The Challenges of Young Caregivers
In 2015, the National Alliance for Caregivers and AARP released a report which states that nearly 43/5 million adults in the United States provide some kind of “free” care for another adult or child in the last 12 months. While there has been much attention paid on those adults that provide care, little attention has been paid to the young people who provide care for loved ones living with mental or physical health challenges. This, despite the fact that somewhere between 4% and 12% of youth ages 8-18 live in households where there is a parent with a chronic illness, or roughly 1.3 to 1.4 million kids. An additional 3.6-5.5 million young adults aged 18-25 are also estimated to be providing care, many of whom are former child caregivers. Because of the aging population in the U.S.and advances in technology, the number of adults who will need assistance managing their health and their lives is likely to grow exponentially in the coming years.
But who exactly are young caregivers?
- Young caregivers are those youth ages 8-18 who provide significant or substantial assistance to loved ones, often parents, grandparents, or siblings that they live with, who need help due to physical or mental illness, disability, substance abuse, or other conditions.
- In the United States, the average age that a child begins providing this type of care is somewhere around 12 years old.
- More than half live in single-parent homes.
- Most provide care for their mothers.
- Some young caregivers take on tasks such as personal and medical care and translation in medical settings.
- Others take on duties such as household management, supervision of siblings, or providing emotional support.
Young Caregivers Face Unique Challenges
Children who are in a caregiving role face a unique set of challenges that their peers are often not facing. Studies on young caregivers found that they are affected in many adverse ways, including psychological stress, developmentally inappropriate behaviors, academic issues, friendship issues, and struggles with their own mental and physical health. And this makes sense. Young caregivers are focused on providing care during a time when most of their peers are focused on school & social lives. While their friends may be attending a school dance, caregivers may be at home supervising siblings or preparing meals. While their peers are thinking about attending colleges across the country, young caregivers are often wondering if they can leave home to attend college at all. As a result, young caregivers are left to try to balance their role as children, while also feeling a sense of duty to their loved ones.
How to support young caregivers
While young caregivers often face an uphill battle, it’s not all doom and gloom. There are several things we can do to support the well-being of young caregivers.
- Studies have found that the reaction and support young caregivers receive within their families can be hugely protective against many of the adverse outcomes. I’ve seen this in my own experience caring for my parents. While I did struggle with many of the issues outlined above, having a strong, supportive family and network of support made a huge difference in my ability to navigate these challenging times. If this is something your own family is struggling with, I encourage you to seek professional help in creating a system that supports the health and wellbeing of all family members, but especially the youngest members.
- While there are many potential adverse effects, many young caregivers also report they gain a sense of fulfillment, particularly when they are able to build an effective system of support. Knowing there are other people there age who are also providing care can be hugely beneficial. Our hope is to help make some of these connections here at Caregiver Collaborative. As someone who had a wide network of friends who had parents with MS, I can attest to the power of this. I encourage you to reach out to local organizations and inquire about opportunities to send kids to summer camp, support groups, or other ways for them to meet kids in similar situations.
- Schools can also play a role in supporting young caregivers. Young caregivers are 40% more likely to drop out of school due to the demands they face in their role. School nurses, social workers, and other professionals should assist young caregivers and their families in resource planning, parenting resources, raising awareness of caregivers, and providing professional resources for educators. When designing services that might help young caregivers in your school, be sure to include youth in the decision making process as this is absolutely integral to the successful implementation of any plan. In my own high school and college experience, I can tell you that the support and empathy I received from many of them did not go unnoticed. Simple things like extending deadlines or providing opportunities to get academic support during odd times made my educational experience not only more manageable, but more fulfilling for me as a student, and it inspired me to continue my education through grad school, becoming a social worker so I could also advocate for the many barriers young people face in education, including our young caregiving population.
- Finally, healthcare workers can also make changes to the ways they approach families with young caregivers. Young caregivers are often overlooked, but healthcare workers are encouraged to take a family-centered approach, helping the child understand the illness and the impact that it will have on their family. Rehabilitation staff can work to include the child in understanding the role they have in caregiving, and ensure they feel comfortable with the tasks. This is particularly true if the young person will be providing a substantial amount of care such as mobility tasks, help with medication, or help with intimate tasks like showering or toileting.
Despite limited research and support services directed at this population, providing support for young caregivers really boils down to three simple things:
- Be aware that young caregivers exist. Look for them, notice them.
- Once you know them, ask them the right questions. Actively listen, understand their needs and hopes for the future.
- Act on what you say. If you offer support or connection, be prepared to follow through.
REFERENCES:
- Barber, C. (2013). Meeting the support needs of young caregivers. British Journal of Healthcare Assistants. 7(1), 16-20.
- Bjorgvinsdottir K, Halldorsdottir S. Silent, invisible and unacknowledged: experiences of young caregivers of single parents diagnosed with multiple sclerosis. Scand J Caring Sci. 2014 Mar;28(1):38-48. doi: 10.1111/scs.12030. Epub 2013 Mar 28. PMID: 23550661.
- Levine, C., Hunt, G. G., Halper, D., Hart, A. Y., Lautz, J., & Gould, D. A. (2005). Young adult caregivers: a first look at an unstudied population. American journal of public health, 95(11), 2071–2075. https://doi.org/10.2105/AJPH.2005.067702
- Li, L., & Lee, Y. (2020). Caregiving Choice and Caregiver-Receiver Relation: Effects on Psychological Well-being of Family Caregivers in Canada. Canadian Journal on Aging / La Revue Canadienne Du Vieillissement, 39(4), 634-646. doi:10.1017/S0714980819000825
- Sieh, D.S., Dikkers, A.L.C., Visser-Meily, J.M.A. et al. Stress in Adolescents with a Chronically Ill Parent: Inspiration from Rolland’s Family Systems-Illness Model. J Dev Phys Disabil 24, 591–606 (2012). https://doi.org/10.1007/s10882-012-9291-3
Wepf, H., Leu, A. Well-Being and Perceived Stress of Adolescent Young Carers: A Cross-Sectional Comparative Study. J Child Fam Stud 31, 934–948 (2022). https://doi.org/10.1007/s10826-021-02097-w
1 Comment