The contributions of Joan Griffin, Audie Atienza and Julia Rowland to this article were prepared as part of their official duties as United States Federal Government employees
Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue?†
Version of Record online: 4 MAR 2010
Copyright © 2010 John Wiley & Sons, Ltd.
Volume 20, Issue 1, pages 44–52, January 2011
How to Cite
van Ryn, M., Sanders, S., Kahn, K., van Houtven, C., Griffin, J. M., Martin, M., Atienza, A. A., Phelan, S., Finstad, D. and Rowland, J. (2011), Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue?. Psycho-Oncology, 20: 44–52. doi: 10.1002/pon.1703
- Issue online: 4 MAR 2010
- Version of Record online: 4 MAR 2010
- Manuscript Accepted: 2 DEC 2009
- Manuscript Revised: 19 NOV 2009
- Manuscript Received: 9 JUN 2009
- informal care
A great deal of clinical cancer care is delivered in the home by informal caregivers (e.g. family, friends), who are often untrained. Caregivers' context varies widely, with many providing care despite low levels of resources and high levels of additional demands.
Background: Changes in health care have shifted much cancer care to the home, with limited data to inform this transition. We studied the characteristics, care tasks, and needs of informal caregivers of cancer patients.
Methods: Caregivers of seven geographically and institutionally defined cohorts of newly diagnosed colorectal and lung cancer patients completed self-administered questionnaires (n = 677). We combined this information with patient survey and chart abstraction data and focused on caregivers who reported providing, unpaid, at least 50% of the patient's informal cancer care.
Results: Over half of caregivers (55%) cared for a patient with metastatic disease, severe comorbidity, or undergoing current treatment. Besides assisting with activities of daily living, caregivers provided cancer-specific care such as watching for treatment side effects (68%), helping manage pain, nausea or fatigue (47%), administering medicine (34%), deciding whether to call a doctor (30%), deciding whether medicine was needed (29%), and changing bandages (19%). However, half of caregivers reported not getting training perceived as necessary. In addition, 49% of caregivers worked for pay, 21% reported poor or fair health, and 21% provided unpaid care for other individuals. One in four reported low confidence in the quality of the care they provided.
Conclusions: Much assistance for cancer patients is delivered in the home by informal caregivers, often without desired training, with a significant minority having limited resources and high additional demands. Future research should explore the potentially high yield of addressing caregiver needs in improving quality of cancer care and both survivors' and caregivers' outcomes. Copyright © 2010 John Wiley & Sons, Ltd.