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Grant Details

Grant Number: 5R01NR016249-04 Interpret this number
Primary Investigator: Ellington, Lee
Organization: University Of Utah
Project Title: Cancer Caregiver Interactions with the Hospice Team: Implications for End of Life and Bereavement Outcomes
Fiscal Year: 2020


 DESCRIPTION (provided by applicant): In home-based hospice, family caregivers (FCGs) provide 24/7 care, including patient symptom management and emotional support, while simultaneously managing their own distress and the physical demands of caregiving. Advanced cancer hospice patients often face a much more rapid decline than other hospice patients, and as death approaches, both care demands and caregiver stress increase. FCGs of cancer hospice patients frequently report feeling unprepared for their role and express the need for more information and support. When FCG needs go unaddressed, cancer patient care may be compromised and FCG quality of life and emotional well-being are negatively impacted. The hospice care team (HCT) is designed to inform and support families as integral team members, and to provide high quality care and effective communication aligned to meet specific patient and family needs. However, our work and that of others indicate FCGs of hospice cancer patients are reluctant to voice concerns, and HCTs often do not recognize the critical role of FCGs, failing to fully address their concerns. The dynamic change in patient and family needs during care and the response of the entire interdisciplinary team has been largely neglected in research to date. Further, there is little work on the long term impact of hospice care and FCGs' bereavement adjustment. We propose to address these gaps by evaluating HCTs' responsiveness in terms of timely alignment to hospice FCGs' daily needs and assessing the impact of these interactions on FCG outcomes. Leveraging the resources of the Palliative Care Research Cooperative and our team's previous research experience, we will conduct a multi- site, multi-method prospective longitudinal study in which we systematically monitor the daily fluctuation of FCGs needs. Using an automated telecommunication system, 120 FCGs will rate patient and FCG symptom burden, and FCG anxiety, depression, positive affect, and spiritual wellbeing. We will then use a novel approach to assess HCT responsiveness to these needs, we will analyze ongoing alignment of FCG-HCT communication during home visits and phone calls. Mean level and rate of change of FCG-HCT alignment will be assessed to predict FCG post-patient death outcomes at 2 and 6 months post death, including psychological adjustment, burden, health status, and satisfaction with care. Finally, we propose to capture FCGs' daily experiences with hospice care through audio diaries to determine how/whether their perceptions map onto objective measures and interpersonal communication patterns with the HCT. Instead of examining the hospice care process through a more traditional lens in a one time-encounter, this project will be the first to assess the complex clinical reality of hospice care by capturing FCG daily needs and the response of each member of the team over the course of care to assess impact on FCG outcomes. The long term goal of this project is to inform future clinical interventions by identifying specific family-centered HCT processes that are linked to improved FCG outcomes.


Hospice Family Caregivers' Uncertainty, Burden, and Unmet Needs in Prospective Audio Diaries.
Authors: Thomas Hebdon M.C. , Cloyes K.G. , Vega M. , Rosenkranz S.J. , Reblin M. , Tay D. , Mooney K. , Ellington L. .
Source: Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association, 2023-12-01; 25(6), p. 321-329.
EPub date: 2023-10-18.
PMID: 37851960
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Cancer Hospice Caregivers' Self-care Behaviors: The Role of Caregiving Tasks, Burden, and Mental Health.
Authors: Tay D.L. , Reblin M. , Iacob E. , Cloyes K.G. , Thomas Hebdon M.C. , Reynaga M. , Mooney K. , Ellington L. .
Source: Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association, 2023-10-01; 25(5), p. 286-295.
EPub date: 2023-06-22.
PMID: 37347956
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Moderating Effect of Work on Burden and Hospice Family Caregiver Well-Being.
Authors: Xu J. , Hebdon M. , Beck A. , Cloyes K.G. , Mooney K. , Reblin M. , Tay D. , Appiah E.O. , Ellington L. .
Source: Journal of palliative medicine, 2023 Jul; 26(7), p. 941-950.
EPub date: 2023-02-17.
PMID: 36799950
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Family Caregiver Reports of Their Own and Patient Symptoms in Cancer Home Hospice Approaching End-of-Life.
Authors: Reblin M. , Iacob E. , Tay D.L. , Li H. , Thomas Hebdon M.C. , Beck A. , Donaldson G. , Cloyes K.G. , Ellington L. .
Source: The American journal of hospice & palliative care, 2023 May; 40(5), p. 508-516.
EPub date: 2022-06-10.
PMID: 35689339
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Hospice Caregivers' Perception of Family and Non-Family Social Support and Stress over Time: Associations with Reports of General Support.
Authors: Reblin M. , Tay D.L. , Iacob E. , Cloyes K.G. , Hebdon M.C.T. , Ellington L. .
Source: International journal of environmental research and public health, 2023-03-12; 20(6), .
EPub date: 2023-03-12.
PMID: 36981917
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Home Hospice Family Caregivers' Use of Audio Diaries and Reported Prevalence of Patient and Caregiver Symptoms.
Authors: Cloyes K.G. , Thomas Hebdon M.C. , Vega M. , Rosenkranz S.J. , Tay D. , Reblin M. , Mooney K. , Ellington L. .
Source: Journal of pain and symptom management, 2023 Mar; 65(3), p. 183-192.
EPub date: 2022-12-07.
PMID: 36493980
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What contextual factors account for anxiety and depressed mood in hospice family caregivers?
Authors: Tay D.L. , Iacob E. , Reblin M. , Cloyes K.G. , Jones M. , Hebdon M.C.T. , Mooney K. , Beck A.C. , Ellington L. .
Source: Psycho-oncology, 2022 Feb; 31(2), p. 316-325.
EPub date: 2021-09-12.
PMID: 34510631
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Patterns of stress and support in social support networks of in-home hospice cancer family caregivers.
Authors: Guo J.W. , Reblin M. , Tay D. , Ellington L. , Beck A.C. , Cloyes K.G. .
Source: Journal of social and personal relationships, 2021 Nov; 38(11), p. 3121-3141.
EPub date: 2021-06-16.
PMID: 34898795
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"I Feel All Alone Out Here": Analysis of Audio Diaries of Bereaved Hospice Family Caregivers During the COVID-19 Pandemic.
Authors: Tay D.L. , Thompson C. , Jones M. , Gettens C. , Cloyes K.G. , Reblin M. , Thomas Hebdon M.C. , Beck A.C. , Mooney K. , Ellington L. .
Source: Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association, 2021-08-01; 23(4), p. 346-353.
PMID: 33660671
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Hospice interdisciplinary team providers' attitudes toward sexual and gender minority patients and caregivers.
Authors: Cloyes K.G. , Tay D.L. , Iacob E. , Jones M. , Reblin M. , Ellington L. .
Source: Patient education and counseling, 2020 Oct; 103(10), p. 2185-2191.
EPub date: 2020-07-08.
PMID: 32660741
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