There are nearly 2.3 million adults in North Carolina who are family caregivers – this is 27% of all adults in our state. While the average age is 49, caregivers range from youth under 18 to seniors over 70. Of these people in our state, 92% care for an adult and 16% care for a child with complex medical needs. Six in ten NC family caregivers work while caregiving, and three in ten caregivers live in households with income under $50,000 (Caregiving in the US 2025).
While some support systems are expanding, the demand for family care is growing faster. Caregivers and families have many complex needs. Existing programs and studies primarily focus on care for children, older adults, and people with specific diseases and disabilities. Our goal is to work together to identify common caregiving challenges and questions across the life course and to build a robust partnership that accelerates our ability to support policies and interventions that improve well-being.
Launched in January 2026, the NC Caregiving Research Network’s goal is to expand data, research, policy and evidence-informed, person-centered practices to support family caregivers across the life course. Our leading value is centering the lived experience of caregivers representing diverse identities and perspectives with a particular focus on communities that have been marginalized. The network is open to researchers from colleges and universities across North Carolina as well as to caregiver coalitions, policy makers, and community-based caregiving organizations.
To join the NC Caregiving Research Network and receive updates about upcoming events, join our listserv here. There is no cost to join the network. If you have questions or would like to join by email, contact JordanInstitute@unc.edu.
Our purpose is to expand data, research, policy, and evidence-informed, person-centered practices to support family caregivers across the life course. For us research is broadly defined to include evaluation, implementation and policy with a focus on caregiving over the life course.
We held our inaugural research network meeting on January 8, 2026. A summary of that meeting is available here. This was followed by a meeting on March 4, 2026 where we collectively set our purpose, objectives and activities for the next year. A summary of that meeting is available here.
We have set four objectives for our work together:
Objective 1: Build connection and support collaboration across caregiver researchers in NC to increase academic productivity and grant funding and support quality science and pipeline development.
Objective 2: Disseminate research findings to increase the speed of moving research results into practice
Objective 3: Foster partnerships between researchers and caregivers to assure proposed studies are designed to meet the needs of the people they are intending to serve.
Objective 4: Develop a life course perspective to caregiving research
We hope to create quick and easy access to key resources and partners working on caregiving and caregiving research in North Carolina and beyond. This is just a starter list. Please email jordaninstitute@unc.edu or Sarah_Verbiest@med.unc.edu to share what needs to be added.
- Caregiving Collaboratory is a site coordinated by Dr. Erin Kent that brings together faculty, students, trainees, and other colleagues at UNC to share ideas and opportunities related to caregiving research. We are working closely with Dr. Kent to amplify this work.
- The North Carolina Serious Illness Coalition engages a broad range of stakeholders, including providers, consumers, policy advocates, industries, and others, to accelerate the solutions needed to achieve the desired vision for serious illness care.
- The National Alliance for Caregiving – Research Care Network is working to pull together researchers from across the country to work together. We envision that our new NC network working closely with this group as we go forward.
- The College of Nursing at Utah Health at the University of Utah has a strong family caregiving collaborative. Their work includes a free speaker series with caregiver researchers.
- Fact Sheets for Family Caregivers | ARCH National Respite Network & Resource Center
- Family Caregiver Alliance provides services to family caregivers of adults with physical and cognitive impairments, such as Parkinson’s, stroke, Alzheimer’s, and other types of dementia.
NORTH CAROLINA WEBINAR SERIES
Upcoming NC Caregiver Research Network Webinar Series
We’re excited to announce our upcoming webinar series! We have an incredible lineup of speakers who will explore timely and important topics related to caregiving, research, and the experiences of caregivers and families.
We hope you’ll join us for these engaging conversations and opportunities to learn from experts in the field.
