Caregiver Core

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.

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

Related Organizations:

• International Palliative Care Family-Carer Research Collaboration

Caregiver Instruments:

• Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners
• Family Caregiver Instruments and Assessment Tools
• Additional instrument resources can be accessed on the PCRC Measurement Core page by clicking here.

Sample Proposals:

• P01 Family Caregivers of Patients with Lung Cancer

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-life Care. 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.