Social discrimination and healthcare: A multidimensional framework of experiences among a low-income multi-ethnic sample

Abstract

Background:

The study aims to describe the perceived discriminatory healthcare treatment experiences and its impact on care among minority urban dwelling adults.

Methods:

Semi-structured qualitative interviews (N= 51) were conducted with patients from community-based healthcare settings, and systematic, grounded theory approach was used.

Results:

Three distinct themes emerged: (1) the sources of discriminatory experiences; (2) its impact on health care; and (3) the provider/organization recommendations to address discriminatory practices.

Conclusion:

The study highlights the relevance of perceived discrimination in avoidance of healthcare services, non-adherence to treatment, and adverse health-related sequelae by low-income urban dwelling adults with little access to health care.

1. Introduction

Although there have been widespread improvements in the delivery of health care over the last decade, social discrimination remains a significant contributor to the persistent negative health outcomes experienced by racial/ethnic minority populations. Social discrimination is defined as the differentiating treatment of an individual based on their actual or perceived characteristics (e.g., race/ethnicity, age, gender, income status, or medical condition) (Meyer, 2003). In the healthcare setting, this manifests in the opinions, beliefs, behaviors, and attitudes of clinicians, significantly impacting certain disadvantaged populations. For example, healthcare provider bias as a form of social discrimination can be as understated as withholding a full range of treatment options from certain patients based on their conscious or unconscious provider beliefs that these patients are less likely to accept or adhere to certain therapies (Hall et al., 2015; Chapman et al., 2013; Van Ryn, 2002). Social discrimination has been linked to disparities in self-reported physical and mental health (Mays et al., 2017; Eisenberger, Lieberman, & Williams, 2003; Williams, 1996) with the greatest risk of poor health outcomes for racial and ethnic minority groups (Hall et al., 2015; D’Anna, Ponce, & Siegel, 2010; Gee, 2002; Karlsen & Nazroo, 2002; Smedley, Stith, & Nelson, 2003; Williams, Neighbors, & Jackson, 2003). According to a recent study by Stepanikova & Oates (2017), among a sample of respondents to the Behavioral Risk Factor Surveillance System (2005–2013) who sought health care in the past 12 months, the relative risk of reporting discrimination versus equal treatment was nearly quadrupled for Black individuals, whereas Whites who reported Hispanic origin had a 50% higher relative risk of perceived discrimination compared to non-Hispanic White respondents.

Health-compromising outcomes associated with social discrimination include heightened physical stress responses, poor compliance with medical treatment, patient disengagement, and healthcare avoidance behaviors, which all contribute to the higher morbidity and mortality rates found among minority populations compared to non-Hispanic Whites (Hall et al., 2015; Bogart et al., 2010; Greer, 2010; Hausmann, Kressin, Hanusa, & Ibrahim, 2010; Magnus et al., 2010; Mouton et al., 2010; Shelton et al., 2010; Sorkin, Ngo-Metzger, & De Alba, 2010). A national survey revealed 65% of non-Hispanic White patients reported being very satisfied with the quality of health care they received, while only 56% of Hispanic and 45% of Asian patients reported being satisfied with the quality of health care received within the past two years (Sorkin et al., 2010). Lower quality of health care can lead to substantial and pressing differences in the health of Americans, and racial/ethnic minorities have been found to suffer from certain diseases at up to five times the rate of White Americans (Sorkin et al., 2010). For example, social discrimination is a prominent health risk factor associated with a variety of objective clinical disease outcomes, including cardiovascular disease, hypertension, low birth weight, incident asthma, incident breast cancer, and all-cause mortality (Barnes et al., 2008; Williams & Mohammed, 2009; Dolezsar et al., 2014; Taylor et al., 2007; Coogan et al., 2014). Therefore, understanding the causal mechanisms associated with social discrimination is a major public health concern as its pervasive impact underlines the persistent health disparities that exist in the United States healthcare system.

