Author: lchena

Youth Caregivers in the United States

Caregiving in the United States has had some improvement in the resources and financial aid allocated to help informal caregivers, but America has still not identified and supported the alarmingly increasing number of youth caregivers.

Image from Unsplash

Care giving in America

According to John Hopkins University, a caregiver is a person who provides direct care for someone who has a short or long-term limitation due to an injury, illness, or some other condition (McQuay) As we learned in class, informal or unpaid caregivers have become a hidden foundation for the long-term care of family members and can impact the carer’s health due to the added stress and responsibility. In the United States, some policies and programs are in place to help caregivers, but all these resources fail to address or aid a hidden group of caregivers, children under the age of eighteen. Children are oftentimes associated as the ones who receive care and support from an adult figure in their life, but according to a 2020 study conducted by AARP on family caregiving in the United States, there are approximately 5.4 million youth caregivers whose roles are reversed as they care and assist their family members  (AARP Family Caregiving, 2020). These youth caregivers are placed in a unique situation as they learn to juggle school and any house and care responsibilities they must bear. Those same stressors and negative health effects we discussed in class that affect adult caregivers are also impacting children carers, having a long-lasting impact on their development and ability to learn.

There are approximately 5.4 million youth caregivers whose roles are reversed as they care and assist their family members

AARP Family Caregiving 2020
Image from iStock

First Experience with a Youth Caregiver

(No names are mentioned in order to respect her privacy and is being included with her permission)

The idea of a child taking over an adult’s responsibilities is not uncommon in the area where I grew up, but I saw just how much the role of a caregiver plays in a student’s life through one of my close friends in high school. There isn’t a specific instance that could fully encompass the emotional toll being a caregiver had on her, but to give you an idea of the physical strain she went through, I will explain what a day in her life looked like. She is the ninth of thirteen children, but because of her interest in medicine along with her determination to stay in school, the responsibility of caring for her mother, younger siblings, nieces, and nephews fell to her. Her morning began around five in the morning as she prepared lunch for her older brothers who went to work before she woke up her younger siblings. Breakfast was prepared for her mother along with her morning medication and helped dress the children who would be staying at home as they were still too young for school. By seven in the morning, she would be heading out to drop off her siblings at their perspective school before rushing to the high school. She would spend the first half of the day in her AP classes before heading out to her job as a server after lunch. Her siblings would ride the bus in the afternoon, and she would finish her shift in time to prepare dinner and help ready her mother for bed before helping her siblings with homework. Once everyone was settled and fed, she would sit down to work on her homework before repeating this stressful schedule the next day. There were some days when she would miss school to take her mother or siblings to an appointment. While most high school students had the opportunity to attend games or hang out with friends, she was spending her weekends cleaning the house and helping care for her siblings and mother. She worked hard throughout high school to be able to attend university, and when she left to study, all the caretaking responsibilities fell on her two younger sisters at the age of 13 and 14. This situation is not an isolated occurrence and is common to see these responsibilities fall to the daughters of families beginning at ages as young as eleven years old.

Image from pexels by Kamaji Ogino

Health Impact on Youth Carers

According to research conducted by Kavanaugh et al, the responsibilities that young carers take on expose them to multiple negative health and education outcomes. Studies have shown that child caregivers are more likely to be anxious and depressed than children who are not caregivers. This, coupled with the fact that a disproportionate amount of youth caregivers in the United States come from lower-income families, means that these kids are also less likely to be able to seek help from the healthcare system  (Kavanaugh, 2016). Learning and development are also impacted by their role as caregivers leading students to have problems focusing during class or causing them to miss school due to their caretaking responsibilities. One study, conducted by the Bill and Melinda Gates Foundation found that 22% of young adults that drop out of school cited caring for a family member as the main reason for their decision  (Gunnerson, 2021). Social development is also affected as youth caregivers are more likely to experience isolation as they are not able to participate in social activities with their peers due to their workload. They could also isolate or become aggressive toward any authoritative figure who could remove them from their home. “Caregiving is not on people’s radar,” said Siskowski, one of the scientists studying the health effects on youth carers. “What they do is behind closed doors, so it’s out of sight, out of mind.” The need for youth carers to keep their situation a secret can increase their anxiety levels and disrupt their sleep What they do is behind closed doors, so it’s out of sight, out of mind (Diaz et al, 2007). This need for secrecy also means that the 5.4 million reported by AARP is probably an underestimate  (Lewis, 2021).

“What they do is behind closed doors, so it’s out of sight, out of mind.”

