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 Jennifer auf der Springe, MS4 University of Miami Miller School of Medicine M. Sunil Mathew University of Miami Miller School of Medicine David A. Ludwig, PhD University of Miami Miller School of Medicine Julia Belkowitz, MD 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.

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 BACKGROUND Young Caregivers in the US: Findings from a national survey. National Alliance for Caregiving, in collaboration with United Hospital Fund

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 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 BACKGROUND Cohen, Greene, Toyinbo & Siskowski, 2012; Siskowski 2006.

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

Caregiving Youth (a.k.a. Young Carers) in Other Countries BACKGROUND Northern IrelandCanadaAustraliaEngland Supportive Services Informal Individual basis through school teachers, district nurses and social workers Informal Workshops, respites, skills training, homework support Formal Education, respite, financial, domestic & personal assistance Formal Young carer assessment plan Organization & Public Policy NGOs, social workers, schools Interagency strategies by province Federal, state, and NGOs Legal recognition (2009); Adult and Children Social Services

A Comprehensive and Integrated Support System BACKGROUND COMMUNITY AWARENESS SERVICE PROVIDER EDUCATION SUPPORT PROVIDED THROUGH SCHOOLS YOUTH SERVICES IN TRANSITION FROM ADOLESCENCE TO ADULTHOOD

American Association of Caregiving Youth PROGRAM OBJECTIVES 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

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 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 OBJECTIVES Palm Beach County, FL

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 PROGRAM DESCRIPTION

SCREEN TO ALL 6 TH GRADERS AT 8 PARTNER SCHOOLS YOUTH INTAKE (CYP staff with caregiving youth) n = 550 FAMILY INTAKE (CYP staff with family member) n = 180 SELF OR OTHER REFERRAL CYP ACTIVITIES HOME VISIT High school students were excluded from the current study. Data Collection RESEARCH

KEY FINDINGS Age: 10-15, median 12 20% reported multiple care recipients Gender: 62% F, 38% M 24% did not list English as a primary language in the home Demographics Care Recipients

KEY FINDINGS What Caregiving Youth Do Hours Spent (Median, IQR) Youth Report Family Report ADLs IADLs

Self-report: caregiving youth vs. family perceptions Data not originally collected for research purposes Annual form updates Variations in data collection procedure Missing data RESEARCH Limitations & Future Research

November is National Family Caregivers Month! What you can do to help IMPLICATIONS

Identifying Caregiving Youth at School IMPLICATIONS 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

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 / IMPLICATIONS Provide feedback about experiences Inquire about developing a Caregiving Youth Project and other support services

Alzheimer’s Foundation of America Teens | | Nationwide organization that seeks to engage teens with family members affected by Alzheimer’s disease and raise awareness of the illnesswww.afateens.org Caregiver Action Network | | National organization providing education, peer support and resources to family caregiverswww.caregiveraction.org Family Caregiver Alliance | | National organization that aims to improve caregivers’ quality of life through information, services, and advocacyhttps://caregiver.org National Alliance for Caregiving | | Coalition of national organizations that focus on issues of family caregivingwww.caregiving.org YCNet | UK-based online support service for caregiving youthwww.youngcarers.net Other Resources

References Aldridge J, Becker S. Children as carers. Arch Dis Child. 1993;69(4): Chase N. Burdened Children: Theory, Research, and Treatment of Parentification Sage Services. The Children’s Society UK. Report reveals impact on young carers carers carers 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): Crossroads Young Carers. BMA Northern Ireland “November is National Caregivers Month.” Administration on Aging. N.d. 17 September “Professionals”. American Association of Caregiving Youth. N.d. 17 September Report to the National Youth Affairs Research Scheme. Young Carers: their characteristics and geographical distribution. Commonwealth of Australia Siskowski C. “Young caregivers: effect of family health situations on school performance.” J Sch Nurs. 2006; 22(3): The Vanier Institute of the Family. Young Carers in Canada. The Hidden Costs and Benefits of Young Caregiving Young Caregivers in the US: Findings from a national survey. National Alliance for Caregiving, in collaboration with United Hospital Fund