Grant R01CA196576

Informal caregiver burden in advanced cancer: Economic and health outcomes

As health systems and insurers emphasize increased system efficiencies and reduced hospital days, the responsibility of care for cancer patients is shifting to informal caregivers (CGs) in the home. An estimated 4 million CGs spend an average of 8 hours per day providing care for adults with cancer in the United States. Caregiving includes emotional support, financial assistance, and personal care, as well as coordination of services and skilled nursing6-10. Negative effects include emotional, social and financial disruptions and lessened quality of life and intensify as a cancer patient approaches death. Current research does not fully describe the extensive range of care provided by CGs, how care changes as disease progresses, and whether and when care needs exceed CGs' skills and emotional and financial resources. High subjective burden, such as stress and distress, has been documented for CGs. However, little is known about CGs' objective burden in this population, specifically number and hours of CG tasks and scope and intensity of tasks. This proposed study would be the first to comprehensively examine the lived experiences of CGs of PTs with advanced solid tumor cancers. To accomplish this, the multi-site cohort study will employ a prospective, longitudinal design that will follow CGs of PTs with life limiting cancer for up to 12 months or until 1 month after PT death. Data will be collected bi-weekly and in-person from CGs in their homes using qualitative interviews, quantitative surveys, CG diaries, and structured observation. The overall goal of this study is to understand CG objective burden, a key and understudied contributor to overall CG burden and how it affects both health and economic outcomes of CGs and to identify potentially modifiable factors impacting CG overall burden.