1.1. Research gaps

A large body of work on discrimination in health care has focused on medical provider perceptions and behaviors that lead to inequitable medical testing, referrals, treatment, medical procedures, and pain management (FitzGerald & Hurst, 2017; Hall et al., 2015; Haider et al., 2014; Chapman et al., 2013; Smedley et al., 2003). However, while a number of investigators have aimed to document and measure discrimination in healthcare settings, this field has been significantly limited by the absence of comprehensive, well-tested, reliable, and validated measures of discrimination applicable across multiple racial/ethnic groups (Bastos, Celeste, Faerstein, & Barros, 2010; Blank, Dabady, & Citro, 2004; Kressin, Raymond, & Manze, 2008; Krieger, Chen, Waterman, Rehkopf, & Subramanian, 2005; Landrine, Klonoff, Corral, Fernandez, & Roesch, 2006; Shavers et al., 2012; Williams & Mohammed, 2009). To date, studies have focused on general experiences of discrimination, providing limited information on the complexities and contextual factors that are applicable to healthcare settings (Kressin et al., 2008; Shavers et al., 2012; Williams & Mohammed, 2009). Examples include assessing discrimination as one single experience (Kressin et al., 2008); focusing on African American experiences with little inclusion of other minority groups (Bastos et al., 2010; Blank et al., 2004; Kressin et al., 2008; Krieger, 2000; Williams et al., 2003); expecting that respondents can differentiate racial discrimination from other types of discrimination without providing context (Bastos et al., 2010); failing to include the prevalence and effects of institutional racism/discrimination; and little contextual information surrounding discriminatory acts (Kressin et al., 2008; Landrine et al., 2006; Shavers et al., 2012). As a result of these limitations, little is understood about the stimuli perceived as unfair or discriminatory by patients in healthcare settings and how these perceptions and their effects on patients vary by race/ethnicity (Stepanikova & Oates, 2017; Kressin et al., 2008; Landrine et al., 2006; Shavers et al., 2012). Therefore, more qualitative work is needed to begin to understand, on a deeper level, how social discrimination is uniquely characterized and manifested in medical settings.

1.2. Study aims

A comprehensive investigation of intrapersonal, interpersonal, and environmental characteristics of social discrimination in healthcare settings is merited. Thus, the aim of this study was to develop a better understanding of the specific environmental inputs (institutional and interpersonal) within medical settings that are experienced or perceived by patients as discriminatory or unfair (whether the inputs are intentional or not), the attributions for the unfair treatment, and the actual or potential impacts and coping responses. Using a comprehensive, theory-based interview guide, we examined patients’ perceived impact of the discrimination on care and recommended approaches to provide care that addresses issues related to social discrimination at all three levels (i.e., intrapersonal, interpersonal, and systemic). Qualitative accounts of perceptions and experiences with discrimination are captured in the voices of participants who comprised a multi-racial/ethnic sample of California patients accessing medical care in community-based settings in urban, low-income areas of Los Angeles County.

2. Methods

2.1. Study Design & Sample

Semi-structured thematic interviews were conducted during a five-month period from August through December 2012. Adults, age 19 years or older, who self-identified as African American, English-speaking Latino, Spanish-speaking Latino, English-speaking Asian, or English-speaking Caucasian, and reported that they had experienced racial/ethnic discrimination in a medical care setting at least once were eligible for participation. Individuals who reported no experiences of racial/ethnic discrimination in medical care settings were also included if they agreed that unfair treatment occurred in medical care settings, or if they believed discrimination in medical settings was an important issue. These broad eligibility criteria were employed to include individuals who may not readily report discrimination due to the stigma associated with being a victim of discrimination (Karlsen & Nazroo, 2002). Participants were recruited and screened for eligibility in the waiting rooms of two community-based healthcare settings in Los Angeles County. These locations were selected for the racial/ethnic and linguistic diversity and low-income status of their patient populations, and the range of preventive and primary care services offered at these sites.

Individual and focus group interviews were conducted and audio-recorded by trained research staff in English and Spanish either in a private section of the waiting room or in a private interview room. Interviews were an average of 20 minutes in length while focus groups were approximately 45 minutes. Participants were asked to select pseudonyms that would be used in lieu of their names during the focus group discussions. If any participant identifiers were inadvertently included, markers were removed in the audio files and transcription to maintain anonymity. Participants received either a $10 gift card as compensation for participating in individual interviews or a $25 gift card for participating in a focus group given the focus groups required a larger time commitment and an additional trip to the healthcare setting. All study protocol for the individual and focus group interviews was approved by the university’s Institutional Review Board.

