Listening to the Voices of Community Health Workers: A Multilevel,Culture-Centered Approach to Overcoming Structural Barriers in U.S. Latinx Communities

Individual level

Several Spanish-speaking CHWs reported that while sharing a language with clients allowed them to advocate for and facilitate trust with community members, their native Spanish created communication challenges when participating in English-only training seminars, where sometimes facilitators spoke too quickly. CHWs reported “missing out on information,” “not understanding” some of the material, having to restudy and relearn information, and experiencing trouble translating it back to others. For these CHWs, Spanish proficiency made them more valuable to their higher status employers, yet their English proficiency served as an external reminder of their lower status group identity because their individual communication needs were often not considered in their job-related training. For example, Claudia (30) was born in Mexico and has lived in the United States for 18 years. She is a CHW for a local Federally Qualified Health Center (FQHC) in a rural town (around 8,000 people) and works with mostly Latinx patients who are diabetic and/or who have high-blood pressure. She said she would prefer training in Spanish because

Just knowing the vocabulary, the correct vocabulary that would be a plus. Just that we would be able to use correct vocab; vocab, that’s the main thing. ‘Cause when you take it in English, then when you try to translate that to Spanish, you lose some of it opposed to if you were to learn it I think in Spanish, you would be able to deliver the message more complete.

Santiago (42) is a CHW who promotes healthy eating to his urban and suburban community members, those of all ages and racial backgrounds, including Latinx children and families. He was born in Mexico, has lived in the United States for 16 years, and works for a community health center. Spanish is his native language, and he said an interpreter during CHW trainings could help meet the learning needs of all participants. He compared it to school-based programs, where “they have put in a system, some headphones and they have like a small apparatus and there is another person . . . They are next to the person that is presenting but they are interpreting for everyone.” Thus, CHWs wanted more of a person-centered training approach with communication accommodations related to their individual language needs and abilities (e.g., an interpreter), resulting in a deeper understanding of health topics while also keeping a connection with other HCPs in training seminars. These accommodations would allow CHWs to meet employers learning expectations (i.e., learn medical terminology), but also allow an increase in perceived effectiveness when working with community members through learning medical information in their native language.

Microsystem

Some CHWs met with a significant cultural communication barrier: Patients did not want to use interpreters who were members of their cultural in-group. Issa (40), a CHW born in Chad who works for her local health department, works primarily with immigrant and refugee women and children in her urban community, including Latinx individuals. She said, “They are worried about people talking out in the community. It happens a lot . . . I keep telling them, ‘You need to complain about that, you need to say something.’ And, they said, ‘Well if we say something they will lose their job.’” Even though interpreters know they should keep patient confidentiality, Issa explained sometimes interpreters were acquaintances and felt they should pass on information to those concerned for those patients, thereby enacting a cultural value of collective concern. Thus, patients who perceived a shared cultural identity with interpreters felt a need to protect interpreters’ economic well-being more so than their own personal well-being when talking to HCPs, who were perceived as cultural out-group members with more power.

Exosystem

CHWs were concerned about the lack of interpreters, but felt organizations did not hear their complaints. When health care organizations did not adequately staff interpreters at their facilities, CHWs said HCPs commonly used cleaning staff to fill the gaps, whereas patients asked their children to interpret on their behalf. In these instances, health care organizations privileged their high-status professional identity and communication concerns (i.e., HCPs and informed patient consent) over both the lower status professional identity concerns of cleaning staff (i.e., threat to well-being from a lack of training in how to communicate sensitive information, lack of compensation for extra work) and lower status identity concerns of patients (i.e., right to privacy and confidentiality). For example, Delores (66), a CHW born in Mexico, talked about when she was the only interpreter in her rural hospital:

For an entire hospital! All the cleaning people were Hispanic women, low-income Hispanic women . . . They would call them into the room and say, “Can you explain to her that we’re going to be taking her stitches out or we’re going to be doing this or procedures consent?” I mean, that’s a liability issue.

CHWs considered the practice of using untrained, informal interpreters unethical, but did not have power to stop HCPs from using cleaning staff for certified interpreters.

CHWs also discussed the importance of having more interpreters throughout the health care delivery system, especially for discussion of medication directions, which may or may not be understood at the doctor’s office, but then are given in English at the pharmacy. During a home visit with a patient, Issa said instead of giving medication in the ear, a mother was orally giving medication to her child who had an ear infection because the mother did not understand how to use a medicine dropper. Thus, CHWs felt that the lack of language accommodation throughout the health care delivery system continued to reinforce their own and their patients’ lower out-group status, despite CHWs having been hired to bring vulnerable “others” into the health care system.

