title: Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue?
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.
authors.affiliation: University of Iowa, Iowa City, IA, USA. vanry001@umn.edu
authors.forename: Michelle
authors.initials: M
authors.lastname: van Ryn
authors.forename: Sara
authors.initials: S
authors.lastname: Sanders
authors.forename: Katherine
authors.initials: K
authors.lastname: Kahn
authors.forename: Courtney
authors.initials: C
authors.lastname: van Houtven
authors.forename: Joan M
authors.initials: JM
authors.lastname: Griffin
authors.forename: Michelle
authors.initials: M
authors.lastname: Martin
authors.forename: Audie A
authors.initials: AA
authors.lastname: Atienza
authors.forename: Sean
authors.initials: S
authors.lastname: Phelan
authors.forename: Deborah
authors.initials: D
authors.lastname: Finstad
authors.forename: Julia
authors.initials: J
authors.lastname: Rowland
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D015331:Cohort Studies; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D005190:Family / Q000523:psychology; D005260:Female; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000451:nursing*; D012944:Social Support; D013315:Stress, Psychological / Q000523:psychology*; D011795:Surveys and Questionnaires; D055815:Young Adult