Unmet Desire for Caregiver-Patient Communication and Increased Caregiver Burden

Authors

  • Terri R. Fried MD,

    1. From the *Clinical Epidemiology Unit, Veterans Affairs Connecticut Healthcare System, West Haven, Connecticut; Departments of Medicine and Epidemiology and Public Health, §Program on Aging, School of Medicine, Yale University, New Haven, ConnecticutDepartment of Geriatic Psychiatry, Weill Medical College of Cornell University, Ithaca, New York.
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  • Elizabeth H. Bradley PhD,

    1. From the *Clinical Epidemiology Unit, Veterans Affairs Connecticut Healthcare System, West Haven, Connecticut; Departments of Medicine and Epidemiology and Public Health, §Program on Aging, School of Medicine, Yale University, New Haven, ConnecticutDepartment of Geriatic Psychiatry, Weill Medical College of Cornell University, Ithaca, New York.
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  • John R. O'Leary MA,

    1. From the *Clinical Epidemiology Unit, Veterans Affairs Connecticut Healthcare System, West Haven, Connecticut; Departments of Medicine and Epidemiology and Public Health, §Program on Aging, School of Medicine, Yale University, New Haven, ConnecticutDepartment of Geriatic Psychiatry, Weill Medical College of Cornell University, Ithaca, New York.
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  • Amy L. Byers MPH

    1. From the *Clinical Epidemiology Unit, Veterans Affairs Connecticut Healthcare System, West Haven, Connecticut; Departments of Medicine and Epidemiology and Public Health, §Program on Aging, School of Medicine, Yale University, New Haven, ConnecticutDepartment of Geriatic Psychiatry, Weill Medical College of Cornell University, Ithaca, New York.
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  • Supported by Grant PCC-98-070-1 from VA HSR & D, R01 AG19769 from the National Institute on Aging (NIA), and a Paul Beeson Physician Faculty Scholars Award. Dr. Fried is supported by an investigator award from the NIA (K02 AG20113), and Dr. Bradley is supported by an investigator award from the Patrick and Catherine Weldon Donaghue Medical Research Foundation (DF 02–102). Presented in part at the 2002 American Geriatrics Society annual meeting, Washington, DC.

Address correspondence to Terri R. Fried, MD, Geriatrics and Extended Care, 240, VA Connecticut Health Care System, 950 Campbell Avenue, West Haven, CT 06516. E-mail: terri.fried@yale.edu

Abstract

Objectives: To examine the adequacy of caregiver-patient communication in serious illness and its relationship to caregiver burden.

Design: Cross-sectional cohort study.

Setting: Participants' homes.

Participants: One hundred ninety-three persons aged 60 and older seriously ill with cancer, congestive heart failure, or chronic obstructive pulmonary disease and their caregivers.

Measurements: Communication concerns, measured in terms of agreement with statements regarding desire for and difficulty with communication about the patient's illness. Caregiver burden, measured using a 10-item subset of the Zarit Burden Inventory, with scores ranging from 0 to 40 and higher scores indicating greater burden.

Results: Of caregivers, 39.9% desired more communication, and 37.3% reported that communication was difficult. Of patients, 20.2% desired more communication, and 22.3% reported that communication was difficult. Disagreement regarding communication concerns was frequent in caregiver-patient pairs; of caregivers who desired more communication, 83.1% of patients did not, and of patients who desired more communication, 66.7% of caregivers did not. Caregivers who desired more communication had significantly higher caregiver burden scores than did caregivers who did not (9.2 vs 4.7, P<.001), even after adjusting for patient's diagnosis, income, and functional status and caregivers' age, sex, and relationship to the patient.

Conclusion: A large proportion of caregivers and seriously ill older persons had an unmet desire for increased communication, although they frequently disagreed with each other about this desire. Caregivers' desire for increased communication may be a modifiable determinant of caregiver burden.

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