Abstract
Aims
To explore how students participating in Trio Upward Bound, a federally funded program for low‐income and future first‐time college students, experience bias when seeking healthcare.
Design
Qualitative group discussion.
Methods
Twenty‐six Trio Upward Bound students participated in a group discussion about their experiences in healthcare. Questions for the discussion were developed using Critical Race Theory. Student comments were analysed and coded using Interpretive Phenomenological Analysis (IPA). Results were reported using Standards for Reporting Qualitative Research.
Results
Students reported experiencing bias in the healthcare setting because of age, race, native language, traditional dress and/or ability to advocate for their rights. Three themes emerged: communication, invisibility and healthcare rights. Through these themes students expressed how their experiences with healthcare lead to further cultural mistrust and mistrust of healthcare providers. The comments provided by students included examples of the five tenets of Critical Race Theory: the permanence of racism, colorblindness, interest convergence, Whiteness as property, and the critique of liberalism. Among this group of adolescents, early negative experiences in healthcare have led some to avoid seeking treatment. As this continues into adulthood it may further health disparities in these groups. Critical Race Theory is a valuable tool in understanding how race, class and age intersect to create disparities in healthcare.
Keywords: ageism, bias, cultural, disparities, healthcare, racism
1. INTRODUCTION
In the United States (US), there is a long history of disparate health treatment based on race and ethnicity, leading to both markedly worse health outcomes and cultural mistrust within affected communities. Those who identify as African American/ Black, Native American/Indigenous, Hispanic/Latino and Asian Americans and Pacific Islander typically face this adverse treatment and health outcomes. Speculations on the reason for health disparities are various and have included theories about inherent genetic differences between racial groups, historical trauma, mass incarcerations, lack of access to resources and healthcare, bias among providers, biased institutional healthcare systems (Hammonds & Reverby, 2019) and lack of diversity among healthcare providers (Goode & Landefeld, 2019). Regardless, to reduce or eliminate health disparities, healthcare research must examine the lived experiences of marginalized patients in healthcare settings. This information will allow practitioners, especially nurses, to better understand barriers to health, reasons for cultural mistrust of providers, refusal to seek care and avoidance of wellness treatments such as vaccinations. Additionally, all healthcare providers must examine their biases and minimize these when providing patient care.
While exploring bias in the provision of healthcare is an uncomfortable topic for some, it is essential in maximizing patient outcomes. Research has shown that patients experience bias in healthcare, especially when their identities do not match those of the provider. A study published in 2016, examined the interactions of 18 non‐Black oncologists with 112 of their Black patients (Penner et al., 2016). The providers completed the Implicit Assessment Test (IAT). The researchers then recorded the providers interacting with their patients. After the interaction, patients completed an assessment of the provider's patient‐centeredness and their own distress, trust in the provider and difficulty remembering the content of the visit. The researchers found that providers with higher IAT scores were rated lower by patients on the patient‐centeredness of the visit (β = −0.25, p = 0.01). Patients also had more difficulty remembering the content of the visit when the provider had a higher IAT score (β = 0.15, p = 0.01). When providers showed bias in their interactions, patient care suffered and patients were not able to recall important details about their visit.
Racial bias is not limited to physicians. A study utilizing 2015–2019 Project Implicit data for 76,065 participants found the presence of bias in nursing as well (Jones, 2022). While the data represented over 65 different professions, the researchers categorized it to highlight differences in scores between MDs, RNs and all other professions (also called the general public). The variable of interest was the Implicit Association Test D‐score (IAT D‐score). In general, both RNs and MDs scored higher on the IAT‐Dscore than the other professions (0.3331 and 0.3293 vs. 0.2946, respectively, p < 0.005). These numbers demonstrate a preference for White patients among RNs and MDs (Jones, 2022). In addition to the IAT D‐score, all participants were asked whether their scores reflected their personal values and automatic feelings on the topic. Among nurses, 63.2% believed that their score did not reflect their personal beliefs but instead reflected their culture, and 69.7% also believed that it revealed something about their automatic thoughts and feelings. These indicate a dichotomy in nurses' understanding of their personal biases. While almost 64% of RNs did not feel their score reflected them personally, an even larger number stated the score identified something automatic in their processing of racial identity, which would indicate that the score does, in fact, represent their personal bias.
While these studies are just two examples of bias in healthcare, they demonstrate that bias is present and may be an important factor to consider in patient outcomes. They may also provide some insight into one of the causative factors for health disparities, implicit bias that negatively impacts patient health outcomes. Health disparities are not new to the social context of the U.S. They have a long‐routed history and continue to be problematic today.
