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U.S. RESOURCES: CAREGIVING YOUTH

Several amazing direct service organizations exist for middle and high school youth who care for a loved one in the United States. These organizations support kids who are caregivers based on the medical diagnosis or situation of the person(s) they care for. Many support programs for youth are part of a larger organization, and some also provide services to young adult caregivers beyond the age of 18. Each of these organizations has useful resources based on their areas of expertise on their websites for kids who are caregiving or their parents/guardians. Many offer in-person summer camps and meetings as well as virtual support services.

Camp Corral 
Youth who are caring for someone who is a Wounded Warrior |
“Transforming the lives of the children of wounded warriors.”

Hope Loves Company
Youth who are caring for someone with ALS or Lou Gehrig’s disease | “We provide emotional and educational support to children and young adults who have or had a loved one battling Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease.”

Kesem
Youth who are caring for someone with cancer | “Kesem is a leading national non-profit organization that supports children impacted by a parent’s cancer. Kesem provides year-round programs and services to support children ages 6-18 at no cost to families.”

Hidden Helpers
Youth who are caring for a Wounded Warrior or Veteran |
The Elizabeth Dole Foundation | Hidden helpers are the children, youth, and young adults (up to age 18) who are impacted or involved in the mental, emotional, or physical care of a wounded, ill, or aging service member or veteran.

Lorenzo’s House
Youth who are caring for someone with Younger-Onset Dementia | “We are a nonprofit social impact organization designed to empower youth and families, living with younger-onset dementia.”

PSYCH/ARMOR
Supporting Youth Who Support Veterans | Caregiving Youth often make sacrifices to provide care for family members who are ill, injured, elderly, or disabled. This course acknowledges the contributions of these youth caregivers, goes into the scope of the problem, and offers some solutions.

The Caregiver Foundation
Support for Caregiving Youth
in Hawaii |
The Caregiver Foundation is committed to providing practical, financial, and emotional support to Hawaii’s Caregiving Youth through a variety of programs supported by community partnerships and grants. 

The Caregivers Guardian Education and Advocacy (TCGE&A) | We empower youth caregivers and their families through heart-centered education, advocacy support, and collaboration. 

YCare
Youth who are caring for someone with ALS + Young Caregivers | “YCare is a modular training skills and support program for children, youth and young adults who provide care to someone with an injury, diagnosis or illness.”

The following PDFs can be distributed via email, social media, or other online platforms or printed out offline, a convenient way to share information about AACY programs.

​View videos on Caregiving Youth
A video archive of stories about Caregiving Youth from a variety of sources, including national news outlets.

VIEW VIDEO ARCHIVE HERE

​I Am A Teen Caregiver. Now What?
A resource for Caregiving Teens. A portion of the proceeds from the purchase of this book go to the American Association of Caregiving Youth.

PURCHASE BOOK HERE

The following list of scholarly articles and resources on Caregiving Youth is intended to provide a sample of research conducted within the past 15 years. It is important to note that this list is not exhaustive and does not encompass all relevant studies in this field. Additionally, the reported numbers of Caregiving Youth may vary depending on the publication year of each article. Caregiving Youth are also referred to as young caregivers, caregiving kids, youth caregivers, and the UK, Australia, and Canada use the term young carers.

For those interested in learning more about young carers in the United Kingdom, it’s worth noting that the UK has an extensive body of research, programs, and resources dedicated to this population. The UK boasts hundreds of studies addressing the needs and challenges faced by young carers, along with comprehensive support programs. To access information on UK statistics and resources related to young carers, you can search for “young carers” and visit organizations like Carers Trust, which provide valuable insights and support for young carers in the UK. 

As of the most recent available data in the United States, there are over 5.4 million caregiving youth between the ages of 8 and 18.

WHITE PAPER: Report on Caregiving Youth in the U.S. | Progress and Opportunity
Caregiving Youth Research Collaborative (CYRC) – December 2023

Social Policy Report: The United States should recognize and support caregiving youth
Emma Armstrong-Carter, Stanford University; Catherine Johnson & Julia Belkowitz, University of Miami Miller School of Medicine; Connie Siskowski, The American Association of Caregiving Youth; & Elizabeth Olson, University of North Carolina at Chapel Hill

Recognize and Support Caregiving Youth in Your Care
American Academy of Pediatrics (AAP), January 11, 2023 – Mandy Rivera; Brianna Bliss, MS, PsyD; Connie Siskowksi, RN, PhD; Julia Belkowitz, MD, MPH

Young Carers, The Overlooked Caregiving Population: Introduction to a Special Issue
Kavanaugh, M.S., Stamatopoulos, V. Young Carers, The Overlooked Caregiving Population: Introduction to a Special Issue. Child Adolesc Soc Work J 38, 487–489 (2021).

Young Caregivers in the U.S.
Young Caregivers in the U.S. (2005) a report of the National Alliance of Caregivers and United Hospital Fund

Unacknowledged Caregivers: A Scoping Review of Research on Caregiving Youth in the United States
Kavanaugh, M.S., Stamatopoulos, V., Cohen, D. et al. Unacknowledged Caregivers: A Scoping Review of Research on Caregiving Youth in the United States. Adolescent Res Rev 1, 29–49 (2016). https://doi.org/10.1007/s40894-015-0015-7

Medication administration by Caregiving Youth: An inside look at how adolescents manage medications for family members
Journal of Adolescence Volume 69, December 2018 – Margaret Nickels, Connie Siskowski, Cynthia N. Lebron, Julia Belkowitz: Children take on the role of family caregiver throughout the world. No prior published research exists surrounding the particular circumstances of the task of medication administration and management by these youth, which was explored in this study.

