Describing Perceived Racial Bias Among Youth With Sickle Cell Disease

Describing Perceived Racial Bias Among Youth With Sickle Cell Disease Abstract Objectives Sickle cell disease (SCD) predominately affects Black Americans. This is the first study of its kind to describe the racial bias experiences of youth with SCD and their reactions to these experiences. Methods Participants were 20 youth with SCD (ages 13–21 years) who were asked to describe any racial bias events they experienced, as recorded on the Perception of Racism in Children and Youth measure (PRaCY). Interviews were recorded, transcribed, and analyzed by two independent raters using a conventional content analysis approach. Results All participants reported at least one incident of racial bias. Content analysis of racial bias events (n = 104) yielded 4 categories and 12 subcategories as follows: Perpetrator (Peers, Authority Figures, and General Public), Type of Racial Bias (Explicit, Implicit), Behavioral Reaction (Approach, Avoidant), and Emotional Response (Dysphoria, Anger, Unconcerned, Inferior, Anxious). Discussion This study provides a description of racial bias experiences within community and medical settings and highlights the need for further evaluation of the impact of racial bias among youth with SCD. adolescents, race/ethnicity, sickle cell disease Sickle cell disease (SCD) is a genetic chronic illness estimated to affect between 70,000 and 100,000 individuals in the United States (Yawn et al., 2014). Biological symptoms of SCD include anemia, acute chest syndrome, infection, and stroke, with pain being the most common characteristic of SCD (Day & Wynn, 2000). SCD-related pain episodes can transition to chronic daily pain (Gil, Williams, Thompson, & Kinney, 1991; Smith & Scherer, 2010). SCD is associated with diminished physical functioning and greater health service use for youth (Gil et al., 2003), including both emergency department visits and calls to physicians (Gil et al., 1991; Smith & Scherer, 2010). Various factors, including stress, cold climates, dehydration, and infections, may predispose an individual to have a pain crisis that can further trigger complications including acute chest syndrome, a painful and life-threatening vaso-occlusive crisis of the pulmonary vasculature (Wright & Ahmedzai, 2010). In the United States, SCD primarily affects Black youth; yet, little information is known about the role of race, or stress associated with perceived racial bias, among young people with SCD, either in the community or in medical settings. Broadly defined, racial bias is negative beliefs, attitudes, or behaviors toward a group of people based on racial differences (Pachter, Szalacha, Bernstein, & Garcia Coll, 2010). These racial biases tend to lead to differential treatment and to poorer health outcomes (Williams & Mohammed, 2009). To date, no study has investigated the prevalence of racial bias, or described experiences of bias, among youth with SCD. The lack of research in this area is particularly concerning because it is suspected that there is a high prevalence of bias events, and perceived racial bias, among healthy Black American high school students (Pachter, Bernstein, Szalacha, & Garcia Coll, 2010). These racial bias experiences have been associated with negative psychological outcomes, such as symptoms of anxiety and depression, low self-esteem, and behavioral difficulties in pediatric populations (Pachter & Garcia Coll, 2009). Several conceptual models have linked perceived racial bias to increased risk of negative health outcomes (Clark, Anderson, Clark, & Williams, 1999; Jackson, Kubzansky, & Wright, 2006; Meghani & Gallagher, 2008). The accumulation of environmental stressors has been linked to an overstimulation of neuroendocrine–immune systems causing allostatic load and increasing vulnerability to disease processes (McEwen, 1998). Tomfohr and colleagues (2016), in a study of 176 men and women, discovered that African-Americans had significantly higher allostatic load than White Americans, and that this discrepancy was mediated by occurrences of racial discrimination in the community. Thus, there are physical health implications in the experience of racial bias that may exacerbate chronic illnesses. An evaluation of the role of racial bias among youth with SCD has clinical implications for pediatric psychologists, who are frequently on the frontlines in determining the psychosocial factors that impact biological processes among pediatric populations. SCD has been historically conceptualized as a “Black disease” within the medical community (Bediako & Moffitt, 2011; Wailoo, 2001). There is evidence of racial bias within the context of health-care settings for adults with SCD. Research suggests that adult patients with SCD presenting to the ED may have longer wait times when compared with non-SCD patients (Haywood, Tanabe, Naik, Beach, & Lanzkron, 2013). Strickland and colleagues (2001) demonstrated that 80% of their adult sample with SCD reported that they attempted to use the health-care system as little as possible, managing their symptoms at home, because of their perception that physicians view them as drug seeking patients. Owing to the lack of research in youth with SCD, racial bias within health care systems may be unrecognized. Direct evidence of racial inequities in the quality of treatment for children with SCD is not available in the current literature, likely because of the low prevalence of SCD in those who are not Black. The best evidence available that suggests possible racial inequities in treatment confounds race and medical condition. For instance, in the Emergency Department, children with SCD reporting high pain intensity, 88% of whom were African-American, experienced greater delays in receiving analgesic medicine than children with long bone fractures, 15% of whom were African-American (Zempsky, Corsi & McKay, 2011). Parents of children with SCD, however, do perceive that racial bias impacts the quality of health care their children receive (Burnes et al., 2008), and these perceptions may shape the perspectives of their adolescent children (Neblett, Philip, Cogburn & Sellers, 2006). Additional data suggest that racial biases may be particularly prevalent in SCD. Black parents of children with SCD were found to be more likely to perceive that race negatively impacted the quality of care their children received when compared with Black parents of children with asthma (Brousseau et al., 2009). Yet, youth with SCD have not been directly evaluated regarding their own perceptions of racial bias. There are different types of racial biases encountered by Black Americans. Explicit racial bias consists of negative beliefs of a racial group that are consciously held, whereas implicit racial bias involves a lack of awareness of negative associations with a racial group (Dovidio, Kawakami, & Gaertner, 2002). An individual with explicit bias may directly discriminate, either by verbal or physical means, against a member of that racial group, where as an individual with implicit bias may enact this bias through nondirect means, such as nonverbal communication or unintentional exclusion. Thus, the experiences of these two racial biases are different. The aversive racism theory may help explain the implicit racial bias that has been shown in many subject samples. This theory postulates that even individuals who embrace racial equality for all races harbor automatic negative impressions of Black individuals that often emerge in spontaneous contexts (Dovidio & Gaertner, 2004; Gaertner & Dovidio, 1986), particularly nonverbal communication cues. This phenomenon has been investigated and empirically supported within medical settings (Penner et al., 2010) and will be examined in the current study. A systematic review of the literature examining self-reported experiences of racial bias and health revealed that a major limitation of such research was a lack of psychometrically sound measures for the assessment of perceived racism (Paradies, 2006). As a result, Pachter and colleagues (2010) developed a perceived racial bias measure using qualitative interviews with 14 children from minority backgrounds (ages 9 and 16 years) and validating items extracted from these interviews among 277 children (38% Latino, 31% African-American, and 19% multiracial), ages 8–18 years, recruited from YMCA youth organizations and local high schools. Participants completed the Perception of Racism in Children and Youth measure (PRaCY), which describes potential settings or contexts in which children may have encountered racial bias and records the frequency of these occurrences. The authors found that 88.4% of the sample reported at least one incident of racism and about one third of the children reported that the event happened in school. As illustrated above, perceived racism is common among healthy Black American youth (Pachter, Bernstein, et al. 2010.), and perceived racial bias within the health-care system has negative implications for the management of SCD for adults (Strickland et al., 2001). Racial bias not only has implications for the quality of life of youth with SCD but also for physical health outcomes. Unfortunately, little is known about the racial bias experiences of youth with SCD. To fill that gap in the literature, we administered the PRaCY with additional questions focused on perceived racial bias within the medical setting to youth with SCD, and then interviewed them to more fully characterize these events and their reactions. Given that healthy Black American youth endorse a high frequency of community racial bias (Pachter, Bernstein, et al., 2010), we expected that our sample would also report racial bias in several contexts, including within hospital environments. Methods Participants and Recruitment/Enrollment Procedures Participants enrolled in the current study were 20 Black American youth diagnosed with SCD. Youth with SCD were approached to participate in a mixed quantitative–qualitative design study during a clinical appointment or while hospitalized at an urban children’s hospital in the Northeast United States between May 2012 and June 2014. Participants were included if they had documented SCD, were between the ages of 13 and 21 years, identified as Black American, and were English-speaking. Patients were told that the purpose of the study was to understand their experience of SCD, and that questions about race, mood, and daily activities would be included. Patients were informed that the interview was a part of the study procedures before enrolling in the study. Of the 34 patients approached by one of four reasearch personnel, four patients were not interested and two did not have sufficient time to complete the study materials. There were no significant differences in patient characteristics between the 6 patients who did not participate and the 28 who enrolled in the quantitative study on age, gender, and SCD genotype. Of the 28 enrolled in the larger study, one participant was excluded for not endorsing any perceived racial bias events and therefore did not provide any interview data. In total, 7 of the remaining 27 participants did not complete the interview for a variety of reasons, including feeling uncomfortable disclosing perceived racial bias information (n = 5) and the additional time needed to complete the interview following quantitative data collection (n = 2). While the interview was an expectation of the study, we did not exclude participants for withdrawing from this aspect of the study. As a result, 20 participants (74.07%) of our convenience sample were included. Independent sample t-tests did not detect any significant differences in demographic or racial bias events between participants who completed the qualitative interview