Recently, we discovered a thoughtfully written article about Mr. Delphin, a skilled tailor who realized that his work benefited customers beyond providing well-fitted clothing. Tailoring helped build their confidence.
Similar to the work of a tailor making intricate adjustments, our team of Black researchers, healthcare professionals and caregivers collaborated to adapt an online course, Caregiving During a Crisis, originally created for a general audience of dementia caregivers across the United States. We tailored the course specifically for Black caregivers of persons living with dementia.
This new version, named Caregiving While Black (CWB), aimed to empower caregivers by addressing the complex realities of caregiving in the context of cultural beliefs and social experiences. The course topics included home life management, caregiver self-care, and navigating the healthcare system.
The tailoring process was informed by feedback we garnered directly from caregivers. We conducted focus group sessions with 16 Black caregivers, whose insights shaped the content of CWB and deepened our understanding of why culturally specific education is essential. Their responses answered a frequently asked question: “Why is a course tailored to Black caregivers necessary?” From these discussions, three main themes emerged:
- Limited access to information, education and resources
- A need for alignment with Black caregivers’ cultural identity
- A need to instill a sense of empowerment and feel seen
These themes reflected the caregivers’ narratives and highlighted the ongoing struggle of navigating disparities in healthcare and related services. Caregivers consistently viewed their experiences through the lens of race and health inequities—a perspective shaped by the reality of systemic discrimination and its impact on health outcomes for Black Americans. They often compared their experiences to those of non-Hispanic white Americans, emphasizing significant differences in daily life and caregiving outcomes.
‘What I went through with my mother. She never really got a proper diagnosis.’
Caregivers believed that white Americans had a better financial capacity to pay out-of-pocket for resources such as respite care, timely access to critical decision-making information, and sufficient community resources to ease the challenges of caregiving. Most importantly, caregivers valued a course tailored to their needs, addressing barriers and solutions specific to their experiences.
Limited Access to Information, Education and Resources
Caregivers felt that their race and ethnicity contributed to limited access to education and resources compared to non-Black families. Many caregivers noted that even when resources were available, they were often provided too late. One caregiver said, “I personally feel that we get the brunt end of things,” reflecting the hardships that contribute to the stress of caregiving. Another caregiver shared, “... what I went through with my mother. She never really got a proper diagnosis,” illustrating their dissatisfaction with the healthcare system.
Day-to-day barriers also included difficulties accessing timely information. One caregiver noted, “Because somebody knows this information and is utilizing it, and it hasn't gotten to me, and I'm in year 7 looking.”
Another caregiver highlighted financial constraints, when she said, “We can't even send our parents to respite ... So where do we get funds for it? Does anybody care?”
One caregiver internalized these challenges, attributing their struggles to a lack of education: “We’re not educated enough to receive the other things that are out there.” This sense of inadequacy only intensified the caregiving burden.
Regarding educational delivery, a caregiver emphasized the need for innovative approaches: “… being a minority, we have to continue to educate in a different way.” Another caregiver added that generalized information is often insufficient considering the disparities that Black Americans endure, and suggested, “... generalized information will not necessarily be as beneficial for us.”
A Need to Align with Caregivers’ Cultural Identity
Caregivers expressed that the Black culture and lived experiences are unique, pushing back against the assumption of a uniform caregiving experience. One caregiver noted, “They try to put us in their box. We’re not in the same box.” The added stress of living in a society that often fails to acknowledge their identity was a recurring theme, as one participant shared, “... living in a [country] that doesn’t always acknowledge who we are …”
Historical mistrust and underrepresentation in research further influenced caregivers’ perspectives. They expressed feeling overlooked, which reinforced bonds within the Black caregiving community.
A Need to Instill Empowerment and Feel Seen
Despite facing disparities, caregivers wanted to feel empowered and effectively supported in their roles. “We need to better understand … some of the things that we’ll go through, some of the disparities that we have, simply because of our race,” said one caregiver.
Participants advocated for a course that made them feel seen and validated, with one suggesting, “... information specifically for us …” could affirm their experiences. Seeing familiar faces was another source of comfort: “It … gives you the comfort of somebody who might understand a little bit better …”
Caregivers highlighted the importance of shared experiences in fostering community and belonging. Culturally tailored interventions were viewed as crucial for enhancing decision-making and providing day-to-day guidance.
Summary
As researchers developing the Caregiving While Black course, we recognize that caregiving shares universal experiences. Yet, the voices of Black caregivers reveal the significant role that race and culture play in shaping their journeys. Tailoring this educational program allowed us to create culturally relevant content that addresses the unique challenges caregivers face due to race- and class-based disparities. Black caregivers emphasized that culturally tailored courses provide better understanding, improve navigation skills, and offer trusted resources. For many, these courses validated their experiences and promoted empowerment, potentially restoring trust and strengthening confidence in caregiving their roles.
Acknowledgments
We thank the participants for their valuable contributions. This work was funded by the National Institute on Aging, a division of the National Institutes of Health (R21AG083366 [F.E.]), and the UC Davis Health Betty Irene Fellowship for Nurse Leaders and Innovators (F.E.). The content is the responsibility of the authors and does not represent official views of the NIH or UC Davis Health.
Stephanie Bennett, MBA, PhD, RN, is an adjunct assistant professor and post-doctoral fellow; Karah Alexander, MPH, PhD, is a research fellow and program coordinator, both at the Nell Hodgson Woodruff School of Nursing, Emory University. Jamiah Shoemake, MPH, and Nkosi Cave, MPH, are clinical research coordinators at Emory University. Janelle Gore, MPH, is a doctoral student in clinical psychology at the University of Alabama. Fayron Epps, PhD, RN, is a professor at UT Health San Antonio School of Nursing, and a member of ASA’s Generations Editorial Advisory Board.
