Recognize and Support Caregiving Youth in Your Care

My brother Isaac is medically complex—diagnosed with a neurodevelopmental disorder that resulted in serious disabilities and developmental delays. He has cerebral palsy, is legally blind, has a seizure disorder, and breathes through a tracheostomy. Isaac is unable to verbalize his needs. He relies on his wheelchair to move around with the help of his caregivers. Isaac is fed and receives his multiple medications through a gastrostomy tube.

My mom worried that I wouldn’t be able to provide Isaac with the care he needed. So, when I was old enough to understand how his machines worked, or how to properly give him medication, she started sharing more of the responsibility with me. I started caring for Isaac when I was 11 and he was 8 years old. I assisted with his feeding, changing, and bathing. I helped with mobility and managed and administered his medications. I provided companionship and emotional support.

I wanted to help in any way I could and give my mom peace of mind when she had to leave the house, so that she would know he would be in good hands with me.

Mandy is not alone in her caregiving role. Unfortunately, there is no formal way of measuring the number of caregiving youth in the United States. The only national study was a 2004 telephone survey of 2000 caregiving households reporting an estimated 1.3 to 1.4 million caregiving youth ages 8 to 18 years.¹  There was always an adult caregiver in the home, so the study excluded caregiving children in single parent or grandparent homes. A 2020 survey of adult family caregivers acknowledged the existence of caregiving youth and projected up to 5.4 million of them based upon probing whether children assist in caregiving tasks.²  Again, the survey excluded households in which children are the sole caregivers. Florida adopted a question in its 2019 Youth Risk Behavior Survey that found among the 10 880 adolescents surveyed, 24% of middle schoolers and 16% of high schoolers self-reported some caregiving at least every week.³  The coronavirus disease 2019 pandemic added additional burden to caregiving youth, including more time spent caregiving during lockdown and social distancing, lack of respite because of school closures, added stress caused by family financial pressures, among others.⁴ 

Clearly Mandy has many caregiving peers. As pediatricians, we must recognize these kids. Advocacy needs to start with learning from our patients if they are caregiving, what responsibilities they have, and how they are managing their many roles.

How did I fit it into my schedule? Well, I really didn't! Caring for my brother was a lifestyle, and it was all I ever knew. It came naturally to me, so I did not have to adjust for him; it was our everyday life. We worked around Isaac's schedule and his needs.

Having someone that relies on you for basically all their needs can become very stressful and overwhelming. Most of the adults in my life, other than a handful of people, did not know what my home life was like. Regardless of my home responsibilities, I went above and beyond in school to make sure my parents didn’t have to worry about me. There were times when the responsibilities became too much, but I never used that as a reason to fall behind in school.

When I was filmed for the CNN Heroes with Connie, adults in my life became aware of my caregiving responsibilities. Looking back, I wouldn’t want to be treated any differently from the rest of my class. I am proud to say I was an honor roll student, top 5% of my class, Class of 2015 secretary, and had many more achievements. None of them were the result of any special treatment I received because of my situation.

At times I wished others knew how hard it was, but I always thought that someone out there had it worse than me; I had no reason to complain or ask for sympathy.

Although her caregiving responsibilities were stressful, Mandy excelled academically and socially. Others have not been so fortunate. We know that the stressors caregiving youth face put them at an increased risk for experiencing social, psychological, educational, and health related problems. Studies report these children have difficulty finding time to complete homework and were often absent or late to school.^5,6  Additionally, strained family relationships, exhaustion from communication with extended family members, and feeling isolated and misunderstood by peers were commonly reported by caregiving youth.^6,7  When youth lived with the care recipient, there was a significantly higher risk for depression and anxiety compared with noncaregivers.⁸  As such, caregiving responsibilities may significantly impact a young person during formative years of identity and brain development.

