with the question, “because of your cancer, its treatment, or the lasting effects of that treatment, did any of your caregivers ever take extended paid time off from work, unpaid time off, or make a change in their hours, duties or employment status?” Note: Estimates were weighted to account for the complex survey design of the ECSS and the raked weights that were applied to the SPAC.

Figure 2

Proportion of caregivers who took extended time off from work for ≥ 2 months by duration of leave (SPAC)^{1 1} Survivors reporting that their caregivers made extended employment changes for at least two months were asked whether their caregivers took paid or unpaid time off from work. Survivors who reported that their caregiver took paid or unpaid time off from work were asked about the duration of paid and unpaid leave, respectively. Note: Estimates were weighted to account for the raked weights that were applied to the Survey for People Affected by Cancer (SPAC).