2.2. Conceptual framework

The qualitative interview guide was conceptually guided by a framework of discrimination proposed by Kressin and colleagues (2008). The supporting questions addressed: (1) valuation of the actual or potential discriminatory events, (2) impact of discriminatory events among individuals who experienced them, and (3) effects on patient-healthcare provider interactions (Kressin et al., 2008; Shavers et al., 2012). The interview guide contextualized questions around a broad range of medical care-based experiences that may be discriminatory or unfair, but may not be readily labelled as discriminatory by participants. This allows for a nuanced understanding of perceived discrimination and modes for intervention to (1) combat these experiences in the healthcare setting and (2) account for a wide variety of racial/ethnic groups to assess how racism/discrimination affects healthcare decision making and treatments offered. Without developing a better understanding of individuals’ responses to social discrimination, researchers will not be able to evaluate how significant the experiences were and will not be able to elucidate how such experiences ultimately affect the provision of health care (Kressin et al., 2008). Thus, the comprehensive nature of the interview guide allows for the thorough discussion of intrapersonal, interpersonal, and environmental factors. Participants were not asked about discrimination specific to the clinic where they were recruited, but instead were encouraged to think about all medical settings within which health care had been received in the past. The same interview guide was used for the individual and focus group interviews. Both types of interviews were conducted to not only capture the individual depth when focusing on a single participant and a sensitive topic, but to also explore group dynamics and peer-to-peer interaction when discussing the social phenomena of discrimination.

2.3. Measures

Participants were asked to complete a brief demographic survey and were invited to participate in either an individual interview or a focus group depending on their availability. The interviews were all conducted at the same time as recruitment, while participants who engaged in the focus group had to return on another day.

Participants were asked about how they experience, perceive, and define unfair or discriminatory treatment in medical care settings and actual or potential impacts that may be experienced by patients as a result of unfair treatment. Eligible participants in the study were asked the following questions: (a) What things do doctors, nurses, or office staff say or do that can be considered unfair, disrespectful, or discriminatory?; (b) What things about medical care (other than your interactions with doctors, nurses, and other office staff) might be considered unfair or unequal?; (c) What are some reasons people are treated badly or unfairly when getting medical care?; (d) What are examples of people experiencing unfair or bad treatment in a medical setting; (e) How would you describe bad/unfair treatment that is the result of a person’s race or ethnicity; (f) How would you feel if you did not get fair treatment in a medical care setting? What would you do?; (g) What could happen if someone was mistreated in a medical setting?; and (h) What kinds of things could be changed in medical care settings to make sure that everyone receives fair and equal care? Why is this important to talk about?

2.4. Data analysis

Digital recordings and transcriptions of focus groups were obtained along with interviewers’ handwritten notes to conduct a preliminary analysis of themes. Spanish language interviews were translated to English using back-translation methods to ensure integrity of the data. Trained research assistants conducted a cross comparison of all recordings and transcripts to correct errors in transcription as needed. To examine data patterns among the interview responses, a systematic, grounded theory approach (Corbin & Strauss, 2008; Glaser & Strauss, 1967) was taken, which moved to incorporate coding, consensus, co-occurrence, and comparison methods (Willms et al., 1992). The grounded theory approach is a set of techniques that identifies categories and concepts that emerge in text and links the concepts into substantive and formal theories (Bernard, 2006). Next, a qualitative analytic approach was used to holistically explain the feelings, values, and perceptions of the target population and better capture the language and imagery related to social discrimination. The initial analysis of the focus group interviews provided the basis for an initial codebook with new codes added from the review of the individual interviews. Codes were developed with study co-authors working independently to review transcripts based on a priori themes guided by the areas outlined in the interview guide. The authors met bi-weekly to debrief, discuss interpretations, resolve disagreements through consensus, refine and identify new codes. The finalized codebook emerged from this iterative process.

Line-by-line coding with QSR NVivo 10 software® was done for all transcripts along with drafted reports, queries, and memos to compare findings from both focus group and individual interviews. This process allowed for the extension of the axial coding process to identify associations between a priori and emergent themes. By constantly comparing these categories with one another, the different categories were condensed into broad themes that were linked to sub-themes to better refine the contexts and consequences of the perceived discrimination. Saturation was deemed met once the data analysis no longer yielded new themes not already accounted for in the coding scheme (Glaser & Strauss, 1967).