and those who did not. Sample characteristics are presented in Table I. Table I. Demographic Information Descriptive variables % (N) Sex  Female 70.0 (14)  Male 30.0 (6)  Race 75.0 (15)  Black or African-American 25.0 (5) More than one race  SCD typea  HbSS 70.0 (14)  HbSC 25.0 (5)  HbBeta0thalassemia 5.0 (1) Current treatments  Hydroxyurea 50.0 (10)  Chronic transfusions 20.0 (4) Enrolled  Routine outpatient appointment 45.0 (9)  Inpatient hospitalization 55.0 (11) Descriptive variables % (N) Sex  Female 70.0 (14)  Male 30.0 (6)  Race 75.0 (15)  Black or African-American 25.0 (5) More than one race  SCD typea  HbSS 70.0 (14)  HbSC 25.0 (5)  HbBeta0thalassemia 5.0 (1) Current treatments  Hydroxyurea 50.0 (10)  Chronic transfusions 20.0 (4) Enrolled  Routine outpatient appointment 45.0 (9)  Inpatient hospitalization 55.0 (11) a HbSS = hemoglobin SS disease; HbSC= hemoglobin SC disease; HbBeta0thalassemia = hemoglobin SB 0 (Beta-zero) thalassemia. Table I. Demographic Information Descriptive variables % (N) Sex  Female 70.0 (14)  Male 30.0 (6)  Race 75.0 (15)  Black or African-American 25.0 (5) More than one race  SCD typea  HbSS 70.0 (14)  HbSC 25.0 (5)  HbBeta0thalassemia 5.0 (1) Current treatments  Hydroxyurea 50.0 (10)  Chronic transfusions 20.0 (4) Enrolled  Routine outpatient appointment 45.0 (9)  Inpatient hospitalization 55.0 (11) Descriptive variables % (N) Sex  Female 70.0 (14)  Male 30.0 (6)  Race 75.0 (15)  Black or African-American 25.0 (5) More than one race  SCD typea  HbSS 70.0 (14)  HbSC 25.0 (5)  HbBeta0thalassemia 5.0 (1) Current treatments  Hydroxyurea 50.0 (10)  Chronic transfusions 20.0 (4) Enrolled  Routine outpatient appointment 45.0 (9)  Inpatient hospitalization 55.0 (11) a HbSS = hemoglobin SS disease; HbSC= hemoglobin SC disease; HbBeta0thalassemia = hemoglobin SB 0 (Beta-zero) thalassemia. The study was approved by the university Human Subjects Committee and the hospital institutional review board. Informed consent was obtained from a legal guardian or from the participant if he or she was >18 years old. Child assent was also obtained for participants of age <18 years. Consent was also obtained for a protected health information release form to gain access to the participant’s medical record to conduct the chart review for an SCD disease measure used in the quantitative study. Constructs, Measures, and Data Collection Procedures Demographic Questionnaire Information about the age, gender, race, ethnicity, SCD genotype, and medical treatment was collected using a general information form completed by the participant. This information was used for sample descriptive purposes. Perceived Racial Bias Perceived racial bias was assessed via the PRaCY (Pachter, Bernstein, et al., 2010) and a follow-up interview. The PRaCY consists of 10 items asking adolescents about situations of racial bias they may have experienced within their community. If the participant endorses an item, he or she marks the frequency of the event using a five-point Likert scale (ranging from once to weekly). The total score of the PRaCY was calculated by using the total frequency score of the PRaCY items endorsed by participants. The PRaCY demonstrated stable interitem correlation, construct validity, and reliability among a sample of 227 healthy African-American youth (Pachter, Szalacha, et al., 2010). An additional four items were included in this measure assessing perceived racial bias within the medical community (with permission granted by Pachter). These items were developed using an expert panel of pediatric researchers, including the primary author of the PRaCY study, a pain physician, and a pediatric psychologist, all of whom had experience in instrument development, pain, and SCD. When the four additional items were included in the PRaCY, the measure demonstrated acceptable full-scale internal reliability (α = 0.73) as demonstrated in the larger study with 28 participants (blinded for review). Responses to the PRaCY were the basis for the racial bias interview. A study script was used by the research personnel to conduct the interviews in a standardized way. All research personnel were specifically trained to administer the PRaCY and conduct the follow-up interview. After the participant completed the perceived racial bias measure, the research assistant interviewed the participant separately from his or her parent to reduce any potential bias. The interviews were conducted either in the outpatient clinic or the patient’s hospital room, depending on the setting in which he or she was originally recruited. During the interview, the research assistant reread any item the participant had marked “Yes” and provided the following prompts: “tell me more about that experience” or “what was that like for you?” The interviews were audio recorded and transcribed verbatim for analysis. The amount of time needed to complete the interview ranged from <1 to 15 minutes and was dependent on the number of items endorsed by the participant, which ranged from 1 to 12 items (M = 5.16, SD = 3.18). Data Analysis Frequency analysis was used to determine the percentage of the sample who endorsed each of the PRaCY items. Content analysis of the PRaCY interviews was conducted manually (meaning without the use of computer software) by two independent raters (graduate-level psychology students) using the conventional content analysis approach described in Hsieh & Shannon (2005). There were several characteristics about the racial bias events for which we sought to gather information. We were specifically interested in how the racial bias events occurred, who caused the event, and how the youth reacted. To characterize the racial bias events, we developed two sets of codes a priori, based on a review of the literature, specifically: racial bias perpetrator and type of racial bias (explicit and implicit biases). As the PRaCY measure asked questions about specific categories of persons as the source of the racial bias (i.e., teachers, police officers, and peers), we developed the racial bias perpetrator code before analyzing the data. To describe the reactions of youth with SCD to these events, we used inductive methods. Two overarching categories of reactions emerged from the data: Behavioral Reactions and Emotional Responses, each with additional subcategories. A percentage of rater agreement was calculated for each category. A code book was developed that included four codes or major total categories: Racial Bias Perpetrator, Type of Racial Bias (implict or explicit), Behavioral Reaction, and Emotional Response. The raters discussed and resolved discordant coding for racial bias events. Frequencies were used to describe the percentage of the sample who endorsed each qualitative category. Results All participants endorsed community racial bias and four participants described medical racial bias experiences. Table II presents the percentage of participants who endorsed each of the PRaCY items for both community and medical settings. Among the 20 participants who completed the interviews, 112 bias events were described. Of the total number of racial bias events, nine responses were removed from the analysis because of the participants stating that the event was not attributed to racial bias (n = 4), the event was related more to sickle cell stigma than color of their skin (n = 3), or the event happened to a family member instead of the participant (n = 1). As a result, there were 104 racial bias events included in the content analysis of the interviews. Table II. Perceived Racial Bias by Youth With SCD: Percent of Sample Endorsement and Mean of Frequency Perceived racial bias item % M (SD) Community environment  Been watched closely or followed  around by security guards or store  clerks at a store or mall 50.0 1.15 (1.27)  Been treated unfairly by a police officer 20.0 0.30 (0.66)  Been accused of something you did not  do at school 50.0 1.10 (1.33)  Been treated badly or unfairly by a  teacher? 50.0 1.55 (1.90)  Had the feeling that someone was afraid  of you? 35.0 0.60 (0.88)  Been called an insulting name? 60.0 1.70 (1.66)  Had someone make a bad or insulting  remark about your race, ethnicity, or  language? 70.0 1.40 (1.35)  Had someone be rude to you? 50.0 1.25 (1.62)  Had people assume you are not smart or  intelligent? 60.0 1.25 (1.37)  Seen your parents or other family  members treated unfairly or badly  because of the color of their skin,  language, accent, or because they  came from a different country or  culture? 45.0 1.15 (1.53) Medical environment  Been treated badly or unfairly in the  emergency room? 5.0 0.10 (0.45)  Been badly or unfairly during a clinic  appointment? 10.0 0.10 (0.31)  Been treated badly or unfairly while  hospitalized? 15.0 0.20 (0.52)  Been treated differently than other  children in the hospital? 5.0 0.10 (0.45) Perceived racial bias item % M (SD) Community environment  Been watched closely or followed  around by security guards or store  clerks at a store or mall 50.0 1.15 (1.27)  Been treated unfairly by a police officer 20.0 0.30 (0.66)  Been accused of something you did not  do at school 50.0 1.10 (1.33)  Been treated badly or unfairly by a  teacher? 50.0 1.55 (1.90)  Had the feeling that someone was afraid  of you? 35.0 0.60 (0.88)  Been called an insulting name? 60.0 1.70 (1.66)  Had someone make a bad or insulting  remark about your race, ethnicity, or  language? 70.0 1.40 (1.35)  Had someone be rude to you? 50.0 1.25 (1.62)  Had people assume you are not smart or  intelligent? 60.0 1.25 (1.37)  Seen your parents or other family  members treated unfairly or badly  because of the color of their skin,  language, accent, or because they  came from a different country or  culture? 45.0 1.15 (1.53) Medical environment  Been treated badly or unfairly in the  emergency room? 5.0 0.10 (0.45)  Been badly or unfairly during a clinic  appointment? 10.0 0.10 (0.31)  Been treated badly or unfairly while  hospitalized? 15.0 0.20 (0.52)  Been treated differently than other  children in the hospital? 5.0 0.10 (0.45) Note. SCD = Sickle cell disease. Table II. Perceived Racial Bias by Youth With SCD: Percent of Sample Endorsement and Mean of Frequency Perceived racial bias item % M (SD) Community environment  Been watched closely or followed  around by security guards or store  clerks at a store or mall 50.0 1.15 (1.27)  Been treated unfairly by a police officer 20.0 0.30 (0.66)  Been accused of something you did not  do at school 50.0 1.10 (1.33)  Been treated badly or unfairly by a  teacher? 50.0 1.55 (1.90)  Had the feeling that someone was afraid  of you? 35.0 0.60 (0.88)  Been called an insulting name? 60.0 1.70 (1.66)  Had someone make a bad or insulting  remark about your race, ethnicity, or  language? 70.0 1.40 (1.35)  Had someone be rude to you? 50.0 1.25 (1.62)  Had people assume you are not smart or  intelligent? 60.0 1.25 (1.37)  Seen your parents or other family  members treated unfairly or badly  because of the color of their skin,  language, accent, or because they  came from a different country or  culture? 45.0 1.15 (1.53) Medical environment  Been treated badly or unfairly in the  emergency room? 5.0 0.10 (0.45)  Been badly or unfairly during a clinic  appointment? 10.0 0.10 (0.31)  Been treated badly or unfairly while  hospitalized? 15.0 0.20 (0.52)  Been treated differently than other  children in the hospital? 5.0 0.10 (0.45) Perceived racial bias item % M (SD) Community environment  Been watched closely or followed  around by security guards or store  clerks at a store or mall 50.0 1.15 (1.27)  Been treated unfairly by a police officer 20.0 0.30 (0.66)  Been accused of something you did not  do at school 50.0 1.10 (1.33)  Been treated badly or unfairly by a  teacher? 