Objective burden, resources, and other stressors among informal cancer caregivers: A hidden quality issue?

Michelle Van Ryn, Sara Sanders, Katherine Kahn, Courtney Van Houtven, Joan M. Griffin, Michelle Martin, Audie A. Atienza, Sean Phelan, Deborah Finstad, Julia Rowland

Research output: Contribution to journalArticle

176 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)44-52
Number of pages9
JournalPsycho-Oncology
Volume20
Issue number1
DOIs
StatePublished - Jan 1 2011

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Caregivers
Neoplasms
Quality of Health Care
Health Fairs
Medicine
Bandages
Home Care Services
Activities of Daily Living
Nausea
Fatigue
Survivors
Comorbidity
Colorectal Neoplasms
Lung Neoplasms
Patient Care
Delivery of Health Care
Pain

All Science Journal Classification (ASJC) codes

  • Experimental and Cognitive Psychology
  • Oncology
  • Psychiatry and Mental health

Cite this

Van Ryn, M., Sanders, S., Kahn, K., Van Houtven, C., Griffin, J. M., Martin, M., ... Rowland, J. (2011). Objective burden, resources, and other stressors among informal cancer caregivers: A hidden quality issue? Psycho-Oncology, 20(1), 44-52. https://doi.org/10.1002/pon.1703

Objective burden, resources, and other stressors among informal cancer caregivers : A hidden quality issue? / Van Ryn, Michelle; Sanders, Sara; Kahn, Katherine; Van Houtven, Courtney; Griffin, Joan M.; Martin, Michelle; Atienza, Audie A.; Phelan, Sean; Finstad, Deborah; Rowland, Julia.

In: Psycho-Oncology, Vol. 20, No. 1, 01.01.2011, p. 44-52.

Research output: Contribution to journalArticle

Van Ryn, M, Sanders, S, Kahn, K, Van Houtven, C, Griffin, JM, Martin, M, Atienza, AA, Phelan, S, Finstad, D & Rowland, J 2011, 'Objective burden, resources, and other stressors among informal cancer caregivers: A hidden quality issue?', Psycho-Oncology, vol. 20, no. 1, pp. 44-52. https://doi.org/10.1002/pon.1703
Van Ryn, Michelle ; Sanders, Sara ; Kahn, Katherine ; Van Houtven, Courtney ; Griffin, Joan M. ; Martin, Michelle ; Atienza, Audie A. ; Phelan, Sean ; Finstad, Deborah ; Rowland, Julia. / Objective burden, resources, and other stressors among informal cancer caregivers : A hidden quality issue?. In: Psycho-Oncology. 2011 ; Vol. 20, No. 1. pp. 44-52.
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