3. Results

3.1. Sample characteristics

A total of 51 adults participated in either an individual or focus group interview. The age of participants ranged from 21–72 years (M=44.9, SD=12.7) and included: 60.8% Female (n=31), 56.9% Latino (n=29), 21.6% African American (n=11), 9.8% Caucasian (n=5), 3.9% Asian (n=2), and 7.8% other (n=4). A majority of the same identified as English speakers (80.4%; n=41) and a sizable percentage had less than a high school education (39.2%; n=20). See Table 1 for additional study participant demographics.

Table 1:

Summary of sample demographics (n=51)

Category	Total Sample No. (%) or Mean (Range)
Data collection method
Semi-structured interviews	39 (76.5%)
Focus groups	12 (23.5%)
Race/ethnicity
Hispanic/Latino	29 (56.9%)
African American	11 (21.6%)
Caucasian	5 (9.8%)
Asian	2 (3.9%)
Other	4 (7.8%)
Age	M=44.94 (SD= 12.7; 21-72)
Gender
Female	31 (60.8%)
Male	20 (39.2%)
Language Spoken
English	41 (80.4%)
Spanish	10 (19.6%)
Education level*
Less than high school	20 (39.2%)
High school diploma	11 (21.6%)
Technical school	4 (7.8%)
Some college	9 (17.6%)
College degree	6 (11.8%)

^*N=50. One participant chose not to provide level of education.

3.2. Emergent themes

Three distinct dimensions emerged in the experiences of perceived discrimination by recipients of health care: (1) the sources of discriminatory experiences; (2) the impact of the discrimination on care and management of health needs; and (3) the provider and organization recommendation to address discriminatory practices. Within each dimension emerged a refined understanding of the experiences with discrimination that included intrapersonal-individual level factors, interpersonal –provider level factors, and systemic level factors in healthcare settings (see Figure 1). The framework that emerged from the participant descriptions brings forth the perceived causal, contextual, and intervening conditions under which discrimination was described in the use of health services by the participants.

Figure 1.

Framework for experiences of perceived discrimination by recipients of health care.

3.3. Sources of discrimination

3.3.1. Intrapersonal/Individual Level Factors

The analysis identified a range of experiences where personal characteristics such as race/ethnicity, ability to speak English, physical appearance, and presenting physical health status and needs of study participants were contributors to the perceived social discrimination. For example, respondents who identified as Latino and African American described feeling ignored by clinic staff. Similarly, some individuals felt staff ignored patients even when they were of the same ethnicity/race. Latino study participants reported the latter more commonly asserting:

“Well, they discriminate (against) you and they are the very same Latinos or Hispanics.” (Latina participant, Spanish language focus group)

“Because they forget the roots from where they came from. They forget them because they say ‘I reached something much higher than them. I am better than them. I don’t need to help them anymore.” (Latina participant, Spanish language focus group)

Similar experiences were discussed by participants when the exchange with clinic staff was strained due to the participant’s inability to speak English. Language differences between clinic staff and the participants were noted as triggers to discrimination. Participants reported feeling as if they were a burden and ignored by staff when requesting translation services. This led participants to report receiving less care, or what they deemed as inadequate care, to manage health needs. One participant spoke of her mother’s care and limitations in received services due to language barriers.

“She (my mother) didn’t have adequate care and because I didn’t-don’t speak English very well they didn’t pay attention to me.” (Latina participant, Spanish language focus group)

Within the experience of accessing care for specific health needs, participants stated that the perception by clinic staff of their diagnosis and presenting health symptoms also provoked discriminatory feelings in their care experience. Specifically, participants referred to feeling looked down upon and treated unfairly due to their illness, infection, disability, or physical health status.

“People think that if you have a disease you are less than they are. They treat you differently. One doesn’t expect to be in this situation but it can happen to anyone. The treatment is unjust. You can be sick but others who do that are sicker and cruel.” (Latino male, English individual interview)

One participant noted that she perceives staff as judgmental of her illness and care needs thereby contributing to their unwillingness to provide her the same level of care as other patients.

“(Providers say) ‘Ugh! They’re nasty. They have AIDS, hepatitis C.’ They say that because you get it from sex. You are judged.” (African American female, individual interview).

