A hidden group of kids at risk

More than 1.3 million preteens and adolescents are at risk of stress-related school failure or impaired health because of the adult-sized responsibilities they must shoulder, according to a study presented at the recent American Academy of Pediatrics National Conference in San Diego.

These underrecognized populations of “caregiving youth” spend their free time assisting a family member with physical or mental illness, disability, age-related frailty, or substance misuse. The resulting chronic physical and emotional stress often leads to depression, anxiety, physical health problems, school difficulties, isolation, and stigmatization by peers, the study reports. A 2005 survey by the National Alliance for Caregiving and the United Hospital Fund found that more than 1.3 million children and teenagers aged 8 to 18 years were serving as caregivers.

Puzzler: Boy's lymphadenopathy leads to acute heart failure

Researchers worked with the American Association of Caregiving Youth (AACY) to examine the experiences of caregiving youth in Palm Beach County, Florida, and the impact of support services provided by the AACY through its Caregiving Youth Project, the only such program in the country. They analyzed around 500 AACY intake forms-including information about demographics, caregiving activities, and health status-from students at 8 middle schools in Palm Beach County and also reviewed family intake forms and annual feedback forms from children who participated in AACY activities.

Of the young caregivers studied, 62% were girls and 38% boys. Their median age was 12 years. They reported spending a median of 2.5 hours on school days and 4 hours each weekend day helping family members get around, eat, dress, bathe, and use the toilet, as well as providing continence care, company and emotional support, cleaning the house, grocery shopping, giving medications, handling home medical equipment, and serving as translators in medical settings.

Calling caregiving youth “a hidden population in need,” the researchers note that pediatricians, nurses, and other school health personnel “are in a unique position” to identify at-risk youngsters. Recognizing that support services are in short supply in most of the country, the AACY is working with educators and healthcare professionals to build a national system to find and support children who are also caregivers. 

To get weekly clinical advice for today's pediatrician, subscribe to the Contemporary Pediatrics PediaMedia.