Caregiving Youth Uncovering a hidden population Objectives Introduce

Caregiving Youth: Uncovering a hidden population

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

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

Trends Worldwide • Other countries (UK , Australia) have long recognized “Young carers” • Prevalence estimates: (definitions vary) o 2. 1% (England) - 12% (Canada) • Numbers are increasing: o UK population increased by 18. 7% between 2001 and 2011 o Australian number of Young Carer Allowance recipients more than doubled between 2002 and 2010 Cass 2011, Office for National Vital Statistics 2013, Bray 2012

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) 5

What do we know about Caregiving Youth in the US?

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 o An estimated 22% may have been eligible for services based upon initial screening NAC 2005, NAC 2009, Assaf 2015

Demographics of Caregiving Youth in Palm Beach County, FL • Among 396 intake forms from sixth graders; enrolled between 2007 -2013 • Still active as of spring, 2014

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

Primary Care Recipients • 19% reported multiple care recipients Grand parent, great-grandparent Parent, stepparent Sibling/ step-sibling Aunt, uncle, great-aunt, great- uncle Other 0 20 40 60 80 100 120 140 160 180

Responsibilities Percent

How much time do Caregiving Youth spend in their role?

Impact Reported being generally healthy o Very healthy 59. 6% o OK 37. 4% o Not very healthy 3. 0% Moderately good levels of caregiving self-efficacy o Terrific 9. 7% o Pretty good 50. 5% o OK 33. 5% o Not so good 5. 7% o Terrible 0. 5%

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

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

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 o Roles beyond developmental stage Kavanaugh 2015, NAC/UHF, 2005, Cohen 2012

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