3.3.2. Interpersonal and provider level factors

Although intrapersonal factors focused primarily on the patient’s demographics, such as race/ethnicity and language proficiency, interpersonal factors stress perceptions of disrespect, poor communication, and a lack of compassion in interactions with providers. Therefore, interpersonal factors focus on specific interactions between patients and providers that catalyzed feelings of discrimination. Participants commonly described perceiving staff as unfriendly and/or disrespectful, which impacted their willingness to communicate care needs. This was discussed from perceived overt observations of behaviors around feeling ignored while asking questions to reported lack of eye contact. Further, participants noted fears around speaking on their own behalf when they felt mistreated for fear of repercussions on received care.

“They (clinic staff) shun you. No compassion. You want to say something, but I don’t because I need treatment, and who knows what they’ll do.” (African American female, individual interview)

Due to the felt disconnection, lack of attention, and disrespect from providers and staff, participants reported receiving lower quality of care. Participants discussed providers appearing dismissive and impersonal in the provider-to-patient communication. This created what was viewed as an apathetic and uncomprehensive treatment experience with their medical providers. Participants believed that this experience was rooted in a lack of effort by medical providers that diminished the provider’s ability to understand the patient’s perspectives, provide an accurate diagnosis, and address subsequent care needs.

“They listen half and the other half they don’t listen. Maybe I have something else but they say that’s what I have. So I have to believe in him.” (Latina participant, English language focus group)

Another participant described the burden expressed by providers in managing the language needs of non-English speaking clients as a reason for being treated poorly. The anticipation of these fears around barriers in communication impacted patient openness to accessing services when in need given repeated negative experiences interacting with clinic staff.

3.3.3. Systemic level factors

Numerous participants responded that they perceive the structure of the healthcare delivery system as a contributing factor to their perceived discriminatory experiences. This was often discussed when describing the lack of affordability of services, difficulty in obtaining insurance coverage, long wait times for appointments, and inconsistency of care due to high clinic staff turnover. Participants who reported having no health insurance, are enrolled in Medicaid, or have limited insurance coverage expressed receiving poor treatment because of their insurance status. Because Medicaid is health insurance for individuals in need of financial assistance, one female African American participant noted in an individual interview that due to her Medicaid coverage, she perceived the clinic receptionist to have looked down on her, provide her with poorer medical treatment, and view her with less compassion other patients. Another participant reported:

“How they separate us with insurance from those without insurance. I don’t like that. Everybody should be able to see a good doctor. You can see it and feel it.” (African American male, individual interview)

High turn-over of medical providers in community clinics was also reported as contributing to inconsistent care and was viewed to be particularly high in low-income community clinics more so than other higher resourced areas. Many patients described such issues as more prevalent in their communities compared to others and created lack of follow-up and proper maintenance of their medical needs because of the continual change in providers. This left one participant reporting feeling lost in managing her health needs.

“I used to go to a woman’s clinic and they would have doctors that would be there… like two months, three months or something and you’d be seeing them and they’d be attending to whatever your need is and give you a prescription then when I would come back for a refill. Well, they’re not here anymore so you’re lost basically.” (Latina participant, English language focus group)

3.4. Impact of Discrimination on Care

Experiences with perceived discrimination were reported by participants in having direct impact on emotional well-being and physical health. Participants reported having lower self-reported health status, lack of knowledge to adequately self-manage needs between clinic visits, and feelings of emotional distress due to the discriminatory practices they were exposed to in the clinics. This was especially apparent for those who described complicated processes in accessing care and inability to advocate for themselves due to feelings of discrimination from clinic staff.

3.4.1. Intrapersonal/Individual Level Factors

Participants described a linkage between their own emotional health and experiences with discrimination. Linkages were discussed in directly attributing feelings of low self-worth, self-efficacy, and self-esteem to recurrent exposure to discrimination in the process of seeking care.

“It feels bad. It feels ugly. You feel, well, discriminated and that you have no worth as a person. And then you think could it be because I am old… that I’m ugly, or what? If you see that other people are being called in and you had an appointment. I at least notice and say something.” (Latina participant, Spanish language focus group)

Consequences of discriminatory experiences within health systems infrastructure and negative health outcomes were discussed as resulting from receiving inadequate care. A Latino participant talked about perceived unfair treatment when asked about discrimination and clinic care systems:

“I’ve come without eating. I left my grandchildren with someone else who is not going to take good care of them so I can come to the doctor’s appointment…so turns out he is not going to see me. Where am I going to get the medicine and when am I going to get it? I only have enough for the next few days. I don’t have the appointment for another month or two. That is not fair. It is not fair either.” (Latino participant, Spanish language focus group)

