Caregiving Youth Project
A School-Based Intervention to Support a
Hidden Population in Need
Authors
• Rammy Assaf, MS4
University of Miami Miller
School of Medicine
• David A. Ludwig, PhD
University of Miami Miller
School of Medicine
• Jennifer auf der Springe, MS4
University of Miami Miller
School of Medicine
• Julia Belkowitz, MD
University of Miami Miller
School of Medicine
• M. Sunil Mathew
University of Miami Miller
School of Medicine
• Connie Siskowski, RN, MPA, PhD
American Association of
Caregiving Youth
We have no relevant financial relationships with the manufacturer(s) of any commercial
product(s) and/or provider(s) of commercial services discussed in this CME activity. We do
not intend to discuss an unapproved/investigative use of a commercial product/device in
this presentation.
BACKGROUND
Who are Caregiving Youth?
• Children who provide significant
assistance to relatives or household
members who suffer from physical or
mental illness, disability, frailties of aging,
or substance misuse
• At least 1.3 million caregiving youth ages
8-18 years in the US
Young Caregivers in the US: Findings from a national survey. National Alliance for
Caregiving, in collaboration with United Hospital Fund. 2005.
BACKGROUND
Responsibilities
• Personal care
• Medical care
• Household management
• Supervision
• Language translation in medical settings
• Emotional support
Rare to receive training, information, education, or support
Young Caregivers in the US: Findings from a national survey. National Alliance for
Caregiving, in collaboration with United Hospital Fund. 2005.
BACKGROUND
BACKGROUND
Effects of Caregiving on Youth
• Physical effects
• Can compromise normal growth and
development
• May miss well visits and immunizations
• Psychological effects
• Anxiety, isolation, and depression
• Academic effects
• Often unable to complete their homework,
have their thoughts interrupted, or miss school
Cohen, Greene, Toyinbo & Siskowski, 2012; Siskowski 2006.
BACKGROUND
Rewards of Caregiving
• Special relationship with the care
recipient
• Mature life skills
• Sense of purpose
• Enhanced self-esteem when
recognized for contribution
• Increased empathy
BACKGROUND
BACKGROUND
Caregiving Youth (a.k.a. Young
Carers) in Other Countries
Supportive
Services
Organization
& Public
Policy
Northern Ireland
Canada
Australia
England
Informal
Informal
Formal
Formal
Individual basis
through school
teachers, district
nurses and social
workers
Workshops,
respites, skills
training,
homework
support
Education,
respite, financial,
domestic &
personal
assistance
Young carer
assessment
plan
NGOs, social
workers, schools
Interagency
strategies by
province
Federal, state,
and NGOs
Legal
recognition
(2009); Adult
and Children
Social Services
BACKGROUND
A Comprehensive and
Integrated Support System
COMMUNITY
AWARENESS
SUPPORT PROVIDED
THROUGH SCHOOLS
SERVICE PROVIDER
EDUCATION
YOUTH SERVICES IN
TRANSITION FROM
ADOLESCENCE TO
ADULTHOOD
PROGRAM OBJECTIVES
American Association of
Caregiving Youth
• Mission
To increase awareness about the effects on children who
provide care for family members who are ill, injured, elderly
and/or disabled while fostering the replication of the
Caregiving Youth Project model within FL and the US; to
provide direct and indirect support services for caregiving
youth and families; and, to develop the Caregiving Youth
Institute
PROGRAM OBJECTIVES
Caregiving Youth Project (CYP)
• The CYP of the American
Association of Caregiving Youth
(AACY), est. 2006, is the only
program in the US solely dedicated
to supporting caregiving youth and
their families
Palm Beach County, FL
• In partnership with The School
District of Palm Beach County to
identify youth and provide services
• Served over 700 student-caregivers
since its inception
PROGRAM DESCRIPTION
CYP Services
• In school
• Skills-building classes, support groups,
lunch and learn sessions
• At home
• Linking families with resources,
providing computers, tutoring and
solutions for special needs
• Out of school
• Overnight camp, fishing, dining,
educational and fun activities
RESEARCH
Data Collection
SCREEN TO ALL 6TH GRADERS
AT 8 PARTNER SCHOOLS
SELF OR OTHER REFERRAL
YOUTH INTAKE
(CYP staff with caregiving youth)
n = 550
CYP ACTIVITIES
HOME VISIT
High school students were excluded
from the current study.