Connie Siskowski, scientist studying health effects on youth caregivers

Resources for Youth Caregivers

Despite the large number of children impacted by this situation, the current American policies and programs exclude any caregivers under the age of 18 from receiving any aid or access to resources. There are non-profit organizations such as the American Association of Caregiving Youth which was founded in Florida dedicated to supporting children who have the responsibility of being a caregiver and help to provide them with resources to aid the family and work with the school system to help the student succeed in their classes, but there is no centralized system dedicated to identifying and supporting this hidden group of caregivers leaving the responsibility to fall on the individual school systems and more specifically, the teachers and counselors  (Armstrong-Carter et al., 2021). The first step in helping youth caregivers is working to recognize them and their increasing numbers in legislation, helping them by providing them with information and emotional support, and working with schools to accommodate students with these added responsibilities.

Works Cited

AARP Family Caregiving. “Caregiving in the U.S.” (2020) Web. Mar 27, 2023. https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf

Armstrong-Carter, Emma, et al. “The United States should Recognize and Support Caregiving Youth.” Social Policy Report 34.2 (2021): 1-24. Web. https://doi.org/10.1002/sop2.14

Diaz, Naelys, et al. “Latino Young Caregivers in the United States: Who Are They and What Are the Academic Implications of This Role?” Child & Youth Care Forum, vol. 36, no. 4, 2007, pp. 131–40, https://doi.org/10.1007/s10566-007-9040-4.

Gunnerson, Tate. “A growing phenomenon, youth caregivers need recognition, support.” www.heart.org. Nov 3, 2021. Web. Mar 27, 2023. https://www.heart.org/en/news/2021/11/ 03/a-growing-phenomenon-youth-caregivers-need-recognition-support.

Kavanaugh, Melinda S. “Unacknowledged Caregivers: A Scoping Review of Research on Caregiving Youth in the United States | SpringerLink.” Springer Link (2015): 29-49. Web. Mar 27, 2023. https://doi.org/10.1007/s40894-015-0015-7

Lewis, Feylyn. “Youth Caregivers: Before, During, and After the Pandemic.” generations.asaging.org. Oct 20, 2021. Web. Mar 27, 2023, http://generations.asaging.org/ youth-caregivers-and-pandemic.

McQuay, Jessica. “What Is A Caregiver? | Johns Hopkins Bayview Medical Center.” Web. Mar 27, 2023, https://www.hopkinsmedicine.org/about/community_health/johns-hopkins-bayview/services/called_to_care/what_is_a_caregiver.html.

Social Determinants of Health for Migrant Farm Workers

Migrant Workers picking strawberries Source: Unsplash1

The healthcare system in the United States boasts some of the most cutting-edge technology and research, but this high quality of care is not evenly distributed. For minorities, such as Latinos living in rural areas, their health is controlled by social, economic, and political determinants. We have studied these social determinants of health in class, and learned that determinants are:

“The conditions in the environments where people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality of life outcomes and risks.”

Healthy People 20302

While I agree that the facts and statistics about the number of people affected are important to know, I would like to share a couple of stories that show the people hidden between all those numbers. I was reminded of them after having read the Nature article by Amy Maxmen which discussed how farm worker disparities are due to their social determinants of health.3

Working at a berry farm for three years was a wonderful opportunity because I got to learn about agriculture and work alongside 200+ workers from Mexico in order to harvest over 400 acres of strawberries, blueberries, blackberries, peaches, and muscadines. The work was not for the faint of heart because it required seven days work weeks in blistering humid Arkansas heat and resulted in millions of pounds of produce each season. This became even more challenging when the company limited workers’ contact with the outside world in an attempt to reduce the chances of the Corona virus running rampant in the small rooms that housed anywhere from six to fifteen people. It was amidst all the craziness that comes with harvesting crops, that I got to know some of the workers such as Rosita and Jose and realized just how many adversities they must overcome in order to receive medical care.

Overview look of lake and blackberry field Source: Lucero Chena4

Rosita, The Spokeswoman

If you ever need someone to control a group of over 200 rowdy adults with one word, Rosita is the one you call. She was the unofficial spokeswoman for all the workers and was the first to voice everyone’s concerns about the COVID vaccine when it was offered at the farm. All they were told was that if any worker wished they to receive the vaccine they could do so for free. This news though exciting for some was also troublesome for others because they wanted some more information before making a decision. A week before the vaccine was to be administered, I was tasked with asking everyone whether or not they wished to receive the vaccine but was warned by my supervisor to not offer my opinion or answer questions because I was not a medical professional and could be held liable if something were to happen. Rosita was the first to bombard me with questions, but at that time, all I was able to share was that physicians are required to inform a patient of any possible side effects and must sign an informed consent form.5 The only problem with that is that the doctor had sent said forms, but they were in English. It took a lot of research and persuasion before the company agreed to prepare a meeting in which a doctor would address the workers’ concerns and hand out a Spanish version of the possible side effects.

