CAREGIVING YOUTH RESEARCH COLLABORATIVE
The CYRC is a U.S.-focused initiative created to generate interdisciplinary collaboration between researchers and practitioners who are dedicated to advancing knowledge and understanding of Caregiving Youth (also known as young carers) and their families.
Founded in 2015 through a collaboration between the AACY Caregiving Youth Institute and researchers at the University of North Carolina at Chapel Hill, today CYRC brings together academics and other researchers and professionals from universities and organizations across the United States and Canada. Members work to identify research and policy priorities, create vehicles to inform and enhance knowledge among youth professionals, and cultivate partnerships to improve the outlook for Caregiving Youth and their families.
Explore the profiles of CYRC members and discover how their specific expertise aligns with your interests. Together, we can make a difference.
If you are interested in learning more and/or would like to become a member of the CYRC, please contact CYRC co-chairs Dr. Elizabeth Olson, Interim Director of the Institute for the Arts and Humanities and Professor of Geography, Environment, and Global Studies at the University of North Carolina at Chapel Hill, or Dr. Connie Siskowski, President and Founder of AACY.
Emma Armstrong-Carter, PhD
I am a developmental psychologist, and Assistant Professor at Tufts University in the Eliot-Pearson Department of Child Study and Human Development.
I research children’s and adolescents’ experiences caregiving for family members – and how these experiences shape their wellbeing and school success.
To do this work, I partner with schools and educational agencies. Our work is directly informing the design of school- and government-based policies that support children’s wellbeing and education.
I earned my Ph.D from Stanford University, where I was a fellow in the Stanford Data Science Initiative and Center for Education Policy Analysis. My postdoctoral training was at the University of California, Berkeley and the University of North Carolina at Chapel Hill, funded by the National Science Foundation.
Website Link:
https://www.armstrong-carter.com/
Emma Armstrong-Carter, PhD
Tufts University, Boston, MA
Brianna Bliss, PsyD
Brianna Bliss, PsyD, is a postdoctoral fellow at Montefiore Medical Center’s Pediatric Behavioral Health Integration Program (BHIP). She earned her doctorate in Clinical Psychology from the Philadelphia College of Osteopathic Medicine. Her graduate research focused on youth caregivers, pediatric health care providers’ perceptions about caregiving youth, and barriers to identifying youth in medical settings. She completed her pre-doctoral internship in health psychology at Cooper University Hospital in Camden, NJ. She is trained as a HealthySteps Specialist, and has clinical experience in pediatric primary care settings, as well as adult family medicine, obstetrics and gynecology clinics, inpatient consultation liaison service, and outpatient psychology. She is passionate about working within integrated care to address psychological and behavioral concerns for children across the lifespan.
Website Link: https://digitalcommons.pcom.edu/psychology_dissertations/576/
Brianna Bliss, PsyD
Philadelphia College of Osteopathic Medicine, Philadelphia, PA
Leiha Edmonds
Leiha Edmonds is an assistant professor of Geography at Indiana University at Bloomington.
Her research focuses on geographies of urban aging with attention to caregiving, age-friendly policies, and housing stability. She received a PhD in the Department of Geography and Environment at the University of North Carolina at Chapel Hill and holds a Master of Urban Planning and Policy from the University of Illinois at Chicago.
Leiha Edmonds
Assistant Professor of Geography, Indiana University Bloomington
Sharon Hamill, PhD
Sharon Hamill, Ph.D., psychology professor at CSU San Marcos, is recognized for her leadership in palliative care education and innovative approach to raising awareness about completing advance directives for health care.
As a founding faculty director of the CSU Shiley Institute for Palliative Care at CSUSM, Hamill created and continues to direct the What Gives Your Life Meaning (WGYLM®) annual campaign. Held over the past five years, the campaign raises awareness for students, staff and faculty to advocate for their own health care, including planning for advanced directives. The campaign features guest speakers, a resource fair, films and discussion panels, and a pledge drive to increase the number of students completing advance directives.
WGYLM® allows students to take leadership in educating the community. For example, students developed a website to support children and young adults who serve as family caregivers and lead workshops on palliative care. Other projects include the St. Francis Soup Kitchen, at which students provide weekly health education to low-income and homeless diners, and the Youth Resiliency Project in which students train high school peer counselors and young caregivers in resiliency skills.