Negative health outcomes were further impacted from participants feeling helpless and unheard in their care experiences and needs. They discussed that such feelings lead to less proactive approaches in managing personal health needs and poor treatment adherence. A Latina participant discussed difficult experiences in obtaining medication making it hard for her to follow through with the doctor provided treatment guidelines:

“I went a long time without taking the pill for my diabetes because they sent me to one near here, a pharmacy. I would arrive and spend half an hour waiting and would never come out. I would get bored and I would leave the medicine there. I delayed about six months without taking it.” (Latina participant, Spanish language focus group)

3.4.2. Interpersonal and Provider Level Factors

Clinic level factors related to patient-provider dynamics and clinic systems of care leading to perceived poor care were discussed as aspects that influenced participant decisions on seeking services. One participant discussed her negative experiences with a clinic doctor where she felt unheard and wanted to change service providers but was unable to do so due to insurance restrictions:

“At doctor’s office you wait a long time even when you have an appointment. The nurses have a bad attitude. (I) Changed doctor because she would only (tell) me what was wrong but would not do tests like blood or mammogram. I was sent back to her by insurance. She has a bad attitude.” (African American female, individual interview)

Ongoing negative care experiences due to perceived discrimination were also related to participants’ inability to build trusting and positive relationships with health providers. Participants described developing a lack of desire to return for follow-up care or avoiding treatment given frustration with previous care experiences. One participant noted what he perceived as the impact of this frustration on other patients noting:

“They’re not going to trust another doctor. If they weren’t treated right the first time they won’t want to go somewhere else.” (African American female, individual interview)

3.4.3. Systemic Level Factors

Delayed processes in receiving treatment embedded in the structure of service administration were described as systems-level discriminatory practices negatively impacting healthcare experiences. Participants identified systemic discriminatory practices as delays in obtaining appointments, long waits to see providers once in the clinic, shortened or rushed provider-patient interactions, and difficulties in accessing medication. One individual interview participant described decisions made in the clinic about prioritizing patients and the perceived racial discrimination in that process:

“[You’re] made to wait all day because of your color. You have an appointment but have to wait all day. They put everyone before you and you’re the last to be seen…I had an appointment and they saw everybody before me. I was the last one in the office.” (African American male, individual interview).

3.5. Recommendation for Care Approaches

Study participants provided perspectives on what could be done in healthcare settings to address issues around experienced discrimination in community health services. The most common themes brought forth were staff training to improve patient-provider communication, education for patients on health management and self-advocacy, and increasing affordability and availability of services. Themes were connected across the spectrum of individual, provider, and systemic level factors in order to provide target points for the improvement of care and prevention of social discriminatory practices.

3.5.1. Intrapersonal/Individual Level Factors

Participants talked openly about the need for services that empower them as consumers to advocate for their needs when faced with discrimination. Repeated within that theme was the need to feel heard and allowing those without a voice an avenue to express their needs. Those who expressed comfort in advocating for their own needs noted that there are many who feel less able to assert their patient rights. One participant stated:

“As (a) patient (I) always tell doctors what is wrong and ask questions. You gotta ask questions and don’t be scared to ask questions particular to your health needs.” (African American male, individual interview)

Those who were apprehensive in speaking out required support and a structure to vocalize their experiences with discrimination in seeking services. Participants positively remarked that when they received follow-up calls from the clinic on their care, it gave them an opportunity to share both negative and positive highlights of their experience. Additional recommendations included administering routine patient surveys that monitor satisfaction and interactions with staff, and assisting patients with filing formal complaints when needed to clinic supervisors. Lastly, participants referenced the need to be heard through the use of patient advocates or staff responsible for responding to patient questions and concerns. Given the busy nature of healthcare service operations and the existing social discrimination practices deeply embedded in these settings, participants highly suggested this utilization of a patient-provider navigation system to combat current norms that impede receipt of effective health care.

