By Melinda Kavanaugh
Walking into Rick’s house, I saw his wife struggling with his hospital bed in the living room, looking drained. I was the social worker doing an in-home visit to assess care needs.
When I sat down to talk to her about the stress of caregiving and what kinds of support she needed, I noticed their son carrying several cans of liquid over to Rick. Having worked with many patients who are unable to swallow on their own, I knew these were going to be given to Rick via the feeding tube inserted into his abdomen.
“Do you need help?” I asked.
“No, I know how to feed him and clean the tube on my own,” he said. He was 10 years old.
I realized at that moment he was also a caregiver. I also guessed that no one recognized this, or the specific ways it could be affecting him.
How many times have you seen the difficulties of caregiving? Walked into a home and thought, “How does this family do it?” Like me, you may have assumed the role of caregiver fell only to the adult in the home — unaware that children and youth are often extremely involved in day-to-day care. Yet it is estimated that 1.4 million children and youth ages 8-18 exist on the fringes of caregiving with little acknowledgement or support even from those most engaged with the family during this time — social workers, nurses, and chaplains.
We are still learning about caregiving youth — the caregiving experience through their eyes, what they do, and how it affects them. There is astonishingly little attention paid to them. Recently, after completing a review of the literature, I discovered that only 22 research papers have been published on youth caregivers; this is in comparison to thousands of research papers that address adult caregivers.
Here is what we know thus far about youth caregivers. Their school performance suffers. They feel socially isolated. Adults tend to misunderstand their behaviors, such as falling asleep at school because they were up all night with a parent. And they have few supports.
So, where does spiritual care come in? How can chaplains engage and support these youths and their families? Here are two ways to begin adding these youths to the range of supports and services provided by your organization:
First, simply acknowledge they exist. It sounds simple, but often the best thing one can do is see the life of another and bring attention to their needs. It’s very likely that you have met caregiving youth. In fact, approximately 3.2 percent of households with children include a child tasked with caregiving duties. These duties can be intense and extend over years, including bathing, dressing, getting in and out of beds and chairs, toileting, and feeding.
These caregivers receive little to no acknowledgement in caregiving policy, either national- or state-based, and unlike their adult counterparts, have no established rights as a caregiver. Their voices are rarely heard.
Acknowledge them by noticing the youth in family meetings or in hospice settings. Let them know they can talk to you if they are caregiving. Remember, many families who rely on youth caregivers feel shame, guilt, or a concern for child welfare if they discuss the role their child plays, so they may not bring it up or ask for support
Caregiving often represents intense love and support family member feel for each other. Many families and the youth themselves feel not only responsibility but pride in the care they provide. However, youth still need time away, interaction with peers, and, in many cases, clear education and skills to better perform the tasks they are given. By spending time with these families, you let them know you care, are interested, and will help them process or brainstorm ways to balance the care needs with youth education, social, and emotional needs.
Second, make your institution a youth caregiver-friendly community. Sixty percent of youth caregivers in my studies said caregiving affects their school performance and attendance. Many felt isolated from peers and adults. They had lost friends who didn’t understand what they were going through in the after-school or weekend hours. How can your institution provide respite and care support for these isolated youth?
We know youth involved in caregiving grow up faster and have fewer outlets than non-caregiving youth. Take the opportunity to ask about caregiving, acknowledge the role youth may play, and seek out ways to provide respite and youth support programs, while creating an atmosphere of support for the family as a whole.
Several organizations are starting to take notice of these youths and may serve as important resources for you and caregiving youth. The American Association of Caregiving Youth has established numerous school-based programs and can be a crucial resource for clergy across the country. Also, many diseases-based organizations are developing youth supports for caregivers, including the ALS Association, the Huntington’s Disease Society of America, and the MS Association.
Melinda Kavanaugh, Ph.D., LCSW, is an assistant professor of social work at the University of Wisconsin-Milwaukee.
