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.