I learned about Mandy at a Caregiving Youth Project team meeting. Her family specialist was impressed with her maturity, attitude, abilities, and openness to receive support for her and her family. Beginning in middle school, Mandy participated in our Skills Building groups and activities, including our overnight camp. We conducted home visits and supplied gift cards to help during tough times. We found resources to build a ramp to make access into the home wheelchair friendly. When we obtained an authorization letter from the landlord for construction, his focus was on making Isaac’s ride smoother; ours was on making it easier for Mandy and her family.

I always remember Mandy not only caring for Isaac, but also journaling on the roof of their family home to have some time for herself. Mandy knew she wanted to go to college and attended our preparatory workshops. The American Association of Caregiving Youth (AACY) had an essay contest for students who were graduating - to no one’s surprise, except her, Mandy won!

It wasn’t just the teachers at school who didn’t know about my situation or how to help. Our first pediatrician was close to our home and on our Medicaid provider list. However, we felt that we did not receive adequate care or communication. It seemed as though individuals with private insurance had priority. Eventually, we switched to a pediatrician further from home. This made transportation more difficult, but we were pleased with the quality of care from the very first encounter. Dr G became our family pediatrician. Unlike others, she interacted with Isaac as if he was her own son and treated us as if we were family. She spoke directly to Isaac and looked him in the eye. We were thankful that God brought us to Dr G! Through her, we were connected with more services and support for Isaac and our whole family.

After about a year and extensive paperwork, Isaac was approved for in-home nursing. This allowed me more time for activities, to spend time out of the house and outside of my normal routine. At times it felt weird, as if I didn't want the freedom. I was so used to being a part of Isaac's everyday life, so when I had the opportunity to be a “normal” teenager, I didn't know how to act or distance myself from my home life.

Although we were lucky to get connected with Dr G, I want all pediatricians and providers who work with kids to get to know and understand the whole family and to explore ways to help. What works for one family may not help another! I believe that establishing an effective caring relationship should be the goal for all pediatricians and health care providers.

Mandy’s story illuminates the successful relationship between health care providers and patients. Fortunately, Dr G. provided excellent care for Isaac and assisted with resources for the family. Research demonstrates that caregiving youth desire support from professionals, including training, guidance, and opportunities to engage with peers in similar situations.^9,10  Pediatric providers are uniquely positioned to identify and support caregiving youth. However, little is known about their perceptions of this population. We created and administered a survey to pediatric health care providers to explore their understanding of caregiving youth within their practices. Data from 85 providers (eg, pediatricians, nurses, physician assistants, etc.) indicated that the majority were unaware of caregiving youth within their practices. Additionally, there are significant barriers to identifying them within clinical settings, including provider attitudes, lack of a validated screening tool, and lack of supportive resources. The findings underscore the importance of increasing provider awareness as a means of increasing identification and support for caregiving youth in the United States.

In my role as a psychology professional working within the primary care setting, I have seen how impactful it can be when a medical provider identifies a youth caregiver and we are able to collaborate to provide psychosocial support. Youth can benefit from learning tools to manage stress and other emotional concerns. Simply acknowledging their role and that they are not alone may go a long way.

I remember when I first heard about AACY, I don’t think I realized how groundbreaking the organization was. As a pediatrician, I hadn’t thought beyond the individual child who was struggling through challenging circumstances at home. In the United States, AACY is the sole organization dedicated to supporting caregiving youth, placing us far behind other developed nations. An international analysis classifying countries according to how developed their support systems are for “young carers” placed the United States starkly lower than other similar countries because of the lack of awareness, policy, legislated support, and legal rights for caregiving youth.¹¹  The United Kingdom has had legislation supporting their youth for decades. Current law in the United Kingdom requires that caregiving children receive supportive services delivered through their national network of support services.¹¹  Children in Australia can receive payments for time spent caregiving through their bursary program (Young Carer Bursary | Young Carers Network). Our US team is eager to begin to work toward even basic legislative recognition for caregiving youth.

