The Diagnosis and Experience of Schizophrenia in Black Americans
Schizophrenia, which involves a range of emotional, behavioral, and cognitive dysregulation, is considered to be one of the most chronic, severe, and impairing mental illnesses (American Psychiatric Institute; NIMH, 2017). To support a diagnosis of schizophrenia, the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, requires the presence of hallucinations, delusions, and/or disorganized speech, with a total of at least two of the following symptoms: hallucinations, delusions, disorganized speech, grossly disorganized or catatonic behavior, and/or negative symptoms. Further, a diagnosis of schizophrenia requires impaired functioning in one or more major domains of life along with continuous signs of disturbance for at least six months. The lifetime prevalence of schizophrenia appears to be from 0.3% to 0.7% of the population; however, Black Americans are overrepresented in this population, as they are more likely than other races to receive a diagnosis of schizophrenia, even after adjusting for socioeconomic status (Bresnahan et al., 2007). Compared to White Americans, Black Americans tend to receive fewer overall diagnoses of most major mental illnesses, but receive diagnoses of schizophrenia approximately two times more often (Bresnahan et al., 2007). Research has indicated that Black Americans experience unique stressors that both increase their rates of schizophrenia and psychotic illness and inform the content of their hallucinations (Rosen et al., 2017). Black Americans face distinctive risk factors for the diagnosis of schizophrenia and poor prognosis, including higher rates of trauma, adversity, and discrimination. Further, this population’s experience of schizophrenia is affected by their culture, familial values, and religiosity.
While the higher rates of schizophrenia diagnoses in Black Americans is supported by nearly all existing research on the subject, it is still unclear to what degree clinicians exhibit bias in assessing this population. Neighbors, Trierweiler, & Ford found that clinicians tend to use different symptom criteria when making diagnoses in Black Americans versus White Americans, even when utilizing the DSM Symptom Checklist, a standardized, semi-structured diagnostic instrument (2003). For example, if a White patient exhibited inappropriate affect or peculiar behavior, clinicians in the study tended to attribute these symptoms to a bipolar diagnosis. On the other hand, if a Black patient exhibited these same symptoms, clinicians tended to attribute them to a diagnosis of schizophrenia. Further, it has been found that clinicians performing intake or admission diagnoses of Black Americans classify their symptom expressions as being paranoid or evasive in nature, leading to higher rates of paranoid schizophrenia diagnoses in this population. This psychopathological classification of Black Americans’ normative wariness of healthcare institutions ignores the cultural lens through which all clinicians should interact with this population, given the healthcare institution’s history of abuse, mistreatment, and exclusion of Black Americans (Whaley, 2001). This sort of “White-centric” assessment clearly does not generalize to Black Americans, and these findings serve as evidence that all diagnosing clinicians should be aware of the cultural concerns relevant to working with this population.
Trauma, Adversity, and Discrimination as Risk Factors
Evidence suggests that racial minorities are more susceptible to increased exposure to trauma. In particular, Black Americans experience the highest overall lifetime exposure to traumatic life events, specifically violent assaults and witnessing or experiencing gun violence (Hatch & Dohrenwend, 2007; Turner & Lloyd, 2004). Black Americans and other racial minorities also tend to experience more adverse childhood experiences that qualify as trauma (Morgan & Fearon, 2007). Experiencing trauma in either childhood or adulthood has been shown to increase the likelihood of verbal hallucinations five-fold (Read, Agar, Argyle, & Aderhold, 2003). Trauma, especially within the Black American population, has been found to correlate with more severe experiences of psychosis and higher rates of schizophrenia diagnoses (Ramsay, Flanagan, Gantt, Broussard, & Compton, 2011). In particular, the experiences of childhood trauma that more frequently occur in the Black American and ethnic minority population have a unique relationship with the experience of psychotic symptoms. In a study of adults enrolled in- and out-patient psychiatric units, ethnic minority adults diagnosed with schizophrenia reported significantly more lifetime trauma, specifically physical abuse and sexual abuse by peers and relatives (Berg et al., 2015). Berg’s research with this clinical population found that the experience of childhood trauma mediated the association between ethnic minority status and more severe current hallucinations and delusions (2015). Further, in a sample of socially-disadvantaged Black men who were hospitalized for first-episode psychosis, the reported rates of childhood and adolescent maltreatment, abuse, and trauma were remarkably high. The most commonly reported experiences of childhood trauma in this sample were emotional abuse, physical abuse, and sexual abuse (Ramsey et al., 2011). These findings suggest that Black Americans’ higher rates of lifetime trauma, particularly in childhood, may operate as a stressor that contributes to both the experience of psychosis and diagnosis of schizophrenia.