2. BACKGROUND
Historically, one of the most poignant examples of disparate and biased health treatment is the Tuskegee Study, which began in the US in 1932. In this study, vital syphilis treatment was withheld from 399 black men for 40 years to determine the long‐term effects of syphilis (Centers for Disease Control and Prevention, 2015). However, healthcare biases and cultural mistrust did not start with the Tuskegee study. Both Africans and Native Americans suffered poor health during slavery through exposure to new diseases and unhygienic quarters that led to outbreaks of dysentery, worms and typhoid fever (Hood, 2001). Additionally, once slaves were emancipated, poverty worsened in their communities, and rates of disease and death increased with little intervention from the public health system (Hammonds & Reverby, 2019). Ultimately, this lack of regard for the health of the Black and Native American populations has led to a culture of mistrust in the healthcare system.
Unfortunately, despite ethical concerns raised and addressed through slavery and Tuskegee, racial and ethnic disparities in health outcomes continue to be widely documented in the US. The COVID‐19 pandemic brought these issues to the forefront due to differences in how the virus affected various racial and ethnic groups. Based on the New York City data, Blacks/African Americans were hospitalized due to COVID‐19 at twice the rate as Whites, and there were twice as many Black/African American deaths as well (Thompson et al., 2020). Additionally, hospitalizations and deaths for Hispanic/Latino populations were about 30% higher than those of the White population (Thompson et al., 2020). Asian Americans also faced disparities during the COVID‐19 pandemic. Early in the pandemic, Asian Americans experienced three times the case fatality rate from COVID‐19 than non‐Hispanic White populations in San Francisco (6.7% vs. 2.4%, respectively) (Yan et al., 2021).
Health disparities are not limited to the current COVID‐19 pandemic. Hypertension rates are higher among non‐Hispanic Black adults (54%) than among non‐Hispanic Whites (46%), non‐Hispanic Asians (39%) and Hispanic adults (36%) (Centers for Disease Control and Prevention, 2020a). The prevalence of diabetes was highest among American Indian/Alaskan Native (14.7%), non‐Hispanic Blacks (11.7%) and Hispanic (12.5%) populations in 2017–2018 (Centers for Disease Control and Prevention, 2020b). Chronic disease not only impacts health but also a person's ability to work and maintain long‐term economic stability (Orentlicher, 2018).
2.1. Critical race theory
Bias in healthcare and health disparities are multifaceted issues, and Critical Race Theory (CRT) provides a foundation for a better understanding of the factors that contribute to them. The CRT framework identifies how societal racism operates in favour of the racial group in power, which in the United States is those who are White, and then disadvantages anyone outside that group (Decuir & Dixon, 2004; Dixson & Rousseau Anderson, 2018; Ladson‐Billings, 1995). Additionally, CRT is founded on the storytelling of the counternarrative, the stories of those who are being disadvantaged and marginalized or ‘othered’ (Decuir & Dixon, 2004; Dixson & Rousseau Anderson, 2018; Graham et al., 2011; Ladson‐Billings, 1995). There are five tenets of CRT: the permanence of racism, colorblindness, Whiteness as property, interest convergence and a critique of liberalism (Decuir & Dixon, 2004; Dixson & Rousseau Anderson, 2018). While the tenets can act independently, they can also interconnect and overlap. For example, forced conformity and assimilation are components of colorblindness, where the unique qualities of cultures and races are disregarded for the accepted ‘norm’ of the dominant group (Dixson & Rousseau Anderson, 2018). However, those that do assimilate may then be ‘granted’ the property rights of Whiteness (Decuir & Dixon, 2004). Critical Race Theory also embraces the intersectionality of race, class and other demographic classifications (Dixson & Rousseau Anderson, 2018). It is often difficult to dissociate the effect of race, class, gender and age on the disparate treatment of individuals. Considering these classifications as interconnected is essential in determining their negating, and possibly compounding effects. Therefore, CRT provides an ideal framework for examining racism and classism in health and healthcare.
The purpose of this study was to explore whether and how racism acts as a barrier to obtaining healthcare for a group of diverse adolescents. It is important to the nursing profession in multiple ways. Nurses are often the first healthcare professional to interact with a patient and can set the tone for the entire visit. Additionally, nurses represent one of the largest groups of healthcare professionals in the United States. According to the 2019 American Community Survey, there were an estimated 2,389,622 registered nurses, 920,780 nursing assistants and 585,167 licensed practical and vocational nurses in the United States (United States Census Bureau, 2022). With this number of registered and licensed professionals, the nursing profession can use the findings of this study to advocate for healthcare justice. Additionally, it will highlight the need for continued changes in training and preparation within nursing education and among currently licensed professionals.
3. METHODS
3.1. Ethics
The protocol for this study was approved by the Institutional Review Board at North Dakota State University (HE20147). Procedures for Standards of Reporting Qualitative Research (SRQR) were followed for this study (O'Brien et al., 2014).
