Pain at the end of life is a major concern of cancer patients and their family caregivers. The focus of pain management efforts for cancer pain traditionally has been on the patient. Studies of family members, however, have documented that the psychosocial impact of end of life care is profound, particularly when the patient is experiencing pain. For family caregivers, this impact endures--often resulting in increased psychological distress and poorer health long after their loved one dies. The ultimate goal of this research is to develop more effective ways to help patients and their family caregivers cope with cancer pain and thereby reduce the psychological distress associated with pain for the patient and the short-term and enduring negative effects of the caregiving experience for their family members. We recently completed a small pilot study to test a novel Caregiver-Guided Pain Management Training protocol that trained hospice-eligible patients with cancer pain and their family caregivers in behavioral pain coping skills (e.g., relaxation, guided imagery, activity pacing) and taught them how to apply coping skills to manage negative pain-related sequelae and enhance their quality of life. Results indicated that the intervention led to significant improvements in caregiver self-efficacy for helping patients manage pain, and trends for improvements in caregiver strain and patient pain. The proposed study builds on and extends these findings by (a) utilizing the resources and support of the PCRC to access a larger and more diverse sample of patients and their informal caregivers;(b) delivering the intervention via videoconference to increase access and potential for dissemination;and (c) assessing the impact of the intervention on caregiver adjustment after the patient's death. To our knowledge, this will be the first RCT to rigorously examine whether a pain coping skills intervention designed to improve the caregiver's ability to help the patient manage pain at end of life can lead to caregiver benefits during the bereavement period. In this multi-site study, 236 dyads (patients and their family caregivers) will be randomized to either the Caregiver-Guided Pain Management Training protocol or to an Enhanced Treatment-as-Usual control condition. Dyads in the Caregiver-Guided Pain Management condition will receive three one-hour sessions conducted via videoconference. Dyads in the Enhanced Treatment-as-Usual condition will receive educational material about cancer pain and its management but will not receive any study-related treatment sessions. Assessments will be conducted with patients and caregivers before and after treatment, and with caregivers 3 months and 6 months following the patient's death. The primary hypothesis to be tested is that caregivers who receive the intervention will report significantly higher levels of self-efficacy for helping the patient manage pain than caregivers in the control condition. Secondary aims will focus on (a) improvements in short-term caregiver adjustment as well as caregiver adjustment following the patient's death, and (b) patient pain severity, self-efficacy for pain management, and psychological distress.

Public Health Relevance

Pain at the end of life is a major concern of cancer patients their family caregivers. Caregivers of patients with pain suffer high levels of psychological distress, which often endure even after the patient's death. This study will test the efficacy of a caregiver-guided pain management training intervention designed to help patients and caregivers cope with cancer pain at the end of life, thereby reducing patient pain and caregiver short- and long-term distress. The intervention will be delivered by videoconference to ease access and dissemination. If successful, this study will provide evidence for the use of this brief psychosocial intervention that may significantly benefit the family caregivers of the many patients with cancer who experience pain at the end of life.

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Research Project (R01)
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Special Emphasis Panel (ZNR1-REV-T (18))
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Adams, Lynn S
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Duke University
Schools of Medicine
United States
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