The Role of Caregiving Youth in Multi-Generation Households
Connie Siskowski, RN, PHD

Coordinating the Youth Caregiver in the United States: Representation, Ambivalence and Slow Violence
Elizabeth Olson, Department of Geography, University of North Carolina at Chapel Hill – ACME: An International Journal for Critical Geographies,2019, 18(5):1150-1166

Invisible caregivers: More than a million children and adolescents are caring for family members. What are the consequences for their development?
American Psychological Association, Monitor on Psychology, Stacy Lu – September 2015, Vol 46, No. 8

“If It Needs to be Done, It Needs to be Done” – National Survey of Youth Experiences and Perspectives on Caregiving
The purpose of this study was to explore youth experiences and perspectives on family caregiving to improve programs and policies that impact the well-being of youth. Raj M, Feldman SJ, Platt JE, Chang T. “If It Needs to be Done, It Needs to be Done”: National Survey of Youth Experiences and Perspectives on Caregiving. J Adolesc Health. 2021 Oct;69(4):664-667. doi: 10.1016/j.jadohealth.2021.03.003. Epub 2021 Apr 10. PMID: 33846056; PMCID: PMC8867996.

Student pharmacists’ role with caregiving youth
Watrous, Marc, Siskowski, Connie, Student pharmacists’ role with caregiving youth, American Pharmacists Association, July/August 2013, pg.10

Health and educational status of children raised by a caregiver with a disability
Donna R. Miles, Ph.D.; Michael J. Steiner, M.D.; Karen J. Luken, M.S.; Michael R. Sanderson, M.P.H.; Tamera Coyne-Beasley, M.D., M.P.H.; Harry Herrick, M.S.P.H., M.S.W., M.Ed.; Elizabeth Mizelle, M.P.H.; Carol A. Ford, M.D.

A growing phenomenon, youth caregivers need recognition, support
Tate Gunnerson

The Hidden Population of Caregiving Youth in Our Schools
By Ann Faraone, EdD; Connie Siskowski, RN, PhD; & Carol D. Goodheart, EdD

Global Perspectives on Children’s Unpaid Caregiving in the Family: Research and Policy on ‘Young Carers’ in the UK, Australia, the USA and Sub-Saharan Africa
Becker Saul, “Global Perspectives on Children’s Unpaid Caregiving in the Family: Research and Policy on ‘Young Carers’ in the UK, Australia, the USA and Sub-Saharan Africa.,”
 Global Social Policy 2007; 7; 23, DOI: 10.1177/1468018107073892

The emotional and mental health needs of young carers: what psychiatry can do
Roswitha Dharampal1 and Cornelius Ani – “To review the literature on the emotional and mental health needs of young carers of parents with mental illness and the extent to which such needs are recognized and supported by professionals. Three databases were systematically searched from 2008 to 2018, and five studies met the inclusion criteria.”

Children’s Provision of Family Caregiving: Benefit or Burden?
East, Patricia, Children’s Provision of Family Caregiving: Benefit or Burden?, Child Development Perspectives, Volume 4, Number 1, Pages 55-61 Despite the high numbers of children who provide care to family members in industrialized countries, relatively little is known about the impact of caregiving on children’s development. In this article, issues related to children’s caregiving, including a discussion of who provides care, the costs and benefits of caring, and directions for future research are reviewed. This review is intended to stimulate further study of this issue, particularly in clarifying who is most vulnerable to caregiving burden and understanding how caregiving affects children’s lives and development.

Mexican American Adolescents’ Family Caregiving: Selection Effects and Longitudinal Associations With Adjustment
East, L. Patricia, Weisner, S. Thomas, Mexican American Adolescents’ Family Caregiving: Selection Effects and Longitudinal Associations With Adjustment., Family Relations 58, December 2009: 562-577

Reading, writing and responsibility: Young Carers and Education
Moore, Tim, Ros Morrow, Morag McArthur, Debbie Noble-Carr, and Jamie Gray. Rep. N.p.: n.p., 2006. Print.

“Too much to take on – A report on young carers and bullying.”
Princess Royal Trust for Carers. (1999).

“From Their Eyes… Family Health Situations Influence Students’ Learning and Lives In Palm Beach County, Grades 6-12,”
Siskowski, Connie, August 2003

Middle School Student Responses to Family Health Questions: The Effects of Family Caregiving on the Education of Middle School Students with Family Health Issues
Siskowski, C. T. (2004) [Doctoral dissertation, Lynn University]

Caring for Caregivers
Tormo, Jennifer, Caring for Caregivers, Boca Life, gulfstreammediagroup.com, February 2013

Young Carers: Conventional or Exaggerated Levels of Involvement in Domestic and Caring Tasks?
Warren, Janet, Young Carers: Conventional or Exaggerated Levels of Involvement in Domestic and Caring Tasks? CHILDREN & SOCIETY VOLUME 21, (2007) pp. 136–146
DOI:10.1111/j.1099-0860.2006.00038.x