December 12, 2017

The Advocate's Toolbox

Caregiving Youth: Resources and a YA Booklist

160930_caregiversHayley Kincain, a teenage character In Laurie Halse Anderson’s The Impossible Knife of Memory (Penguin, 2014), has spent five years caring for her father, who has Post Traumatic Stress Disorder (PTSD).  Meanwhile, Alex, a teen in Annie Cardi’s The Chance You Won’t Return (Candlewick, 2014), spends much of her time worrying about her mother’s delusions. Kendra, from Jennifer Brown’s The Perfect Escape (Little, Brown, 2012), constantly tries to navigate her brother’s Obsessive Compulsive Disorder (OCD).

These characters represent a specific, often overlooked, group of young people navigating adolescence. Caregiving youth, according to the American Association of Caregiving Youth, are “children and adolescents who are 18 years of age or younger and who provide significant or substantial assistance, often on a regular basis, to relatives or household members who need help because of physical or mental illness, disability, frailty associated with aging, substance misuse, or other condition.”

Current estimates suggest that there are 1.3 million households with caregiving youth, or 3.2 percent of all households with children between the ages of eight and 18. Child caregivers tend to live in homes with lower incomes, indicating the role economic factors often play. Families with higher incomes tend to have better access to health care and support services, easing the burden some children carry.

Often, caregiving youth are responsible for some immediate needs of a family member, such as bathing and helping with daily tasks. However, even if a teen does not have specific caregiving responsibilities, challenges such as mental illness, addiction, and chronic illness and disability can and do have an impact on all household members.

For example, teens with a parent or sibling struggling with mental illness often cope with instability in the home, unpredictable moods and behaviors, and frequent emergency situations. If a parent enters into a major depressive cycle, for instance, and has difficulties getting out of bed, many children must fend for themselves. Often, they will do additional housework and be responsible for their own care, while also tending to a parent and, sometimes, younger siblings.

The organizations Children of Parents with Mental Illness and the National Alliance on Mental Illness (NAMI) address the challenges of children and teens living with parents coping with mental illness and offer support resources. Youth find themselves as caregivers in many situations, but the focus of this article is on mental illness. Current statistics indicate that one in four adults experience some type of mental health issue in the course of their lifetime, which means that many children and teens also feel the impact. In addition, one in five children between 13 to 18 have or will have a mental health challenge, according to NAMI, and their siblings often assume a caregiving role.

These youth caregivers need information, support, and care of their own, as the responsibility can be a tremendous strain for those also navigating the complexities of adolescence. Many are asked to step into roles beyond their means and developmental capacity.

What is it really like for these young people? These YA literature titles shed some light. While helping some readers develop understanding and empathy, these books provide affirmation and support for those readers who are caregivers themselves. 

Books with Teen Caregivers

Anderson, Laurie Halse. The Impossible Knife of Memory (Penguin, 2014). Hayley hopes that moving home will help her and her father deal with his PTSD.

Bliss, Bryan. Meet Me Here (HarperCollins, 2016). Thomas is from an Army family and plans to join up. But his brother came back with PTSD, and that rattles Thomas’s plans.

Brown, Jennifer. Perfect Escape (Little, Brown, 2012). Kendra struggles to find her own place in the world while struggling with her brother’s OCD.

Cardi, Annie. The Chance You Won’t Return (Candlewick, 2014). Alex wants to be thinking about her driver’s license and boys, but instead she is worried about her mother’s delusions.

Doller, Trish. Something Like Normal (2012). Travis returns from a tour of Afghanistan and navigates family problems and PTSD while trying to resume his life at home.

Lord, Emery. When We Collided (Bloomsbury, 2016). Jonah falls in love with Vivi, who has bipolar disorder.

Nolan, Han. Crazy (Harcourt, 2010). Jason cares for his father, who grapples with mental illness, while trying not to draw attention to his situation.

Omololu, C. J. Dirty Little Secrets (Walker, 2010). Lucy has been keeping a secret: her mother is a hoarder. When her mother dies, Lucy tries to prevent the world from finding out what her life has been like.

Peters, Julie Ann. Define “Normal” (Little, Brown, 2000). Antonia signs up to be a guidance counselor and finds herself trying to help Jazz, who is her polar opposite socially. But they have struggles in common.

Polsky, Sara. This is How I Find Her (Albert Whitman, 2013). Sophie lives in the shadows of her mother’s bipolar disorder until a suicide attempt lands her mom in the hospital. Sophie learns that there is life beyond being a caregiver.

Quick, Matthew. Every Exquisite Thing (Little, Brown, 2016). Nanette and Alex, both struggling with depression, bond over poetry and a book called The Bubblegum Reaper.

Reed, Amy Lynn. Crazy (S. & S., 2012). Connor is falling in love with Izzy, who has bipolar disorder.

Rowell, Rainbow. Fangirl (St. Martin’s, 2013). Cath wrestles with own anxiety disorder as she goes to college, leaving behind a father with bipolar disorder who has never been alone.

Schindler, Holly. A Blue So Dark (Flux, 2010). Aura’s artist mother is schizophrenic, which makes Aura equate creativity with mental illness—and avoid acting on her own talents.

Sones, Sonya. Stop Pretending What Happened When My Big Sister Went Crazy (HarperCollins, 1999). Cookie’s older sister is suddenly hospitalized with a mental illness.

Whaley, John Corey. Highly Illogical Behavior (Dial, 2016). What begins as a misguided experiment turns into genuine friendship as Lisa and Clark step into the world of agoraphobic Solomon and learn what it’s like to care for someone with mental illness.

Additional Resources for Caregiving Youth

Organizations:

American Association of Caregiving Youth

Children of Parents with a Mental Illness

National Alliance on Mental Illness

National Institute of Mental Health

Articles and reference:

ALAN: YA Novels about Mental Illness

Byrne, Jaimie. Children Living with a Mentally Ill Parent, Friends for Mental Health site

“Help for a ‘Hidden Population’ of Caregiving Kids,” CNN

Mechling, Brandy M. “The Experiences of Youth Serving as Caregivers for Mentally Ill Parents:  A Background Review of the Literature” from  The Journal of Psychosocial Nursing and Mental Health Services 49(3), February 2011

Sherman, Michelle D.  “Reaching Out to Children of Parents With Mental Illness,Social Work Today Vol. 7 No. 5, September/October 2007

Tussing, Heidi L. and Deborah P. Valentine. “Helping Adolescents Cope with the Mental Illness of a Parent Through Bibliotherapy.” Child and Adolescent Social Work Journal, Vol. 18, Issue 6, December 2001.


Karen Jensen, YA services coordinator at the Public Library of Mount Vernon and Knox County, OH, is the creator of the blog Teen Librarian Toolbox.

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