We all bring our beliefs, practices, and values into every aspect of our lives, from our work to friendships and romantic relationships. These characteristics also play a significant role in the caregiving experience—whether you receive care or assist someone with everyday activities.
We’ll explore what caregiving looks like across different cultures, including our similarities and differences.
Cultural Traditions in Caregiving
Since 2006, Tina Aswani Omprakash of New York has lived with Crohn’s disease, a painful and debilitating inflammatory bowel condition. Her illness is now in remission, but Omprakash’s symptoms were once so severe that they forced her to resign from a career on Wall Street and move back home. Her mother became her full-time caregiver, attending to her daily needs.
Some days Omprakash had trouble with everyday activities that we take for granted—feeding herself, taking a shower, and even getting out of bed. Although she was grateful to have her mother’s support, as a South Asian woman and the eldest sibling in her family, the experience also unearthed complex cultural beliefs about caregiving.
According to the Caregiving in the U.S. 2020 report from the National Alliance for Caregiving (NAC) and AARP, 52% of Asian American caregivers say they care for a parent, a higher rate than white (43%) and African American (33%) caregivers.
“It was expected of me to take care of my mom, and here was my mother taking care of me. It felt backward, wrong, and like I was a burden,” says Omprakash.
Omprakash also felt pressure from family and friends to keep quiet about her illness. And, there was a tug of war between the Western medical treatments her doctors suggested and alternative therapies of her culture. “Caregiving was this complex relationship where, at times, it was imposing cultural values on me that I believed in as well, but went against doctor’s orders and medical advice.”
Today, Omprakash blends traditional medicine like acupuncture with standard treatment and care. She’s also an advocate for people living with Crohn’s and is fighting the stigma of having a chronic illness in the South Asian community.
“I did not want to see anybody else go through what I went through. It was quite an eye-opening and harrowing experience, and I know it’s happening to other people of my descent,” she says. “The reason I talk about it today is, we have to be the change we wish to see in the world.”
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Debbi Harris of Minnesota is a family caregiver for her adult son, born with cerebral palsy. Josh can’t walk or speak clearly and relies on a ventilator and feeding tube.
Harris’s husband, who’s retired, and two other sons help to care for Josh. He has home nursing, too, but it’s difficult to find consistent care due to nursing shortages. Harris has also been hesitant to allow new caregivers into her home to look after her medically fragile son during the COVID-19 pandemic.
A global health crisis is just one challenge the Harris family has faced regarding Josh’s care. Over his lifetime, he’s had at least 40 surgeries, and multiple hospital stays. And along the way, there have been insensitive comments about Josh’s care.
Harris recalls how one case manager from a state-run home services program pressured her to place Josh in a care facility. Her reason: Harris would have more time to relax. “It’s not relaxing to me to just put Josh someplace where I don’t know the people or what’s happening to him,” says Harris.
African American caregivers are more likely than their white counterparts to look after care recipients in their own homes (45% vs. 36%). They also provide an average of 31.2 hours of care a week, the most of any racial or ethnic group.
After being asked repeatedly about the care facility, Harris finally told the case manager that it’s not part of her culture. “Growing up, our parents were not very keen on letting us go anywhere outside of our home and stay overnight. I am not comfortable leaving Josh out of my sight.”
Harris considers herself an advocate for her son and says she feels the need to always be around to watch out for him. “It’s exhausting work, but joyful work.”
“You have to come into this job with a passion [for it].”
When David Mundui immigrated to the United States from Kenya in 2016, he knew he wanted to work with young people. It would be an extension of his career in education.
In Nyahururu, a township about 125 miles north of Nairobi, he was the head of a large school with 1,000 students and 40 staff members. Mundui remembers the love he had for his work, but how some local children were shunned and denied an education because of their physical and intellectual disabilities.
“People were not very sensitive to children with special needs,” says Mundui. “Most parents did not want to disclose someone in their family had a disability.”
He says many parents didn’t understand that children with disabilities could still attend school with the help of trained teachers. Against cultural norms, Mundui and several of his teachers completed a course in special education to better serve these children. He then went home to home to encourage families to allow their children with disabilities to attend school.
When political violence erupted in Kenya, homes were burned, and many were displaced. Mundui’s school became a shelter for people who’d lost their homes. And in true caregiver form, he started taking care of those who were displaced, including his grandmother.
Mundui left Kenya and eventually settled in Washington state. He trained to become a professional caregiver and applied for work. Mundui is now a full-time live-in caregiver for two young adults with developmental disabilities, taking care of their activities of daily living and teaching them to become more independent.
He also mentors friends who immigrate to the U.S. from Kenya and are interested in becoming caregivers. He tells them that caregiving is about more than money—it’s a calling. “You have to come into this job with a passion [for it]; you have to love what you’re doing,” he says. “Don’t do it just for the sake of earning a living. My goal every day is to see that my clients go to bed happy.”
Navigating the Healthcare System
Race, ethnicity, and other identities can influence the care you receive at home or in the hospital. Racial and ethnic health disparities are shown to lead to a lower standard of care and a higher chance of illness.
As a registered nurse and caregiver for her grandmother, Jocelyn Barahona of California has firsthand experience navigating the healthcare system. She takes her grandmother, who lives with dementia and limited mobility following a stroke, to doctor’s appointments and is her medical power of attorney. She also helps with groceries and medication and spends the night on weekends to make sure she’s safe. During the week, the family has in-home support to assist with other activities of daily living.
Barahona’s grandmother is of Nicaraguan descent and speaks Spanish. The family has dealt with communication issues with previous caregivers and mistreatment due to language barriers. These encounters have shaped Barahona’s perspective of caregiving. “I don’t trust anyone else to take care of her like I know my family would,” she says.
