Journal of Cancer Survivorship

, Volume 11, Issue 1, pp 48–57 | Cite as

Employment implications of informal cancer caregiving

  • Janet S. de MoorEmail author
  • Emily C. Dowling
  • Donatus U. Ekwueme
  • Gery P. GuyJr.
  • Juan Rodriguez
  • Katherine S. Virgo
  • Xuesong Han
  • Erin E. Kent
  • Chunyu Li
  • Kristen Litzelman
  • Timothy S. McNeel
  • Benmei Liu
  • K. Robin Yabroff



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.


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.


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.


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.


Neoplasms Caregivers Employment Cost-of-illness Quality of life 



The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the National Cancer Institute, the Centers for Disease Control and Prevention, or the American Cancer Society.

Compliance with ethical standards

This article does not contain any studies with human participants performed by any of the authors.

Conflict of interests

The authors declare that they have no conflict of interest.


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Copyright information

© Springer Science+Business Media New York (outside the USA) 2016

Authors and Affiliations

  • Janet S. de Moor
    • 1
    • 7
    Email author
  • Emily C. Dowling
    • 2
  • Donatus U. Ekwueme
    • 3
  • Gery P. GuyJr.
    • 3
  • Juan Rodriguez
    • 3
  • Katherine S. Virgo
    • 5
  • Xuesong Han
    • 4
  • Erin E. Kent
    • 1
  • Chunyu Li
    • 3
  • Kristen Litzelman
    • 1
  • Timothy S. McNeel
    • 6
  • Benmei Liu
    • 1
  • K. Robin Yabroff
    • 1
  1. 1.Division of Cancer Control and Population SciencesNational Cancer InstituteBethesdaUSA
  2. 2.Institute for Technology AssessmentMassachusetts General HospitalBostonUSA
  3. 3.Division of Cancer Prevention and Control, National Center for Chronic Disease Prevention and Health PromotionCenters for Disease Control and PreventionAtlantaUSA
  4. 4.Surveillance and Health Services Research ProgramAmerican Cancer SocietyAtlantaUSA
  5. 5.Department of Health Policy and Management, Rollins School of Public HealthEmory UniversityAtlantaUSA
  6. 6.Information Management Services, Inc.CalvertonUSA
  7. 7.Healthcare Assessment Research Branch, Healthcare Delivery Research Program, Division of Cancer Control and Population SciencesNational Cancer InstituteBethesdaUSA

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