Contributor: A Call for Culturally Sensitive Caregiver Research Frameworks

“Put the daal in the microwave, the one with the cilantro. And pack a few kaju barfi too, not the saffron ones.” I was frantically helping my mom prepare food, clothes, and my dad’s meds for yet another ICU admission. Though we were both anxious about the infection afflicting my dad, an immunosuppressed kidney transplant recipient, my mom seemed equally concerned with making sure he had a home-cooked Indian meal.

This act of care would never appear in my father’s medical chart alongside the care provided by nurses and physicians. That lentil soup and cashew fudge, however, were as vital to my father’s healing as any IV drips and antibiotics. And yet, the labor performed by informal caregivers is continually undervalued in our health systems.

Across the US, more than 50 million people provide informal care to loved ones with chronic or acute conditions.¹ These caregivers, many of whom are women and people of color, spend countless hours managing appointments, coordinating lists of medications, and sorting out the complexities of insurance. While the work is viewed as taxing and rewarding, much remains to be understood about the true impacts of caregiving. With more than 20% of the current workforce engaged in informal caregiving responsibilities—a number expected to increase to more than 50% by 2030—developing a more nuanced understanding of the impact of caregiving is a public health and policy imperative.²

While researchers have begun to quantify some of the direct economic impacts of caregiving, including lost income,² reduced productivity, and increased stress-related health costs, there is a compelling opportunity to develop a more sophisticated research framework. In particular, caregiver economic impact studies should adopt culturally sensitive research frameworks to account for how different communities engage with caregiving.

For immigrant families like mine, caregiving can look like navigating health care systems in a second language, preparing culturally appropriate meals that aid recovery, and shielding elders from stigmatized diagnoses like dementia. As a result, the emotional and economic burdens also differ by community. One study found that Asian American caregivers, for example, were less likely to access support services than others due to cultural stigma and a lack of linguistically appropriate programming.³ Another study, meanwhile, found that Latino caregivers spend a greater portion of their income on caregiving than non-white caregivers.⁴ Addressing the true social and economic impact of these culturally specific aspects of caregiving will require tailored, sensitive research questions and the creation of programs that truly support the diverse needs of caregivers. We must develop a robust evidence base that informs the policy-making process. This means investing in community-based, culturally informed research frameworks that go beyond surveys to capture lived realities. Researchers have the opportunity to strengthen their findings by actively collaborating with caregivers from underrepresented communities to cocreate culturally specific study designs from the beginning of the research process.

As we prepare for a future with more caregivers and more complex patient needs, let’s commit to valuing the care that happens outside hospitals just as much as the care within them.

In other words, let’s build a research agenda that values the cilantro in the daal as much as the dosage of any medicine.

References

1. Whitehead M, Lee Y. Listening to informal caregivers: outstanding challenges and needs. United States of Care. September 19, 2022. Accessed July 25, 2025. https://unitedstatesofcare.org/listening-to-informal-caregivers-outstanding-challenges-and-needs/
2. Uncovering the true cost of healthcare: the economic realities of caregiving. Workshop 3 learning report. Center for Innovation & Value Research. May 2025. Accessed July 25, 2025. https://valueresearch.org/wp-content/uploads/2025/05/PCEI-Workshop-3-Learning-Report_FINAL.pdf
3. Li Verdugo J, Oh HY, Jang Y. Mental health of Asian American caregivers of family members with severe mental illness. Psychiatr Serv. 2023;74(10):1100-1103. doi:10.1176/appi.ps.20220535
4. Meyer K, Mage SM, Gonzalez A, et al. Lessons from a pilot study of a culturally tailored financial well-being intervention among Latino family caregivers. J Appl Gerontol. 2025;44(6):938-948. doi:10.1177/07334648241293524