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Grant Details

Grant Number: 7R01CA203999-05 Interpret this number
Primary Investigator: Parker Oliver, Debra
Organization: Washington University
Project Title: Access_access for Cancer Caregivers to Education and Support for Shared Decisionmaking
Fiscal Year: 2021


ACCESS (Access for Cancer Caregivers to Education and Support for Shared decision-making) Abstract We have designed a pragmatic randomized controlled trial to test an intervention for a population seldom studied―hospice family caregivers―targeting an identified need (decision-making), and measuring a core set of caregiver outcomes (anxiety, pain knowledge, and patient pain). This innovative proposal will be the first shared decision making intervention in the hospice setting. This project proposes an intervention for hospice family caregivers called ACCESS (Access for Cancer Caregivers to Education and Support for Shared decision-making). Our preliminary work (R01NR011472) found that it is feasible to use web-based conferencing to facilitate family caregiver attendance at the hospice care plan meetings. Qualitative feedback indicates this attendance is beneficial to family members. However, we conclude that simply enabling attendance at these meetings is not sufficient to change clinical outcomes. For caregivers anxiety to be changed they need to be prepared for these encounters and actively engaged with the hospice staff in shared decision-making. There is a critical need to arm Hospice family caregivers with necessary information and a strengthened their emotional state so they may become decision-makers. We propose using the Facebook platform to improve emotional support and caregiver knowledge to better prepare caregivers for participation and decision-making. The proposal is based on a conceptual model that combines collaboration with shared decision-making. A pragmatic randomized controlled trial (P-RCT) design will randomly assign subjects to one of three groups: 1) Group 1 will serve as the control and receive usual hospice care enhanced by hospice staff training in shared decision making, 2) Group 2 is one intervention group and will receive usual care as well as participate in a private Facebook support group to increase their knowledge and social/emotional support, 3) Group 3 will receive enhanced usual care, participate in the Facebook support group, and participate in hospice team meetings with a shared decision making process. We will use qualitative and quantitative methods in parallel and equal status to measure the efficacy of the intervention. Our overall hypothesis is that ACCESS will improve hospice cancer family caregiver knowledge (via YouTube videos) and emotional state (via Facebook), facilitating a shared decision making process, which will result in improved caregiver anxiety and knowledge and improved pain control for patients. We have three specific aims: 1) Evaluate the effect of ACCESS on hospice FCGs anxiety, pain knowledge, and patient pain; 2) Evaluate the effect of social media as a decision aids and decision support for pain management for FCGs; 3) Evaluate the satisfaction of staff and FCGs with a SDM process for pain management.


