Medical mistrust has had devastating consequences during the COVID-19 pandemic, particularly in rural communities. Community Health Workers (CHWs) have been shown to build trust, but there is little research on trust-building by CHWs in rural communities.
This study aims to understand the strategies that CHWs use to build trust with participants of health screenings in frontier Idaho.
This is a qualitative study based on in-person, semi-structured interviews.
We interviewed CHWs (N=6) and coordinators of food distribution sites (FDSs; e.g., food banks and pantries) where CHWs hosted a health screening (N=15).
Interviews were conducted with CHWs and FDS coordinators during FDS-based health screenings. Interview guides were initially designed to assess facilitators and barriers to health screenings. Trust and mistrust emerged as dominant themes that determined nearly every aspect of the FDS-CHW collaboration, and thus became the focus of interviews.
CHWs encountered high levels of interpersonal trust, but low institutional and generalized trust, among the coordinators and clients of rural FDSs. When working to reach FDS clients, CHWs anticipated confronting mistrust due to their association with the healthcare system and government, especially if CHWs were perceived as “outsiders.” Hosting health screenings at FDSs, which were trusted community organizations, was important for CHWs to begin building trust with FDS clients. CHWs also volunteered at FDS locations to build interpersonal trust before hosting health screenings. Interviewees agreed that trust building was a time- and resource-intensive process.
CHWs build interpersonal trust with high-risk rural residents, and should be integral parts of trust building initiatives in rural areas. FDSs are vital partners in reaching low-trust populations, and may provide an especially promising environment to reach some rural community members. It is unclear whether trust in individual CHWs also extends to the broader healthcare system.
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In rural communities, medical mistrust has had devastating consequences during the COVID-19 pandemic.1 Medical mistrust is constituted of the main components of trust: interpersonal trust (trust in known others), generalized trust (trust in unknown others), and institutional trust (trust in broader institutions such as government and healthcare).2 Rural communities have long had low trust in public and government institutions, which is associated with low rates of healthcare utilization, disease screening, vaccination, and adherence to treatment,3–6 and with higher rates of medical and psychiatric conditions.7–9 This has exacerbated rural health disparities in access to care, rates of chronic disease, and life expectancy.10–12 During the COVID-19 pandemic, mistrust in government and healthcare is thought to be the main driver of vaccine hesitancy and poor adherence to public health guidance,13, 14 contributing to high rates of COVID-19 infection and death in rural areas.1 There is therefore an urgent need to understand the dynamics of trust, and strategies to build trust, in rural communities.
Small rural communities tend to have strong interpersonal bonds and high levels of social participation, but low institutional and generalized trust.15 Leveraging the interpersonal trust of rural communities may improve preventive health behaviors and ultimately health outcomes in the short term. Community Health Workers (CHWs) are defined by being trusted members of the communities they serve,16 and cultivation of interpersonal trust is central to their role.17–20 CHW programs have been shown to improve vaccination rates,21, 22 medication adherence, and healthcare utilization,23 which are particularly hindered by medical mistrust. CHW programs may therefore be valuable components of trust-building initiatives in rural areas.
Mistrust is distinct from distrust. Distrust signifies suspicion toward a specific individual or organization, based in either vicarious or direct experience with them. Mistrust on the other hand refers to a “general sense of unease toward someone or something”24 without necessarily naming who is not trusted. Both mistrust and distrust are often rooted in historic and present-day structural inequities such as poverty, discrimination, and compromised access to healthcare.24 The majority of research on medical mistrust has focused on urban communities of color, migrant populations, and members of the LGBTQ community.3, 25, 26 There is comparatively little research on medical mistrust within rural, predominantly White populations. Furthermore, to our knowledge, there are no qualitative studies on the trust dynamics for CHWs in rural communities in the USA.
In this paper, we studied CHWs working within food distribution sites (FDSs), such as food banks and pantries, in rural Idaho. Our initial goal was to understand the facilitators and barriers behind this collaboration. Early in the course of our interviews, however, trust and mistrust emerged as dominant forces driving nearly every aspect of the collaboration. We shifted our focus to examine the strategies that CHWs employ to mitigate institutional mistrust and generate interpersonal trust with FDS clients in rural Idaho.
