Grant Number:	1R01CA203999-01A1 Interpret this number
Primary Investigator:	Parker Oliver, Debra
Organization:	University Of Missouri-Columbia
Project Title:	Access_access for Cancer Caregivers to Education and Support for Shared Decision-Making
Fiscal Year:	2017

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.




Cancer-Related Fatigue in Hospice: A Nudge to Action?
Authors: Washington K.T. , Knight A. , Pitzer K.A. , Oliver D.P. , Devlin S.M. , Benson J.J. , Newland P. .
Source: Journal Of Pain And Symptom Management, 2023 May; 65(5), p. e511-e514.
EPub date: 2023-02-01 00:00:00.0.
PMID: 36736862
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Access for Cancer Caregivers to Education and Support for Shared Decision Making (ACCESS) intervention: a cluster cross-over randomised clinical trial.
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Source: Bmj Supportive & Palliative Care, 2023-03-02 00:00:00.0; , .
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Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences.
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Source: Health Communication, 2023-01-22 00:00:00.0; , p. 1-11.
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Hospice Social Work Preferences for the Delivery of Facebook Support Groups: A Discrete Choice Experiment.
Authors: Oliver D.P. , Eshun-Wilsonova I. , Benson J. , Pitzer K. , Washington K.T. .
Source: The American Journal Of Hospice & Palliative Care, 2023-01-19 00:00:00.0; , p. 10499091231152442.
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Source: Palliative Medicine, 2022 Dec; 36(10), p. 1504-1521.
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Family caregiving experiences with hospice lung cancer patients compared to other cancer types.
Authors: Oliver D.P. , Demiris G. , Benson J. , White P. , Wallace A. , Pitzer K. , Washington K. .
Source: Journal Of Psychosocial Oncology, 2022-08-05 00:00:00.0; , p. 1-16.
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Family Members' Perceptions of Caregiver-Centered Communication with Hospice Interdisciplinary Teams: Relationship to Caregiver Wellbeing.
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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.
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Reliability and Validity Testing of the Caregiver Centered Communication Questionnaire.
Authors: Demiris G. , Pitzer K. , Washington K. , Oliver D.P. .
Source: Journal Of Nursing Measurement, 2022-06-09 00:00:00.0; , .
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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 00:00:00.0; , p. 10499091221105882.
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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.
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Anxiety, Depression, Quality of Life, Caregiver Burden, and Perceptions of Caregiver-Centered Communication among Black and White Hospice Family Caregivers.
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Facebook Online Support Groups for Hospice Family Caregivers of Advanced Cancer Patients: Protocol, Facilitation Skills and Promising Outcomes.
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Source: Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer, 2021-11-25 00:00:00.0; , .
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Source: The American Journal Of Hospice & Palliative Care, 2021 Oct; 38(10), p. 1230-1237.
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