50.0 1.55 (1.90)  Had the feeling that someone was afraid  of you? 35.0 0.60 (0.88)  Been called an insulting name? 60.0 1.70 (1.66)  Had someone make a bad or insulting  remark about your race, ethnicity, or  language? 70.0 1.40 (1.35)  Had someone be rude to you? 50.0 1.25 (1.62)  Had people assume you are not smart or  intelligent? 60.0 1.25 (1.37)  Seen your parents or other family  members treated unfairly or badly  because of the color of their skin,  language, accent, or because they  came from a different country or  culture? 45.0 1.15 (1.53) Medical environment  Been treated badly or unfairly in the  emergency room? 5.0 0.10 (0.45)  Been badly or unfairly during a clinic  appointment? 10.0 0.10 (0.31)  Been treated badly or unfairly while  hospitalized? 15.0 0.20 (0.52)  Been treated differently than other  children in the hospital? 5.0 0.10 (0.45) Note. SCD = Sickle cell disease. Through content analysis, we characterized racial bias events in regard to Perpetrator (Peers, Authority Figures, General Population) and Type (Explicit, Implicit) and youth reactions in regard to Behaviors (Approach, Avoidant) and Emotions (Dysphoria, Anger, Unconcerned, Inferior, Anxious). These categories and the subcategories developed are presented in Table III. The level of rater agreement for each category was as follows: Racial Bias Perpetrator (94.6%), Type of Racial Bias (88.4%), Behavioral Reaction (90.2%), and Emotional Response (97.8%). Table III. Coded Categories and Subcategories: Description and the Percent of Sample Endorsing Each Event Category Subcategory Definition % Perpetrator Peer Racist event caused by person or persons similar in age 23.7 Authority Figures Racist event caused by person or persons having power to command, determine, judge, or enforce laws 50.5 General Population Person or persons caused racist event described more generally, without a specified type of perpetrator 27.8 Type of racism Explicit Racist behavior consciously acted on by perpetrator 50.6 Implicit Racist behavior indicating automatic negative race associations 49.5 Behavioral reaction Approach Reaction to event was described as confronting the situation 57.5 Avoidant Reaction to racist event was described as avoiding the situation 42.6 Emotional response Dysphoria Described experience using sad, hurt, upset, or horrible 27.9 Anger Described experience using terms of angry, mad, upset, or annoyed 20.9 Unconcerned Described experience using terms of not bothered, happy, or funny 18.6 Inferior Described experience using terms of disrespected, offended, insulted, bothered, or stereotyped 16.3 Anxious Described experience using terms of shocked, panic, or scared 9.3 Other Described experience using terms that did not fall into a clear category, such as “weird” and “bad” 7.0 Category Subcategory Definition % Perpetrator Peer Racist event caused by person or persons similar in age 23.7 Authority Figures Racist event caused by person or persons having power to command, determine, judge, or enforce laws 50.5 General Population Person or persons caused racist event described more generally, without a specified type of perpetrator 27.8 Type of racism Explicit Racist behavior consciously acted on by perpetrator 50.6 Implicit Racist behavior indicating automatic negative race associations 49.5 Behavioral reaction Approach Reaction to event was described as confronting the situation 57.5 Avoidant Reaction to racist event was described as avoiding the situation 42.6 Emotional response Dysphoria Described experience using sad, hurt, upset, or horrible 27.9 Anger Described experience using terms of angry, mad, upset, or annoyed 20.9 Unconcerned Described experience using terms of not bothered, happy, or funny 18.6 Inferior Described experience using terms of disrespected, offended, insulted, bothered, or stereotyped 16.3 Anxious Described experience using terms of shocked, panic, or scared 9.3 Other Described experience using terms that did not fall into a clear category, such as “weird” and “bad” 7.0 Table III. Coded Categories and Subcategories: Description and the Percent of Sample Endorsing Each Event Category Subcategory Definition % Perpetrator Peer Racist event caused by person or persons similar in age 23.7 Authority Figures Racist event caused by person or persons having power to command, determine, judge, or enforce laws 50.5 General Population Person or persons caused racist event described more generally, without a specified type of perpetrator 27.8 Type of racism Explicit Racist behavior consciously acted on by perpetrator 50.6 Implicit Racist behavior indicating automatic negative race associations 49.5 Behavioral reaction Approach Reaction to event was described as confronting the situation 57.5 Avoidant Reaction to racist event was described as avoiding the situation 42.6 Emotional response Dysphoria Described experience using sad, hurt, upset, or horrible 27.9 Anger Described experience using terms of angry, mad, upset, or annoyed 20.9 Unconcerned Described experience using terms of not bothered, happy, or funny 18.6 Inferior Described experience using terms of disrespected, offended, insulted, bothered, or stereotyped 16.3 Anxious Described experience using terms of shocked, panic, or scared 9.3 Other Described experience using terms that did not fall into a clear category, such as “weird” and “bad” 7.0 Category Subcategory Definition % Perpetrator Peer Racist event caused by person or persons similar in age 23.7 Authority Figures Racist event caused by person or persons having power to command, determine, judge, or enforce laws 50.5 General Population Person or persons caused racist event described more generally, without a specified type of perpetrator 27.8 Type of racism Explicit Racist behavior consciously acted on by perpetrator 50.6 Implicit Racist behavior indicating automatic negative race associations 49.5 Behavioral reaction Approach Reaction to event was described as confronting the situation 57.5 Avoidant Reaction to racist event was described as avoiding the situation 42.6 Emotional response Dysphoria Described experience using sad, hurt, upset, or horrible 27.9 Anger Described experience using terms of angry, mad, upset, or annoyed 20.9 Unconcerned Described experience using terms of not bothered, happy, or funny 18.6 Inferior Described experience using terms of disrespected, offended, insulted, bothered, or stereotyped 16.3 Anxious Described experience using terms of shocked, panic, or scared 9.3 Other Described experience using terms that did not fall into a clear category, such as “weird” and “bad” 7.0 Racial Bias Perpetrator Three distinct groups of people were identified as sources of racial bias: peers, authority figures, and others in the general population. The raters also coded two racial bias events that were examples of internal racial bias, which means that the racist event was perpetrated by another within their own racial group. Peers A response was coded as peer perpetrator when the event was caused by a person or persons who had equal standing with another, such as age. An example of a response that indicated peer perpetration was as follows: “I feel when I walk down the hallway that people think black people are a gang…just the color of your skin. So when I walk down the hallway some boy will ask me…‘Oh, so you’re dating a gangbanger?’ Another participant stated, “I was dealing with this girl… [who said] I don’t want to say the words but like you know, the n-word and stupid, black b****.” Both of these instances occurred in a school setting with a peer who incited the racial bias situation. Authority Figures Authority figures were defined as persons who had the power to command, determine, judge, or enforce rules or laws. Three items on the PRaCY asked about racial discrimination situations with authority figures, specifically store clerks, police offers, and teachers. One participant described an experience with police officers: So I was walking back home, the cops stopped us and first of all they got out of the car and they unlatched their nightsticks. I had a panic attack but while I was like trying to regain my breath the guy said “Why don’t you read an f’ing book?” and he said “Where’s your mom?” and he was like “She’s probably on the sofa someplace laid up.” There were also racial bias events describing racial bias of store clerks, assessed by the PRaCY item asking about “being watched closely by a store clerk or security guard.” One participant reported: I had the money for it and everything like that, but one of the sales associates was following me…eventually I put the shirt down, but the guy still had me go up in front of the cash register and check my bag. General Population There were racial bias events in which participants described feeling discriminated against more generally, which were coded as general population within the racial bias perpetrator category. For example: I think automatically, I don’t know what it is but it’s like…just ignorant comments, like they assume that you know, you’re just going to live off of welfare and get pregnant at a young age and stupid crap like that. It’s like “You’re going to live off of the government.” It’s so ignorant to think like that. Type of Racial Bias Type of racial bias was identified with two subcategories of explicit and implicit racial bias. The racial bias measure included two questions that specifically pulled for explicit racial bias events, which were: “Been called an insulting name” (60.0%) and “Had someone make a bad or insulting remark about your race, ethnicity, or language?” (70.0%). The measure also included two questions that specifically pulled for implicit racial bias events which were: “Had the feeling that someone was afraid of you” (35.0%) and “Been treated differently than other children in the hospital” (5.0%). Explicit Racial Bias Explicit racial bias events were defined by racist behaviors that were consciously acted on by the perpetrator. An example of explicit racial bias in the form of an insult experienced by one of the participants was as follows: “Oh, I’ve been called ‘You’re too black to be on Earth’, ‘Nobody can see you’, ‘[clicks mouth] go back to Africa…’.” These insults by others were coded as explicit racial bias, as they were examples of racial discrimination that appeared to be more consciously conducted on by the perpetrator. For example, one participant reported: “It was a teacher…She said, ‘See, this is why black people got discrimination because you all just too dumb to know anything’.” Implicit Racial Bias There were racial bias events that suggested implicit racial bias, as defined by automatic, less conscious negative race associations that were ambiguous and indirect. The following is an example of an implicit racial bias response described by one of the participants: I had last-minute brought in my mom’s signature for a field trip and they thought I forged my mom’s signature and I didn’t. And my mom was at work so she couldn’t answer her phone to defend me and they had me sit there the whole day helping second graders all day when I didn’t do anything…they still made me sat there the whole day because they didn’t believe me. This response is an example if an implicit bias response because of the indirect nature of the interaction between the participant and the perpetrator of the racial bias. Behavioral Reaction Behavioral reactions to the racial bias events fell into two categories: Approach and Avoidant responses. Approach Response Participant racial bias events that included a description of their behavioral reaction to the event in which they confronted the situation were coded as an approach response. For example, one participant described his or her reaction to a teacher who stated that Black people were discriminated against because of their lack of intelligence in the following dialogue: I got in trouble