By Anna Seaman
Most people who reside within rural areas of the country lack access to healthcare facilities, physicians, and vital health-related resources. Spleen explains that rural populations have been associated with more significant rates of “healthcare avoidance” (Spleen). The absence of providers and an overall shortage of healthcare resources within rural areas have led to reduced patient visits with physicians. Similarly, stigmas and social barriers have worsened attitudes and awareness toward healthcare. Further, living within a rural area has an increased risk of “delayed care entry” (Ohl). This has resulted in those who need urgent care for a pressing issue to be more likely to forgo these visits until they are truly dire. This can be a result of healthcare avoidance exacerbated by the lack of access to care in rural areas. Further, this can lead to severe health-related problems that may have been avoided through early screening.
Distrust in healthcare is a dangerous phenomenon, which can lead to a cycle of reduced care and add to worse healthcare outcomes. When healthcare systems do not adequately meet a person’s needs or place barriers to care, it can be easy to dislike or distrust the entire healthcare system. Various interviews within the Stories to Save Lives Project by the Southern Oral History Project address distrust within the healthcare system. These recollections of interactions with healthcare systems and providers highlight the need for interventions to improve healthcare relations within rural communities.
Terry Alston Jones is a woman from Warren County, North Carolina, who recounts her experiences growing up with her grandmother on her rural farm. Her grandmother’s strong presence in the community granted her access to the stories of many community members. She specifically outlines a member of her rural community’s slow treatment with breast cancer. This community member did not have the means or access to treatment options such as chemotherapy, so she decided to fight cancer at home with the support of her community. Ms. Jones states,
“There was no chemo. And if there was chemo, we didn’t have access to it in this area.”
This community member eventually passed from cancer. Urban centers are more likely to have the resources to provide complex treatments. When there is a lack of access, it can lead to community-wide hesitancy to pursue treatment for similar ailments. Ultimately, this can cause distrust within healthcare systems or healthcare avoidance.
Distrust in healthcare is linked to adverse health outcomes. Studies have shown that distrust in health care is becoming more prevalent. The self-reported health of people who indicated that they had a strong distrust in healthcare was shown to be significantly worse than those who had trusting relationships with healthcare providers in a study by Armstrong. There are specifically rural-urban disparities in healthcare outcomes. The “gap in mortality” between people living in rural and urban locations is growing. (Loccoh). The significant differences between these two groups could be one potential cause for distrust. These three concepts are intrinsically linked. People living in rural areas have less access to healthcare resources, which leads to mistrust. Mistrust leads to worsening health outcomes, which cause disparities between these two groups. These differences can further the mistrust of rural communities. The cyclical nature of distrust in rural areas has led to a system that leaves people behind. There must be interventions to end this cycle.
Stephanie Atkinson, a nurse in rural North Carolina, describes her interactions with the healthcare system. She has a deep understanding of the inequities her patients face and explains their distrust. Her knowledge stems from conversations with patients and experiences with rural health care. She specifically explains the shortcomings of the CDC when conducting the unethical Tuskegee syphilis study. This study used 600 black men as test subjects to discover the long-term impacts of syphilis. These men were not informed of the nature of this study and were not treated for this disease. Instead, they were inhumanely treated, and many died as a result of the actions taken by the researchers (Tuskegee University). Ms. Atkinson learned about these problems through cultural competency training. She explicitly explains that it opened her eyes to targeted populations and stated,
“Guess who did this? The CDC. Guess who this targeted? Black males of a certain age. Guess who some of your hardest patients to get to trust physicians are? Black males of a certain age.”
She explains that studies and injustices such as these have had lasting impacts on population-wide mistrust in health systems. Medical errors and microaggressions can build up over time to cause community-wide mistrust (Dovidio).