3.2. Design
The participants for the qualitative focus group were students enrolled in the TRIO Upward Bound (TRIO UB) program in the local community. TRIO Upward Bound is a federally funded program for high school students who are low income and/or will become first‐generation college students. The goal of TRIO UB is to create an equitable environment for adolescents to attend and graduate from college. Services provided include tutoring, college entrance exam preparation, assistance with college and scholarship applications, field trips and other activities and socialization with other students from similar backgrounds (North Dakota State University, 2022). TRIO UB students participating in this local program were a racially, ethnically and socioeconomically diverse group of youth and would be at risk of adverse health outcomes and experiencing bias in healthcare. The 53 students enrolled ranged in age from 14 to 18 years. Demographics for these students are listed in Table 1.
TABLE 1.
Demographics of TRIO UB students.
| Demographic characteristic | Number (%) |
|---|---|
| Ethnicity a | |
| Hispanic | 4 (7.6) |
| American Indian/Alaskan Native | 3 (5.7) |
| Asian | 7 (13.2) |
| Black or African American | 26 (46.4) |
| White | 16 (28.6) |
| Gender | |
| Female | 42 (79.3) |
| Male | 11 (20.7) |
| Eligibility criteria | |
| First‐generation only | 4 (7.6) |
| Low‐income and high risk for academic failure | 1 (1.9) |
| Low‐income and first generation | 33 (62.2) |
| Low‐income only | 3 (5.7) |
| Low‐income, first‐generation and high risk for academic failure | 12 (22.6) |
Students could identify as more than 1 race/ethnicity; therefore, the total does not sum to 53 and the percentages do not sum to 100.
During the academic year, the TRIO UB program meets one Saturday per month at the local university. These meetings include a variety of topics focused on college preparation as mentioned previously. The programming is designed to help students navigate the social and institutional barriers to continued education. The weekend sessions are completely voluntary, meaning students may choose to attend or not. Attendance for Saturday events is 25–30 students, which is roughly 50% of the total TRIO UB enrollment.
The researchers chose to conduct a focus group with the TRIO UB students during one of the Saturday sessions. This format was chosen for the following reasons. First, the Saturday meetings captured about 50% of TRIO UB enrollment, which likely provided a larger sample size than sending a survey through mail or email. Secondly, the social setting of the group allowed for natural conversation and perhaps increased the students' comfort level with the researchers. Thirdly, the researchers wanted to observe the students and group dynamics and wanted the students to meet the research team collecting the data to facilitate trust in the research team and process.
An informed consent letter was emailed to parents prior to the discussion date. The letter explained the conversation topic, procedures for granting permission to participate and alternatives to participation. The researchers received an exemption from parent signatures because of the difficulty in getting parents to return the forms. Additionally, students in this program routinely discuss subjects related to race and income and are well supported by trained TRIO UB staff. For parents that did not wish to give consent, they were informed of the option to keep their children at home for this session or to have their child attend the Saturday programming and leave early or participate in a social gathering with TRIO UB staff instead of the discussion. Prior to beginning the discussion, the child assent form was read to the students. Students were informed of their options to participate or not. Alternatives to participation included leaving before the conversation started or at any time during the conversation, participating in social conversation with the TRIO UB staff, or completing their homework. The researchers asked all participants if they had questions prior to commencing the discussion.
3.3. Data collection
The researchers facilitated a group discussion with 26 students who were in attendance on January 11, 2020. All 26 students were in one focus group. This allowed both researchers to observe each student and respond with follow‐up or clarifying questions if needed. Additionally, it gave students the opportunity to identify both researchers, facilitating student trust in the research team. The size of the group was large, and at times, side conversations interfered with audio‐recording quality. Additionally, it created the need to redirect the conversation away from tangential topics. The discussion was in a semi‐structured format. Researchers developed five broad, open‐ended questions to explore students' experiences with healthcare bias using the constructs of CRT (Graham et al., 2011). The questions are listed in Table 2. The researchers did not ask the students to provide demographic data on the day of the discussion. With 26 students in one group, the discussion took the entire 90 min allotted, leaving little time for further data collection. Additionally, the demographics of the TRIO UB program were already well established (see Table 1), making the collection of additional demographic data redundant. The discussion was conducted during the lunch portion of the Saturday meeting. The conversation was recorded using the audio‐recording function on two separate laptops. After the discussion, both recordings were transcribed. Both transcriptions were reviewed by two researchers for accuracy.
TABLE 2.
Discussion questions.
| Questions |
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3.4. Analysis
The researchers chose an Interpretative Phenomenological Analysis (IPA) approach (Smith, 1996) for coding participant comments and developing themes. Through this process, researchers are guided by the participants’ comments and do not code with preconceived notions. It is a process in which researchers interpret how a participant perceives and makes sense of an event (Smith, 1996). While originally developed for use in psychology research, IPA is well suited for health psychology (Smith, 1996). Ideally, participants for IPA research are recruited based on their similar characteristics, as opposed to being chosen based on probability sampling (Alase, 2017). This allows for more detailed experiential data because the participants will be more likely to have encountered the life event (Alase, 2017). As a result of IPA's compatibility with health psychology research and the methodological focus on meaningful human experience, the researchers decided it would be the best approach for thematic coding.
