Caregiving Youth Project: A School-Based Intervention to Support a Hidden Population in Need

Saturday, October 11, 2014: 1:33 PM
Marina Ballroom Salon E (San Diego Marriott Marquis )
Raymen R. Assaf, MA1, Jennifer auf der Springe1, M. Sunil Mathew2, David A. Ludwig, PhD2, Julia Belkowitz, MD3 and Connie Siskowski, RN, MPA, PhD4, (1)University of Miami Miller School of Medicine, Miami, FL, (2)University of Miami, Miller School of Medicine, Boca Raton, FL, (3)University of Miami Miller School of Medicine, Boca Raton, FL, (4)American Association of Caregiving Youth, Boca Raton, FL


“Caregiving youth” are children who provide significant assistance to relatives or household members who suffer from physical or mental illness, disability, frailties of aging, or substance misuse. There are at least 1.3 million caregiving youth ages 8-18 years in the US (NAC/UHF 2005). They often suffer from depression, anxiety, physical health problems, school difficulties, isolation, and stigmatization by peers (Champlain 2005; Cohen 2012). Awareness of caregiving youth, especially among the medical community, as well as services to youth lag behind other countries such as the UK, Canada, and Australia (Becker 2007).  

Program Goals

Of 12,681 children surveyed in Palm Beach County, Florida, over 6,000 reported serving as caregivers in 2002 (What Works Survey). The Caregiving Youth Project (CYP) of the American Association of Caregiving Youth (AACY), established in 2006, is the only program in the US dedicated to supporting caregiving youth and their families. It works in partnership with the School District of Palm Beach County to identify these youth and provide services. CYP has served over 700 student-caregivers since its inception. Services, beginning in sixth grade and continuing throughout high school, include in-school skills-building groups, family strengthening, community resource referrals, personalized computer access, tutoring, and extracurricular activities. AACY is establishing an affiliate network of partners throughout the US based on the success of its model. This network is being supported by a web-based directory of support services as well as education for professionals about the effects of caregiving on students.  


Program services are documented through intake forms, surveys completed at the end of the skills-building workshops, family intake forms for those receiving home visits, annual self-reported feedback, as well as in a web-based data management system. Data from all CYP participants since program inception is currently being analyzed to describe its caregiving youth and assess CYP impact. Measures include demographic descriptions of caregiving youth, caregiving activities, self-reported youth health status, and access to care prior to participating with the program. Program outcomes include self-reported change in caregiving knowledge and skills, impact on school performance, physical health, mental health, and sense of connectedness. 


Caregiving youth are a hidden population in need. Pediatricians, nurses and other healthcare professionals in schools are in a unique position to identify youth at risk for school failure and poor health consequences due to responsibilities at home. Services to support these youth are limited in most areas of the US, and the AACY is collaborating with multidisciplinary partners, including educators and healthcare professionals, to raise awareness of the issue and create a national system to identify caregiving youth and support their success.