WGYLM® is now trademarked and is serving as a model for palliative care education for other institutions, including the University of California, San Diego hospital system. The campaign has been picked up by PBS, and other CSU campuses have also used Hamill’s materials as a model for palliative care instruction and awareness.
“Dr. Hamill’s genuine interest for the students and community on our campus truly shows through her ways of empathizing with the campus population,” says Ivette Villagomez, student assistant at the CSU Shiley Institute for Palliative Care at CSUSM.
Sharon Hamill, PhD
California State University, San Marcos, CA
Andrea Kalvesmaki
Dr. Hendricks is an assistant professor at the University of Nebraska Medical Center (UNMC) College of Nursing. Dr. Hendricks received her bachelor’s degree in nursing from the University of Alabama at Birmingham (UAB) in 2018. Throughout her PhD program, Dr. Hendricks was a Robert Wood Johnson Foundation Future of Nursing Scholar working on her dissertation study: An Exploration of the Manifestation of Parentification Among Young Carers of a Parent with Huntington’s Disease. She received her PhD in Nursing from UAB in 2021 and completed her postdoctoral training at UNMC from 2021-2023.
Dr. Hendricks has worked on studies primarily focused on caregiving, cancer survivorship, and community engagement. She is building a program of research exploring the experiences of young carers (children aged <18) in specific disease contexts, such as cancer, with the goal of improving awareness and support for this often-overlooked group of caregivers. Her current work focuses on exploring the experiences, outcomes, and unmet needs of young carers in the context of cancer to provide a foundation for future intervention development.
Research
Research Interests
Young Carers (children <18 years old acting as caregivers)
Parentification
Family Caregiving
Survivorship
Psychosocial Oncology
Website Link:
https://www.unmc.edu/nursing/faculty/profiles/bhendricks/index.html
Bailey Hendricks, PhD, RN
University of Nebraska Medical Center (UNMC) | College of Nursing – Omaha Division
Hannah Hutler-Boyd
Hannah holds an M.S. in Camp Administration and Leadership from Touro University and a B.S. in Youth Programming and Camp Management from University of Wisconsin – Stevens Point. Hannah brings a deep understanding of the camping industry as well as recreation and enrichment programming to the team. She serves as the subject matter expert on camp, recreation, and child and youth programming and advocates on behalf of military-connected children and their families.
Hannah Hutler-Boyd
Caregiving.com
Melinda S. Kavanaugh, PhD, MSW, LCSW
Dr. Melinda S. Kavanaugh holds a PhD, MSW and an LCSW with years of clinical experience across health care settings and populations, including neurological disorders such as Huntington’s disease, Amyotrophic lateral sclerosis (ALS), Parkinson’s disease and Alzheimer’s disease. Based on her clinical experience, Dr. Kavanaugh’s translational research focuses on an isolated population of caregivers – children and teens (“youth caregivers/young carers”).
Dr. Kavanaugh conducts applied research in the United States and South Africa, working with families affected by neurological disorders including ALS, Huntington’s Disease, and Alzheimer’s disease. Results of her national study of ALS caregiving youth in the U.S. was used to develop national educational and caregiving materials for families with ALS. In the Milwaukee community, Dr. Kavanaugh received an NIH R21 award to conduct community-based research on the early warning signs and crisis points caregivers face in the Latino and African American community in dealing with Alzheimer’s disease. The NIH project and another funded by the Administration on Community Living (ACL) are a collaboration with the United Community Center, Alzheimer’s association and the Medical College of Wisconsin, addressing family dementia caregivers and cultural aspects of caregiving.
Melinda S. Kavanaugh, PhD, MSW, LCSW
University of Wisconsin, Milwaukee, WI
Andrea Kalvesmaki
Andrea Kalvesmaki, PhD, is an Advanced Informatics Health Fellow at the Salt Lake Veteran Affairs Medical Center and Research Associate, Division of Epidemiology, University of Utah School of Medicine. She is a medical anthropologist with extensive cross-disciplinary and mixed-method research experience. Dr. Kalvesmaki has a strong background in translational and mixed method research, and works to align research methods in order to address policy and practice for people in need. Dr. Kalvesmaki manages multiple projects examining short and long term outcomes for Veterans and their families. She emphasizes how listening to and understanding the lived experiences of others, the stories behind data, drive us to improve access and equity in health, education, and other interacting and connected social systems. Dr. Kalvesmaki’s main research interests are: (1) Experiences of youth and young adult caregivers of Veterans and (2) the parenting experiences and needs of Veterans. Additionally, her mentors are Drs. Mary Jo Pugh, Brian Sauer, and Makoto Jones.