Older Adult Engagement With Facebook® Interventions: A Challenge for Nursing Research.
Authors: Oliver D.P. , Kruse R.L. , Pitzer K. , Washington K.T. , Starr L.T. , Liu J. , Smith J. , Jorgenson L. , Demiris G. .
Source: Journal of gerontological nursing, 2022 Jul; 48(7), p. 10-17.
EPub date: 2022-07-01.
PMID: 35771068
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Insomnia Symptoms Among Hospice Family Caregivers: Prevalence and Association with Caregiver Mental and Physical Health, Quality of Life, and Caregiver Burden.
Authors: Starr L.T. , Washington K. , McPhillips M.V. , Pitzer K. , Demiris G. , Oliver D.P. .
Source: The American journal of hospice & palliative care, 2022-05-26; , p. 10499091221105882.
EPub date: 2022-05-26.
PMID: 35620797
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Facebook Online Support Groups for Hospice Family Caregivers of Advanced Cancer Patients: Protocol, Facilitation Skills and Promising Outcomes.
Authors: Parker Oliver D. , Washington K.T. , Benson J. , White P. , Cruz Oliver D. , Smith J.B. , Mazur J. , Lakew A. , Lewis A. , Demiris G. .
Source: Journal of social work in end-of-life & palliative care, 2022 Apr-Jun; 18(2), p. 146-159.
EPub date: 2022-03-12.
PMID: 35282796
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A Goal-Directed Model of Collaborative Decision Making in Hospice and Palliative Care.
Authors: Washington K.T. , Demiris G. , White P. , Mathis H.C. , Forsythe J.E. , Parker Oliver D. .
Source: Journal of palliative care, 2022 Apr; 37(2), p. 120-124.
EPub date: 2021-11-17.
PMID: 34787009
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Mixed methods analysis of hospice staff perceptions and shared decision making practices in hospice.
Authors: Oliver D.P. , Washington K.T. , Pitzer K. , Popejoy L. , White P. , Wallace A.S. , Grimsley A. , Demiris G. .
Source: Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2022 Mar; 30(3), p. 2679-2691.
EPub date: 2021-11-25.
PMID: 34825279
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Comparison of Traditional Videos With Telenovelas for Hospice Family Caregivers Education.
Authors: Cruz-Oliver D.M. , Abshire M. , Budhathoki C. , Hladek M.D. , Volandes A. , Jorgensen L. , Oliver D.P. .
Source: The American journal of hospice & palliative care, 2021 Oct; 38(10), p. 1230-1237.
EPub date: 2021-02-08.
PMID: 33550835
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Perceived Benefits and Burdens of Participation for Caregivers of Cancer Patients in Hospice Clinical Trials: A Pilot Study.
Authors: Oliver D.P. , Benson J.J. , Ulrich C. , Washington K.T. , Rolbiecki A.J. , White P. , Smith J.B. , Lero C. , Landon O.J. , Demiris G. .
Source: Journal of pain and symptom management, 2021 Jun; 61(6), p. 1147-1154.
EPub date: 2020-11-06.
PMID: 33166583
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Reflections of Hospice Staff Members About Educating Hospice Family Caregivers Through Telenovela.
Authors: Cruz-Oliver D.M. , Abshire M. , Budhathoki C. , Oliver D.P. , Volandes A. , Smith T.J. .
Source: The American journal of hospice & palliative care, 2021 Feb; 38(2), p. 161-168.
EPub date: 2020-07-08.
PMID: 32638608
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The evidence supporting educational videos for patients and caregivers receiving hospice and palliative care: A systematic review.
Authors: Cruz-Oliver D.M. , Pacheco Rueda A. , Viera-Ortiz L. , Washington K.T. , Oliver D.P. .
Source: Patient education and counseling, 2020 Sep; 103(9), p. 1677-1691.
EPub date: 2020-03-19.
PMID: 32241583
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Factors influencing engagement in an online support group for family caregivers of individuals with advanced cancer.
Authors: Washington K.T. , Oliver D.P. , Benson J.J. , Rolbiecki A.J. , Jorgensen L.A. , Cruz-Oliver D.M. , Demiris G. .
Source: Journal of psychosocial oncology, 2020 May-Jun; 38(3), p. 235-250.
EPub date: 2019-11-06.
PMID: 31690247
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Online social support groups for informal caregivers of hospice patients with cancer.
Authors: Benson J.J. , Oliver D.P. , Washington K.T. , Rolbiecki A.J. , Lombardo C.B. , Garza J.E. , Demiris G. .
Source: European journal of oncology nursing : the official journal of European Oncology Nursing Society, 2020 Feb; 44, p. 101698.
EPub date: 2019-11-22.
PMID: 31816508
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Challenges in Implementing Hospice Clinical Trials: Preserving Scientific Integrity While Facing Change.
Authors: Oliver D.P. , Washington K.T. , Demiris G. , White P. .
Source: Journal of pain and symptom management, 2020 Feb; 59(2), p. 365-371.
EPub date: 2019-10-11.
PMID: 31610273
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Preliminary Results of Caregiver Speaks: A Storytelling Intervention for Bereaved Family Caregivers.
Authors: Rolbiecki A.J. , Oliver D.P. , Washington K. , Benson J.J. , Jorgensen L. .
Source: Journal of loss & trauma, 2020; 25(5), p. 438-453.
EPub date: 2020-01-07.
PMID: 33335452
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Assessing the Reliability and Validity of a Brief Measure of Caregiver Quality of Life.
Authors: Oliver D.P. , Kruse R.L. , Smith J. , Washington K. , Demiris G. .
Source: Journal of pain and symptom management, 2019 Nov; 58(5), p. 871-877.
EPub date: 2019-07-31.
PMID: 31376521
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A Comparison of Rural and Urban Hospice Family Caregivers' Cancer Pain Knowledge and Experience.
Authors: Washington K.T. , Oliver D.P. , Smith J.B. , Kruse R.L. , Meghani S.H. , Demiris G. .
Source: Journal of pain and symptom management, 2019 Oct; 58(4), p. 685-689.
EPub date: 2019-07-17.
PMID: 31325546
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