because I cussed her out. I was like “Excuse me, first of all you can’t say that that’s why we got discriminated. We get discriminated because of the color of our skin, not how dumb we are. The participant directly confronted the teacher verbally about her comment, thus indicating an approach response. Avoidant Response A racial bias reaction was coded as an avoidant response if the participant described him or herself as avoiding the threat or perpetrator. For instance, one participant described his or her experience at the mall as follows: I don’t really like going to the mall that often…but when you do, people watch you and you feel uncomfortable…sometimes that could be because you’re black; sometimes it could be because you’re wearing the wrong thing…that’s why I don’t really go to the mall. Owing to perceptions of racial bias at the mall, this participant attempted to avoid even going to the mall. This response is also an example of an implicit bias experience. Emotional Response Five emotional subcategories were developed as presented in Table III. We also developed an “other” category for racial bias events that did not fall into clear categories, such as “bully,” “weird,” and “bad.” Of the terms that did fall into clear categories, the three most often reported emotional response subcategories were dysphoric mood (e.g., sad, hurt, and horrible), anger (e.g., angry, mad, upset, and annoyed), and unconcerned (e.g., bothered, happy, and funny). An example of dysphoric mood is, one participant stated, “Just like being sad, like it happened, like just not getting why people do people do that. It’s like, I don’t know, just to think that a lot of people still make fun of people’s races because of their skin color or whatever, or like where they come from.” This participant indicated that she was sad when she experiences racial bias. Medical Racial Bias From the interview transcripts, those participants who did report perceived racial bias within medical settings (n = 4) described these events as pertaining to one particular medical staff member who was repeatedly rude (n = 2), feeling that they needed to wait longer than others during clinic appointments (n = 1), or that pain was discounted at a different hospital setting (n = 1). One racial bias event described detailed an experience at a hospital outside of our institution: “Well, I was in [outside hospital location]…I had gotten sick and I had been taken to the ER up in the [outside hospital location]…it seemed like we were in The Twilight Zone. I’m so used to coming to [our institution] and getting like good care or whatever…I actually had to like wait two hours while I was in pain, like really bad pain to get treated.” Relatively few racial bias events in medical settings were endorsed on the PRaCY and later described in the interview. Discussion To our knowledge, there has been no research dedicated to understanding the sources of and reactions to racial bias events among youth with SCD. The purpose of the current study was to characterize racial bias events and reactions to these events of adolescents and young adults with SCD using mixed quantitative and qualitative methods. As expected, our sample endorsed perceived racial bias events within community and medical settings, but the majority of the experiences endorsed were within the community environment. We were also able to capture behavioral and emotional reactions to these events within our sample. These findings support the need to evaluate this construct clinically among youth with SCD. Currently, racial bias is not routinely evaluated despite its frequent endorsement and psychosocial implications. We suggest that pediatric psychologists routinely inquire about racial bias experiences for youth with SCD and the impact that these experiences have on their medical care and well-being. Pediatric psychologists can also address behavioral or emotional racial bias reactions that may negative impact the quality of life of these patients or interfere with medical care. Perceived racial bias contributes to barriers to health-care utilization (Stanton et al., 2010) and poorer disease outcomes among adults with SCD (Haywood et al., 2014). Thus, it is important to begin evaluating and targeting these racial bias events in adolescence. There may also be a potential impact of racial bias experiences on patients’ transition of care to adulthood. Additionally, our findings support that racial bias events may influence the emotional well-being of youth with SCD, for which pediatric psychologists can target with psychological intervention. Participants reported that the racial bias events that they perceived were caused by both authority figures and their peers. The number of events of racial bias perpetrated by authority figures is concerning and has considerable school and community implications. This is an important consideration, as the literature suggests that racial bias prevention programs within schools target bullying by students (Eslea & Mukhtar, 2000). To our knowledge, there are no programs that address race-related bullying by teaching or administrative staff. The need to address racial bias in authority figures is significant, as these experiences may lead to feelings of lack of safety because of the power differential within the dyad. Pediatric psychologists can use school collaboration to target reports of racial bias within school settings. Our sample reported few instances of medical racial bias. It is possible that racial health disparity is experienced less within the children’s hospital of our study, as indicated in the description provided by one of our participants in the ‘Results’ section. Another potential reason is that participants in this study may have not been forthcoming with bias reports about the medical setting, as they were recruited during a visit at a medical appointment. It is also possible that parents may have experienced more racial bias within medical settings and/or have more awareness of institutional racism. The literature on the impact of the race of the patient on medical treatment within pediatric settings is limited, and more research is needed to fully capture racial bias experiences within the health-care setting, as it may affect an individual’s comfort in seeking health care (Bediako & King-Meadows, 2016; Jenerette & Brewer, 2010) and comfort within their community. While the current study demonstrated differences between prevalence of perceived racial bias reported within community and medical environments, another distinction emerged regarding the type of racial bias. The qualitative findings of the current study identified explicit and implicit forms of racial bias. It is important to identify and understand the experience of racial bias within community and medical environments in youth with SCD to improve their health care and quality of life. Our participants reported experiencing a range of negative emotions, including sadness and anger, in response to the racial bias episodes, supporting the belief that racial bias can be conceptualized as a stressor among youth with SCD. Brondolo and colleagues (2009) conducted a review of coping with racism and concluded that reactions to racism can be dependent on several factors, including the overt nature of the racism, availability of coping resources, and racial identity of the individual. We identified two different behavioral reactions to the racial bias events in our sample, specifically approach and avoidant reactions. Approach and avoidance coping models have been reviewed and studied within the stress and coping literature. This model postulates that an individual either use approach strategies, such as seeking support from others, or avoidance strategies, such as denying or minimizing the experience, when faced with a stress-provoking situation (Compas, Connor-Smith, Saltzman, Thomsen, & Wadsworth, 2001; Gonzales, Tein, Sandler, & Friedman, 2001). Racial identity also has shown to be influential in one’s experience of racial discrimination (Sellers, Copeland-Linder, Martin & Lewis, 2006). Other factors that seem to contribute to depressive symptoms include strength of cultural pride and alertness to discrimination (Davis & Stevenson, 2006). Thus, there are individual- and community-level factors that may influence an individual’s reaction and ability to cope with racial bias events. The literature on coping with racial discrimination is limited, and more research is needed in both adolescent and adult populations. Our findings need to be considered in light of a few limitations. While many participants appeared to be open and willing to discuss the impact of race and culture in their experience with SCD, research personnel observed a discomfort in seven participants during the interview portion of the study. All research personnel who recruited and conducted the interviews for the study were Caucasian and associated with the children’s hospital, thus potentially increasing the level of discomfort for participants to discuss perceived racial bias events, particularly in the medical setting. Previous research suggests that African-American participants are more comfortable and forthcoming in interviews and/or questionnaires concerning racially based experiences when the race of the interviewer matched their own (Davis et al., 2013). Future research should consider this concern by having interviewers who are of the same race as the research participants and recruitment of youth with SCD in a community setting. Another limitation of the current study is that the racial bias experiences were only captured using the PRaCY measure. It is possible that youth with SCD experience other racial bias events that are not included in the PRaCY measure that was developed within a healthy African-American sample. We also approached a convenience sample of youth with SCD that is reflective of a small group of youth. It is possible that there may be a wider range of racial bias experiences in the broader pediatric SCD population. Future research should also investigate any differences in the experience of racial bias across age and gender groups, which is a topic that the current research was not designed to examine. While there has been an increased emphasis on the psychosocial evaluation of youth with chronic health conditions, the literature on stress related to perceived racial bias events among youth with SCD is severely underdeveloped. Further work and research is needed to understand racial biases experienced by youth with SCD and their families in both community and medical settings and to determine how these events and reactions to them influence the health care sought and received by these youth throughout their lifespan (Bediako et al., 2016). Acknowledgments The authors would like to acknowledge the contributions of the Staff of the CT Children’s Medical Center Department of Hematology/Oncology for their support of research-related activities of this study and most of all to the youth with SCD and their families who were courageous in sharing their experiences with racial bias to allow us to increase awareness of these experiences to the research and clinical community. Funding This research is supported by the Goldfarb Pain and Palliative Medicine Fund. Conflicts of interest: None declared. References Bediako S. M. , King-Meadows T. ( 2016 ). Public support for sickle-cell disease funding: does race matter? Race and Social Problems , 8 , 186 – 195 . doi: 10.1007/s12552-016-9173-x Google Scholar CrossRef Search ADS Bediako S. M. , Lanzkron S. , Diener-West M. , Onojobi G. , Beach M. C. , Haywood C. ( 2016 ). 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Describing Perceived Racial Bias Among Youth With Sickle Cell Disease