Individual level

The main challenge was that CHWs desired more knowledge about health and health care policies (beyond the basics) to increase their perceived effectiveness with bringing their clients into the health care system. Desire for more training emerged in two different categories: (a) specialization training and (b) cultural competence training. For health topic training, CHWs expressed a desire for in-depth, specialized knowledge, such as diabetes prevention, linked with certifications. Karen (62) is an African American CHW born in the United States, who works with Latinx community members in an urban health clinic. She explained,

My goal is that we have people who—I’ve got two people broken down in my area. One is really straight on physical exercise, the other one’s on nutrition and education. That’s how I’m doing it here. And you use what you have, you know.

She went on to explain that for these specializations she would like to implement certifications, which would standardize the education required, allow CHWs to provide evidence of knowledge, and increase credibility when working with community members and HCPs. For example,

We have requirements. In other words, for somebody to sell health insurance, you have to meet a certain requirement, you have to pass the test. You have to do all these things, you have to show your knowledge base, you know. We did the same thing for ours, community health workers. And then our community health workers can specialize in certain areas that they want to, you know, their area, they liked working in pediatrics or working part-time like with children or with elderly or with pregnant women or males.

Some CHWs, like Andrea (38) want a degree instead of certification. Andrea, a Latina-CHW born in Mexico, volunteers in an urban community health center and said,

I would like it if we had a legitimate title, a title that means something like a nurse that has her degree, not just a piece of paper that is a certification of assistance. I would like to see a change so that they would see that we are necessary in the community to help the medics [in] the hospital so that these people can be seen. That’s what I would like, that we would be recognized concerning the work that we do.

Not every CHW has even certification opportunities, though. In the 41 states where required certification for CHWs does not exist (such as Nebraska), CHWs typically obtain training employers require, ranging from basic training in medical terminology to more in-depth training around certain disease prevention information (e.g., breast cancer screening) (Association of State and Territorial Health Officials [ASTHO], 2017). Some CHWs believe they have “enough” training while others, such as Miriam (32), who was born in El Salvador and works in a local health department for a town of around 50,000 people, said she wants “more training concerning our job.” She said she sometimes feels “a little bit limited because I feel like I don’t have sufficient, well, sufficient understanding,” especially in connecting clients to other community resources.

In addition, as the front-line health workers in their communities, CHWs recognized the quickly changing ethnic and racial demographics, such as an influx of refugees and immigrants, and desired more “culture sensitivity” training to increase their effectiveness with different cultural groups. As Issa explained,

I need training working with new like refugees who are coming into the country. . . . I haven’t worked with them but I’m sure I will be working with them anytime soon so. . .Because I don’t know anything about that culture yeah, so I need to know more about that culture on how to come, when I go to their home how do I need to, do I need to remove my shoes? Or should I walk in with my shoes? Or do I need to sit down on the floor or the couch? So, yeah, cultural things.

Caroline (42), an African American CHW born in the United States, reflected on the out-group status of her urban Latinx and African American clients and did not want other cultural groups to experience that from her care:

If you have any type of prejudices, or any type of biases, you’re adding to the barriers that the person that you’re trying to face is already facing, because maybe you’re not going to work as hard, or maybe you’re not going to give them as much attention, or you know and you may or may not be aware that you’re doing that.

Because CHWs work closely with their communities and often understand the marginalization of minority voices, they are especially attuned to the changing cultural identities of the community. They want to empower themselves through additional training to meet the changing health needs of their increasingly diverse communities.

Microsystem

Two main issues with communication were identified in our data: (a) official name recognition and (b) client privacy concerns. CHWs reported desiring more official name recognition for their professional title “Community Health Worker” so that the community and HCPs more readily recognize who they are and their services. CHWs said they often use titles that are more descriptive of their roles—health promoter and health advocate—titles that have positive connotations for the community. Some CHWs avoided titles all together and instead focused on their purpose: to help others. Yolanda (53), a Latina CHW who was born in the United States, works in a local health department in a town of around 15,000 people. She said her clients mistrust the phrase “social worker,” so she avoids titles all together and explains CHWs to her clients, “we’re just here to just make sure you’re healthy and we’re here to support you in any way and that’s all.” Likewise, Esperanza (57) is a Latina CHW who works in a hospital in a town of approximately 10,000 people. She primarily works with patients who have diabetes and mental health issues, who “have no idea” what a CHW is. Because they already know her from the community, she tells them “I’m here to help them, and I talk to them a lot, you know, especially the diabetic, what services we have, what the special is that we have here in the hospital, where they can go.”