Rosita’s story is just one of millions that highlight how language, education access, and socioeconomic status play a role in a person’s health. There are many Non-English speaking migrants that are not comfortable going to the doctor out of fear that the appointment or medication may be too expensive or based on previous frustrations from trying to communicate with the doctor. Many Latinos who do not speak English are less likely to receive medical care6 or are less informed of the medical situation due to the language barrier.7

Lake scene from farm where I worked Source: Lucero Chena8

Jose, The Veteran

By my second year, I had become the farm medic and would treat any minor injuries or acquire medication during the first year when the farm was on lockdown. I would often help the workers before or after their shift, so it wasn’t surprising that Don Jose, a man who has been working at the farm for over twenty years, was there to greet me at six thirty in the morning as I opened up the store for the day. Cuts, scrapes, and bruises are common occurrences at a farm, but when Jose began to limp into the store to ask for pain medication, I knew that the situation was more serious than he was letting on. It took a lot of convincing and promises that he would not have to miss work before he finally explained that he had hit his leg had hit a nail on the edge of a trailer when he was loading boxes of fruit, and when he finally showed me his shin, I informed my manager of the situation. During his lunch break, he was taken to a clinic an hour away where the doctor informed the other farm interpreter that the wound on his shin had become infected and would need to be cleaned daily for two weeks before asking he schedule a follow up appointment. He was told to rest his leg for three days and keep it elevated to reduce the swelling, but Jose went back to work the next day after I disinfected his wound. He continued to work with his injured leg until the end of that harvesting season where he returned to Mexico to treat his wound.

Aside from the vulnerability due to language barriers and lack of access to education, farm workers also face physical, political, and economical barriers that prevent them from seeking adequate care. Many might wonder why Jose didn’t just inform someone of his injury immediately after it occurred. The reason for that is out of fear that his injury would put him out of work and cost him a lot of money to get it looked at. In the agriculture business, migrant workers are supposed to be paid a flat hourly rate and a piece rate pay, but there are many owners who violate these wage laws or decide to return the worker to their country if they are not picking quick enough.9 Farm owners are also not required to provide healthcare insurance for their workers because they are seasonal employees. All of these circumstances drive many workers like Jose to work through injuries instead of seeking medical care.10

Conclusion

Although I focused on the social determinants of health of two people and how their categories affected their healthcare outcomes, these determinants apply to everyone’s life. Research continues to show us the relation between the social determinants and the disparities in healthcare for minority groups such as Latinos. These disparities were especially brought under scrutiny during the COVID pandemic, but now having acknowledged that they exist, it is time to start work to eliminate these disparities and make healthcare more accessible for everyone. I know that when those changes do come, they will be because of people like Rosita and Jose, not because of some statistics we read somewhere.

Works Cited

1Mossholder, Tim. “Strawberry Picking.” Unsplash, 21 July 2021, https://unsplash.com/photos/Kx060cRsmt0.

2“Healthy People 2030,” U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion, https://health.gov/healthypeople/objectives-and-data/social-determinants-health

3Maxmen, Amy. “Inequality’s Deadly Toll.” Nature News, Nature Publishing Group, 28 Apr. 2021, https://www.nature.com/immersive/d41586-021-00943-x/index.html

4 Chena, Lucero. “Lake and Blackberry Field View.” 6 June 2020.

5 Commissioner. “Pfizer-BioNTech Covid-19 Vaccines.” U.S. Food and Drug Administration, FDA, https://www.fda.gov/emergency-preparedness-and-response/coronavirus-disease-2019-covid-19/pfizer-biontech-covid-19-vaccines.

6Taira, D A. “Improving the Health and Health Care of Non-English-Speaking Patients.” Journal of General Internal Medicine, U.S. National Library of Medicine, May 1999, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1496581/#:~:text=Non%2DEnglish%2Dspeaking%20patients%20receive,care%20than%20English%2Dspeaking%20patients.

7Al Shamsi, Hilal, et al. “Implications of Language Barriers for Healthcare: A Systematic Review.” Oman Medical Journal, U.S. National Library of Medicine, 30 Apr. 2020, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7201401/#:~:text=Other%20studies%20found%20that%20among,a%20problem%20understanding%20their%20healthcare.

8 Chena, Lucero. “Gazebo Over Lake.” 6 June 2020.

9 Robinson, Erin, et al. “Wages, Wage Violations, and Pesticide Safety Experienced by Migrant Farmworkers in North Carolina.” New Solutions: a Journal of Environmental and Occupational Health Policy : NS, U.S. National Library of Medicine, 2011, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3291018/.

10Bail, Kari M., et al. “The Impact of Invisibility on the Health of Migrant Farmworkers in the Southeastern United States: A Case Study from Georgia.” Nursing Research and Practice, Hindawi, 1 July 2012, https://www.hindawi.com/journals/nrp/2012/760418/.