Study Setting and Activities
St. Mary’s Health and Clearwater Valley Health consist of two critical access hospitals, eight primary care clinics, and four physical therapy clinics. Their catchment area includes Clearwater, Idaho, and Lewis counties in North-Central Idaho. With a population density of 2.5 people per square mile, this medically isolated frontier region has high rates of chronic medical and mental health conditions, poverty, unemployment, lack of insurance, and food insecurity.27–29 Because their patients face many barriers to healthcare, St. Mary’s Health and Clearwater Valley Health rely on non-clinical interventions to reach many community members who may not routinely utilize healthcare services.
St. Mary’s Health and Clearwater Valley Health employ a team of six CHWs, including a CHW Lead who oversees the CHW team. Among other responsibilities, CHWs lead health screening events at community organizations and events, during which they test for chronic disease risk factors, assess social needs and insurance status, and provide health education and referrals. In 2018, CHWs began planning and performing health screenings at FDSs in addition to other community sites, with the goal of identifying community members with elevated social and medical risk factors. St. Mary’s Health and Clearwater Valley Health conducted a preliminary program evaluation in August, 2019, at which time CHWs had conducted health screenings at seven FDSs. FDS screening participants were 93% White, and had higher rates of obesity, diabetes, hypertension, public or no insurance, and lack of a regular provider, compared with those screened at non-FDS sites.
All six St. Mary’s Health and Clearwater Valley Health CHWs and 15 FDS coordinators were interviewed for this study. Eight FDSs collaborated with CHWs for health-related activities, such as health screenings or distribution of health resources, and were selected for this study. FDS coordinators were not shared across multiple FDS sites. Five FDSs were run by two or three volunteers, and in those cases all volunteers were interviewed together. Therefore, a total of eight FDS interviews were performed. Because the transcript could not distinguish between individuals in the same interview, we analyzed all participants in a given interview in aggregate.
Three FDSs were run by a church or senior center, and were coordinated by the leader(s) of their respective organizations. Two FDSs were hosted at rented or donated space and led by community volunteers. Three FDSs were Mobile Food Pantries, which involved FDS clients picking up food directly from an Idaho Food Pantry truck in a local parking lot. Mobile Food Pantries did not include permanent locations for food storage and were led by community volunteers. One Mobile Food Pantry did not host screenings for logistical reasons but was interviewed to explain why a screening was not feasible. Self-reported demographic information was not required from participants to reduce the amount of personal information requested of interviewees.
Data Collection and Analysis
CHWs and FDS coordinators participated in 30–60-minute, semi-structured interviews using separate interview guides for CHWs and FDS coordinators. Both interview guides were based on the Consolidated Framework for Implementation Research, and were designed to assess logistical and organizational factors influencing the CHW-FDS collaboration. Questions focused on describing the FDS client population and the health screening’s planning, execution, impact, facilitators, and barriers. Once the study team arrived on site, however, it was clear that questions about formalized processes were not relevant to the structure of the CHW and FDS collaboration. Interview questions nevertheless prompted spontaneous reflections from participants on topics including trust and mistrust. As a result, the study team decided that no revision to the interview guide was necessary.
Each interview was audio-recorded and transcribed verbatim. Two authors (I.S. and K.G.) initially reviewed five interview transcripts and generated a codebook through an iterative process of comparing codes, resolving differences, and refining the codebook. Emergent themes of trust and lack of trust spanned three topics: interpersonal trust, generalized trust, and institutional trust. Interpersonal trust appeared as an independent concept, while generalized and institutional mistrust were almost exclusively cited together and were therefore coded together.
Upon completion of the codebook, co-authors (I.S. and K.G.) independently coded all remaining transcripts and discussed coding discrepancies to reach consensus. Qualitative analysis was performed using NVivo Pro 12 software. This study was approved by the University of Chicago Institutional Review Board.
Both CHWs and FDS coordinators described the FDS client population as being reclusive, socially and geographically isolated, and unlikely to utilize medical services due to inability to afford care and mistrust in the healthcare system. As a result, they cited challenges with reaching FDS clients outside of the FDS setting because they were unlikely to congregate or participate in other community spaces (Table 1; 1e). In addition, they described FDS clients as having high rates of unmet medical and social needs (Table 1; 1a–d). Because they reached a high need population that could not be engaged elsewhere, all six CHWs echoed the theme: at FDSs, “we’re reaching the people that need us” (Interviewee 21, CHW).
