Core Leadership:
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
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
- https://gero.usc.edu/labs/tuckerseeleylab/individual-measures/
- https://www.stressmeasurement.org/measurement-toolbox
- https://www.phenxtoolkit.org/
- 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, Fernandez N, Parikh M, Malmstrom TK, Gonzalez J, Sanchez-Reilly S. Education Intervention"Caregivers Like Me" for Latino Family Caregivers Improved Attitudes Toward Professional Assistance at End-of-lifeCare. American Journal of Hospice and Palliative Medicine. 2015 May 27. pii: 1049909115584315. [Epub ahead of print]
- Cruz- Oliver DM, Ellis K, Sanchez-Reiley S. Caregivers Like Me: An Education Intervention for Family Caregivers of Latino Elders at End-of-Life. MedEdPORTAL Publications. 2016;12:10448. http://dx.doi.org/10.15766/mep_2374-8265.10448.
- Cruz-Oliver DM, Parhk M, Wallace C. What did Latino Family Caregivers expect and learn from Education Intervention “Caregivers Like Me?" Am J Hosp Palliat Care. 2017 Jan 1:1049909117709550.
- Cruz-Oliver DM, Malmstrom TK, Roegner M, Gwen Y. Evaluation of a video-based seminar to raise healthcare professionals’ awareness of culturally sensitive end-of-life (EOL) care. J Pain Symptom Manage. 2017 Jul 14.