Journal of Pediatric Psychology , Volume Advance Article (7) – Mar 17, 2018

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Abstract

Abstract Objectives Sickle cell disease (SCD) predominately affects Black Americans. This is the first study of its kind to describe the racial bias experiences of youth with SCD and their reactions to these experiences. Methods Participants were 20 youth with SCD (ages 13–21 years) who were asked to describe any racial bias events they experienced, as recorded on the Perception of Racism in Children and Youth measure (PRaCY). Interviews were recorded, transcribed, and analyzed by two independent raters using a conventional content analysis approach. Results All participants reported at least one incident of racial bias. Content analysis of racial bias events (n = 104) yielded 4 categories and 12 subcategories as follows: Perpetrator (Peers, Authority Figures, and General Public), Type of Racial Bias (Explicit, Implicit), Behavioral Reaction (Approach, Avoidant), and Emotional Response (Dysphoria, Anger, Unconcerned, Inferior, Anxious). Discussion This study provides a description of racial bias experiences within community and medical settings and highlights the need for further evaluation of the impact of racial bias among youth with SCD. adolescents, race/ethnicity, sickle cell disease Sickle cell disease (SCD) is a genetic chronic illness estimated to affect between 70,000 and 100,000 individuals in the United States (Yawn et al., 2014). Biological symptoms of SCD include anemia, acute chest syndrome, infection, and stroke, with pain being the most common characteristic of SCD (Day & Wynn, 2000). SCD-related pain episodes can transition to chronic daily pain (Gil, Williams, Thompson, & Kinney, 1991; Smith & Scherer, 2010). SCD is associated with diminished physical functioning and greater health service use for youth (Gil et al., 2003), including both emergency department visits and calls to physicians (Gil et al., 1991; Smith & Scherer, 2010). Various factors, including stress, cold climates, dehydration, and infections, may predispose an individual to have a pain crisis that can further trigger complications including acute chest syndrome, a painful and life-threatening vaso-occlusive crisis of the pulmonary vasculature (Wright & Ahmedzai, 2010). In the United States, SCD primarily affects Black youth; yet, little information is known about the role of race, or stress associated with perceived racial bias, among young people with SCD, either in the community or in medical settings. Broadly defined, racial bias is negative beliefs, attitudes, or behaviors toward a group of people based on racial differences (Pachter, Szalacha, Bernstein, & Garcia Coll, 2010). These racial biases tend to lead to differential treatment and to poorer health outcomes (Williams & Mohammed, 2009). To date, no study has investigated the prevalence of racial bias, or described experiences of bias, among youth with SCD. The lack of research in this area is particularly concerning because it is suspected that there is a high prevalence of bias events, and perceived racial bias, among healthy Black American high school students (Pachter, Bernstein, Szalacha, & Garcia Coll, 2010). These racial bias experiences have been associated with negative psychological outcomes, such as symptoms of anxiety and depression, low self-esteem, and behavioral difficulties in pediatric populations (Pachter & Garcia Coll, 2009). Several conceptual models have linked perceived racial bias to increased risk of negative health outcomes (Clark, Anderson, Clark, & Williams, 1999; Jackson, Kubzansky, & Wright, 2006; Meghani & Gallagher, 2008). The accumulation of environmental stressors has been linked to an overstimulation of neuroendocrine–immune systems causing allostatic load and increasing vulnerability to disease processes (McEwen, 1998). Tomfohr and colleagues (2016), in a study of 176 men and women, discovered that African-Americans had significantly higher allostatic load than White Americans, and that this discrepancy was mediated by occurrences of racial discrimination in the community. Thus, there are physical health implications in the experience of racial bias that may exacerbate chronic illnesses. An evaluation of the role of racial bias among youth with SCD has clinical implications for pediatric psychologists, who are frequently on the frontlines in determining the psychosocial factors that impact biological processes among pediatric populations. SCD has been historically conceptualized as a “Black disease” within the medical community (Bediako & Moffitt, 2011; Wailoo, 2001). There is evidence of racial bias within the context of health-care settings for adults with SCD. Research suggests that adult patients with SCD presenting to the ED may have longer wait times when compared with non-SCD patients (Haywood, Tanabe, Naik, Beach, & Lanzkron, 2013). Strickland and colleagues (2001) demonstrated that 80% of their adult sample with SCD reported that they attempted to use the health-care system as little as possible, managing their symptoms at home, because of their perception that physicians view them as drug seeking patients. Owing to the lack of research in youth with SCD, racial bias within health care systems may be unrecognized. Direct evidence of racial inequities in the quality of treatment for children with SCD is not available in the current literature, likely because of the low prevalence of SCD in those who are not Black. The best evidence available that suggests possible racial inequities in treatment confounds race and medical condition. For instance, in the Emergency Department, children with SCD reporting high pain intensity, 88% of whom were African-American, experienced greater delays in receiving analgesic medicine than children with long bone fractures, 15% of whom were African-American (Zempsky, Corsi & McKay, 2011). Parents of children with SCD, however, do perceive that racial bias impacts the quality of health care their children receive (Burnes et al., 2008), and these perceptions may shape the perspectives of their adolescent children (Neblett, Philip, Cogburn & Sellers, 2006). Additional data suggest that racial biases may be particularly prevalent in SCD. Black parents of children with SCD were found to be more likely to perceive that race negatively impacted the quality of care their children received when compared with Black parents of children with asthma (Brousseau et al., 2009). Yet, youth with SCD have not been directly evaluated regarding their own perceptions of racial bias. There are different types of racial biases encountered by Black Americans. Explicit racial bias consists of negative beliefs of a racial group that are consciously held, whereas implicit racial bias involves a lack of awareness of negative associations with a racial group (Dovidio, Kawakami, & Gaertner, 2002). An individual with explicit bias may directly discriminate, either by verbal or physical means, against a member of that racial group, where as an individual with implicit bias may enact this bias through nondirect means, such as nonverbal communication or unintentional exclusion. Thus, the experiences of these two racial biases are different. The aversive racism theory may help explain the implicit racial bias that has been shown in many subject samples. This theory postulates that even individuals who embrace racial equality for all races harbor automatic negative impressions of Black individuals that often emerge in spontaneous contexts (Dovidio & Gaertner, 2004; Gaertner & Dovidio, 1986), particularly nonverbal communication cues. This phenomenon has been investigated and empirically supported within medical settings (Penner et al., 2010) and will be examined in the current study. A systematic review of the literature examining self-reported experiences of racial bias and health revealed that a major limitation of such research was a lack of psychometrically sound measures for the assessment of perceived racism (Paradies, 2006). As a result, Pachter and colleagues (2010) developed a perceived racial bias measure using qualitative interviews with 14 children from minority backgrounds (ages 9 and 16 years) and validating items extracted from these interviews among 277 children (38% Latino, 31% African-American, and 19% multiracial), ages 8–18 years, recruited from YMCA youth organizations and local high schools. Participants completed the Perception of Racism in Children and Youth measure (PRaCY), which describes potential settings or contexts in which children may have encountered racial bias and records the frequency of these occurrences. The authors found that 88.4% of the sample reported at least one incident of racism and about one third of the children reported that the event happened in school. As illustrated above, perceived racism is common among healthy Black American youth (Pachter, Bernstein, et al. 2010.), and perceived racial bias within the health-care system has negative implications for the management of SCD for adults (Strickland et al., 2001). Racial bias not only has implications for the quality of life of youth with SCD but also for physical health outcomes. Unfortunately, little is known about the racial bias experiences of youth with SCD. To fill that gap in the literature, we administered the PRaCY with additional questions focused on perceived racial bias within the medical setting to youth with SCD, and then interviewed them to more fully characterize these events and their reactions. Given that healthy Black American youth endorse a high frequency of community racial bias (Pachter, Bernstein, et al., 2010), we expected that our sample would also report racial bias in several contexts, including within hospital environments. Methods Participants and Recruitment/Enrollment Procedures Participants enrolled in the current study were 20 Black American youth diagnosed with SCD. Youth with SCD were approached to participate in a mixed quantitative–qualitative design study during a clinical appointment or while hospitalized at an urban children’s hospital in the Northeast United States between May 2012 and June 2014. Participants were included if they had documented SCD, were between the ages of 13 and 21 years, identified as Black American, and were English-speaking. Patients were told that the purpose of the study was to understand their experience of SCD, and that questions about race, mood, and daily activities would be included. Patients were informed that the interview was a part of the study procedures before enrolling in the study. Of the 34 patients approached by one of four reasearch personnel, four patients were not interested and two did not have sufficient time to complete the study materials. There were no significant differences in patient characteristics between the 6 patients who did not participate and the 28 who enrolled in the quantitative study on age, gender, and SCD genotype. Of the 28 enrolled in the larger study, one participant was excluded for not endorsing any perceived racial bias events and therefore did not provide any interview data. In total, 7 of the remaining 27 participants did not complete the interview for a variety of reasons, including feeling uncomfortable disclosing perceived racial bias information (n = 5) and the additional time needed to complete the interview following quantitative data collection (n = 2). While the interview was an expectation of the study, we did not exclude participants for withdrawing from this aspect of the study. As a result, 20 participants (74.07%) of our convenience sample were included. Independent sample t-tests did not detect any significant differences in demographic or racial bias events between participants who completed the qualitative interview and those who did not. Sample