3.5.2. Interpersonal and Systemic Level Factors

The infrastructure of healthcare delivery was discussed as a promising intervention point to reduce the impact of discrimination in the process of receiving care. Participants believed that having longer face-to-face meetings with their physicians would help medical providers construct tailored individual care approaches and garner a more holistic understanding of their illness experience. As noted by participants, having medical providers be more cognizant of the underlying causes of their illness would decrease negative provider beliefs about certain patient populations and better help providers support patients in managing their health. Furthermore, patients suggested increasing the amount of education and information clinicians provide will better assist patients in monitoring their own health and adhering to treatment. For example, patients discussed the need for increased patient independence in management of health needs so that there is less pressure and reliance on a system of care that has been historically perceived as unresponsive and limited in capacity to serve the community.

4. Discussion

Understanding the causal mechanisms underlying inequities in health care is imperative to achieving equitable health care, and the utility of this study may inform and change practices that impede access to care due to perceived discrimination. It is notable that previous healthcare discrimination studies and measures have often focused on instances of general discriminatory experiences without refinement of context, and, in the cases where healthcare discrimination has been explored, lifetime and singular instances of interpersonal discrimination have almost exclusively been the focus (Smedley et al., 2003; van Ryn, 2002; van Ryn, Burgess, Malat, & Griffin, 2006; van Ryn & Burke, 2000; van Ryn & Fu, 2003). Consequently, efforts to eliminate healthcare inequities are hindered by the lack of a full understanding of patients’ perceptions of discriminatory behaviors. Specifically, understanding how, when, and where patients perceive they are being treated unfairly within medical settings, whether these instances occur at the intrapersonal, interpersonal or systemic levels, and the impact of each level of discrimination on health care is essential to identifying targets for interventions that ensure equitable access to health care for all individuals (Shavers et al., 2012).

One of the reasons past attempts to measure discrimination in healthcare settings have fallen short is that discrimination is a complex phenomenon created and produced at societal, institutional, and individual levels (Gee, 2002; N Krieger, 2001). Further, the awareness of the experiences of discrimination vary at the individual level and between and within social groups (Benjamins, 2012; Karlsen & Nazroo, 2002; LaVeist, 2005). Interpretations of racial/ethnic discrimination, for example, may vary across groups because racism is expressed differently now than in the past; today it is more institutionalized and covert (Karlsen & Nazroo, 2002), and experiences, perceptions, and attitudes may not be directly observable. Thus, discriminatory occurrences can be ambiguous, subtle, or open to interpretation as found in the presented findings (Davis, Smith, & Marsden, 2001). Participants reported a range of experiences from those within their own cultural groups, to systemic barriers perceived as discriminatory barriers to care, and apathy from care providers due to racial/ethnic identity and illness experience. A further complication is that people are more apt to recognize discrimination against groups as a whole than against themselves as individuals; (Karlsen & Nazroo, 2002) and discrimination may be underreported due to the issue of ‘internalized oppression,’ wherein unfair treatment is perceived by members of stigmatized groups as ‘deserved’ and nondiscriminatory (Krieger & Sydney, 1996). Those who engaged in self-advocacy reported refusing to accept stigmatized status and were more willing to report discriminatory treatment as seen in participant comments, noting the need for patient liaisons to help the process of speaking up. Conversely, research has shown individuals who felt unable to challenge discrimination noted it as painful to admit that they have experienced discrimination (Krieger & Sydney, 1996). Also, the experience of multiple forms of discrimination may not be reduced or easily articulated as a summed experience within the process of accessing and receiving care and a more nuanced reality exists (Karlsen & Nazroo, 2002). Moreover, although practices may be seen as discriminatory among all groups, regardless of race/ethnicity, the impact of discrimination may be different for individuals who are navigating the healthcare system with layers of historical/systemic marginalization. Thus, examining racial/ethnic discrimination is important to better understand this form of discrimination while accounting for this perspective from traditionally underserved communities.

The framework that emerged from the participant descriptions brings forth the perceived intrapersonal, interpersonal and systemic instances of discrimination in the ongoing efforts to seek care to manage health needs. These events may not have been conscious or intentional on the part of the perpetrator, and in some cases, they may be the results of an over-burdened healthcare system and increasing demands placed on providers and staff. Nevertheless, the experiences were perceived as being unfair by patient participants and thus have the potential to affect health and healthcare seeking behaviors. Our findings suggest that negative experiences with health care, even if experienced once or intermittently, have an impact on individuals and may influence decisions for future healthcare access and utilization. Feeling unheard or unimportant in the interaction with a healthcare provider may also lead to feelings of helplessness and negative attitudes toward managing individual needs. Specifically, some participants discussed that such feelings led to less proactive approaches in managing personal health needs and poor treatment adherence. For example, in a study by Penner et al. (2014), the quality of communication between patient and provider largely influences how likely a patient will adhere to treatment decisions. These feelings as seen in the study findings can result in apathy or low self-efficacy for managing one’s own care, complicating health outcomes. Further, such experiences are exacerbated by a history of oppression in many low-income communities resulting in a climate of distrust and distancing from health services. This distancing was noted by participants as related to feeling unheard and lacking reliable forms of care because of limited resources made available to their communities.

