Invisible: On Youth Caregivers and Their Struggles


How many of you are an older sibling? How many of you are older siblings who have been asked to take care of your younger siblings while your parents were away? We'd all agree that this is a form of unpaid emotional and domestic labor. However, what happens when that labor is bound to a loved one's illness or disability? What about when you have this labor on top of homework, extracurricular activities, college applications, standardized testing, and the like before you're old enough to drink legally or even hold a job? If you feel stressed just reading that, think about the reality of the invisible young children who are called by their circumstances to replace paid medical care. And to think that this vulnerable population is severely understudied and under-supported. I mean, I couldn't find many reports or studies with publishing dates after 2010, much less health insurance policies or other social service programs targeted towards youth caregivers. After all, we are talking about 3.2% of the U.S. population (Young Caregivers, 2005).





The Life of a Youth Caregiver

A caregiver is defined as anyone who provides care for someone in their social circle that needs assistance with critical daily activities while living in the recipient's home or elsewhere. A youth caregiver is anyone under the age of 18 who does so. Youth caregivers typically help a parent or grandparent with activities of daily living (ADLs) like grocery shopping, household chores (dusting, sweeping, cleaning), moving around their house, laundry, meal preparation, and other critical tasks. The care recipients tend to be overwhelmingly female and most likely have health conditions such as heart, kidney or lung disease, Alzheimer's, dementia, diabetes, or arthritis. Caregivers can live with the care recipient - 64% of them do - but some don't. Unlike adult caregivers with jobs, youth caregivers are not able to take paid or unpaid leave from school to care for their disabled, aging or ill loved ones. In order to balance school obligations and caregiving duties, 20% of youth caregivers reported that they must give up leisure time for organized scholarly, like attending club or sport team meetings (Young Caregivers, 2005). These activities are imperative for college preparation and the lack of involvement exposes the unique disadvantages of their experiences. According to the 2005 report from the National Alliance for Caregiving, this is the reality for approximately 1.5 million children between 8 and 18 years old.


Effects of Youth Caregiving

Let's explore the ways in which youth caregivers are impaired by their unofficial roles. Youth caregivers experience psychological and behavioral changes as a result of their responsibilities. Youth caregivers are more likely to display anxious, depressed or antisocial behaviors than non-caregivers. I initially expected for there to be significantly more female youth caregivers than male because of standards set by gender roles. However, with the comprehensive 2005 report, I learned that the youth caregiving population is nearly split in half. Female youth caregivers accounted for 51% and male youth caregivers accounted for 49% (Young Caregivers, 2005). The major difference occurs in the perception of emotional expression for boy caregiving when compared to boy non-caregivers. Boy youth caregivers were twice as likely than boy non-caregivers to feel that expressing themselves emotionally was unnecessary. Boy caregivers, for this reason, are more likely to display behavioral issues in the school environment. This means that caregiving impacts are compounded by being male alongside other socioeconomic factors seen in low-income, single-parent or minority households. There is also a sense of secrecy about providing care to prevent suspicion of child neglect which increases the effects of their roles (Young Caregivers, 2005).


Current Policy Landscape

Let's recall that only about 3.2% of the U.S. population is comprised of youth caregivers. Our healthcare system does not have substantial support systems in place for this group. Medicare does not provide coverage for family or neighborhood caregivers the way it does for licensed nurses or home health aides. There also appear to be more resources for adult caregivers through nonprofit organizations and other entities. California has come close to providing an institutional level policy change for family caregivers. In California, working family caregivers are allowed up to 6 weeks of partially-paid leave (Support for Working Family Caregivers, n.d.). Granted, the legislation passed to increase employee productivity and to save employers money (*eyeroll*). The best program I could find for youth caregivers is the Caregiving Youth Project in Boca Raton, Florida which was created by the American Association of Caregiving Youth, Inc. This program is the first of its kind and provide direct services such as respite care, tutoring, support groups, and social activities. The Caregiving Youth Project has demonstrated positive psychological impacts like new friends with similar responsibilities, improved health, and better grades.


Potential Solutions

  • The startling lack of research means that there's great capacity for policy-based innovation. Let's explore some options. These are just from first thought.

  • Assign in-school case managers to determine caregiving status and home life dynamics for students, to lead support groups, and to organize in-school and after school activities.

  • Generate guidelines and training for education workers and government officials to distinguish youth caregiving from child neglect.

  • Train teachers and school administrators to work with this student population.

  • Establish a program like CYP at the Department of Health and Human Services in each state to create resources for local communities.

  • Involve clinicians in evaluating the continuity of care for patients through post-diagnosis screenings. This information could be used to inform in-school case managers or nurses of which families that need follow-up support. Clinicians could also refer eligible families to apply for programs like Structured Family Caregiving or other caregiving resources.

If you want to learn more about youth caregiving, I would suggest checking out this 2005 report and these nonprofit organizations: the American Association of Caregiving Youth, INC and the National Alliance for Caregiving.


Do you want to see more research-based posts like this one? Comment below!


References

50 State Source List (2014). (n.d.). Retrieved from https://www.caregiver.org/sites/caregiver.org/files/pdfs/state2014/50_State_Source_list_2014_FINAL.pdf

Carl, C. (2017, May 17). Can I get paid to be a family caregiver? Retrieved from https://thecaregiverspace.org/paid-to-be-a-family-caregiver/

Kagan, J. (2019, July 28). Respite Care. Retrieved from https://www.investopedia.com/terms/r/respitecare.asp

Solutions for Caregivers. (n.d.). Retrieved from https://www.uhcprovider.com/content/dam/provider/docs/public/policies/medadv-coverage-sum/solutions-caregivers.pdf

Support for Working Family Caregivers: Paid Leave Policies in California and Beyond. (n.d.). Retrieved from https://www.caregiver.org/support-working-family-caregivers-paid-leave-policies-california-and-beyond

There's help for caregivers, too. (n.d.). Retrieved from https://www.medicare.gov/blog/theres-help-for-caregivers-too

US Legal, Inc. (n.d.). Informal Caregiver Law and Legal Definition. Retrieved from https://definitions.uslegal.com/i/informal-caregiver/

US Legal, Inc. (n.d.). Caregiver Law and Legal Definition. Retrieved from https://definitions.uslegal.com/c/caregiver/

Women and Caregiving: Facts and Figures. (2003, December 31). Retrieved from https://www.caregiver.org/women-and-caregiving-facts-and-figures

Young Caregivers. (n.d.). Retrieved from https://www.apa.org/pi/about/publications/caregivers/practice-settings/intervention/young-caregivers

Youth Caregivers in the US. (2005, September). Retrieved from https://www.caregiving.org/data/youngcaregivers.pdf