Sebastian (34), a CHW born in Mexico who has lived in the United States for 10 years and works for an urban FQHC, helps patients manage diabetes, obesity, cardiovascular health, and substance use. He explained that in the past, he used titles such as “health coordinator” or “patient support specialist.” However, now, he specifically uses “community health worker”:

. . . to help promote that branding of the profession. There’s a lot of different names and I think that increases the confusion within organizations, clients; even community health workers themselves are not sure how to define what they do because, for example, my job, they weren’t looking for a community health worker. It says, it said “health coordinator” . . . so there’s so many names, so now I try to use community health worker as much as I can, to standardize, to create that standard . . . Sometimes I have to explain what a community health worker is.

This desire for official recognition also introduced tensions with trust in their overlapping roles as a CHW and a community member. Karen talked about her urban center’s sexually transmitted infection (STI) testing service and sympathized with clients’ desires to forgo testing if it meant others in the community would know their health status. Because the STI tests were culturally taboo and therefore, stigmatized, Karen arranged for another CHW from outside the community to come to the center to perform the tests:

I didn’t want them thinking that if they went to church they’d see the CHW, and they’d feel somewhat embarrassed by it, seeing them out you know what I mean. [The other CHW] wasn’t going to be in their circle of their world and their neighborhood, you know. She lives somewhere else now. [If] they saw each other at a grocery store or somewhere way out where [the health care worker] lives, that’s a different matter. But day to day they wouldn’t be seeing her here every week at church or anything like that you know.

In addition to respecting cultural attitudes toward screenings, as both a member of the community and a CHW, Karen also shared the privacy concerns and mistrust that her clients often experienced when working with HCPs, even other CHWs, from outside the community:

We have to sign confidentiality agreements like anybody else. But that—that sometimes concerns me you know. . . My question has always been well what happens when a person leaves that organization? What—is the HIPAA law with that organization or is it with that person? You know, you’re a nurse, or you’re a doctor with an organization and you have patient information and you leave . . . how can the organization guarantee that once you’ve left, you know, that you’ll follow [HIPAA]?

Thus, CHWs experienced tension between promoting themselves to strengthen recognition within the community and among other HCPs, including other CHWs, and explaining what CHWs are to their clients in meaningful ways that they could understand. Some CHWs were also careful to structure their health care services in a way that allowed clients to receive care for stigmatized conditions (i.e., STIs) from CHWs with similar cultural backgrounds, but who lived outside their neighborhood to preserve client privacy. This flexibility, however, occurred in an urban environment where it may be easier to preserve anonymity, versus a rural environment with a smaller population, fewer available health care resources, and thus, more overlapping roles for CHWs.

Exosystem

Results indicated that CHWs experienced three main communication challenges when navigating their role identities when working with health care organizations: (a) lack of respect from other HCPs, (b) lack of work in the community where they felt they were most beneficial to clients, and (c) feeling overworked and underpaid by employers. In regard to perceiving a lack of respect from other HCPs, CHWs talked about being referred to as “interpreters,” even though they provided several other services to clients, including connecting clients to much needed community resources, and helping them navigate the billing procedures of the health care system. For example, Claudia said that her official job title at the rural FQHC where she works used to be “interpreter” even though she did “a little bit of everything” at the community clinic, such as answering phones and scheduling appointments. She said 2 years ago, her title officially changed to “community health worker”; however, “so many think what we do is interpreting . . . so they still call us interpreters . . . so that hasn’t exactly changed yet.”

Julissa (32), a Latina CHW born in the United States, who works in a rural community health center, shared her desire for more status alongside other more traditionally powerful HCPs:

I just think respect from the providers and nurses and whatnot. . . . When you come to like the hospitals, to other clinics . . . it’s kind of we’re kind of looked down upon, “Oh, she’s just a friend; are you a friend?” “No, I’m the Community Health Worker.” Um, what does that mean you know? So I think they need more education on what a Community Health Worker is and what the capabilities of that Community Health Worker can do.

Esperanza agreed and would like the HCPs she works with in her rural, regional hospital “to know what a community health worker could do for them. To let them know that we are here and we not taking nobody’s jobs, you know. Yeah, we not taking those jobs from no one.” Alejandra (31), a CHW born in Mexico who has lived 12 years in the United States, believed that the lack of respect trickled down from the higher status, more highly educated supervisors in her urban health clinic:

Especially within you know, with the administration persons and it’s kind of hard to see how people with high level of education, I can say that sometimes they act like we don’t have any education you know, the way they treat you.