Education
PhD; Education, Leadership, and Policy
MS, Medical Anthropology
BA, Psychology
Website Link: https://framilyveteranhealth.stanford.edu/people/andrea-kalvesmaki
Andrea Kalvesmaki, PhD
University of Utah Health
Salt Lake City, UT
Feylyn Lewis, PhD
Young Caregiver Researcher and Consultant | Assistant Dean of Student Affairs, Vanderbilt University School of Nursing
Dr. Lewis’s Story: A native of Nashville, Tennessee and a Vanderbilt University alumna, I grew up as a young caregiver for my disabled mother. Caring for her since age 11, I was isolated, scared, and like many other young caregivers in the United States, I did not know that I was a “young caregiver”. I was simply a loving daughter, helping my mother who needed me. My experience led me to want to change the world for other children with caring responsibilities.
In 2013, I moved from the United States to the United Kingdom to study under the world-renowned young carers researcher, Professor Saul Becker. My doctoral research at the University of Birmingham focused on the identity development of young adult caregivers living in the United Kingdom and United States; it is also the largest qualitative research project involving young adult caregivers undertaken in the United States and the only UK-USA comparative research project involving young caregivers.
I completed a post-doctoral research fellowship at the University of Sussex and during spring 2021, I served as the Hunt Research Director at the National Alliance for Caregiving.
In my latest work with young carers, I co-led the United Kingdom research activities of a nearly €4 million European Commission funded research project to investigate the mental health well-being of adolescent young caregivers in the United Kingdom, Switzerland, Slovenia, Italy, the Netherlands, and Sweden.
Prior to my research career, I was a nationally certified mental health counselor (USA). I presently sit on the Healthcare Delivery and Disparities Research Advisory Panel of PCORI, the board of trustees for the Carers Centre for Brighton and Hove, the National Advisory Council for the American Association of Caregiving Youth, and numerous international research advisory committees.
I now serve as the Assistant Dean of Student Affairs at Vanderbilt University School of Nursing.
My research with young caregivers has taken me around the world, presenting in places as diverse as Miami, Zurich, and Ljubljana, and in front of audiences as varied as schoolchildren in Nashville to academics in Sydney, Australia and policy makers in the European Parliament in Brussels.
I currently reside in Nashville where I continue to provide care for my mother.
Personal Website:
drfeylynlewis.com
TEDx Vanderbilt
Children, Society’s Safety Net: A Youth Caregiving Story | Feylyn Lewis | TEDx Vanderbilt University
Feylyn Lewis, PhD
Vanderbilt University School of Nursing, Nashville, TN
Julia Belkowitz, M.D., M.P.H.
Dr. Belkowitz received her bachelor’s degree in psychology at the University of Michigan and her medical degree at Jefferson Medical College. She completed her pediatric internship and residency at Jackson Memorial Hospital, and is currently an Associate Professor of Pediatrics at the University of Miami Miller School of Medicine (UMMSM). At UMMSM, Dr. Belkowitz serves as the Assistant Dean for Student Affairs. Her other responsibilities also include serving as an advisor for students completing their public health capstone experiences. Dr. Belkowitz works to raise awareness about the issue of caregiving youth through mentorship of trainees, advocacy, and research, and is an advocate for child injury prevention.
Website Link:
https://med.miami.edu/faculty/julia-belkowitz-md-mph
Julia Belkowitz, MD, MPH
University of Miami, Miller School of Medicine, Miami, FL
Katherine Miller, PhD
Katherine Miller, PhD, studies how public policies impact the long-term care workforce and the people with complex medical needs for whom they care.