Register for each session using the links below:
| September 16th, 12:00 – 1:00 pm EST – Network Meeting and Connections Registration: https://unc.zoom.us/meeting/register/ltJZyligTS6NKp-43XHR-g |
| October 14, 2027, 12:00 – 1:00 pm EST – How to Build a Community Advisory Board Tips and Lessons Learned from the Hospital-to-Home (H2H) Transitional Care Study for Children and Youth with Special Health Care Needs (CYSHCN) Community Advisory Board Speakers: Neal deJong, MD, MPH, Laura Kmitch, David Y. Ming, M.D. Registration: https://unc.zoom.us/meeting/register/A3aGh_OQSK2466SiB19fSw |
| November 12, 2026, 12:00 – 1:00 pm EST – Cancer and Caregiving Research: Cancer caregiving studies Speakers: Chandylen Nightingale, PhD, MPH, Tess Thompson, PhD Registration: https://unc.zoom.us/meeting/register/Ls-QPlfhS7CayQUQL4effw |
| January 7, 2027, 12:00 – 1:00 pm EST – Palliative Care and Caregiving Research: Caregiving from the Transitional Palliative Care trial Speakers: Brystana Kaufman, PhD, MSPH, Allison M. Gustavson, Joan M. Griffin Ph.D. Registration: https://unc.zoom.us/meeting/register/6kpmtA0RRqqjEojRxtjitw |
Previous webinars:
We launched our webinar series on May 13th learning more about Dr. Erin Kent and Dr. Megan Shepherd-Banigan’s research. You can access the webinar recording here. Here is a link to Erin’s slides. Here is a link to Megan’s slides.
Our next webinar was held on June 10th featuring Dr. Betsy Olson and Dr. Christine Lathren. You can access the webinar recording here.
Our North Carolina fall series will kick off in September 2027. Details to follow soon.
NOTH CAROLINA CONFERENCES AND EVENTS
The UNC School of Social Work’s 2027 Legacy Series event will focus on Caregiving. The event will be held in person in Chapel Hill on March 18, 2027 from 8:30am to 4pm. Details will follow.
NATIONAL SERIES
The Collaborative on Caregiving Science Across the Lifecourse (CSAL) brings together the Family Caregiving Collaborative at the University of Utah, Johns Hopkins School of Nursing’s Center for Equity in Aging, and beginning in 2026, the Jordan Institute for Families at the University of North Carolina. CSAL is to foster high quality and innovative research on caregiving across the lifecourse by promoting new research partnerships and helping to train the next generation of caregiving researchers. Our current main activities are monthly speaker series with leading scholars in caregiving science. Faculty and pre and post-doctoral who are interested in caregiving science are welcome to participate.

North Carolina Serious Illness Coalition’s
5th Annual Joining Our Voices:
Envisioning the Future of Serious Illness Care
Virtual SymposiumOctober 27-29, 2026
12:00 pm – 1:30 pm (ET) Each Day
Registration Now Open!
Click Here to Register
Symposium Schedule
10/27: Navigating VSED & Medical Aid in Dying:
Understanding Choices, Laws, and Compassionate Care
Rachel Lipner, Chief Medical Officer, Transitions LifeCare
Ed Tiryakian, Executive Director, Dying Right NC
10/28: Exploring Ethics & Advance Care Planning:
Moving Beyond the Paperwork
Gabriella Agostaro, Director, Clinical Ethics, Novant Health
10/29: Empowering Family Caregivers:
Strategies for Better Care and Outcomes
Nicole Clagett, Director of Community Development & Caregiver Support
Cooper Linton, Associate Vice-President
Duke HomeCare & Hospice
For more information about the NCSI Coalition: https://www.ncsicoalition.org/
NATIONAL CONFERENCES AND EVENTS
A number of network members will be attending the 4th Biennial Conference on Caregiving Research – Reaching New Heights: Elevating Caregiving Research, Policy, and Practice in Salt Lake City, Utah from September 23-25, 2026. Here is a link to information about the conference in case you’d like to join. Of note, North Carolina will be hosting the 2028 conference.
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