Angela (45), a Latina CHW who was born in Mexico and has lived in the United States for 23 years, works for a community health center educating urban and suburban patients about sexual health. She cited the need to integrate CHWs to improve health care for patients: “If there was more of a unity between promoters and medics and if the medics would give the promoters a chance to do a follow-up with the people, I think that would facilitate communication with medical services with patients.”

Another challenge for CHWs is employers’ increasing requests for CHWs to work in brick-and-mortar buildings. CHWs want employers to encourage more community outreach to help their clients access health care services, instead of waiting until patients find the clinics to help them navigate services. As Caroline explained,

I think just having us and housing us quietly and secretly and saying, you know the community health worker can do this or is available to do this but we’re not out in the front lines making that difference. It’s just kind of a waste of a resource. Like I said I’d like to see us utilized in the clinic and also in the community so once the community finds its way to the clinic, they already have some knowledge about their health and what’s going on and then it’s reinforced once they come inside to get help for that.

Katherine (25), a Latina CHW who was born in Mexico and has lived in the United States for 15 years, agreed. She works for a community health center in a town of around 23,000 people and said she does not always feel she is helping patients in the way she would like because “when there are a lot of patients, I’m running around and I feel I don’t give them all the time that they need.” For that reason, she wished that they could “go out more often and let people know that we are here.”

A third challenge is that CHWs believe they are constantly “on call” for their jobs. CHWs mentioned that self-care and employer emotional support are two solutions; however, they also widely mentioned the need to sustain CHW efforts through stable salary or hourly pay and more regulation of their workload. As Karen explained,

Doctor’s offices can close 8-5 then you get your answering machine. We have our home number. People call us. And they call our community health workers because they know them. They’re in church, they see them every day. That’s the other disadvantage, you want to say, you know. So it never ends you know. . . . I think we just have to find a system for—to pay our community health workers. You know I could get the grants and things, but I’m talking about on a consistent basis, ongoing basis. We have to show them how we appreciate them more, you know.

Ligia (43), a Latina CHW who was born in Mexico and has lived in the United States for 10 years, agreed. She is employed at a local health department in a town of around 50,000 people and is paid through a temporary grant:

The funds will last for one more year but after that we don’t know what’s going to happen. It would also help if we had our work times more established. And once this is over, we will be able to help, but not as much since we won’t have as much time available since we have to find another job. So if we want to get this to grow, I think that there needs to be more constant support.

CHWs widely recognized the rising cost of health care, but also recognized that CHWs have demonstrated value in improving health disparities for vulnerable populations. Caroline said,

You know I understand that money is a driving force for a lot of organizations, especially for nonprofits and community health centers, so I think it’s an underserved, an unsung profession. Community health workers are the boots-on-the-ground people and they have to be equipped with a lot of knowledge and skill and resource, and that’s just in training. So personally they have to be approachable and trustworthy and there’s a lot of other things that go into it to make these, to make that population, you know, open up.

As a way to advocate for themselves (as a collective group) and demonstrate their value in their respective community, some CHWs began carefully gathering and documenting evidence of their demonstrated effectiveness in meeting clients’ health needs even though they were not sure if, and when, this information would be used. Karen explained,

This is volunteer for us. . . . We’re not reimbursed for anything. But I’m still collecting. I—I—because I’m building up this case for community health workers that [we] should be paid. You know, but I—I guess I’m not so sure that’s gonna ever happen though.

Yet, this data gathering adds to the risk of CHW burnout. As Beth (55) a Native American and White CHW said, she wishes she could simplify data entry of client details because it is time consuming and takes away from the time she could spend serving additional clients. In her job at a rural health department, she visits clients’ homes and each visit requires about 3.5 hours, 1 hour of which is data entry:

Data’s uncomfortable. If I could do my home visits and, and you know just have a little tape recorder that says I, you know, met with the family today and they’re doing awesome or met with the family today and this is the challenge and be done, that would be like my dream [laugh].

Finally, to be hired for pay requires legal immigration status. As Sandra (41), a CHW who volunteers at an urban health center educating patients about diabetes, nutrition, and sexual health, said “Many of us don’t have that for one reason or another so that’s what really clips our wings. It clips our wings more than the language barrier does.”

Thus, CHWs are valued in terms of the services they provide in connecting clients to health care services, yet they are constantly in contact with clients and therefore, are constantly enacting their roles as CHWs even when not representing their organizations. This is doubly challenging for sustainability if they are unpaid for their job even when they are officially representing their organizations (e.g., in states that do not have a required CHW certification program). Still, as demonstrated above, within multiple levels of communication behavior, CHWs (a) feel constrained and empowered by the (lack of) language accommodations, and (b) actively seek to increase network integration as a way to amplify their voice, allowing them to better serve populations experiencing health disparities.