Website Link: https://publichealth.jhu.edu/faculty/4587/katherine-miller
Katherine Miller, PhD
Assistant Professor at Johns Hopkins Bloomberg School of Public Health
Elizabeth Olson, PhD
University of North Carolina, Chapel Hill, NC
I am Interim Director of the Institute for the Arts and Humanities and a Professor of Geography and the Environment in the College of Arts and Sciences at the University of North Carolina at Chapel Hill. I’m also a Professor of Global Studies with a focus on methods and theory. I have held multiple leadership positions at UNC–Chapel Hill, most recently as department Chairperson, and at my previous position in the School of GeoSciences at the University of Edinburgh. I’m co-founder and co-director of the Caregiving Youth Research Collaborative, a national consortium of researchers and scholars in the U.S., and currently serve as co-chair of the AAG Climate Action Task Force.
I research themes related to care, ethics, and young people, sometimes separately, sometimes in relation to each other. My scholarship is produced in collaboration and through transformative partnerships with practitioners, artists, and other scholars, often co-developing methodological innovations to engage diverse communities. I have been funded by the National Science Foundation, PCORI, ESRC-AHRC (UK), EU Horizons, and countless inspiring centers and grants, including the Institute for Arts and Humanities at UNC-CH. See my research page and CV for more details.
I accept graduate students who work on topics related to care and caregiving, especially non-normative care relationships and changing care economies; critical health geographies; studies in ableism, DisCrit, and other intersectional critical disability approaches; geographical approaches to normative ethics; childhood and youth geographies; and creative/mixed methodology.
Website Link: https://global.unc.edu/news-story/elizabeth-olson-builds-support-for-youth-caregivers/
Elizabeth Olson, PhD
Interim Director, Institute for the Arts and Humanities; Professor, Department of Geography and Environment; Professor, Global Studies, College of Arts and Sciences, UNC–Chapel Hill
Maggie Ornstein, PhD
Dr. Maggie Ornstein teaches environmental psychology, health advocacy, family caregiving, food studies and public health at Sarah Lawrence College. During 15 years in the non-profit sector and nearly 3 decades as a family caregiver and health care advocate, Dr. Ornstein’s experience encompasses individual and public policy advocacy related to the delivery of long-term services and supports and end-of-life care. She has expertise in family caregiving, long-term care systems, policy and service delivery, health equity and the social determinants of health and has served on advisory boards of the New York State Office For the Aging (NYSOFA) Family Caregiver Council, the New York State Caregiving and Respite Coalition, the Caregiving Youth Research Collaborative, and the American Association of Caregiving Youth. A public health geographer, her research focuses on the experiences of family caregivers, specifically related to their interactions with the formal health-care system through the utilization of home and community-based services. Special interests include brain injury and youth caregiving. She spends her free time organizing with the NY Caring Majority for a more just long-term care system in NYS.
She holds a doctorate from the Graduate Center, City University of New York and master’s degrees from Teachers College, Columbia University and Hunter College.
In addition, she has certificates or in-depth training in the following areas:
Johns Hopkins University COVID-19 Contact Tracing Certification
Emerge America National Candidate Boot Camp
Design Psychology
Chair Yoga Certification
Certified Brain Injury Specialist (CBIS)
End of Life Doula Training
Home Funeral Training NYC
Master Composter Certification
Website Link: https://womensmediacenter.com/shesource/expert/dr-maggie-ornstein-phd-mph-ma
Maggie Ornstein, PhD
Sarah Lawrence College, Bronxville, NY
Kimberly Peacock
Instructor/Research
Kimberly Peacock is an education researcher instructor in the Department of Medicine, Division of General and Hospital Medicine at UT Health San Antonio. She received her training in educational leadership at the University of Southern California in Los Angeles. In 2016, Dr. Peacock accepted a position at UT Health San Antonio to assist in the development of a Military and Veteran Caregiver Portfolio (MVCP). The purpose of the MVCP is to conduct research to identify and understand the impact of caregiving on the health and wellbeing of military caregivers. Dr. Peacock has been involved with military research concerning service members and their families at a Military Treatment Facility for over 12 years. Her area of expertise is in the development of educational/training material and curriculum development. Dr. Peacock has dedicated her career to identifying and developing interventions focusing on maintaining the health and wellness of service members and their families. Dr. Peacock’s latest work includes co-author on the book entitled The Caregivers Companion: Self-Care for Health in Mind, Body & Spirit (2016) and co-authoring the publication, A Family’s Affair: Caring for Veterans with Penetrating Traumatic Brain Injury (2017). She has conducted numerous interventional studies and utilizes her knowledge of curriculum development to create projects focusing on quality of life for military families. Dr. Peacock is a Gold-Star Wife, former military child dependent, and a proud ‘Marine Mom.’
