Informal or family caregivers are individuals who provide care to a loved one that is typically uncompensated, takes place at home, involves significant amounts of time and energy, and requires the performance of tasks that may be physically, emotionally, socially, or financially demanding. For those caring for someone with cancer, these tasks can include watching for treatment side effects; helping to manage pain, nausea, and fatigue; assisting with treatment decision-making; administering medication; and changing bandages. However, caregivers are often underprepared to perform the many tasks required of them. In addition, the physical and psychosocial health outcomes of cancer patients and their caregivers are often related and can have lasting and long-term health impacts for both patients and caregivers. Despite these challenges, the healthcare system is providing more and more cancer care in outpatient and community-based centers rather than in tertiary or in-patient centers, which increases the day-to-day demands on informal caregivers.
NCI is conducting a number of activities in service of building a research program in informal cancer caregiving. This work is expected to improve the characterization of informal caregivers and the care they manage; accelerate the development and standardization of measures and metrics for cancer caregiving; promote development and testing of interventions aimed at improving outcomes for patients and caregivers; and facilitate the creation of tools to better integrate cancer caregivers into healthcare delivery.
Funding Opportunity Announcements
- Palliative Care Needs of Individuals with Rare Advanced Diseases and Their Family Caregivers
PA-18-149 (R01), PA-18-167 (R21)
- Intervening with Cancer Caregivers to Improve Patient Health Outcomes and Optimize Health Care Utilization
PAR-19-352 (R01), PAR-19-355 (R21)
Related Reports and Activities
- The latest versions of the Health Information National Trends Survey, HINTS 5 Cycles 1 and 2, now contain a module on caregiving. Please see HINTS Brief Number 40 on Health Information Seeking Among Caregivers (PDF).
- Small Business Innovation Research (SBIR) Projects on Cancer Caregiving: In late 2017, three contracts were awarded under an SBIR topic put forward by HDRP, entitled, Connecting Cancer Caregivers to Care Teams: Digital Platforms to Support Informal Cancer Caregiving: (1) BrightOutcome Inc. to develop an electronic caregiver support system aimed at addressing caregiving needs and caregiver personal needs; (2) Care Progress LLC to create a smart phone application that will allow caregivers to access patient electronic health record information and communicate with clinicians; and (3) Medable Inc to develop and implement a digital application to assist informal caregivers with developing an interactive care plan for home-based care for cancer survivors. More information about the SBIR program can be found here.
- NCI Cancer Currents Blog, Sept 2016. Many Cancer Caregivers Report Feeling Unprepared for Caregiving Challenges
- National Academies of Medicine, Sept 2016. Families Caring for an Aging America
- Kent EE, Rowland JH, Northouse L, Litzelman K, Chou WY, Shelburne N, Timura C, O'Mara A, Huss K. Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving. Cancer 2016 Jul 1;122(13):1987-95. Review. [View Abstract]
- National Alliance for Caregiving, June 2016. Cancer Caregiving in the U.S: an Intense, Episodic and Challenging Care Experience (PDF)
- NCI and NINR-sponsored meeting, May 2015. Caring for Caregivers and Patients: Revisiting the Research and Clinical Priorities for Informal Cancer Caregiving