Core Leadership:
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
Please reach out if you are interested in any of our Caregiver Core Resources by emailing us at PCRC@ucdenver.edu
Recommended Reading:
- 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.
Systematic Reviews:
- 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.
Related Organizations:
Caregiver Instruments:
- 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.
Sample Proposals:
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.