Website Link: https://directory.uthscsa.edu/academics/profile/peacockk
Kimberly Peacock, EdD
University of Texas Health Science Center, San Antonio, TX
Marianne Saragosa, PhD, RN
Dr. Marianne Saragosa is a Registered Nurse and a Health Services Researcher, obtaining her PhD from the Institute of Health Policy, Management and Evaluation, University of Toronto. Dr. Saragosa is currently the Inaugural Embedded Nurse Scientist at the Science of Care Institute and Centre for Nursing Excellence at Sinai Health.
She is leading a research program focused on dementia care and aging-in-place of vulnerable older adults and building capacity and opportunity in practice-based research. Dr. Saragosa is using qualitative approaches to conduct applied health research, including patient journey mapping, eco-mapping co-design and realist evaluations. Dr. Saragosa held a Canadian Institutes for Health Research (CIHR) Health Systems Impact Fellowship in 2021/22 and was a postdoctoral fellow (2022-2024) with Dr. Michelle Nelson at the Science of Care Institute at Sinai Health. In this role, she received a 2-year postdoctoral award from the Alzheimer Society Research Program to develop a dementia care pathway using co-design methods. She also received a CIHR Planning and Dissemination Grant to explore equity-informed considerations for technology supporting aging-in-place. Dr. Saragosa is positioned in her embedded role to foster strong partnerships with the clinical programs and staff in the Sinai Health and health system partners to ensure that scientific knowledge is used to promote compassionate care and healthcare system improvement.
Website Link:
https://ihpme.utoronto.ca/faculty-profile/saragosa-marianne/
Marianne Saragosa , PhD, RN
University of Toronto, Toronto, Ontario, Canada
Connie Siskowski, RN, Ph.D., Founder, and President of AACY
Connie Siskowski, RN, Ph.D., Founder, and President of AACY, is an alumna of Johns Hopkins University, New York University, and Lynn University (Ph.D. in 2004). She was inspired to establish the American Association for Caregiving Youth after caregiving for her grandfather at 11 years old and then went on through her academic research to discover that family health situations often have detrimental academic effects on children. She is determined to lessen caregiver isolation by honoring their struggles and advocating for U.S. youth who may be considering dropping out of school or life due to having a family member they must care for. Through her work with AACY, she is dedicated to diminishing Caregiving Youth suffering and assisting them with the challenges they face daily. Her mission is for all caregiving youth to be acknowledged and respected so no child must drop out of school or life due to out-of-turn family caregiving responsibilities.
In June 2009, Dr. Siskowski was awarded a lifetime Ashoka Fellowship. In October 2009, she became one of 10 Purpose Prize winners, a national endeavor honoring persons over 60 who initiated an innovative solution for social change. In September 2010, The Johns Hopkins University Alumni Association presented her with The Distinguished Alumna Award. In 2011 AACY won the Palm Beach County Medical Society’s Heroes in Medicine Award for Community Outreach; later that year, Bethesda Hospital Foundation named Dr. Siskowski a Woman of Grace. In May 2012, she was named a CNN Hero, and in September 2012 was named one of the Top Ten CNN Heroes for 2012. She serves on the RAISE Family Caregiving Council of Health and Human Services faculty, among other local and national boards and committees.
Dr. Connie, as she is fondly called, has also published many research papers and interviewed with hundreds of local and national publications.
Connie Siskowski, RN, Ph.D.