The direct service program of AACY works within the systems of healthcare, education (including formally with the local school district), and the community to identify caregiving youth. AACY provides prioritized needs-driven wraparound services in school, out of school, and at home. Fun activities are a highlight as caregiving youth need time to have a break and be a kid, which is so important for healthy development. Program outcomes include a high school graduation rate of 98% with more than 90% going on to post-secondary education, often in healthcare. The emphasis on the caregiving youth and strengthening the family is the cornerstone of work at AACY. Anything that reduces the stress on the family also relieves the youth.

Additionally, the AACY team works to educate others about the issues facing this population and the importance of valuing their role. One day there must be state and federal legislation to recognize and support this growing yet still hidden population.

Other models of supporting caregiving youth exist in the Unites States. Kids Are Caregivers Too (https://www.kidsarecaregiverstoo.com/) was founded by a Virginia family after their sons cared for their grandmother with Alzheimer’s and provides a platform to connect caregiving youth. Some disease specific organizations, such as the ALS Association (https://www.als.org/navigating-als/resources/Youth-Education), provide educational resources for children who are impacted by their loved one’s disease. Hidden Helpers (https://hiddenheroes.org/resources/hiddenhelpers/) supports military children caregiving for family members injured in service to our nation.

Connie and everyone in the Caregiving Youth Project have helped me and my family in more ways than they will ever know. I was given support in school with tools to relieve stress and homework help when needed. I was provided with activities such as camp to take me out of my everyday responsibilities and focus a little on myself. They also provided my family with resources and services to help our situation. It was such a relief when Connie came into our life. I said to myself “finally someone who understands me and could relate to my family more than anyone else.”

• Routinely ask your patients about caregiving. Families may not volunteer this information, so ask direct questions. Suggested phrasing is, “Do you provide care for someone in your family or household who is chronically ill, elderly, or disabled with activities they would have difficulty doing on their own?” Inquire especially when family or social history reveals health or mental health issues. Questions may include, “What role do you take on to help with [person’s] care?” If a child confides that they are caregiving, praise and acknowledge their contributions and probe to explore impact and potential areas for support.

• Advise parents and grandparents about the potential impact on their caregiving children. Family may not realize the amount of time children devote to caregiving tasks and may report less time spent than the children do.¹²  Additionally, relatives may not be aware of the toll that caregiving may take on mental well-being. Encourage families to talk openly with children about limitations on the child’s ability to fully participate in school, extracurricular and leisure activities.

• Refer caregiving youth to school nurses, guidance counselors and others who can provide support. The child’s school should be aware of the circumstances at home to assure that absenteeism, tardiness, distraction, fatigue and missed or incomplete schoolwork that may be related to the child’s responsibilities is met with support rather than punitive measures.

• Be creative in identifying potential supportive services for caregiving youth, both within and outside of the health care system. School based counselors may be the most accessible for caregiving youth given their time restrictions outside of school hours.

• Foster relationships with community support services to strengthen caregiving families.

• Inform legislators, religious and business leaders, the public and professional groups. By raising awareness throughout communities, caregiving youth will emerge from the shadows to be recognized as a vulnerable population. Legislative advocacy is needed to both eliminate clauses that restrict children under the age of 18 from receiving the same benefits that adult caregivers receive as well as create targeted support for their specific needs.

• Develop an AACY affiliate in your community. A nonprofit organization that provides support for adult family caregivers is a natural fit for inclusion of all ages of caregivers. AACY offers a formal relationship including start up tools and ongoing development support.

• Join with disciplines already engaged in this topic. There is a growing cohort of US researchers studying caregiving youth in varied fields, including social work, nursing, human geography, psychology, etc.

• Conduct research to establish best practice and validated measures to better identify and support youth in the clinical setting.

• Include issues of caregiving youth in healthcare education.

• Inform schools about caregiving youth and the academic challenges they may face.

• Provide opportunities for providers and trainees (both pediatric and adult) to do home visits for caregiving families.

We thank Toni Chanroo, MD, MPH for her leadership in creating and disseminating the survey describing perceptions and attitudes of healthcare providers regarding caregiving youth.

AACY

American Association of Caregiving Youth