Informal caregiving is all-consuming. For many, this entails providing direct care to the ill loved one and indirectly overseeing many aspects of treatment. This includes managing medications, transportation to appointments, paying bills, dealing with insurers, and assuming family roles that the patient is unable to perform. Additionally, the primary caregiver is often placed in the position of being the information broker, intermediary, advocate, and counselor. This tsunami of stress and added demands often evolves with little warning and can tax the most resilient of caregivers.
Lastly, these new responsibilities frequently are imposed on a platform of considerable importance, namely the need to work.
Contemporary cancer therapy is characterized by its multimodal nature. Most patients receiving treatment today can count on having at least two therapies to endure. In particular, those undergoing hematologic stem cell transplant and others with acute hematologic malignancies, lymphoma, and multiple myeloma, can count on an intense, protracted treatment and recovery course. Often their support needs are considerable and the responsibility to render this care falls to an immediate family member.
A recent publication analyzed findings from two large databases to provide population-based estimates of the effect informal caregiving had on employment. A depiction of the changes that were required to accommodate caregiving responsibilities was also sought.1 Previous to this investigation, only small samples or those representing a single disease site had been targeted to describe this phenomenon. Results from this current research are based on findings from over 5,000 cancer caregivers. Critical findings included the following.
Spouses or partners were most often cited as the primary caregiver. At least 25%-29% were required to make extended adjustments to their employment. Time off from work ranged from 2 months to up to a year and consisted of paid or unpaid leave. Examples of the accommodations to work that were required included altering one’s work schedule, work load and/or job responsibilities, changing from full- to part-time, assuming a less demanding job, or altering retirement plans. Lost job opportunities included losing a job, delaying looking for work, or not taking a promotion. The timing of required work-related accommodation was associated with the start or the end of treatment, particularly when chemotherapy or transplantation were the therapies.
There is considerable emotional, physical, functional, and economic burden associated with informal cancer caregiving. Based on estimates from this investigation, the work of 1.5 million American caregivers was altered, interrupted, or reduced. Findings from this research confirm previous findings that cancer caregivers miss work, work fewer hours, or make career changes based on their caregiving responsibilities and that this impairment is greater than the general public.2-5
Caregiving may not only be detrimental to one’s health, but also to one’s checkbook.
de Moor JS, Dowling EC, Ekwueme DU, et al. Employment implications of informal cancer caregiving. J Cancer Surviv. 2017 Feb;11(1):48-57.
Mosher CE, Champion VL, Azzoli CG, et al. Economic and social changes among distressed family caregivers of lung cancer patients. Support Care Cancer. 2013 Mar;21(3):819-26.
Mazanec SR, Daly BJ, Douglas SL, Lipson AR. Work productivity and health of informal caregivers of persons with advanced cancer. Res Nurs Health. 2011 Dec;34(6):483-95.
Carey M, Paul C, Cameron E, et al. Financial and social impact of supporting a haematological cancer survivor. Eur J Cancer Care. 2012 Mar; 21(2): 169–176.
Warner EL, Kirchhoff AC, Nam GE, Fluchel M. Financial Burden of Pediatric Cancer for Patients and Their Families. J Oncol Pract. 2015 Jan;11(1):12-8.
FDA Approves Onivyde for Advanced Pancreatic Cancer Marijke Vroomen Durning, RN, 10/27/2015 3 On October 22, 2015, the US Food and Drug Administration (FDA) approved Onivyde (irinotecan liposome injection, Merrimack Pharmaceuticals, Inc.), in combination with fluorouracil ...