Barriers to Pain Management in Hospice: A Study of Family Caregivers

ABSTRACT

Cancer-related pain not only affects the patient but the family/caregiver as well. The purpose of this study was to examine concerns about reporting pain and using analgesics in a sample of primary caregivers of cancer patients receiving care from a hospice program. The Barriers Questionnaire (BQ), an instrument designed to measure eight common barriers to adequate management of cancer pain, was administered to 37 persons identified as primary caregivers. Between 62 percent and 100 percent of the caregivers reported having at least some agreement with the various concerns that are barriers to reporting pain and using analgesics, and 3 percent to 43 percent reported having strong agreement. The subscales with the highest means were fear of opioid side effects, fear of addiction, the belief that increasing pain signifies disease progression, and the fear of injections. Caregivers who were older and less educated were more likely to believe that reporting pain may distract the physician from treating or curing the cancer. In addition, caregivers with lower educational levels had higher scores on the overall BQ. Finally, caregivers of patients who reported pain was not a problem on program admission had greater concerns about tolerance and were more likely to believe that “good” patients do not complain. The caregiver, often, with time and the declining abilities of the patient, becomes the first line decision maker regarding the patient’s care and treatment. Understanding caregiver perspectives is important for continued success with managing pain in hospice and, arguably, all settings. [Article copies available from The Haworth Document Delivery Service: 1-800-342-9678.]

Additional information

Notes on contributors

Patricia Emery Berry

Patricia Emery Berry, MS, RN, is a doctoral candidate, Department of Child and Family Studies, University of Wisconsin-Madison.

Sandra E. Ward

Sandra E. Ward, PhD, RN, is Associate Professor, School of Nursing, University of Wisconsin-Madison, Member of the Pain Research Group, and Associate Director of Nursing Research, University of Wisconsin-Madison Comprehensive Cancer Center.