Contact Betty Ferrell for a core consultation.
Roles and Responsibilities of the Caregiver Core:
- Discuss opportunities to include caregivers in palliative care studies involving patients.
- Explore areas of science needed to advance understanding of caregiving in palliative care.
- Assist investigators in the selection of conceptual models, study designs, outcome variables and measurement tools for use in caregiver research.
- Discuss opportunities for inclusion of qualitative data in caregiver research.
Caregiver Core Resources
10 Questions to Consider When Doing Research With Family Caregivers: Dr. J. Nick Dionne-Odom's PCRC Webinar, August 22, 2019: Slides Recording
- Caring for Caregivers and Patients: Revisiting the Research and Clinical Priorities for Informal Cancer Caregiving Cancer. 2016 Mar 17.
- Palliative and End of Life Care Priority Setting Partnership (PeolcPSP): Putting patients, carers, and clinicians at the heart of palliative and end of life care research.
- ADRD-specific caregiver related resources: A systematic review
- 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
- Patient-reported outcome measures for cancer caregivers: a systematic review - 2016, Quality of Life Research
- 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.
- 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.
- Examples of Qualitative Research with Caregivers in ADRD Research
- Care Interventions for People Living With Dementia and Their Caregivers
- Caregiver Research: Systematic Review Update 2021
- A systematic review of systematic reviews of needs of family caregivers of older adults with dementia.
- Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners
- Family Caregiver Instruments and Assessment Tools
- Individual Measures - The Tucker-Seeley Research Lab (USC Leonard Davis School of Gerontology)
- Stress Measurement Toolbox - UCSF
- PhenX Toolkit - RTI International
- Additional instrument resources can be accessed on the PCRC Measurement Core page by clicking here.
Caregiving Research Resources:
- Selecting a Conceptual Model of Caregiving Research
- Methodological Considerations for Caregiver Research References
- Case Western Reserve University's Distance Caregiver Study website
- 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.
- Cruz-Oliver DM, Malmstrom TK, Fernández N, Parikh M, García J, Sanchez-Reilly S. Education Intervention "Caregivers Like Me" for Latino Family Caregivers Improved Attitudes Toward Professional Assistance at End-of-life Care. Am J Hosp Palliat Care. 2016 Jul;33(6):527-36. doi: 10.1177/1049909115584315. Epub 2015 May 27. PMID: 26019262.
- Cruz-Oliver DM, Ellis K, Sanchez-Reilly S. Caregivers Like Me: An Education Intervention for Family Caregivers of Latino Elders at End-of-Life. MedEdPORTAL. 2016 Sep 1;12:10448. doi: 10.15766/mep_2374-8265.10448. PMID: 31008226; PMCID: PMC6464451.
- Cruz-Oliver DM, Parikh M, Wallace CL, Malmstrom TK, Sanchez-Reilly S. What Did Latino Family Caregivers Expect and Learn From Education Intervention "Caregivers Like Me"? Am J Hosp Palliat Care. 2018 Mar;35(3):404-410. doi: 10.1177/1049909117709550. Epub 2017 Jun 8. PMID: 28592164.
- Cruz-Oliver DM, Malmstrom TK, Roegner M, Yeo G. Evaluation of a Video-Based Seminar to Raise Health Care Professionals' Awareness of Culturally Sensitive End-of-Life Care. J Pain Symptom Manage. 2017 Oct;54(4):546-554. doi: 10.1016/j.jpainsymman.2017.07.023. Epub 2017 Jul 15. PMID: 28716618.