Generalized and Institutional Mistrust
Both CHWs and FDS coordinators anticipated confronting mistrust among FDS clients: “[FDS clients] don’t trust government people, anybody dealing with government. And they don’t trust strangers” (Interviewee 03, CHW). Interviewees did not explicitly name the object of distrust, but did describe a general mistrust in strangers and institutions. Therefore, the authors refer to lack of trust as mistrust, rather than distrust. CHWs felt they had to overcome mistrust in outsiders and “strangers,” and mistrust in institutions such as the healthcare system. Interviewees frequently encountered FDS clients’ hesitancy to participate in health screenings due to this institutional and generalized mistrust (Table 1; 2b). Institutional mistrust particularly served as a barrier to social needs screenings; half of the CHWs avoided performing social needs assessments due to concerns that questions about social needs would arouse institutional mistrust. One CHW assumed that FDS clients “might be wondering ‘why is she asking me about this kind of stuff?’” and that it would take “a conscious shift” to start focusing on social needs (Interviewee, 11, CHW) (Table 1; 2c).
CHWs and FDS coordinators described the FDS as a trusted community organization (Table 1; 2d). FDS coordinators intentionally built trust with their clients by “ helping to develop their self-worth and dignity. Letting them know that they’re loved by somebody. Letting them know that they have a safe place where they can talk” (Interviewee 19, FDS Coordinator). CHWs observed that FDS clients were more likely to engage with and trust them in a safe environment like the FDS: “In the food bank, they feel comfortable. They feel welcome. It’s kind of like I’m on their territory” (Interviewee 11, CHW) (Table 1; 2e). FDS coordinators were confident that CHWs would earn trust from FDS clients through their continued presence at FDSs:
Of course [the CHW-FDS collaboration is] going to help build trust because they're going to see [the CHWs] and they're going to know that they're trying to help. It may take a long time. It's like the trust that we have with our clients…They've been with us a long time. (Interviewee 19, FDS Coordinator)
In addition, the leadership roles of FDS coordinators helped CHWs deepen their connection with the community. An added benefit of partnering with FDSs was “connecting with the movers and shakers, the people that are very active in the community…that’s been the best connection because they know everybody” (Interviewee 01, CHW).
CHWs focused on developing relationships built on strong interpersonal trust. All six CHWs volunteered at FDSs to first build relationships and trust with FDS coordinators and FDS clients prior to planning or implementing health screenings. CHWs denied receiving any formal or explicit directive to volunteer, but rather understood that in a small town this was required to initiate collaboration:
You have to develop a trust pattern with them. They’ll get their box of food and they’ll leave…They’ll come back the next time. Then they’ll talk to you and then you develop a relationship with them. It’s a slow process. But being with them for two, two and a half years now, they know me, they know a couple of the other gals out here and they know that their things are kept private. (Interviewee 03, CHW) (Table 1; 3b)
Interviewees recognized that health screenings would be slow to make a tangible impact due to the incremental process of cultivating trust. One FDS coordinator stressed the need for “persistence” and warned that “if we try to gauge our results on an event or two, we’ll be disappointed and quit too early” (Interviewee 04, FDS Coordinator). Several CHWs also reported that the time spent volunteering could be excessive and detracted from time spent on other job responsibilities (Table 1; 3e).
Trusting personal relationships also formed the basis of social needs screening. Rather than perform formalized social needs screenings, CHWs organically learned about social needs of FDS clients through personal relationships built over time. Similarly, FDS coordinators cited the close ties within small communities as their source of information about the social needs of their clients: “living in this small community, everybody knows those people that are really struggling. And we watch out for them” (Interviewee 08, FDS Coordinator) (Table 1; 3c).
CHWs and FDS coordinators reported that personal relationships and interpersonal trust formed the basis of their collaboration. Nearly all FDS organizations were volunteer-run, and collaboration with CHWs was informal and guided by the personal relationships between individual CHWs and FDS coordinators. Interviewees felt that a relationship-driven collaboration made it simple to plan and implement health screenings with little to no burden on either the CHW or the FDS coordinators. Once the CHW had volunteered, FDS-based health screenings were planned often within a single email or conversation (Table 1; 3d). On the other hand, the informal organizational structure of FDSs made them vulnerable to closure due to changes in leadership, funding, or space. Transitions in FDS leadership also required CHWs to invest additional time building relationships with the new leadership team (Table 1; 3f).
In this study, we initially set out to examine the logistical factors impacting health screenings in frontier Idaho FDSs. In the process of asking about implementation, however, we realized that trust and relationships determined nearly every aspect of the FDS-CHW collaboration. Our focus shifted to the trust dynamics that CHWs navigated in order to reach a population with significant medical and social needs who utilize frontier FDS services.
