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Underestimated adolescent caregiver population requires attention
SAN DIEGO — More than 1.3 million adolescents are caregivers for a family member with a physical or mental illness or substance use disorder, according to data presented at the 2014 AAP National Conference and Exhibition.
Researchers worked with the American Association of Caregiving Youth (AACY) in Palm Beach County, Fla., to assess the experiences of adolescent caregivers and the impact AACY services had on caregiving adolescents. More than 600 intake forms completed by adolescents, and 200 family intake forms were reviewed.
Of 12,681 children surveyed in Palm Beach County, more than 6,000 reported being caregivers in 2002. The median age of adolescent caregivers was 12 years, and 63% were girls.
“AACY services in Palm Beach County reach only the tip of the iceberg,” Connie Siskowski, RN, PhD, president of AACY, said in a press release. “Today in the US, there are many more than the 1.3 million identified in 2005 who face the challenges of juggling adult-sized responsibilities of caring for ill, injured, aging or disabled family members while trying to keep up at school.”
Adolescents reported spending a median of 2 hours per school day and 4 hours per weekend day performing caregiver tasks at home. Family members reported lower median time spent on caregiving, about 1.5 hours on weekdays and 2.75 hours on weekend days.
Tasks reported by adolescent caregivers included assisting family members with mobility, eating, dressing, bathing and continence care. They also reported keeping family members company, providing emotional support, cleaning the house, shopping for food, administering medications and handling medical equipment at home.
“One of the big things we’d like pediatricians to start doing is looking out for caregiving youth in the office,” study researcher Jennifer auf der Springe, of the University of Miami Miller School of Medicine in Miami, told Infectious Diseases in Children. “Whether you're taking care of a child who you think might be taking care of somebody else, or if you're talking to the family of a current patient, you want to address the child directly because they might be the only person who knows everything that they do to take care of another individual in their family. Ask them what they do for them how much time it’s taking them, how it’s affecting them in their regular life.”
Jennifer auf der Springe
If pediatricians do identify their patient as someone at risk, auf der Springe recommends referring them to someone in the community who can help. Although the AACY are mostly active in Palm Beach County Florida, according to auf der Springe, they can connect with other local resources.
“This study is an important step toward raising awareness about the issue of caregiving youth. The AACY is developing partnerships throughout the nation to further understand this special population and expand programming to provide the resources and support these young people need and deserve,” researcher Julia Belkowitz, MD, FAAP, said in a press release. — by Amanda Oldt
For more information:
Assaf RR. #23915. Presented at: 2014 AAP National Conference and Exhibition; Oct. 11-14, 2014; San Diego.
Disclosure: Infectious Diseases in Children was unable to confirm any relevant financial disclosures.