Researchers reviewed the transcripts carefully, then reviewed them again, making notes and highlighting keywords and passages. The passages were then placed into categories based on the themes they represented. Two researchers conducted this process independently. The researchers then compared each other's themes for similarities and differences. Once themes were agreed upon, they were transferred to spreadsheets for further categorization. The researchers then reviewed the transcripts again, collecting quotes and passages for each theme and categorizing them. Once the main themes and corresponding passages were categorized on the spreadsheets, the researchers reviewed the passages again for deeper meaning and subthemes. Researchers then compared groupings again to agree upon subthemes and passages that reflected those subthemes. These processes are consistent with those described by (Osborn & Smith, 1998).
4. RESULTS
Researchers identified three main themes with subthemes. These are listed in Table 3. The following sections are a discussion of the themes and student comments demonstrating each.
TABLE 3.
Themes and subthemes identified using IPA.
| Theme | Subthemes |
|---|---|
| Communication | Native language as a barrier |
| Not being heard | |
| Invisibility | In skill |
| Need to hide cultural practices | |
| Feeling forgotten | |
| Healthcare rights | Lack of understanding |
| Need to be own advocate |
4.1. Communication
The theme of communication contains the subthemes of native language as a barrier to not being heard. While native language is listed as its own subtheme, it should also be noted that it contributes to not being heard.
4.1.1. Native language as a barrier
A native language, other than English, was considered a barrier to receiving good health care. One student relayed a story of translating for her mother at medical appointments with healthcare providers who insisted the mother should learn English. The student explained that she could interpret for her mother, so her mother did not need to learn English.
‘…I usually translate for her [at a medical appointment]. And a lot of the doctors, not like all of them, but some of them, their actions, they are like they're angry that my mom doesn't understand their language. They're like ‘your mom should be like trying her best to learn how.’ And I'm just like, well, my mom doesn't learn the language and that's that. So, I explain things to her and it's like since I'm translating for my mom, they're not going to be as specific about things, like certain stuff, like I think it's because they view me as a kind of like the parent of my mom…… and they just don't treat me as serious as some would to parents.’
4.1.2. Not being heard
Another student mentioned difficulty with using language or interpreter lines, interpreters available by phone, and that while she was willing to interpret for her mother, the healthcare providers insisted on the using the language line interpreters. The student who mentioned this stated that the language line was time‐consuming and disruptive to the healthcare visit. She said that her desire to avoid the interpreter line was disregarded.
‘I told them “I don't need an interpreter.” I don't need that person by they are like “but you have to have one because you are under age.” So I'm like “OK. Like I understand but you are putting a lot of effort in to fixing the telephone and calling them.” It took about half an hour.’
These reported instances of racist, classist, or age‐based discrimination during a visit with a healthcare provider are also examples of intersectionality. Not only did a language and racial or cultural differences create a bias, but the students' age compounded that bias. The biases resulted in communication conflicts in one of several ways: a healthcare provider assumed that the patient and family understood the communication when, in fact, they did not; a minor family member was perceived as an inappropriate translator and therefore was spoken to in simple, non‐medical terms devoid of critical information; or the family was disregarded and little to no medical information was communicated.
Communication conflicts created an environment where the students felt unheard, neglected and/or disrespected. Healthcare providers may have made assumptions that these students and their families would not understand or would not be concerned about the details of their healthcare. The providers may have then spent less time and attention on providing care. Eventually, this could create a cycle of these families being guarded toward the provider, and the provider interpreting it as disinterest, causing the provider to further decrease communication. These conflicts create negative health experiences for patients and prompt them to avoid seeking care. They may also create a self‐fulfilling prophecy for the provider, reinforcing bias that leads to barriers with other patients. Examples of comments that demonstrate these principles are listed below.
‘The first time I went there, they checked everything and they're like ‐ you're fine. So, I just like didn't want to go there and have them tell me I'm fine.’
‘She didn't know that she had the opportunity to ask for someone who has a better understanding of her religion, but she didn't know that because she barely spoke English.’
4.2. Invisibility
Students expressed feeling invisible because of race, age and culture. This invisibility created negative experiences in the healthcare setting or limited their access to quality healthcare.
4.2.1. Invisibility in skill
One student discussed how her parents had immigrated to the United States from India. When they came to the United States, they lost their professional identity. In India, they were an accomplished lawyer and civil engineer. Yet, in the United States, their skills were no longer recognized, which then created a much different financial situation for them. She stated:
‘So my parents, in India, have skills and we had a certain income with such skills such as a lawyer and a civil engineer. They were working. Then after they traveled to the United States, they kind of lost that identity of themselves which kind of made their income level go down because they couldn't work here with what skills they have and that kind of altered their financial income level.’
This invisibility of the skills of her parents places their family in a lower income bracket. With lower‐income levels, optimal health is more difficult to achieve. This may result from lack of or poorer quality health insurance, lack of access to healthy foods, hourly jobs that allow little flexibility for seeking healthcare and lower incomes that limit families' abilities to pay medical bills.
