Communities of color have been disproportionately impacted by the pandemic, while also hold higher levels of mistrust towards health care due to legitimate structural, historical reasons. Mistrust is related to lower intentions to receive a COVID-19 vaccine, particularly among Black Americans. However, there is a lack of understanding of that mistrust which makes it difficult to address.
Día de la Mujer Latina and Made to Save conducted listening sessions with Community Health Workers and Promotoras in November 2021 to help to learn more about medical mistrust in Black and Latinx communities. Both of these trusted members of their respective communities shared some overlapping experiences, as well as unique insights for their respective communities.
These Community Health Workers/Promotoras noted that individual interactions with healthcare providers can impact perceptions of the entire health care system.
Across both groups, many noted that their patients felt “like a number”, with their care limited to transactions without empathy or a willingness to listen to concerns they may have. They detailed that many patient interactions lacked clear, effective communication or compassion, which can lead to diminished trust of the health care system for these community members.
As one Promotora mentioned, patients can feel dismissed when they try to ask questions about their care:
“Because the doctors do not show empathy, they only dedicate 5 minutes and only bring up one disease. The patient begins to tell him more reasons why he is there. The doctor stops [the patient] in this and [the patient] doesn’t have the time to ask questions about anything else.”
The Community Health Workers shared similar sentiments, particularly noting that even just one difficult experience led to a reluctance to seek health care in the future:
“All it takes is one bad experience or one negative first impression to prevent people from seeking out help and spreading the word. If it’s difficult for physicians of course to be taken seriously, why would it be any different for a patient?”
“Lack of care and comfort leads to being hesitant to seek out services again. Once we are treated a certain way it is hard to come back from as an African American.”
Conversely, perceived strength and intentionality of a health care provider improves perception of care and trust. Additionally, expensive care and the inability to seek specialized services lead many community members to feel exploited by healthcare providers and insurers.
The Promotoras identified language and other structural barriers that persistently undermine quality health care for the Latinx community.
One of the common complaints of Latino/a/x patients is the lack of healthcare providers that are able to speak Spanish and the lack of culturally and linguistically translated materials, which prevents patients from accessing quality care or engaging in patient-centered care.
“They are not comfortable many times because of the language or because of the despotism of the medical staff because they do not have the confidence, they do not ask questions.”
“Many Latinos feel safe with their medical care when it is in their native language.”
The Promotoras noted that many patients perceive discrimination via doctors and other health workers. Many low-income Latino/as cannot afford out of pocket costs of care beyond Medicaid which limits the patient from certain medications and access to specialists. They also noted there were time constraints as many are unable to take time off from work for sickness and doctor visits.
“Some offer options [and] alternatives but many times they first look at the medical coverage that the patient has to offer those options.”
“Having a low level of literacy, the economic level, the legal status, the language are barriers that affect motivation.”
Several Community Health Workers noted that historical structural racism continues to affect perceptions of healthcare in the Black community today.
Past and present events continue to shape patient outlook and experiences toward the health care system. One focus group participant noted:
“[There is a] general mistrust of the healthcare industry stemming from slavery [and] Jim Crow era, where Blacks were fearful of letting their masters know they were hurt in case they may be killed or seen as expendable to AIDS [and] crack epidemic where Blacks were treated as if health disparities were their fault or some divine punishment.”
Moreover, the Community Health Workers expressed concerns that many physicians are transactional in their care and do not recognize or attempt to address Black patients’ concerns with their treatment plans or care. Some were hopeful that better training health care providers to provide more inclusive care may be a first step:
“…Institutional commitments and standards need to be put into place and all healthcare providers and staff should be accountable to these standards and values.”
Spaces for Community Health Workers to share their experiences can be therapeutic.
The Promotoras also noted that these challenges contributed to additional strain in health care workers. An individual stated that at times the healthcare staff is “burnt out” and their mental health has been affected.
“They are unable to show compassion. The healthcare staff need to be taken care of as much as patients so the staff can continue with compassion care.”
An unexpected insight from these sessions was that many participants in the focus group sessions felt they were able to share these experiences with members of their community and that the sessions were therapeutic, allowing them a comfortable space to discuss their emotional burnout from their high demanding roles.
From these insights, we provide directions for moving forward in addressing mistrust in communities of color:
- Hire more diverse health care providers and staff (including interpreters/translators!). Patients need to have their basic requirements met during each visit, including removing any language barriers. Patients are more receptive to healthcare providers who look more like them and who understand their culture. The cultural discrepancies between patients and their providers are evident, resulting in frequent miscommunication. Including a more diverse staff and culturally and linguistically competent translators and interpreters can significantly improve communication.
- Include diversity, hospitality, and mental health training. Each training strives to treat diverse patients as people, not numbers, in hopes to promote a warm, inviting environment. The diversity training aims at educating healthcare staff and workers to better serve diverse patients. Alongside this training, the mental health training focuses on reducing emotional burnout and assisting with a better patient-provider relationship. All training modules work together to provide a holistic point of support across patients and providers.
- Provide affordable, accessible healthcare options. Health professionals can refer patients to local doctors as well as Prescription Assistance (RX) coupons for medications. This can drastically reduce the financial burden of medical costs for low income patients.
About Dia De La Mujer Latina
Día de la Mujer Latina is a Houston, TX based partner in Made to Save’s grassroots coalition. The organization addresses health needs for the underserved Latino community by providing culturally and linguistically tailored resources for early detection, prevention, and follow-up care as well as Promotora and Community Health Worker training.
About the Research
Two focus group listening sessions were completed in November 2021 and were both moderated by Nurse Becca Torres, (BSN, RN, P/CHWI) of DML (www.diadelamujerlatina.org). The session of 10 Promotoras was conducted in-person in Spanish (and translated into English), while a session of 10 Community Health Workers, who primarily work with African Americans, was conducted virtually via Zoom in English.
If you or your organization is interested in conducting a focus group to learn more about medical mistrust in your community, please visit Made to Save’s Focus Group Guide or contact the MTS Research and Impact team ([email protected] or [email protected]) for support.