characteristics are presented in Table I. Table I. Demographic Information Descriptive variables % (N) Sex  Female 70.0 (14)  Male 30.0 (6)  Race 75.0 (15)  Black or African-American 25.0 (5) More than one race  SCD typea  HbSS 70.0 (14)  HbSC 25.0 (5)  HbBeta0thalassemia 5.0 (1) Current treatments  Hydroxyurea 50.0 (10)  Chronic transfusions 20.0 (4) Enrolled  Routine outpatient appointment 45.0 (9)  Inpatient hospitalization 55.0 (11) Descriptive variables % (N) Sex  Female 70.0 (14)  Male 30.0 (6)  Race 75.0 (15)  Black or African-American 25.0 (5) More than one race  SCD typea  HbSS 70.0 (14)  HbSC 25.0 (5)  HbBeta0thalassemia 5.0 (1) Current treatments  Hydroxyurea 50.0 (10)  Chronic transfusions 20.0 (4) Enrolled  Routine outpatient appointment 45.0 (9)  Inpatient hospitalization 55.0 (11) a HbSS = hemoglobin SS disease; HbSC= hemoglobin SC disease; HbBeta0thalassemia = hemoglobin SB 0 (Beta-zero) thalassemia. Table I. Demographic Information Descriptive variables % (N) Sex  Female 70.0 (14)  Male 30.0 (6)  Race 75.0 (15)  Black or African-American 25.0 (5) More than one race  SCD typea  HbSS 70.0 (14)  HbSC 25.0 (5)  HbBeta0thalassemia 5.0 (1) Current treatments  Hydroxyurea 50.0 (10)  Chronic transfusions 20.0 (4) Enrolled  Routine outpatient appointment 45.0 (9)  Inpatient hospitalization 55.0 (11) Descriptive variables % (N) Sex  Female 70.0 (14)  Male 30.0 (6)  Race 75.0 (15)  Black or African-American 25.0 (5) More than one race  SCD typea  HbSS 70.0 (14)  HbSC 25.0 (5)  HbBeta0thalassemia 5.0 (1) Current treatments  Hydroxyurea 50.0 (10)  Chronic transfusions 20.0 (4) Enrolled  Routine outpatient appointment 45.0 (9)  Inpatient hospitalization 55.0 (11) a HbSS = hemoglobin SS disease; HbSC= hemoglobin SC disease; HbBeta0thalassemia = hemoglobin SB 0 (Beta-zero) thalassemia. The study was approved by the university Human Subjects Committee and the hospital institutional review board. Informed consent was obtained from a legal guardian or from the participant if he or she was >18 years old. Child assent was also obtained for participants of age <18 years. Consent was also obtained for a protected health information release form to gain access to the participant’s medical record to conduct the chart review for an SCD disease measure used in the quantitative study. Constructs, Measures, and Data Collection Procedures Demographic Questionnaire Information about the age, gender, race, ethnicity, SCD genotype, and medical treatment was collected using a general information form completed by the participant. This information was used for sample descriptive purposes. Perceived Racial Bias Perceived racial bias was assessed via the PRaCY (Pachter, Bernstein, et al., 2010) and a follow-up interview. The PRaCY consists of 10 items asking adolescents about situations of racial bias they may have experienced within their community. If the participant endorses an item, he or she marks the frequency of the event using a five-point Likert scale (ranging from once to weekly). The total score of the PRaCY was calculated by using the total frequency score of the PRaCY items endorsed by participants. The PRaCY demonstrated stable interitem correlation, construct validity, and reliability among a sample of 227 healthy African-American youth (Pachter, Szalacha, et al., 2010). An additional four items were included in this measure assessing perceived racial bias within the medical community (with permission granted by Pachter). These items were developed using an expert panel of pediatric researchers, including the primary author of the PRaCY study, a pain physician, and a pediatric psychologist, all of whom had experience in instrument development, pain, and SCD. When the four additional items were included in the PRaCY, the measure demonstrated acceptable full-scale internal reliability (α = 0.73) as demonstrated in the larger study with 28 participants (blinded for review). Responses to the PRaCY were the basis for the racial bias interview. A study script was used by the research personnel to conduct the interviews in a standardized way. All research personnel were specifically trained to administer the PRaCY and conduct the follow-up interview. After the participant completed the perceived racial bias measure, the research assistant interviewed the participant separately from his or her parent to reduce any potential bias. The interviews were conducted either in the outpatient clinic or the patient’s hospital room, depending on the setting in which he or she was originally recruited. During the interview, the research assistant reread any item the participant had marked “Yes” and provided the following prompts: “tell me more about that experience” or “what was that like for you?” The interviews were audio recorded and transcribed verbatim for analysis. The amount of time needed to complete the interview ranged from <1 to 15 minutes and was dependent on the number of items endorsed by the participant, which ranged from 1 to 12 items (M = 5.16, SD = 3.18). Data Analysis Frequency analysis was used to determine the percentage of the sample who endorsed each of the PRaCY items. Content analysis of the PRaCY interviews was conducted manually (meaning without the use of computer software) by two independent raters (graduate-level psychology students) using the conventional content analysis approach described in Hsieh & Shannon (2005). There were several characteristics about the racial bias events for which we sought to gather information. We were specifically interested in how the racial bias events occurred, who caused the event, and how the youth reacted. To characterize the racial bias events, we developed two sets of codes a priori, based on a review of the literature, specifically: racial bias perpetrator and type of racial bias (explicit and implicit biases). As the PRaCY measure asked questions about specific categories of persons as the source of the racial bias (i.e., teachers, police officers, and peers), we developed the racial bias perpetrator code before analyzing the data. To describe the reactions of youth with SCD to these events, we used inductive methods. Two overarching categories of reactions emerged from the data: Behavioral Reactions and Emotional Responses, each with additional subcategories. A percentage of rater agreement was calculated for each category. A code book was developed that included four codes or major total categories: Racial Bias Perpetrator, Type of Racial Bias (implict or explicit), Behavioral Reaction, and Emotional Response. The raters discussed and resolved discordant coding for racial bias events. Frequencies were used to describe the percentage of the sample who endorsed each qualitative category. Results All participants endorsed community racial bias and four participants described medical racial bias experiences. Table II presents the percentage of participants who endorsed each of the PRaCY items for both community and medical settings. Among the 20 participants who completed the interviews, 112 bias events were described. Of the total number of racial bias events, nine responses were removed from the analysis because of the participants stating that the event was not attributed to racial bias (n = 4), the event was related more to sickle cell stigma than color of their skin (n = 3), or the event happened to a family member instead of the participant (n = 1). As a result, there were 104 racial bias events included in the content analysis of the interviews. Table II. Perceived Racial Bias by Youth With SCD: Percent of Sample Endorsement and Mean of Frequency Perceived racial bias item % M (SD) Community environment  Been watched closely or followed  around by security guards or store  clerks at a store or mall 50.0 1.15 (1.27)  Been treated unfairly by a police officer 20.0 0.30 (0.66)  Been accused of something you did not  do at school 50.0 1.10 (1.33)  Been treated badly or unfairly by a  teacher? 50.0 1.55 (1.90)  Had the feeling that someone was afraid  of you? 35.0 0.60 (0.88)  Been called an insulting name? 60.0 1.70 (1.66)  Had someone make a bad or insulting  remark about your race, ethnicity, or  language? 70.0 1.40 (1.35)  Had someone be rude to you? 50.0 1.25 (1.62)  Had people assume you are not smart or  intelligent? 60.0 1.25 (1.37)  Seen your parents or other family  members treated unfairly or badly  because of the color of their skin,  language, accent, or because they  came from a different country or  culture? 45.0 1.15 (1.53) Medical environment  Been treated badly or unfairly in the  emergency room? 5.0 0.10 (0.45)  Been badly or unfairly during a clinic  appointment? 10.0 0.10 (0.31)  Been treated badly or unfairly while  hospitalized? 15.0 0.20 (0.52)  Been treated differently than other  children in the hospital? 5.0 0.10 (0.45) Perceived racial bias item % M (SD) Community environment  Been watched closely or followed  around by security guards or store  clerks at a store or mall 50.0 1.15 (1.27)  Been treated unfairly by a police officer 20.0 0.30 (0.66)  Been accused of something you did not  do at school 50.0 1.10 (1.33)  Been treated badly or unfairly by a  teacher? 50.0 1.55 (1.90)  Had the feeling that someone was afraid  of you? 35.0 0.60 (0.88)  Been called an insulting name? 60.0 1.70 (1.66)  Had someone make a bad or insulting  remark about your race, ethnicity, or  language? 70.0 1.40 (1.35)  Had someone be rude to you? 50.0 1.25 (1.62)  Had people assume you are not smart or  intelligent? 60.0 1.25 (1.37)  Seen your parents or other family  members treated unfairly or badly  because of the color of their skin,  language, accent, or because they  came from a different country or  culture? 45.0 1.15 (1.53) Medical environment  Been treated badly or unfairly in the  emergency room? 5.0 0.10 (0.45)  Been badly or unfairly during a clinic  appointment? 10.0 0.10 (0.31)  Been treated badly or unfairly while  hospitalized? 15.0 0.20 (0.52)  Been treated differently than other  children in the hospital? 5.0 0.10 (0.45) Note. SCD = Sickle cell disease. Table II. Perceived Racial Bias by Youth With SCD: Percent of Sample Endorsement and Mean of Frequency Perceived racial bias item % M (SD) Community environment  Been watched closely or followed  around by security guards or store  clerks at a store or mall 50.0 1.15 (1.27)  Been treated unfairly by a police officer 20.0 0.30 (0.66)  Been accused of something you did not  do at school 50.0 1.10 (1.33)  Been treated badly or unfairly by a  teacher? 50.0 1.55 (1.90)  Had the feeling that someone was afraid  of you? 35.0 0.60 (0.88)  Been called an insulting name? 60.0 1.70 (1.66)  Had someone make a bad or insulting  remark about your race, ethnicity, or  language? 70.0 1.40 (1.35)  Had someone be rude to you? 50.0 1.25 (1.62)  Had people assume you are not smart or  intelligent? 60.0 1.25 (1.37)  Seen your parents or other family  members treated unfairly or badly  because of the color of their skin,  language, accent, or because they  came from a different country or  culture? 45.0 1.15 (1.53) Medical environment  Been treated badly or unfairly in the  emergency room? 5.0 0.10 (0.45)  Been badly or unfairly during a clinic  appointment? 10.0 0.10 (0.31)  Been treated badly or unfairly while  hospitalized? 15.0 0.20 (0.52)  Been treated differently than other  children in the hospital? 5.0 0.10 (0.45) Perceived racial bias item % M (SD) Community environment  Been watched closely or followed  around by security guards or store  clerks at a store or mall 50.0 1.15 (1.27)  Been treated unfairly by a police officer 20.0 0.30 (0.66)  Been accused of something you did not  do at school 50.0 1.10 (1.33)  Been treated badly or unfairly by a  teacher? 