4.2.2. Need to hide cultural practices
Traditional dress is a common practice for many cultures as a way to identify with each other and indicate faith, identity and status. However, for some of the students in the TRIO UB program, it was an expression that provoked discrimination in the healthcare setting. One student described a situation in which her Hijab became a target of discrimination. While seeking medical treatment for a leg injury, she was refused treatment for wearing a traditional hijab. She explained
‘And the lady [receptionist] was sitting there giving me and my mother these nasty stares and she kept looking at us and we didn't know why… And then when we were getting our checkup, the lady looked at me and she goes “Would you remove that so I can do your checkup?” And I was like “What did you say?” and she said “Can you remove that so I can give you a checkup?” and I was like “No, this is a public hospital right?” and she said “Yeah, well some of us have reasons why we don't wanna do things you know?” And I was like “ok, is there another doctor?” and she was like, “No, I'm the only doctor and I need you to remove that”. So we just left.’
After leaving, the student was able to receive the appropriate care at another facility. When cultural practices are not honoured by healthcare providers, patients experience discrimination and bias, which may prevent them from getting the care they need.
4.2.3. Feeling forgotten
Several students stated they felt overlooked and forgotten in waiting rooms, almost as if they had truly been invisible.
‘… my grandma and my aunt were at a hospital and were just waiting. And we got there like really early and my grandma had an appointment. There was like three walk‐ins and they took 2 of them before we got in. And I guess the doctor like forgot. It happened three times, so we just stopped going there.’
Another student described an experience of waiting at the ER with extreme chest pain:
‘So she……called an ambulance and the ambulance didn't come. We had to drive to the hospital and when they saw us, I was like crying. And they made us wait. And they had rooms open because I saw like curtains with beds and I asked my mom if she could ask them if I could lay down. And they were like “oh no, you have to wait.” And we had to wait 20 min. And then they let us in a like open room that was there the whole time, and they were like “oh sorry, we had to get the room ready.”’
One student described the experience her mother had while delivering her younger sibling. This student's mother had experienced delivery complications with all her children, including this most recent delivery. The student described the experience in this way:
‘Okay, so my mother whenever she has given birth there is always some sort of complication. When she was giving birth to my little sister, the doctor like stopped in an was like “oh I have a golf tournament to go to,” and like left. And they had to bring like other nurses in and then she had to have a c‐section, so I feel like sometimes the doctor, or at least then, doesn't have a lot of care of concern for black people.’
Being forgotten or left waiting creates a situation where patients feel that they are not being valued or treated respectfully. However, it is also possible that they were experiencing the healthcare system as many others do. It is not uncommon to have long wait times in clinics or emergency rooms (ER). Additionally, healthcare providers are entitled to respite from work. A provider may disregard a patient to play golf, but the provider may also have been working multiple long shifts and be legally obligated to stop working. However, regardless of the reason, long waits and lack of provider availability led to feelings of invisibility and frustration. In the words of the student, ‘I feel like the doctor… doesn't have a lot of … concern for black people.’
4.3. Healthcare rights
Students believed that it was important for patients to know their healthcare rights. Students said that patients needed to advocate for their care or they may be at risk of receiving inadequate care. Factors that influenced the knowledge of healthcare rights were the length of time living in the United States, proficiency with English (another component of the communication theme), and citizenship status.
‘…I really don't think that there is people that have been in America for a while or like African Americans who were born here. I don't think like if you know somebody understands their rights, like you're not gonna, like others will think twice about disrespecting them as much. And then there's like those people who don't know English, they just got here. They don't understand much and they have this fear that they will go back to their country, that they will be sent back to their country if they like do something wrong…’
‘So, when yeah, a lot of people want Christian doctors, they want people with the same religious views but like when other people come in and like she said she was asked to remove her hijab, and I just assume I wouldn't ask someone that. Because I know, that is like private, that is part of their personal religion. But would they know that they have the opportunity to ask for someone who understands…’
‘And like the girl who got denied, who broke her leg. Like when she got denied, like can I get a different person and the lady told her no. Obviously, she could get a different person because like from being in America for a long time, you have options to get other people but she didn't know that because she barely spoke English so the nurse couldn't say that because they don't know. No, they couldn't get someone else. So it's still on what you know and how you know your rights.’
Understanding patient rights was viewed as a patient's responsibility. Students did not feel patients were entitled to receive appropriate care if they did not know and advocate for their patient's rights. Rights were not viewed as something providers were duty bound to honour, but rather privileges that must be advocated for because otherwise, they would not be given.
5. DISCUSSION
The observations reported by these 26 TRIO UB students demonstrate encounters with bias in healthcare. Students noted overt and subtle interactions that communicated bias against them. While explicit racism can be easily observed, implicit or subtle, racism can be hard to identify and confront. Additionally, a person experiencing discrimination is more likely to lack the structural power to challenge the discrimination they witness, regardless of the type. The consequences of this can be significant for patients from diverse racial and ethnic backgrounds who could fail to get adequate healthcare treatment in the present and future. When coupled with the cost of healthcare, these negative experiences make the inadequate care received not worth the expense. Exploring these experiences, and other scientific literature on healthcare bias, through the lens of CRT can facilitate a better understanding of the consequences of these experiences and how they relate to the history of bias in healthcare.