Although these mistrust systems have been built up over many years, we must begin to make changes to the system to mend these relationships. We must try to reimagine doctor-patient relationships and physician education. There have already been cultural shifts that have emphasized the importance of culturally competent and compassionate doctors. We must continue to emphasize the importance of understanding a patient as a whole person to give holistic care. Physicians can do this by collaborating with organizations like the Southern Oral History Project to hear about patients’ experiences with healthcare. This would give them a better understanding of how to approach future care. Further, a patient-centered care model similar to the UK could be adopted to foster these relationships. This type of care must be “embedded” into all healthcare system levels (Coulter). This mistrust could be reduced and eventually eliminated through cultural competency and a motivated effort to build trust systems.
Ysaura Rodriguez, a mother in rural North Carolina, exemplifies how doctor-patient relationships can be built with trust and compassion. She speaks about her healthcare provider and the process of building a relationship. She explains,
“I think it’s the communication between us, and more than that, she gained my trust. And I have never [found] anybody like her. I have seen good doctors, I mean, really, but this one in specific, it’s like- I don’t know. It’s like she’s part of my family.”
It took time and communication, but she has a healthy relationship with her physician, which has resulted in better health outcomes. She has been able to speak to her physician about dietary concerns and familial problems without judgment. Their relationship goes beyond the clinical setting, which has been fundamental in improving the care she receives.
Hospitals have begun to engage in trust-building measures with nearby rural populations. They are aiming to combat the historic systems of mistrust that have existed. Studies have shown that understanding communities is vital to establishing long-lasting, good relationships (Nandyal). Through the commitment of communities, health workers, hospital administration, and policymakers, changes can be made to improve this system. We must continue to listen to members of the community. The Stories to Save Lives can give a deep look into how communities feel. Their experiences are a vital base of knowledge that can inform everyone on how we can approach reforming healthcare in the future.
Spleen, Angela M et al. “Health care avoidance among rural populations: results from a nationally representative survey.” The Journal of rural health : official journal of the American Rural Health Association and the National Rural Health Care Association vol. 30,1 (2014): 79-88. doi:10.1111/jrh.12032
Ohl, Michael et al. “Rural residence is associated with delayed care entry and increased mortality among veterans with human immunodeficiency virus infection.” Medical care vol. 48,12 (2010): 1064-70. doi:10.1097/MLR.0b013e3181ef60c2
Jones, Terry Alston. Interview with Susie Penman. 11 June 2019 (Y-0050). Southern Oral History Program Collection (#4007), Wilson Library, University of North Carolina at Chapel Hill.
Armstrong, Katrina et al. “Distrust of the health care system and self-reported health in the United States.” Journal of general internal medicine vol. 21,4 (2006): 292-7. doi:10.1111/j.1525-1497.2006.00396.x
Loccoh, Emefah et al. “Rural-Urban Disparities In All-Cause Mortality Among Low-Income Medicare Beneficiaries, 2004-17.” Health affairs (Project Hope) vol. 40,2 (2021): 289-296. doi:10.1377/hlthaff.2020.00420
Atkinson, Stephanie. Interview with Maddy Kameny. 25 June 2018 (Y-0003). Southern Oral History Program Collection (#4007), Wilson Library, University of North Carolina at Chapel Hill.
Dovidio, John F., et al. “Disparities and distrust: the implications of psychological processes for understanding racial disparities in health and health care.” Social science & medicine 67.3 (2008): 478-486.
Rodriguez, Ysaura. Interview with Joanna Ramirez. 29 June 2018 (Y-0044). Southern Oral History Program Collection (#4007), Wilson Library, University of North Carolina at Chapel Hill.
Nandyal, Samantha et al. “Building trust in American hospital-community development projects: a scoping review.” Journal of community hospital internal medicine perspectives vol. 11,4 439-445. 21 Jun. 2021, doi:10.1080/20009666.2021.1929048
Coulter, Angela, and John Oldham. “Person-centred care: what is it and how do we get there?.” Future hospital journal vol. 3,2 (2016): 114-116. doi:10.7861/futurehosp.3-2-114