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Developing an Implementation Strategy (the Caregiver Support Incubator) for Integrating Family Caregiver Distress Assessment and Support in Real-World Clinical Settings
Betty Irene Moore Foundation
PI: J. Nicholas Dionne-Odom, PhD, APRN, ACHPN, FPCN
Guided by the steps of intervention/implementation mapping, the purpose of this project is to formatively develop and pilot a health system-based Caregiver Support Incubator as an implementation strategy to improve adoption, implementation, sustainment, and scale-up of caregiver distress assessment and support. The primary deliverable after project completion will be a web-based “toolkit” that manualizes the structure and operating features of the Caregiver Support Incubator that can be tested and integrated in other health systems across the U.S. (and beyond).
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Distress Prediction in Advanced Cancer Family Caregivers and their Care Recipients using Digital Phenotyping
Cambia Health Foundation
PI: J. Nicholas Dionne-Odom, PhD, APRN, ACHPN, FPCN
The purpose of this project is to explore the feasibility, acceptability, and potential utility of passively-collected smartphone data to assess distress in family caregivers and their care recipients with advanced cancer in an underserved context. We will passively collect smartphone behavioral data, including GPS, accelerometer, and anonymized call and text messaging use patterns, and develop time-varying statistical models to detect behavioral anomalies and correlates these anomalies with participant-reported distress and quality of life over 24 weeks.
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Implementing distress screening into palliative care practices
PI: J. Nicholas Dionne-Odom, PhD, APRN, ACHPN, FPCN
Examine first-year experiences of a nurse-led clinic-based telehealth support service (Family-Strong) for family caregivers of patients with recently diagnosed grade IV brain tumors.
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Lay Coach-Led Early Palliative Care for Underserved Advanced Cancer Caregivers: The Project ENABLE Cornerstone RCT
National Cancer Institute/NIH/DHHS
PI: J. Nicholas Dionne-Odom, PhD, APRN, ACHPN, FPCN
The purpose of this hybrid type I randomized controlled trial is to test the effectiveness and evaluate costs of a lay navigator-led, early palliative care telehealth intervention (ENABLE Cornerstone) on demonstrating reduced FCG and patient distress and better QOL compared to usual care with a sample of 294 ruraldwelling and African-American family caregivers of newly-diagnosed advanced cancer patients from two community cancer centers in Birmingham, AL and Mobile, AL.
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An Optimization Trial to Prepare Advanced Cancer Family Caregivers for Decision Partnering Using the Multiphase Optimization Strategy (MOST)
National Palliative Care Research Center
PI: J. Nicholas Dionne-Odom, PhD, APRN, ACHPN, FPCN
Using the Multiphase Optimization Strategy (MOST), the purpose of this study is to pilot test an optimization trial approach to develop and refine the decision partnering skills of family caregivers of persons with newly diagnosed advanced cancer. Using a 23 (2x2x2) factorial design, 40 family caregivers of persons with newly diagnosed advanced cancer will be randomized to receive one or more nurse coach-delivered decision partnering training components, based on the Ottawa Decision Support Framework and Social Support
Effectiveness Theory: 1) psychoeducation on effective decision partnering principles (1 vs. 3 sessions); 2) decision partnering communication training (yes vs. no); and 3) Ottawa Decision Guide training (yes vs. no).
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Psychosocial Oncology Training Academy (POTA): Building Community Capacity to Meet the Psychosocial Care Needs of Breast Cancer Patients and Families
Women’s Breast Health Fund
PI: Chao-Hui Sylvia Huang, PhD, MA, Med
The Psychosocial Oncology Training Academy (POTA) is a professional training quality improvement project designed to enhance knowledge and skills of mental health and primary care clinicians providing psychosocial care for breast cancer survivors and co-survivors in the Greater Birmingham area.
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An Upstream Palliative Care Intervention for Rural and African-American Advanced Cancer Family Caregivers
National Institute of Nursing Research/NIH/DHHS
PI: J. Nicholas Dionne-Odom, PhD, APRN, ACHPN, FPCN
The purpose of this pilot randomized controlled trial is to assess acceptability, feasibility, and potential efficacy of a lay navigator-led, early palliative care telehealth intervention (ENABLE Cornerstone) for African- American and rural-dwelling family caregivers of persons with newly diagnosed advanced cancer.