Our findings inform the emerging body of work on discrimination in health care. Increased understanding of patients’ perceptions of how, when, and where perceived discrimination occurs within medical settings, and how these experiences affect patients and their future healthcare seeking behaviors can be gleaned from these participant reports. This is important as even with the presented exploratory study, findings illuminate opportunities for additional exploration and potential interventions given the impact of this issue on considerations for and active use of health care by a highly vulnerable population. Even when the perceived unfair treatment may have resulted from pressures within the healthcare system other than social biases, the actualities and implications impact individuals and systems of care. One such intervention may include the provision of patient navigators to help provide linkages in the constant changes in many healthcare settings. These programs may promote independence of patients in managing future needs within complex and often fragmented healthcare systems that may help to alleviate barriers and inequities. Advocacy efforts that allow for patient rights to be asserted in a systemic way without the fear of negative consequences on received care may also be helpful to identify ongoing areas for improvement. Further, programs that work to improve healthcare access such as insurance and cost subsidies should also consider how discriminatory experiences impede sustainable and equitable receipt of care for low-resources communities such as those reflected in this study.

Lastly, findings from this exploratory study suggest that improvements are needed in the tools that are used to identify and measure experiences of discrimination within medical settings to pinpoint interactions and events identified as discriminatory by patients. Specifically, multi-item measures are needed that capture the intrapersonal, interpersonal and systemic sources of discrimination and their impacts to ongoing participation in health care that were identified in this study.

4.1. Limitations

As an exploratory, qualitative study, our sample was intentionally small and was obtained using convenience sampling techniques making it difficult to generalize these findings to patients other than the individuals who participated. Further, as mentioned previously, individuals who reported no experiences of racial/ethnic discrimination in medical care settings were also included if they agreed that unfair treatment occurred in medical care settings, or if they believed discrimination in medical settings was an important issue. Thus, reported comments may not be rooted in actualities of experiences of those directly impacted by perceived healthcare discrimination. Additionally, some investigators have argued for the use of non-inflammatory language when attempting to assess perceptions of discrimination to avoid creating a reaction in the respondent, (Bastos et al., 2010) and, although we attempted to incorporate non-inflammatory language, our interview questions may have biased participants’ responses in ways that are unaccounted for in our results.

4.2. Conclusion & Research Implications

Elucidating and quantifying social discrimination in medical settings is an important public health initiative in that perceived discrimination is linked to avoidance of health care, non-adherence to medical treatment, and a number of adverse health-related sequelae (Blanchard & Lurie, 2004; Bogart et al., 2010; Crawley et al., 2008; Greer, 2010; Hausmann et al., 2008a, 2008b; Hausmann et al., 2010; Kennedy, 2008; Lee et al., 2009; Magnus et al., 2010; Mouton et al., 2010; Peterson et al., 2008; Shelton et al., 2010; Sorkin et al., 2010). Thus, the patient perceptions expressed in our study assist in deepening understanding of the environmental stimuli (institutional and interpersonal) that are experienced and perceived as unfair or discriminatory, the attributes thought to be responsible for the discrimination, and the impacts to patients and patient-provider interactions. Uncovering and understanding the stimuli that are perceived as discriminatory by racial/ethnic minority patients are important first steps to improving our ability to measure discrimination in medical settings and to encouraging enhanced monitoring of environments and interactions that may potentially be perceived as discriminatory. It is our hope that these findings will move others to explore racial/ethnic discrimination in health care in innovative ways, and that these efforts may help to identify targets for intervention, including patient and health system navigation programs, and document areas where training on unintentional discriminatory behaviors may be needed. Ideally, these investigations may lead to enhanced strategies to anticipate, reduce and eliminate all stimuli within medical settings that have the propensity to be perceived as discriminatory.