The Palliative Care Research Cooperative Group (PCRC) was established in 2010 as the first research cooperative group focused on palliative care and end-of-life (PCEOL) research. The National Institute of Nursing Research (NINR) provided foundational funding through a cooperative agreement (NINR UC4NR012584), and continuation funding was provided in 2013 and 2018 (NINR U24NR014637 and NINR U2CNR014637, respectively). The vision of the PCRC was to provide excellent palliative care relying on the best evidence and a scientific underpinning. The PCRC existed to lead, catalyze, and empower a community of investigators who were developing an evidence base to ensure high-quality care and optimal well-being for persons with serious illness and their caregivers.
Betty Ferrell, RN, PhD, MA, FAAN, FPCN, CHPN, and James (Nick) Dionne-Odom, PhD, MSN, MA, RN, ACHPN, FPCN have successfully led the PCRC’s Caregiver Core efforts. They have supported investigators from a wide array of disciplines and consulted on study design, development of study aims, selection of research instruments, guidance around theoretical frameworks, and support of other aspects of proposal development. Additionally, throughout their tenure of leading the Caregiver Core, Drs. Ferrell and Dionne-Odom have built a substantial toolbox of resources to assist researchers focused on caregivers of patients with serious illness. These resources are shared here in partnership between the PCRC and University of Alabama at Birmingham’s Center for Palliative and Supportive Care.
- Caregiver Research Presentations
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Recommended Readings
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Systematic Reviews
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ADRD-specific caregiver related resources: A systematic review
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Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: A state-of-the-science review - 2017, Heart Failure Review
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Patient-reported outcome measures for cancer caregivers: a systematic review - 2016, Quality of Life Research
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A Review of Family Caregiving Intervention Trials in Oncology - This article contains a review of literature published from 2010 to 2016 on family caregiving in oncology.
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Family Caregiver Strain and Burden: A Systematic Review of Evidence-Based Interventions When Caring for Patients with Cancer - Clin J Oncol Nurs. 2020 Feb 1;24(1):31-50. doi: 10.1188/20.CJON.31-50.
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Examples of Qualitative Research with Caregivers in ADRD Research
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Care Interventions for People Living With Dementia and Their Caregivers
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- Related Organizations
- Caregiver Instruments
- Sample Proposals
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Caregiving Research Resources
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Methodological Considerations for Caregiver Research References
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Case Western Reserve University's Distance Caregiver Study website
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Latino Family Caregiving at End of Life video: A video-soap opera, telenovela entitled Cuidadores como yo/Caregivers Like Me for the education of family caregivers. Available in English or Spanish.
Caregiver Core resources were generously funded by the National Institute of Nursing Research (NINR Grants UC4NR012584, U24NR014637, and U2CNR014637).