Founder, and President of American Association of Caregiving Youth
Regina Shih
Professor
Faculty, Epidemiology
Jointly Appointed, Health Policy and Management
Regina Shih’s main research areas are mental health, youth development, aging, dementia, and caregiving. Her skills include policy analysis, multi-level analysis of large datasets, study design, strategic planning, and program evaluation. Her research interests are diverse and center community-engaged approaches and policy-relevant outcomes. With her collaborators, she evaluated the associations between alcohol and cannabis outlet density and youth substance use, developed medication reconciliation measures for post-acute care settings across the US under the Improving Medicare Post-Acute Care Transformation Act, created a national database of neighborhood measures to examine contextual influences on dementia risk, outlined policy recommendations for improving sleep in the U.S. military; published a policy blueprint for dementia long-term services and supports that resulted in Congressional testimony; tested a multi-site RCT to prevent substance use in middle schools; developed a toolkit for local public health and aging departments to prepare older adults for climate change-related events, and conducted a risk assessment of environmental health risks for the U.A.E.’s environmental health action plan. She is grateful to the sponsors that have funded her work, including private foundations such as John A. Hartford Foundation and California Health Care Foundation; local governments; and federal agencies such as CDC, NIA, NIMHD, NIAAA, NHLBI, NIOSH, and the Department of Defense.
Dr. Shih was previously a Program Director, overseeing RAND’s portfolio of public health, social services, and prevention research. Prior to her 16-year tenure at RAND, she was an IRTA Post-doctoral fellow with the NICHD Division of Epidemiology, Statistics, and Prevention Research. She currently serves as an adjunct researcher at RAND and a board member of the National Alliance for Caregiving, with secondary appointments in Emory Woodruff School of Nursing and Emory School of Medicine.
Website Link: https://sph.emory.edu/faculty/profile/index.php?FID=regina-shih-13123
Regina Shih
Professor of Epidemiology Emory University | Health Policy Partner RAND Corporation, Atlanta, GA
Priscilla Ann Wallace-Boerger, EdD
With over 20 years of experience in the field of education, Dr. Priscilla Boerger has taught students between the ages of 6 – 50+ years from wealthy neighborhoods, innercity neighborhoods, varying races and diverse cultures, and differing learning abilities.
From elementary to college/university level she has witnessed, first hand, the inequalities amongst the advantaged and the disadvantaged. With a strong belief that education serves as an opportunity to not only better oneself but, to also become a citizen who positively contributes to society, she created a program to academically support the children of migrant workers in one of the wealthiest counties in the state of Florida.
While the national average for retention/completion in a doctoral program is under 50%, as Program Director of the Higher Education Leadership EdD program at Regis College, Priscilla prides herself on the 96% persistence rate within the program. She strives to embed a top down mentoring approach by having the doctoral students serve as role models to the educational Master’s level students who then serve as role models for the undergraduate students.
Most recently, Priscilla has focused her research and work on diversity, equity, and inclusion/social justice. She is a trained Qualified Administrator of the Intercultural Development Instrument and works with organizations on their DEI initiatives. Dr. Boerger has lectured at regional, national, and international conferences for the past 14 years on various topics that promote the whole child – at all levels.
Dr. Boerger currently serves as the Department of Education Chair, EdD Program Director, and MEd Program Director at Regis College in Weston, Massachusetts.
Priscilla Ann Wallace-Boerger, EdD
Chair, Dept. of Education Program Director Regis College
Kim Whitmore, PhD, RN, CPN
Research Interests
The overall goal of Dr. Whitmore’s research program is to inform the development of a care delivery system that promotes family self-management in families of children with special healthcare needs in order to optimize individual and family outcomes. Dr. Whitmore uses a systems approach, with a health equity lens, to better understand and address needs across the care continuum and throughout the life course of the family. Her servant research philosophy involves deep community engagement in order to ensure that research is driven by, conducted with, and designed to benefit those most impacted. Dr. Whitmore strives to discover new knowledge that can inform policy and practice changes that will transform communities, the healthcare system, and, ultimately, the lives of families of children with special healthcare needs. Much of her current work is focused on understanding and addressing the respite care needs of family caregivers.
Website Link: https://www.marquette.edu/nursing/directory/kim-whitmore.php
Kim Whitmore, PhD, RN, CPN
Assistant Professor at Marquette University, Milwaukee, WI
Report on Caregiving Youth in the U.S. | Progress and Opportunity | December 2023
Report on Caregiving Youth in the U.S. | Executive Summary
Report on Caregiving Youth in the U.S. | White Paper
Report on Caregiving Youth in the U.S. | Recommendations
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