What is cancer caregiving, and why conduct cancer caregiving research?
Cancer caregiving is supportive care that may be provided to individuals with a cancer diagnosis. Examples include a family caregiver, a respite caregiver, and a private duty caregiver, among others. Informal caregivers are individuals who provide care to a loved one, and this care is typically uncompensated, takes place at home, and involves significant amounts of time and energy. This support is often physically, emotionally, socially, or financially demanding. Caregivers provide essential support including the following types of care:
- watching for treatment side effects
- helping to manage pain, nausea, and fatigue
- assisting with treatment decision-making
- assisting with care-related financial management
- managing the timing or administration of medication
- changing bandages
Research suggests that caregivers are increasingly relied on to provide such care, as more care is occurring in outpatient and community-based centers, rather than in tertiary or in-patient centers.
Caregivers are often incorporated as partners in care. Research also suggests that caregivers often experience their own physical or psychosocial challenges in providing such care. Further evidence suggests that the physical and psychosocial health outcomes of cancer patients and their caregivers are often related and can have lasting, long-term health impacts for both individuals.
NCI recognizes the increasing burden on informal cancer caregivers, and that this burden is affecting more individuals as the number of people living with cancer grows. As a result, NCI continues to support research on informal cancer caregiving to improve outcomes for both caregivers and patients.
NCI’s Commitment to Advancing Cancer Caregiving Research
NCI supports activities and initiatives to advance the science of informal cancer caregiving. These include: identifying research priorities, notice of funding opportunities, the development of workshops and reports, identifying resources, and webinars. These efforts aim 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
- facilitate the creation of tools to better integrate cancer caregivers into healthcare delivery
NCI’s Support of Cancer Caregiving Research
2015 NCI Informal Cancer Caregiving Workshop and Strategies to Address Gaps:
In 2015, NCI hosted a workshop to further identify research priorities in informal cancer caregiving. The workshop brought together staff at the NCI, NINR, and members of the public and resulted in a publication describing the discussion and needed research. As a result of this workshop, NCI sought to advance the science of informal cancer caregiving in four areas:
- Improving the estimation of the prevalence and burden of informal cancer caregiving
- Advancing the development of interventions designed to improve outcomes of cancer patients, caregivers, and patient-caregiver dyads
- Generating and testing strategies for integrating caregivers into formal healthcare settings
- Promote the use of technology to support informal cancer caregivers
In response to the 2015 workshop, NCI developed a notice of funding opportunity (NOFO): Intervening with Cancer Caregivers to Improve Patient Health Outcomes and Optimize Health Care Utilization PAR-19-352 (R01), PAR-19-355 (R21), to support interventions for cancer caregivers. This NOFO resulted in several awards.
2017 Small Business Innovation Research (SBIR) Funded Projects
- 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:
- BrightOutcome Inc. to develop an electronic caregiver support system aimed at addressing caregiving needs and caregiver personal needs;
- 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
- 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.
2022 Informal Cancer Caregiving Webinar Series: Highlights of NCI-Funded Research
In 2022, NCI held a 5-part webinar series featuring 13 grantees funded by the Caregiving NOFO prior to 2022, to describe their research. Discussions included study accomplishments, challenges, and future needs for cancer caregiving research. Each session included dedicated presentations from each of these 13 funded grantees.
The webinar series concluded with an NCI-led discussion of themes among the funded grants and key opportunities for future informal cancer caregiving research. Gaps identified during this discussion included:
- Prevalence and burden of informal cancer caregiving
- Integrating caregivers into care delivery settings
- Studies that address health disparities
- Inclusion of underrepresented populations, such as rural cancer patients, rare cancer types, and under-researched populations
To view recordings of these webinars, visit the Cancer Caregiving Webinar Series webpage.
Funding Opportunities for Caregiving Research
Cancer Control NOFOs
|Title||Announcement #||Expiration Date|
|NCI Small Grants Program for Cancer Research||PAR-20-052 (R03)||January 8, 2023|
|Dyadic Interpersonal Processes and Biopsychosocial Outcomes||PAR-21-280/1 (R01)||May 8, 2023|
|NIH Research Project Grant (CT Not Allowed)||PA-20-185 (R01)||May 8, 2023|
|Research to Understand and Address the Survivorship Needs of Individuals Living with Advanced Cancer (CT Optional)||RFA-CA-22-027 (R01)||September 30, 2023|
|Cancer Prevention and Control Clinical Trials Grants Program (Clinical Trials (CT) Required)||PAR-21-035 (R01)||January 8, 2024|
|Modular R01s in Cancer Control and Population Sciences (CT Optional)||PAR-21-190 (R01)||March 8, 2024|
|Exploratory Grants in Cancer Control (CT Optional)||PAR-21-341 (R21)||October 9, 2024|
|Cancer Prevention and Control Clinical Trials Planning Grant Program (CT Optional)||PAR-22-173 (R34)||September 8, 2025|
|Title||Announcement #||Expiration Date|
|Palliative Care Needs of Individuals with Rare Advanced Diseases and Their Family Caregivers||
|January 8, 2020|
|Intervening with Cancer Caregivers to Improve Patient Health Outcomes and Optimize Health Care Utilization||
|September 8, 2022|
Reports and Workshops
- Health Information National Trends Survey, HINTS 5 Briefs and Papers
- Health Information Seeking Among Caregivers (PDF) (PDF)
- Mollica, M. A., Smith, A. W., & Kent, E. E. (2020). Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. population-based study. Patient education and counseling, 103(3), 626–634. https://www.sciencedirect.com/science/article/abs/pii/S0738399119304720?via%3Dihub [View Abstract]
- Kent, E. E., Mollica, M. A., Dionne-Odom, J. N., Ferrer, R. A., Jensen, R. E., Ornstein, K. A., & Smith, A. W. (2020). Effect of instrumental support on distress among family caregivers: Findings from a nationally representative study. Palliative & supportive care, 18(5), 519–527. https://www.cambridge.org/core/journals/palliative-and-supportive-care/article/abs/effect-of-instrumental-support-on-distress-among-family-caregivers-findings-from-a-nationally-representative-study/4C82E6FEA20B6245DC73B2E413798EA2 [View Abstract]
- Mollica, M. A., & Kent, E. E. (2021). Caregiver Education and Training: Learning Preferences of Informal Caregivers of Adult Care Recipients. Clinical journal of oncology nursing, 25(4), 483–487. https://www.ons.org/cjon/25/4/caregiver-education-and-training-learning-preferences-informal-caregivers-adult-care [View Abstract]
- The Science of Caregiving: Bringing Voices Together, Aug 7-8, 2017
- NCI Cancer Currents Blog, Sept 2016. Many Cancer Caregivers Report Feeling Unprepared for Caregiving Challenges
- 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) (PDF)
- NCI and NINR-sponsored meeting, May 2015. Caring for Caregivers and Patients: Revisiting the Research and Clinical Priorities for Informal Cancer Caregiving