50.0 1.55 (1.90)  Had the feeling that someone was afraid  of you? 35.0 0.60 (0.88)  Been called an insulting name? 60.0 1.70 (1.66)  Had someone make a bad or insulting  remark about your race, ethnicity, or  language? 70.0 1.40 (1.35)  Had someone be rude to you? 50.0 1.25 (1.62)  Had people assume you are not smart or  intelligent? 60.0 1.25 (1.37)  Seen your parents or other family  members treated unfairly or badly  because of the color of their skin,  language, accent, or because they  came from a different country or  culture? 45.0 1.15 (1.53) Medical environment  Been treated badly or unfairly in the  emergency room? 5.0 0.10 (0.45)  Been badly or unfairly during a clinic  appointment? 10.0 0.10 (0.31)  Been treated badly or unfairly while  hospitalized? 15.0 0.20 (0.52)  Been treated differently than other  children in the hospital? 5.0 0.10 (0.45) Note. SCD = Sickle cell disease. Through content analysis, we characterized racial bias events in regard to Perpetrator (Peers, Authority Figures, General Population) and Type (Explicit, Implicit) and youth reactions in regard to Behaviors (Approach, Avoidant) and Emotions (Dysphoria, Anger, Unconcerned, Inferior, Anxious). These categories and the subcategories developed are presented in Table III. The level of rater agreement for each category was as follows: Racial Bias Perpetrator (94.6%), Type of Racial Bias (88.4%), Behavioral Reaction (90.2%), and Emotional Response (97.8%). Table III. Coded Categories and Subcategories: Description and the Percent of Sample Endorsing Each Event Category Subcategory Definition % Perpetrator Peer Racist event caused by person or persons similar in age 23.7 Authority Figures Racist event caused by person or persons having power to command, determine, judge, or enforce laws 50.5 General Population Person or persons caused racist event described more generally, without a specified type of perpetrator 27.8 Type of racism Explicit Racist behavior consciously acted on by perpetrator 50.6 Implicit Racist behavior indicating automatic negative race associations 49.5 Behavioral reaction Approach Reaction to event was described as confronting the situation 57.5 Avoidant Reaction to racist event was described as avoiding the situation 42.6 Emotional response Dysphoria Described experience using sad, hurt, upset, or horrible 27.9 Anger Described experience using terms of angry, mad, upset, or annoyed 20.9 Unconcerned Described experience using terms of not bothered, happy, or funny 18.6 Inferior Described experience using terms of disrespected, offended, insulted, bothered, or stereotyped 16.3 Anxious Described experience using terms of shocked, panic, or scared 9.3 Other Described experience using terms that did not fall into a clear category, such as “weird” and “bad” 7.0 Category Subcategory Definition % Perpetrator Peer Racist event caused by person or persons similar in age 23.7 Authority Figures Racist event caused by person or persons having power to command, determine, judge, or enforce laws 50.5 General Population Person or persons caused racist event described more generally, without a specified type of perpetrator 27.8 Type of racism Explicit Racist behavior consciously acted on by perpetrator 50.6 Implicit Racist behavior indicating automatic negative race associations 49.5 Behavioral reaction Approach Reaction to event was described as confronting the situation 57.5 Avoidant Reaction to racist event was described as avoiding the situation 42.6 Emotional response Dysphoria Described experience using sad, hurt, upset, or horrible 27.9 Anger Described experience using terms of angry, mad, upset, or annoyed 20.9 Unconcerned Described experience using terms of not bothered, happy, or funny 18.6 Inferior Described experience using terms of disrespected, offended, insulted, bothered, or stereotyped 16.3 Anxious Described experience using terms of shocked, panic, or scared 9.3 Other Described experience using terms that did not fall into a clear category, such as “weird” and “bad” 7.0 Table III. Coded Categories and Subcategories: Description and the Percent of Sample Endorsing Each Event Category Subcategory Definition % Perpetrator Peer Racist event caused by person or persons similar in age 23.7 Authority Figures Racist event caused by person or persons having power to command, determine, judge, or enforce laws 50.5 General Population Person or persons caused racist event described more generally, without a specified type of perpetrator 27.8 Type of racism Explicit Racist behavior consciously acted on by perpetrator 50.6 Implicit Racist behavior indicating automatic negative race associations 49.5 Behavioral reaction Approach Reaction to event was described as confronting the situation 57.5 Avoidant Reaction to racist event was described as avoiding the situation 42.6 Emotional response Dysphoria Described experience using sad, hurt, upset, or horrible 27.9 Anger Described experience using terms of angry, mad, upset, or annoyed 20.9 Unconcerned Described experience using terms of not bothered, happy, or funny 18.6 Inferior Described experience using terms of disrespected, offended, insulted, bothered, or stereotyped 16.3 Anxious Described experience using terms of shocked, panic, or scared 9.3 Other Described experience using terms that did not fall into a clear category, such as “weird” and “bad” 7.0 Category Subcategory Definition % Perpetrator Peer Racist event caused by person or persons similar in age 23.7 Authority Figures Racist event caused by person or persons having power to command, determine, judge, or enforce laws 50.5 General Population Person or persons caused racist event described more generally, without a specified type of perpetrator 27.8 Type of racism Explicit Racist behavior consciously acted on by perpetrator 50.6 Implicit Racist behavior indicating automatic negative race associations 49.5 Behavioral reaction Approach Reaction to event was described as confronting the situation 57.5 Avoidant Reaction to racist event was described as avoiding the situation 42.6 Emotional response Dysphoria Described experience using sad, hurt, upset, or horrible 27.9 Anger Described experience using terms of angry, mad, upset, or annoyed 20.9 Unconcerned Described experience using terms of not bothered, happy, or funny 18.6 Inferior Described experience using terms of disrespected, offended, insulted, bothered, or stereotyped 16.3 Anxious Described experience using terms of shocked, panic, or scared 9.3 Other Described experience using terms that did not fall into a clear category, such as “weird” and “bad” 7.0 Racial Bias Perpetrator Three distinct groups of people were identified as sources of racial bias: peers, authority figures, and others in the general population. The raters also coded two racial bias events that were examples of internal racial bias, which means that the racist event was perpetrated by another within their own racial group. Peers A response was coded as peer perpetrator when the event was caused by a person or persons who had equal standing with another, such as age. An example of a response that indicated peer perpetration was as follows: “I feel when I walk down the hallway that people think black people are a gang…just the color of your skin. So when I walk down the hallway some boy will ask me…‘Oh, so you’re dating a gangbanger?’ Another participant stated, “I was dealing with this girl… [who said] I don’t want to say the words but like you know, the n-word and stupid, black b****.” Both of these instances occurred in a school setting with a peer who incited the racial bias situation. Authority Figures Authority figures were defined as persons who had the power to command, determine, judge, or enforce rules or laws. Three items on the PRaCY asked about racial discrimination situations with authority figures, specifically store clerks, police offers, and teachers. One participant described an experience with police officers: So I was walking back home, the cops stopped us and first of all they got out of the car and they unlatched their nightsticks. I had a panic attack but while I was like trying to regain my breath the guy said “Why don’t you read an f’ing book?” and he said “Where’s your mom?” and he was like “She’s probably on the sofa someplace laid up.” There were also racial bias events describing racial bias of store clerks, assessed by the PRaCY item asking about “being watched closely by a store clerk or security guard.” One participant reported: I had the money for it and everything like that, but one of the sales associates was following me…eventually I put the shirt down, but the guy still had me go up in front of the cash register and check my bag. General Population There were racial bias events in which participants described feeling discriminated against more generally, which were coded as general population within the racial bias perpetrator category. For example: I think automatically, I don’t know what it is but it’s like…just ignorant comments, like they assume that you know, you’re just going to live off of welfare and get pregnant at a young age and stupid crap like that. It’s like “You’re going to live off of the government.” It’s so ignorant to think like that. Type of Racial Bias Type of racial bias was identified with two subcategories of explicit and implicit racial bias. The racial bias measure included two questions that specifically pulled for explicit racial bias events, which were: “Been called an insulting name” (60.0%) and “Had someone make a bad or insulting remark about your race, ethnicity, or language?” (70.0%). The measure also included two questions that specifically pulled for implicit racial bias events which were: “Had the feeling that someone was afraid of you” (35.0%) and “Been treated differently than other children in the hospital” (5.0%). Explicit Racial Bias Explicit racial bias events were defined by racist behaviors that were consciously acted on by the perpetrator. An example of explicit racial bias in the form of an insult experienced by one of the participants was as follows: “Oh, I’ve been called ‘You’re too black to be on Earth’, ‘Nobody can see you’, ‘[clicks mouth] go back to Africa…’.” These insults by others were coded as explicit racial bias, as they were examples of racial discrimination that appeared to be more consciously conducted on by the perpetrator. For example, one participant reported: “It was a teacher…She said, ‘See, this is why black people got discrimination because you all just too dumb to know anything’.” Implicit Racial Bias There were racial bias events that suggested implicit racial bias, as defined by automatic, less conscious negative race associations that were ambiguous and indirect. The following is an example of an implicit racial bias response described by one of the participants: I had last-minute brought in my mom’s signature for a field trip and they thought I forged my mom’s signature and I didn’t. And my mom was at work so she couldn’t answer her phone to defend me and they had me sit there the whole day helping second graders all day when I didn’t do anything…they still made me sat there the whole day because they didn’t believe me. This response is an example if an implicit bias response because of the indirect nature of the interaction between the participant and the perpetrator of the racial bias. Behavioral Reaction Behavioral reactions to the racial bias events fell into two categories: Approach and Avoidant responses. Approach Response Participant racial bias events that included a description of their behavioral reaction to the event in which they confronted the situation were coded as an approach response. For example, one participant described his or her reaction to a teacher who stated that Black people were discriminated against because of their lack of intelligence in the following dialogue: I got in trouble because I cussed her out. I was