Barahona’s family reflects a growing number of Hispanic families caring for an adult relative. The Caregiving in the U.S. 2020 report shows 92% of Hispanic caregivers look after a family member over the age of 18, up markedly from 85% in 2015.
The experiences her grandmother endured inspired Barahona to become a nurse. She wanted to make sure other patients received equal treatment within the healthcare system. “It’s a horrible feeling to know your loved one was mistreated due to a language barrier. I don’t want this to happen to anybody else’s grandparents.”
“You’re often not respected or listened to.”
Debbi Harris has also experienced discrimination by those responsible for her family’s medical care. While she was in labor with her son Josh, Harris says hospital staff ignored troubling symptoms and missed signs that her baby was in distress in the womb. Shortly after birth, Josh suffered a brain hemorrhage. As a Black woman giving birth, “you’re often not respected or listened to,” says Harris.
Research shows racial disparities in infant and maternal health in the U.S. The mortality rate for Black infants in the U.S. is more than twice as high as compared to white infants, while Black women are three times more likely than white women to die during pregnancy or childbirth.
The circumstances under which Josh was born have fueled Harris’s distrust of those tasked with caring for him. She says there are levels of privilege in the healthcare system that Black patients must traverse.
“One of the things you learn as an African American in the healthcare system is, you have to know the system you’re navigating so that you can best operate within it and make the best decisions for your loved one. You need to know what questions to ask, how to ask them, and whom to ask.”
Harris has served on panels advising medical professionals on recognizing implicit bias in their interactions with patients. She says doctors, nurses, and other caregivers must treat families as equal members of the healthcare team. And they should avoid making assumptions based on initial perspectives. “Dig a little deeper. Have a conversation. You can diagnose people better if you get to know people in a more holistic way.”
Across cultures, women are more likely than men to be caregivers. The NAC/AARP report shows three out of five, or 61% of caregivers, are women.
In David Mundui’s native Kenya, “women play a very big role in taking care of the old and disabled, although today I find lots of men coming on board.”
Jocelyn Barahona also comes from a long line of female caregivers. At just nine years old, her grandmother took care of her own siblings. As the family migrated to the U.S., she also raised Barahona and her twin sister. Now, as she continues to lose her memory and live with physical health issues, the women in her family—daughters and granddaughters—have stepped in to provide care.
“We definitely feel indebted to look after her like she looked after us,” says Barahona. “It’s a sense of duty, a sense of obligation that most women in Latin cultures have.”
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Dan and Jennifer Digmann of Michigan agree that support from family is crucial, especially when you both have a long-term health condition. The Digmanns married in 2005 after hitting it off at an event for people with multiple sclerosis. They have each lived with the disabling central nervous system condition for more than 20 years.
Jennifer can no longer walk and has in-home care to help with grocery shopping, cooking, and cleaning during the day. When Dan is done with work, he assists with things like transferring Jennifer in and out of her wheelchair. At first glance, it may seem like Dan is the couple’s primary caregiver, but “[Jennifer is] my caregiver just the same,” says Dan.
The Digmanns say it’s the small things that can make the biggest difference, like when Jennifer surprises Dan with his favorite candy, pays a bill when he forgets, or sends their nieces and nephew a birthday card.
“To take that burden off of him is a tremendous help, and I love that about being his caregiver and partner,” says Jennifer.
The couple says the key to their caregiving partnership is to keep in mind that they’re in it together and letting go of any resentment.
“I don’t begrudge the fact that he can walk, work, and drive,” says Jennifer. “And he doesn’t begrudge the fact that I don’t work, that I don’t have the headache and the stress that he has to deal with 40 hours a week. For couples, you have to remember that this is the person you chose to be with. The situations can be crappy, but you work together to move past it.”
Diversity in Clinical Research
Clinical research is critical to medical breakthroughs that can aid caregivers and their care recipients. To ensure researchers and the general public know all they can about a treatment’s benefits and risks, the people enrolled in clinical trials must reflect those who are likely to use it.
Only a small fraction of the U.S. population participate in clinical trials, and those who do seldomly represent the entire country. Caregivers from underrepresented minority groups may have less time to take part in clinical trials, and there may be language, cultural, and location barriers.
Clinical research teams can address some of these hurdles via the following:
- Compensating study participants and their caregivers for their time and travel expenses.
- Offering in-home and/or virtual visits for those who can’t travel.
- Providing clinical trial marketing materials in various languages and interpreters at call centers and study sites.
- Engaging in conversations with diverse populations when designing the clinical trial protocol to ensure it is accessible to people hailing from different backgrounds and life circumstances.
These actions can help improve relationships and build trust in marginalized communities that have faced a history of neglect and unethical treatment by the research community.
Clara Health is working to create a more diverse and equitable clinical trials space. From building relationships with advocates that serve marginalized populations to consulting with patients and caregivers from diverse backgrounds, the company is putting in the work and holding themselves and clinical trial sponsors accountable.
Although we may come from different backgrounds, there’s a shared humanity in the experience of caregiving. Across cultures, caregivers say taking care of another person takes empathy, patience, selflessness, and even a sense of humor. And, many want the world to start recognizing caregiving for what it is — challenging yet fulfilling, and a normal part of life no matter your culture.
“We pretend like it’s some offshoot of life, like this thing that happens to other people and you just hide all of those caregiving people away to the side,” says Harris. “But eventually, it happens to most of us, so we need to see what we can do to support people when they get to that stage and make it a little bit easier.”
This article was created by our partner, Clara Health. Clara Health was founded to democratize access to clinical trials and ease the administrative burden often placed on patients and caregivers to find and enroll in studies. You can visit them at clarahealth.com