FAMILY INTAKE
(CYP staff with
family member)
n = 180
KEY FINDINGS
Demographics
• Age: 10-15, median 12
• Gender: 62% F, 38% M
• 20% reported multiple care
recipients
• 24% did not list English as a
primary language in the home
Care Recipients
Grandparent or great-grandparent
Parent or stepparent
Sibling
Aunt, uncle, great-aunt, or great-uncle
Other
0
50
100
150
200
250
KEY FINDINGS
What Caregiving Youth Do
Hours Spent
(Median, IQR)
Continence care
Bathing
9
Toileting
8
Dressing
7
Feeding
6
Mobility
5
Family
Report
4
3
0
Equipment
Translating
2
1
Appointments
Youth
Report
Medications
Groceries
Emotional support
Keep company
0%
20%
40%
60%
80% 100%
RESEARCH
Limitations & Future Research
• Self-report: caregiving youth vs.
family perceptions
• Data not originally collected for
research purposes
• Annual form updates
• Variations in data collection
procedure
• Missing data
IMPLICATIONS
November is National Family
Caregivers Month!
What you can do to help
IMPLICATIONS
Identifying Caregiving Youth at
School
• Family
• Known illness or disability
• Absence from school functions
• Lack of parent participation at school
• Students
•
•
•
•
•
•
Tardiness, absences
Achievement below level of capability
Frequent trips to school nurse
Unkempt appearance
Anxiety, depression, behavioral challenges
Inability of kids to participate in activities
IMPLICATIONS
Healthcare Providers
• Medical visit one of best opportunities to
start discussion
• Ask about health conditions in family
• Ask who provides care at home
• Ask youth about activities they do to help care for
loved one
• Be source of support for caregiving youth
and their families
• Support legislation
• Improve caregiver support, training
• Long-term healthcare services, financing
IMPLICATIONS
Reach out to AACY
800-725-2512 / 561-391-7401
www.aacy.org
• Provide feedback about experiences
• Inquire about developing a Caregiving Youth Project and
other support services
Other Resources
• Alzheimer’s Foundation of America Teens | 866-232-8484 | www.afateens.org
Nationwide organization that seeks to engage teens with family members
affected by Alzheimer’s disease and raise awareness of the illness
• Caregiver Action Network | 202-772-5050 | www.caregiveraction.org
National organization providing education, peer support and resources to
family caregivers
• Family Caregiver Alliance | 800-445-8106 | https://caregiver.org
National organization that aims to improve caregivers’ quality of life through
information, services, and advocacy
• National Alliance for Caregiving | 301-718-8444 | www.caregiving.org
Coalition of national organizations that focus on issues of family caregiving
• YCNet | www.youngcarers.net
UK-based online support service for caregiving youth
References
• Aldridge J, Becker S. Children as carers. Arch Dis Child. 1993;69(4):459-462
• Chase N. Burdened Children: Theory, Research, and Treatment of Parentification. 1999. Sage Services.
• The Children’s Society UK. Report reveals impact on young carers. 2013.
http://www.childrenssociety.org.uk/news-and-blogs/press-release/report-reveals-impact-youngcarers
• Cohen D, Greene J, Toyinbo P, Siskowski C. “Impact of family caregiving by youth on their psychological
well-being: a latent trait analysis.” J Behav Health Serv Res. 2012; 39(3):245-256.
• Crossroads Young Carers. BMA Northern Ireland. 2014.
http://www.crossroadsyoungcarers.co.uk/young-carers/
• “November is National Caregivers Month.” Administration on Aging. N.d. 17 September 2014.
http://www.aoa.gov/AoAroot/Press_Room/Social_Media/Widget/Statistical_Profile/2011/10.aspx
• “Professionals”. American Association of Caregiving Youth. N.d. 17 September 2014.
http://www.aacy.org/index.php?option=com_content&view=category&layout=blog&id=47&Itemid=1
96
• Report to the National Youth Affairs Research Scheme. Young Carers: their characteristics and
geographical distribution. Commonwealth of Australia.2009.
• Siskowski C. “Young caregivers: effect of family health situations on school performance.” J Sch Nurs.
2006; 22(3):163-9.
• The Vanier Institute of the Family. Young Carers in Canada. The Hidden Costs and Benefits of Young
Caregiving. 2007
• Young Caregivers in the US: Findings from a national survey. National Alliance for Caregiving, in
collaboration with United Hospital Fund. 2005.