like “Excuse me, first of all you can’t say that that’s why we got discriminated. We get discriminated because of the color of our skin, not how dumb we are. The participant directly confronted the teacher verbally about her comment, thus indicating an approach response. Avoidant Response A racial bias reaction was coded as an avoidant response if the participant described him or herself as avoiding the threat or perpetrator. For instance, one participant described his or her experience at the mall as follows: I don’t really like going to the mall that often…but when you do, people watch you and you feel uncomfortable…sometimes that could be because you’re black; sometimes it could be because you’re wearing the wrong thing…that’s why I don’t really go to the mall. Owing to perceptions of racial bias at the mall, this participant attempted to avoid even going to the mall. This response is also an example of an implicit bias experience. Emotional Response Five emotional subcategories were developed as presented in Table III. We also developed an “other” category for racial bias events that did not fall into clear categories, such as “bully,” “weird,” and “bad.” Of the terms that did fall into clear categories, the three most often reported emotional response subcategories were dysphoric mood (e.g., sad, hurt, and horrible), anger (e.g., angry, mad, upset, and annoyed), and unconcerned (e.g., bothered, happy, and funny). An example of dysphoric mood is, one participant stated, “Just like being sad, like it happened, like just not getting why people do people do that. It’s like, I don’t know, just to think that a lot of people still make fun of people’s races because of their skin color or whatever, or like where they come from.” This participant indicated that she was sad when she experiences racial bias. Medical Racial Bias From the interview transcripts, those participants who did report perceived racial bias within medical settings (n = 4) described these events as pertaining to one particular medical staff member who was repeatedly rude (n = 2), feeling that they needed to wait longer than others during clinic appointments (n = 1), or that pain was discounted at a different hospital setting (n = 1). One racial bias event described detailed an experience at a hospital outside of our institution: “Well, I was in [outside hospital location]…I had gotten sick and I had been taken to the ER up in the [outside hospital location]…it seemed like we were in The Twilight Zone. I’m so used to coming to [our institution] and getting like good care or whatever…I actually had to like wait two hours while I was in pain, like really bad pain to get treated.” Relatively few racial bias events in medical settings were endorsed on the PRaCY and later described in the interview. Discussion To our knowledge, there has been no research dedicated to understanding the sources of and reactions to racial bias events among youth with SCD. The purpose of the current study was to characterize racial bias events and reactions to these events of adolescents and young adults with SCD using mixed quantitative and qualitative methods. As expected, our sample endorsed perceived racial bias events within community and medical settings, but the majority of the experiences endorsed were within the community environment. We were also able to capture behavioral and emotional reactions to these events within our sample. These findings support the need to evaluate this construct clinically among youth with SCD. Currently, racial bias is not routinely evaluated despite its frequent endorsement and psychosocial implications. We suggest that pediatric psychologists routinely inquire about racial bias experiences for youth with SCD and the impact that these experiences have on their medical care and well-being. Pediatric psychologists can also address behavioral or emotional racial bias reactions that may negative impact the quality of life of these patients or interfere with medical care. Perceived racial bias contributes to barriers to health-care utilization (Stanton et al., 2010) and poorer disease outcomes among adults with SCD (Haywood et al., 2014). Thus, it is important to begin evaluating and targeting these racial bias events in adolescence. There may also be a potential impact of racial bias experiences on patients’ transition of care to adulthood. Additionally, our findings support that racial bias events may influence the emotional well-being of youth with SCD, for which pediatric psychologists can target with psychological intervention. Participants reported that the racial bias events that they perceived were caused by both authority figures and their peers. The number of events of racial bias perpetrated by authority figures is concerning and has considerable school and community implications. This is an important consideration, as the literature suggests that racial bias prevention programs within schools target bullying by students (Eslea & Mukhtar, 2000). To our knowledge, there are no programs that address race-related bullying by teaching or administrative staff. The need to address racial bias in authority figures is significant, as these experiences may lead to feelings of lack of safety because of the power differential within the dyad. Pediatric psychologists can use school collaboration to target reports of racial bias within school settings. Our sample reported few instances of medical racial bias. It is possible that racial health disparity is experienced less within the children’s hospital of our study, as indicated in the description provided by one of our participants in the ‘Results’ section. Another potential reason is that participants in this study may have not been forthcoming with bias reports about the medical setting, as they were recruited during a visit at a medical appointment. It is also possible that parents may have experienced more racial bias within medical settings and/or have more awareness of institutional racism. The literature on the impact of the race of the patient on medical treatment within pediatric settings is limited, and more research is needed to fully capture racial bias experiences within the health-care setting, as it may affect an individual’s comfort in seeking health care (Bediako & King-Meadows, 2016; Jenerette & Brewer, 2010) and comfort within their community. While the current study demonstrated differences between prevalence of perceived racial bias reported within community and medical environments, another distinction emerged regarding the type of racial bias. The qualitative findings of the current study identified explicit and implicit forms of racial bias. It is important to identify and understand the experience of racial bias within community and medical environments in youth with SCD to improve their health care and quality of life. Our participants reported experiencing a range of negative emotions, including sadness and anger, in response to the racial bias episodes, supporting the belief that racial bias can be conceptualized as a stressor among youth with SCD. Brondolo and colleagues (2009) conducted a review of coping with racism and concluded that reactions to racism can be dependent on several factors, including the overt nature of the racism, availability of coping resources, and racial identity of the individual. We identified two different behavioral reactions to the racial bias events in our sample, specifically approach and avoidant reactions. Approach and avoidance coping models have been reviewed and studied within the stress and coping literature. This model postulates that an individual either use approach strategies, such as seeking support from others, or avoidance strategies, such as denying or minimizing the experience, when faced with a stress-provoking situation (Compas, Connor-Smith, Saltzman, Thomsen, & Wadsworth, 2001; Gonzales, Tein, Sandler, & Friedman, 2001). Racial identity also has shown to be influential in one’s experience of racial discrimination (Sellers, Copeland-Linder, Martin & Lewis, 2006). Other factors that seem to contribute to depressive symptoms include strength of cultural pride and alertness to discrimination (Davis & Stevenson, 2006). Thus, there are individual- and community-level factors that may influence an individual’s reaction and ability to cope with racial bias events. The literature on coping with racial discrimination is limited, and more research is needed in both adolescent and adult populations. Our findings need to be considered in light of a few limitations. While many participants appeared to be open and willing to discuss the impact of race and culture in their experience with SCD, research personnel observed a discomfort in seven participants during the interview portion of the study. All research personnel who recruited and conducted the interviews for the study were Caucasian and associated with the children’s hospital, thus potentially increasing the level of discomfort for participants to discuss perceived racial bias events, particularly in the medical setting. Previous research suggests that African-American participants are more comfortable and forthcoming in interviews and/or questionnaires concerning racially based experiences when the race of the interviewer matched their own (Davis et al., 2013). Future research should consider this concern by having interviewers who are of the same race as the research participants and recruitment of youth with SCD in a community setting. Another limitation of the current study is that the racial bias experiences were only captured using the PRaCY measure. It is possible that youth with SCD experience other racial bias events that are not included in the PRaCY measure that was developed within a healthy African-American sample. We also approached a convenience sample of youth with SCD that is reflective of a small group of youth. It is possible that there may be a wider range of racial bias experiences in the broader pediatric SCD population. Future research should also investigate any differences in the experience of racial bias across age and gender groups, which is a topic that the current research was not designed to examine. While there has been an increased emphasis on the psychosocial evaluation of youth with chronic health conditions, the literature on stress related to perceived racial bias events among youth with SCD is severely underdeveloped. Further work and research is needed to understand racial biases experienced by youth with SCD and their families in both community and medical settings and to determine how these events and reactions to them influence the health care sought and received by these youth throughout their lifespan (Bediako et al., 2016). Acknowledgments The authors would like to acknowledge the contributions of the Staff of the CT Children’s Medical Center Department of Hematology/Oncology for their support of research-related activities of this study and most of all to the youth with SCD and their families who were courageous in sharing their experiences with racial bias to allow us to increase awareness of these experiences to the research and clinical community. Funding This research is supported by the Goldfarb Pain and Palliative Medicine Fund. Conflicts of interest: None declared. References Bediako S. M. , King-Meadows T. ( 2016 ). Public support for sickle-cell disease funding: does race matter? Race and Social Problems , 8 , 186 – 195 . doi: 10.1007/s12552-016-9173-x Google Scholar CrossRef Search ADS Bediako S. M. , Lanzkron S. , Diener-West M. , Onojobi G. , Beach M. C. , Haywood C. ( 2016 ). 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Journal of Pediatric PsychologyOxford University Press

Published: Mar 17, 2018

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