5.1. Permanence of racism
The experiences shared by TRIO UB students support the permanence of racism in the U.S. healthcare. There are many examples in the scientific literature of this tenet as well. Some examples of racism were presented earlier in this manuscript. Since racism and classism often coincide, it is important to explore the concept of their intersectionality.
Intersectionality can be seen with the student whose parents relocated to the U.S. from India and lost much of their professional identity and income. In her family's case, the loss of income could increase the risk of poor health outcomes. In a case study report of Brigham Health employees and patients during the COVID‐19 pandemic, lower‐paid employees, especially those in environmental services and food service positions, were 10 times more likely to test positive for COVID‐19 (Sivashanker et al., 2020). These workers were also more likely to be ‘people of colour’ (Sivashanker et al., 2020).
Another study explored intersectionality through the perception of pain in both a hypothetical Black and White target (Trawalter et al., 2012). The study consisted of six individual experiments, one of which included 43 licensed nurses and nursing students. The participants were asked to rate their personal pain level in 18 different situations on a scale of 1–4 with 1 as minimum pain and 4 as maximum pain. Then they were asked to rate the pain of a hypothetical Black and White target in those same situations. Using a generalized linear model, the researchers found that the patients rated the pain felt by the hypothetical Black target lower than the pain felt by the hypothetical White target (F(1,38) = 4.90, p = 0.03, d = 0.72). This prompted several more experiments with new groups of participants ranging in sample size from 60–245. Participants in one group were asked to rate the level of privilege and pain of a hypothetical Black target compared to a White target. The Black target was rated with lower privilege (F(1,98) = 21.73, p < 0.0001, d = 0.94) and lower pain when participants did not know the target's social status. However, when participants were given the target's social class, that became more predictive of pain ratings (F(2,230) = 3.78, p = 0.02, η 2 = 0.03). These studies provide insight into assumptions made regarding race and class. Specifically, participants associated being Black with a lower social status, indicating greater hardships in life and less response to pain because of it (Trawalter et al., 2012). When faced with automatic processing tasks, it became clear that participants made assumptions about social class for different races and the level of pain those races experience. Since nurses often evaluate pain and decide when to secure treatment for it, understanding how bias can affect pain assessment is critical.
The intersection of race and class with age is not as prevalent in the literature, at least with regard to adolescent healthcare. Often, ageism research in healthcare focuses on older adults, especially in the nursing literature, which focuses mostly on palliative care and geriatrics. This may indicate a need for more research on the intersectionality of race, class, and age (youth) in the U.S. nursing professional literature.
5.2. Colorblindness
Colorblindness describes the process of treating all people exactly the same, regardless of resources or contextual background (Dixson & Rousseau Anderson, 2018). On the surface, this may seem to ensure fair and equal treatment, however, when dealing with cultures outside the dominant social norm, it creates a disadvantage. Among the TRIO UB students, there is perhaps no more powerful example than the student who was told to remove her hijab so that she could be examined. In this case, the practitioner was blind to the student's cultural needs and treated the hijab as if it were a pair of socks or a sweater, when in fact it held much greater meaning. In this case, the provider needed to allot the headscarf more regard than other articles of clothing and deviate from the standard procedures for care. There are many ways to provide culturally compassionate care for those who practice Islam. These include providing detailed information on what the provider needs to do and why; minimizing exposure of the patient's arms, legs and head; asking permission before touching the patient; matching the patient to a same‐gender provider and allowing a patient to remain in preferred attire during the exam (Attum et al., 2022).
The concept of colorblindness is somewhat difficult to isolate in the literature. This may be due to the interrelated nature of the critique of liberalism, or because it has been studied in a different context. However, not recognizing how a patient's healthcare is influenced by their unique life circumstances can be seen in other contexts. In a qualitative study of persons with lived experiences (PWLE) with homelessness and the social workers that interact with them, the inflexibility of the healthcare system was a major theme (Purkey & MacKenzie, 2019). The 136 social workers surveyed and 10 interviewed repeatedly mentioned that the healthcare system is middle‐class centric and demands conformity to that model. Specifically, patients were often required to have housing before they could receive treatment for substance use. If the patient had access to housing, they would have already secured it before being told to do so. Additionally, demanding housing from a patient fails to account for the factors that lead the person to homelessness. While the current model for healthcare is designed to treat everyone the same, demanding conformity will provide consistent barriers that prevent many people from receiving the assistance they need.
