An Urgent Need to Support Children and Adolescents Who Are Caregivers for Family in the United States

Adolescent clinicians have a long history of recognizing and supporting developing adolescents and young adults, including those whose struggles have gone unseen. Right now, children and adolescents are stepping up to meet the caregiving needs of their families. The United States (US) is facing a well-documented caregiving crisis as an aging population requires more caregiving in the home [1]. An estimated 5.4 million youth below age 18 are providing ongoing care for family members with health-related needs [1]. They manage loved ones’ complicated daily tasks of living (e.g., feeding, toileting, medication) while simultaneously juggling their schoolwork [2]. Although the proportion of caregiving youth has grown 250% in 15 years [1,3], little attention has been paid to meeting their needs. The US can join other countries, notably the UK, Australia and Canada, to support caregiving youth within medical systems, social services, and educational systems [4]. Clinicians can help to ameliorate caregiving youths’ heightened risk for anxiety, depression, sleep problems, and academic challenges [5], by providing support and resources [6,7]. For example, 22% of students who leave high school before graduating do so to care for family [8].

Caregiving youth can benefit from the expertise of adolescent clinicians, who can help marginalized youth thrive. Although the needs of caregiving youth are currently unrecognized in US medical and educational systems, change is in the air. In 2022, Rhode Island enacted history-making legislation and will become the first US state provide school-based programs for supporting caregiving youth [6,9]. This new law focuses professional attention towards developing and implementing applied policies to mitigate disparities affecting caregiving youth.

Identifying caregiving youth is a necessary first step for supporting them. Primary care clinicians are well-equipped for identification, even though most clinicians do not know which youth within their practices provide care at home [10]. A simple way is for clinicians to ask children if they are involved in caretaking when there is a disabled or aging person in the home [10]. Identification may occur when caregiving youth come for their own clinic visits, or when caregiving youth accompany their disabled or aging family member. Clinicians who care for elderly or disabled patients may improve patient outcomes by recognizing caregiving youth and involving them in developing feasible plans of care.

Adding a single item to clinic intake forms would also help identify caregiving youth; Table 1 shows a question that was developed by leading researchers [11] and approved the Centers for Disease Control in English and Spanish [4,7]. Caregiving youth often feel excluded from the discussion about their loved one’s care, even though they are frequently in positions of making difficult medical decisions [10,12,13]. Simply acknowledging youths’ caregiving work and role and asking them how they are doing can alleviate feelings of isolation, stress and frustration [10,12,13].

Table 1.

Recommended survey item in English and Spanish to identify caregiving youth

English	Spanish
“During an average week, how many days do you provide care for someone in your family or household who is chronically ill (lasts 3 months or more), elderly, or disabled with activities they would have difficulty doing on their own?”	Durante una semana típica, ¿cuántos días atiendes a alguien de su familia o en su casa que está enfermo crónicamente (dura 3 meses o más), anciano, o discapacitado con actividades que tendría dificultad para hacer por su propia cuenta?
a) “There is no one in my family or home who is chronically ill, elderly, or disabled who needs care”	a) No hay nadie en la familia o en el hogar que está crónicamente enfermo que necesite atención b) 0 dias por semana
b) “0 days per week”	c) 1 a 2 días por semana
c) “1 or 2 days per week”	d) 3 a 5 días por semana
d) “3–5 days per week	e) 6 a 7 días por semana
e) “6 or 7 days per week.”

This item was developed by Dr. Elizabeth Olson, a Professor at the University of North Carolina at Chapel Hill, and Connie Siskowski, the President and Founder of the American Association of Caregiving youth. It was approved by the Centers for Disease Control in 2019 and has been successfully used in Florida schools. It will also be implemented in Rhode Island and Colorado schools this year.

Following identification, clinicians can connect youth and families with local services and resources to support their wellbeing. As other clinicians and researchers have highlighted, services that reduce the family’s caregiving burden also alleviate burden for the child [10]. For example, most states offer home care services through Medicare or Medicaid, and other services for elderly and disabled people. Several disease specific organizations (e.g., Alzheimer’s, ALS, Huntington’s Disease [14,15]) offer resources for respite care, and specific resources for caregiving youth. In many settings, clinic-based social workers can connect families to available resources. An online platform Kids Are Caregivers Too connects caregiving youth with each other [16]. Material resources including the book I Am a Teen Caregiver. Now What? [17] can help caregiving youth feel less alone. The nonprofit American Association of Caregiving Youth, provides financial support and programs for caregiving children and families, as well as resources for schools and medical systems [18].

The effects of family caregiving on adolescents are complex, and not all negative. Even though balancing caregiving with school is extremely difficult [2,7], young people simultaneously report more confidence, fulfillment, and closeness because of their caregiving [2,19,20]. According to the HOPE-Healthy Outcomes from Positive Experiences framework [21], engaging youth in supporting their families can help them feel they matter, and foster positive familial relationships. Communities and systems of care can better ensure that caregiving is, at least in part, a positive experience.

Clinicians often advise educational systems on the developmental needs of adolescents. Clinicians who identify caregiving youth and families can connect with educational systems, including school social workers. The school may be able to reach out to these students and respond with supportive — rather than punitive — measures if behavioral or academic challenges arise [10]. Caregiving youth may be those who are missing school frequently [22], falling asleep in class, or showing emotional distress or behavioral problems [7]. As Miller and Wolff [23] note in this issue, practitioners should be aware that some state laws “include parental disability as grounds for terminating parental rights”, and be sensitive when improving access to resources and services so they do not create more potentially harmful effects for caregiving youth and their families.

In addition to understanding the situations of individual students, a needs assessment can drive school systems to plan and implement support. As of January 2024, three states already ask students if they are involved in caregiving (Florida, Rhode Island, Colorado), steps that emerged directly out of partnerships with the American Association of Caregiving Youth and academic researchers [4,6,7]. States can readily count and identify caregiving youth by adding the Centers for Disease Control approved question to existing school surveys [7]. Once caregiving youth are identified, schools can track disparities and respond sensitively to interferences with school attendance and success.

School-based health centers offer more opportunities to connect caregiving youth and their families to local physical and mental health services. Implementation of improved supports includes trainings for school nurses, social workers, and teachers. Specific interventions might include facilitating student support groups and mentorship programs for caregiving students, prioritizing them for flexible course schedules and transport options, and recognizing their caregiving formally as meeting required community service hours. Rhode Island’s new policy may include these components and serve as one model.

No child or adolescent should have to choose between thriving and caregiving for a loved one. To be able to learn and succeed, caregiving youth need access to more community resources and support. Adolescent health clinicians have an opportunity to play a key role in identifying and connecting caregiving youth and their families with existing resources and supports to alleviate burden and disparities. This work is crucial since formalized caregiving services in the US are currently only available to caregivers above age 18 [5]. Caregiving youth are already paying it forward by supporting our population’s health and economy [5]; we can support them better!