1. Caregiving Youth: Uncovering a hidden population

2. Objectives Introduce and define the term “Caregiving Youth”
Describe the epidemiology of youth who serve as caregivers for family members in the US
Illustrate the impact of family caregiving on children’s mental and physical health, school achievement and general wellbeing
Introduce the Caregiving Youth Project
Explore ways of further supporting caregiving youth
Describe the caregiving youth study and intervention clinic based model at Children’s Hospital Los Angeles

3. WHO ARE CAREGIVING YOUTH?
Children & adolescents <18 years of age who provide significant assistance to relatives or household members who need help due to:
Physical or mental illness
Disability
Frailty associated with aging
Substance misuse
Other conditions

4. Trends Worldwide
Other countries (UK , Australia) have long recognized “Young carers”
Prevalence estimates: (definitions vary)
2.1% (England) - 12% (Canada)
Numbers are increasing:
UK population increased by 18.7% between 2001 and 2011
Australian number of Young Carer Allowance recipients more than doubled between 2002 and 2010
Cass 2011, Office for National Vital Statistics 2013, Bray 2012

5. Trends – Caregiving Youth in US
Information Limited
No recommendations to identify in the medical setting
No tracking via census or other measure
Even if asked: families may be reluctant to disclose
Children are excluded from caregiver support legislation (ex. National Caregiver Support Program)

6. What do we know about Caregiving Youth in the US?

7. Epidemiology
At least 1.3 million child caregivers in the United States (ages 8 – 18 years)
37% of caregiving households have children younger than 18 years of age
2% of sixth graders in participating schools in Palm Beach County Florida Schools enrolled in the Caregiving Youth Project
An estimated 22% may have been eligible for services based upon initial screening
NAC 2005, NAC 2009, Assaf 2015

8. Demographics of Caregiving Youth in Palm Beach County, FL
Among 396 intake forms from sixth graders; enrolled between
Still active as of spring, 2014

9. Demographics of Caregiving Youth in Palm Beach County, FL
31%Hispanic
21% as Haitian
17% as Caucasian
10% as Black
21% more than one racial/ ethnic group, other or unidentified
Age: median 11
Gender: 62% F, 38% M
24% did not list English as a primary language in the home

10. Primary Care Recipients
19% reported multiple care recipients

11. Responsibilities
Percent

12. How much time do Caregiving Youth spend in their role?

13. Impact Reported being generally healthy Very healthy 59.6% OK 37.4%
Not very healthy 3.0%
Moderately good levels of caregiving self-efficacy
Terrific 9.7%
Pretty good 50.5%
OK 33.5%
Not so good 5.7%
Terrible 0.5%

14. Impact: Physical Health
Potential effects:
Physical responsibilities of beyond physical readiness  injury
Impact on child receiving adequate well and sick pediatric care
Opportunity for research

15. Impact: Education
More than 1/3 of caregiving children reported affects on academic performance
Missed school days
Fewer extracurricular activities/ school related social events
Lateness, absences and poor performance, less time for homework
NAC/UHF, 2005; Siskowski, 2006

16. Impact: Mental Health Less time for childhood activities
At risk for anxiety, isolation and depression
Social isolation/ stigma
Lack of preparation for deterioration and death of loved one
Parentification
Roles beyond developmental stage
Kavanaugh 2015, NAC/UHF, 2005, Cohen 2012

17. Benefits for Youth
More likely to feel appreciated for the help given at home or to other people
Special relationship with the family member to whom they give care
Development of mature life skills, compassion and empathy
Sense of purpose/ identity (when recognized)
Enhanced self-esteem (when recognized)
Champlain 2008; Charles 2012