Combining the strengths of three interdisciplinary research teams, the goals of this program project are: 1. to advance the science of cancer end-of-life and bereavement care by exploring and intervening to improve the experience and outcomes for spouse/partner caregivers;2. to expedite the formation of a new interdisciplinary science team from three separate programs of research, leveraging different perspectives to improve understanding and produce meaningful interventions that address the continuum of end-of-life and bereavement care;3. to extend research questions beyond those possible through individual studies and existing research programs and;4. to accelerate and expand the dissemination of effective end-of-life and bereavement models, methods and findings, The goals will be accomplished through implementation of three theoretically based research projects sharing one implementation core which provides the infrastructure and coordination among the projects. The first project, Symptom Care by Phone (SCP), a prospective clinical trial, will test an automated computer based telecommunication system that assesses severity and distress from physical and psychological symptoms common at the end-of-life, sends e-mail alerts to the hospice nurse of unrelieved symptoms and provides tailored management strategies to spouse/partner caregivers based on the individual symptom pattern. 300 home hospice cancer patients age 50+ and their caregivers will be randomized to intervention or usual care. The second project, Nurse-Caregiver Communication (NCC) will begin simultaneously. It will examine communication patterns and trajectories of communication during audio taped hospice RN home visits with the 300 caregivers. These interactions will be coded with the Roter Interaction Analysis System. The third project, Individualized Dual Process Model (DPM), will test the effectiveness of an intervention to enhance coping processes and outcomes of the spouse/partner caregivers during bereavement. 160 bereaved caregivers from the SCP project will be randomly selected and assigned to one of the two DPM project groups. Additional synergistic, interdependent aims will address cross project questions and extend the depth and breadth of the analyses using both pre and post death data.
How we provide effective and humane care for people dying of cancer and their family caregivers is a significant societal and public health concern. This program project grant will improve our understanding of effective health care provider-family caregiver communication, contribute a new approach to assist caregivers and health care providers in providing end-of-life symptom care at home and offers an intervention that enhances bereavement adjustment.
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| 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 |
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