5.3. Whiteness as property
Whiteness entitles individuals and communities to certain property benefits and the rights to use those benefits as they choose and to confer or deny the property and benefits to others (Ladson‐Billings, 1995). Many of the comments under the Feeling Forgotten theme reflect the Whiteness as a property tenet. Students reported being left to wait while watching others be seen. One student was left in pain when he could see there was an open room. Another mentioned the practitioner just forgot about her family member. In these examples, the entire healthcare system could be viewed as the ‘Whiteness’ entity with its facilities and providers as the property and being seen in a timely manner as a ‘right’. In these cases, Whiteness entities withheld their property resources and did not confer the rights of use to the students.
A study conducted by McLemore et al. (2018) provides another perspective on Whiteness as property. The study was a secondary analysis of focus group data on the topic of preterm birth (PTB) that had been gathered in Oakland and Fresno, California. The study involved 45 women, identifying as Black, Hispanic or multi‐racial, who had experienced 122 pregnancies and 111 total births. Through a phenomenological approach, the researchers identified five themes including disrespect, stressful interactions, inconsistent social support, unmet informational needs and confidence in parenting newborns. Multiple participants shared experiences that centred on Whiteness as property including a pregnant Hispanic teen who was told by a nurse to put her child up for adoption; a black woman who reported a doctor in an ER treating her with little courtesy immediately after being very polite to a white couple, and women who identified as Hispanic and a new immigrant who was told by a nurse to leave the NICU, after which her infant died (McLemore et al., 2018). Through these examples, it becomes very clear that these patients were not considered eligible for healthcare rights afforded to those who are White.
5.4. Interest convergence
As an extension of whiteness as property, interest convergence centres around the need for any major social change to benefit the group in power before the change will occur (Decuir & Dixon, 2004). In other words, if those in power do not see the benefits of a social change, they will fight against it. An example of interest convergence within the TRIO UB student experiences came from the student whose mother had several high‐risk pregnancies, and during one of them, her provider left the delivery to play golf. When her mother's care was in line with the provider's interests, he provided care. As soon as it did not converge with his interests, the provider was no longer available.
Interest convergence can also be seen in the movement to diversify the healthcare workforce. Along with many other health professions, it is estimated that approximately 80.8% of RNs identify as white (American Association of Colleges of Nursing, 2022). In fact, some have stated that ‘the most obvious examples of healthcare's history of racial injustice includes the exclusion of African Americans from medical and nursing education’ (Moore & Drake, 2021). Reasons given for diversifying include better patient care and experiences and alleviating critical healthcare staff shortages (Goodin, 2003; Stanford, 2020). While these changes are much needed to create healthcare justice, it is possible that these changes became a priority to serve the interests of the system or because the inequity was so obvious it could no longer be ignored. Early in 2020, the COVID‐19 pandemic and the deaths of black community members at the hands of local police thrust disparities and inequities into public consciousness (University of St. Augustine for Health Sciences, 2021). While diversity efforts were already underway, these events made the need to diversify an urgent concern and likely would have created social upheaval if not addressed. Regardless of the reasons, healthcare diversity efforts are a much‐needed and welcome priority.
5.5. Critique of liberalism
Critique of liberalism incorporates aspects of colorblindness and interest convergence (Decuir & Dixon, 2004). The background of this tenet is rooted in criticism that liberal legal ideology claims the law is neutral and does not see colour, and social change must occur in slow, incremental steps for the group in power to accept (Decuir & Dixon, 2004). This view of liberalism assumes that all people have the same level of ability to achieve, when in fact some groups have been historically disadvantaged and therefore, cannot possibly achieve the same level of self‐actualization as others. Language barriers, which were mentioned by our students, provide a context for exploring this tenet. Language barriers can occur in multiple ways. The patient and provider might have different native languages, or even different dialects of the same language, or could speak the same languages but have different literacy levels. Regardless, if the patient is not able to understand the provider, the patient cannot fully participate in care and never self‐actualize with regard to their health. This can lead to feeling disregarded, becoming invisible, refusing to seek care, or not engaging in activities to maintain health. The use of interpreters and language lines has helped alleviate some of this, however, low literacy levels continue to be a major concern. In these ways, language barriers create a situation where neutrality and colorblindness are not an option. Special accommodations must be made in these cases to allow patients to fully understand their care.
In a survey of 102 transgender women of colour ages 18–24 living in New York City, Chicago, the San Francisco Bay area and Los Angeles, Eastwood et al. (2021) explored various sociodemographic variables, including homelessness, and their association with HIV serum viral load. Approximately 75% of the participants experienced homelessness in the previous 6 months, 93% were living below the 2013 federal poverty level, and alcohol and drug use was problematic in 14% and 16%, respectively (Eastwood et al., 2021). Researchers found that young transgender women of colour were far less likely to have an HIV test showing a low serum viral load in the past 6 months if they had experienced homelessness (Adjusted Odds Ratio [AOR] of 0.10, 0.02–0.57, p = 0.010). Additionally, they were more likely to be food insecure (AOR = 9.24, 2.13–40.16, p = 0.002) and lack social support from another transgender friend (AOR = 0.09, 0.02–0.53, p = 0.008). This research demonstrates the multifactorial challenges facing transgender women of colour. If a person is struggling with homelessness, substance abuse and lack of social support, it is unreasonable to assume active participation in healthcare treatment. Neutral and ‘colorblind’ approaches to treatment will be unsuccessful. Treatment approaches must be tailored to the specific needs of the patient and address more fundamental survival needs first.
