With healthcare increasingly moving into the home, a growing number of informal caregivers are seeking help from home hospice services for end of life cancer care. The informational, physical, and emotional concerns of caregivers are likely to vary over the course of the final stages of the patients'cancer and then as caregivers enter bereavement. A key task of the hospice RN case manager is to facilitate the management of caregiver needs by eliciting caregiver concerns. Effective communication between the nurse and the caregiver has the potential to enhance symptom management for the patient, reduce caregiver burden, and improve bereavement adjustment. Although effective communication at end-of life has been deemed critical, and is essential to optimal end of life patient care, little systematic research has been conducted on this topic. An important gap remains in our understanding of nurse-caregiver communication processes over the course of end-of-life care. During hospice care for cancer patients, nurses and caregivers develop a working/caring relationship in which the nature of their communication may vary according to the dynamic nature of the dying process. In this observational study, we will examine communication processes between the nurse and caregiver over the course of multiple home-based encounters. The project is guided by a patient-centered communication framework with a focus on key care domains (physical, psychological and spiritual) established by the National Consensus Project for Quality Palliative Care. We plan to audiotape all face-to-face encounters between nurses and spouse/partner caregivers for 300 home hospice oncology patients. All encounters will be coded with the Roter Interaction Analysis System. Project aims include: 1) To identify the overall trajectory of change in nurse-caregiver communication within three critical domains of end of life care over the course of home hospice visits;2) To identify patient, caregiver and nurse factors that predict variability in the trajectory of change in nurse-caregiver communication;3) To quantity how changing levels of communication interdependence between nurses and caregivers over the course of home visits determine caregiver outcomes. Findings will generate new knowledge about communication between nurses and home-based caregivers, about the trajectories of end-of-life communication, and identify caregiver subgroups that may be at-risk for poor adjustment. Results will inform future interventions that may improve end-of-life communication, as well as have implications for bereavement.

Public Health Relevance

Effective communication between cancer caregivers and nurses is vital to ensure emotional and physical well-being of both caregivers and patients during end of life care. For home-based care, hospice RN case managers are the primary interface between the caregiver and the healthcare system. Better understanding of how hospice nurses and caregivers interact will inform future interventions, ultimately helping to facilitate optimal end-of life experiences and promote caregiver bereavement adjustment.

National Institute of Health (NIH)
National Cancer Institute (NCI)
Research Program Projects (P01)
Project #
Application #
Study Section
Special Emphasis Panel (ZCA1-RPRB-7)
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
University of Utah
Salt Lake City
United States
Zip Code
Ellington, Lee; Clayton, Margaret F; Reblin, Maija et al. (2018) Communication among cancer patients, caregivers, and hospice nurses: Content, process and change over time. Patient Educ Couns 101:414-421
Hudson, Janella; Reblin, Maija; Clayton, Margaret F et al. (2018) Addressing cancer patient and caregiver role transitions during home hospice nursing care. Palliat Support Care :1-8
Han, Claire J; Chi, Nai-Ching; Han, Soojeong et al. (2018) Communicating Caregivers' Challenges With Cancer Pain Management: An Analysis of Home Hospice Visits. J Pain Symptom Manage 55:1296-1303
Terrill, Alexandra L; Ellington, Lee; John, Kevin K et al. (2018) Positive emotion communication: Fostering well-being at end of life. Patient Educ Couns 101:631-638
Xu, Jiayun; Yang, Rumei; Wilson, Andrew et al. (2018) Using Social Network Analysis to Investigate Positive EOL Communication. J Pain Symptom Manage 56:273-280
Oliver, Debra Parker; Washington, Karla; Demiris, George et al. (2018) Shared Decision Making in Home Hospice Nursing Visits: A Qualitative Study. J Pain Symptom Manage 55:922-929
Dingley, Catherine E; Clayton, Margaret; Lai, Djin et al. (2017) Caregiver Activation and Home Hospice Nurse Communication in Advanced Cancer Care. Cancer Nurs 40:E38-E50
Clayton, Margaret F; Hulett, Jennifer; Kaur, Kirandeep et al. (2017) Nursing Support of Home Hospice Caregivers on the Day of Patient Death. Oncol Nurs Forum 44:457-464
Caserta, Michael; Utz, Rebecca; Lund, Dale et al. (2017) Cancer Caregivers' Preparedness for Loss and Bereavement Outcomes: Do Preloss Caregiver Attributes Matter? Omega (Westport) :30222817729610
Reblin, Maija; Clayton, Margaret F; Xu, Jiayun et al. (2017) Caregiver, patient, and nurse visit communication patterns in cancer home hospice. Psychooncology 26:2285-2293

Showing the most recent 10 out of 16 publications