FDS-based health screenings were characterized by strong interpersonal trust, but low generalized and institutional trust. Trust was perceived as lower among FDS clients than screening participants in other community spaces, such as health fairs or pharmacies. CHWs attributed this mistrust to their institutional affiliation with the healthcare system, especially if they were from a different town or did not have a pre-existing personal relationship. This is consistent with prior qualitative research on trust in CHWs, which broadly showed that CHWs build interpersonal trust but not necessarily trust in the broader healthcare system.17–20 A patient’s history of discrimination based on race or sexuality,20 perceptions of the healthcare system as being incompetent,30 or suspicion of the financial motivations of healthcare organizations31, 32 can prevent CHWs from cultivating institutional trust. These studies were done in countries with different healthcare delivery systems, however, or among historically marginalized populations in the USA. In contrast, among this predominantly White rural population, institutional mistrust appears to be related to general suspicion of “outsiders,” rather than racism or incompetence of the healthcare system. Future research should study how CHW programs can be designed specifically to address the root causes of institutional mistrust among rural white populations.
Our study also adds to the existing literature on CHWs and trust by examining how partnerships with community-based organizations contribute to trust building. FDSs provided a necessary environment for CHWs to cultivate trust with a generally low-trust population. FDSs were run by local volunteers and community leaders, and benefitted from the interpersonal trust between individual clients and FDS coordinators. Additionally, FDSs did not arouse institutional mistrust due to their informal and relationship-driven structure. By embedding health screenings within the FDS, CHWs could initiate a relationship with FDS clients due to their association with a trusted organization. CHWs then cultivated interpersonal trust through volunteering, mitigating mistrust in them as “outsiders” and representatives of the healthcare system. This interpersonal trust facilitated participation in screenings for chronic disease, but it is unclear whether it facilitated social needs screenings, or whether this interpersonal trust could eventually translate to increased institutional trust.
Our study identified several important takeaways for healthcare providers attempting to build trust in rural communities. First, it strengthened the evidence that CHW programs are important for building trust in low-trust populations. Second, trusted organizations with personal ties to their community, such as FDSs, are vital partners in the effort to reach low-trust rural populations. These organizations may engage high-risk individuals who are unlikely to appear in other community spaces, and provide the only opportunity to reach many community members. Third, healthcare providers must be prepared to make significant investments of time and resources to build interpersonal trust during the initial stages of outreach in rural and frontier communities. Upfront investment in rural CHW programs often yields positive returns in the form of reduced emergency and inpatient expenditures.33 Fourth, because of their informal and relationship-based organizational structure, frontier FDSs are easily threatened by changes in space, funding, and personnel. Logistical barriers or closure of an FDS can interfere with healthcare workers attempting to build trust in rural communities. Therefore, providers and policy makers should consider ways to strengthen rural FDS infrastructure. Finally, healthcare and government institutions must be very cautious when partnering with or providing support to a trusted community organization, as their involvement inherently risks directing institutional mistrust toward these vital rural organizations.
This study has several limitations. The study was not designed to examine trust, but instead studied it as an emergent theme. We did not use trust theory or social capital as a framework for designing our interview guide, and we did not assess generalized, interpersonal, or institutional trust with validated questionnaires. In addition, mistrust in outsiders and healthcare prevented us from interviewing FDS clients directly. We based our understanding of trust dynamics in rural FDSs on the perceptions of CHWs and FDS coordinators. Our sample size was also small, due to the fact that the study took place in a sparsely populated region. As a result, there are likely elements of the trust dynamics among frontier FDSs that we failed to detect or that may have been biased. Future research should address these limitations by employing validated tools to assess interpersonal, generalized, and institutional trust. Researchers should survey a larger sample size of FDS clients in addition to coordinators and CHWs, being mindful of the impact of institutional mistrust on survey and interview responsiveness.
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This research has been funded by The University of Chicago Pritzker School of Medicine, the Merck Foundation Bridging the Gap: Reducing Disparities in Diabetes Care program, and the Chicago Center for Diabetes Translation Research (NIDDK P30 DK092949).
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This research was presented as a poster at the 2020 AcademyHealth Virtual Annual Research Meeting (July 8–August 6, 2020).
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Sommers, I.J., Gunter, K.E., McGrath, K.J. et al. Trust Dynamics of Community Health Workers in Frontier Food Banks and Pantries: a Qualitative Study. J GEN INTERN MED 38 (Suppl 1), 18–24 (2023). https://doi.org/10.1007/s11606-022-07921-7