5.6. Limitations
This study focused on a relatively small group of students who participated in a voluntary program. Since students were free to join or leave the conversations at any time, some students may not have had the opportunity to add comments to all parts of the discussion. It is also possible that only the most motivated students were present on the day of the discussion. The discussion was conducted on a Saturday, so students with different health experiences may not have been present that day.
While our total sample size was relatively small, it was large for focus or discussion groups and for IPA (Alase, 2017). Typically, IPA analyses are done with individual interviews and with 2–25 participants (Alase, 2017). This makes our group of 26 who were all in one session seem beyond the scope of IPA. Due to time limits and the difficulty of communicating with these families outside of the TRIO UB sessions, the researchers streamlined data collection and applied IPA to the group transcripts. The size of the group may have caused some students to be silent when they would have preferred to share more. It may also have created a situation where only the most dominant voices were heard.
At the time of the study, one of the research team members was the Academic Coordinator for the Trio UB program. The TRIO UB coordinator works directly with TRIO participants providing personal and group academic advising and coaching to promote academic success, personal growth, and access to higher education. In addition, the coordinator assists in all aspects of recruitment, programming and curriculum development for the Upward Bound program. She was present at the time of discussion. This may have influenced student discussion. However, as she was also responsible for the group and many of these students were under the age of 18, her presence was necessary.
While all attempts were made to maintain objectivity with this study, the researchers are also subject to inherent biases. All the researchers identify as White and female. The researchers' race could have also created mistrust among the students. Additionally, the researchers lived experiences differ from those of these students. The researchers identified as ‘middle class’ which places them at an income discrepancy with some of the students. Interpretative Phenomenological Analysis and Critical Race Theory were chosen for this study to minimize the impact of bias on the researchers. When these students' comments were analysed using IPA and explored through the lens of CRT, it allowed the students' lived experiences to guide the research. Critical Race Theory makes it difficult to ‘whitewash’ this data. Additionally, using IPA for coding the data allowed the researchers to explore themes without adding their preconceived notions of race and healthcare to the data analysis.
6. CONCLUSIONS
Despite the increasing diversity in the United States, there are still disparities and inequities in health and in the healthcare system. Results of this study indicate students of varying race, class and age groups have witnessed or experienced disparate treatment in healthcare. Critical Race Theory provides a useful framework from which to explore these experiences and others documented in the scientific literature.
For nurses, this information is extremely important. First, nurses can take an assessment of their personal biases and practice from a mindset of equity and justice. By taking the time to understand their patients' concerns and values and making all attempts to honour those, even if it is not what they believe is best, nurses can build trust with their patients and encourage patients' participation in healthcare. Autonomy and justice are two of the ethical foundations of nursing (Haddad & Geiger, 2022). Patients have a right to make decisions based on what they believe is best and to be treated respectfully and valued when those interests do not match their provider's (Haddad & Geiger, 2022). Nurses can seek and participate in educational opportunities to enhance their cultural sensitivity and humility. Facilities can support this by providing sponsored training, covering training costs, allowing releases from work duty. Additionally, facilities should consider a thoughtful review of policies and resources that may be limiting care for marginalized groups.
Given the size of the nursing profession, nurses can support systematic change as well. Nurses can advocate for equitable educational standards that allow for more diversity in the nursing profession and advocate for more inclusive medical practices and healthcare facilities. This may also set an example for other healthcare professions. Systematic change that leads to valuing all races, cultures, social classes, ages, gender/gender identities and ability levels and providing healthcare through an equitable lens will be needed to create health equity.
FUNDING INFORMATION
The authors have no funding to report for this research.
CONFLICT OF INTEREST STATEMENT
The authors declare no conflicts of interest.
ETHICS STATEMENT
The study was approved by the Institutional Review Board at North Dakota State University, Fargo, ND (HE20147).
ACKNOWLEDGEMENTS
The authors would like to acknowledge the TRIO/Upward Bound staff and students, without whom, this study would not have been possible.
Hilliard, E. , Twiss, B. , & Pearson, M. (2023). Upward bound students' experience with bias in healthcare: An application of critical race theory. Nursing Open, 10, 5682–5692. 10.1002/nop2.1814
DATA AVAILABILITY STATEMENT
Deidentified data is available from the corresponding author, Elizabeth Hilliard, at North Dakota State University. Please email elizabeth.hilliard@ndsu.edu.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
Deidentified data is available from the corresponding author, Elizabeth Hilliard, at North Dakota State University. Please email elizabeth.hilliard@ndsu.edu.