Beyond the higher rates of trauma from child abuse, Black Americans tend to face other unique life stressors that may contribute to higher rates of schizophrenia diagnosis. Racism is an undeniable reality for Black Americans that operates on both personal and institutional levels, contributing to Black Americans’ experiences of personal discrimination, racist abuse, and institutional injustice. Bresnahan et al. suggested that the association between being Black and having a heightened risk for a diagnosis of schizophrenia involves the high rates of social and environmental adversity faced by many in this population (2007). While the researcher found that Black Americans were three times more likely to be diagnosed with schizophrenia, controlling for family socio-economic indicators led to a higher rate of just two-fold that of White Americans. While this is still a significantly higher rate ratio, Bresnahan’s finding offers evidence that the effect of race on socio-economic status plays an important role in the heightened risk of schizophrenia diagnosis.
Moreover, institutional oppression has long affected the economic security of ethnic minorities, and been associated with higher levels of environmental stressors and adversity. These factors often translate into unstable or unsafe living conditions, often in urban settings. Ellet, Freeman, & Garety found that long-time exposure to an urban environment has been shown to increase anxiety, negative beliefs about others, and “jumping to conclusions” in individuals with psychosis, as well as increase their likelihood of experiencing persecutory delusions (2008). When considering the intersection of environmental stressors and childhood trauma, Morgan & Fearon found that those who the experience of childhood trauma contributed to more auditory hallucinations in ethnic minority groups exposed to more of these environmental stressors, such as social adversity, social disadvantage, and urbanity (2007).
Institutional racism and social inequality affect Black Americans and their symptomatology at both a macro and micro level. Wickham, Taylor, Shevlin, & Bentall found that interactions amongst discrimination, deprivation, stress, mistrust, social inequality, and lack of social support may predict the onset and severity of both affective and non-affective psychosis (2014). In particular, the personal experience of discrimination and injustice negatively affect Black Americans’ mental health and tend to increase the risk for and severity of psychotic symptoms. The personal experience of discrimination contributes to a sense of social defeat, which has been found to increase the incidence of schizophrenia among ethnic minorities (Fearon et al., 2006). Anglin, Lighty, Greenspoon, & Ellman assessed urban, American, ethnic minority young adults and found that the experience of racial discrimination was associated with increased odds of endorsing cognitive disorganization, unusual thinking, perceptual abnormalities, and paranoia, all of which qualify as distressing subthreshold positive psychotic symptoms (2014). The experience of racist or discriminatory verbal abuse increases the risk of schizophrenia and other psychotic disorders by two- to three-fold, with racist or discriminatory physical attacks increasing the risk by three to five-fold when compared to groups who do not experience racism or discrimination (Karlsen & Nazroo, 2002). A notable domain of racist physical attacks, specifically against Black Americans, is the historical and ongoing epidemic of police brutality, which is often deadly. Oh, Cogburn, Lukens, Anglin, & DeVylder examined how the individual effects of nine major discriminatory events related to psychotic experiences among Black Americans. Experiencing a greater range of major discriminatory events was found to be associated with higher lifetime incidence of visual hallucinations. Notably, of the nine discriminatory events examined, being victim of police abuse was associated with increased lifetime risk for psychotic symptoms by almost 70% for Black Americans, even after controlling for demographic variables, socioeconomic status, and comorbid psychological problems (2016). Further, given a sample of Black Americans with schizophrenia and other psychotic disorders, virtually all reported some form of trauma and multiple forms of adversity, such as institutional racism and structural discrimination, which inherently contribute Black Americans’ higher rates of trauma and, in turn, to their higher rates of psychotic symptoms (Rosen et al., 2017).
Factors Related to Black Americans’ Experience of Schizophrenia
The factors of trauma, discrimination, and adversity have been found to correlate with increased diagnoses of schizophrenia and other psychotic disorders, and these factors also contribute to Black Americans’ unique experiences of schizophrenia and psychosis. Given the historical abuse and exclusion of Black Americans in the healthcare industry, Black Americans tend to seek help from family, friends, ministers, or faith healers as an adaptive coping method stemming from cultural mistrust of the institution. Concerning Black Americans’ mistrust of the healthcare establishment, Sussman, Robins, & Earls asked both White and Black Americans about their perceptions of mental health treatment-seeking and found that Black Americans reported significantly higher levels of fear of psychiatric treatment and hospitalization (1987). The dramatic underrepresentation of Black Americans in healthcare settings might also contribute to lower rates of official help-seeking for mental illness (Department of Health and Human Services, 2001). This cultural mistrust potentially contributes to the great discrepancy between the rates at which White Americans and Black Americans receive mental healthcare, with the US Surgeon General reporting that only approximately 16% of Black Americans with mental illness receive treatment of any kind (Department of Health and Human Services, 2001). When family, friends, ministers, and other members of the community are unable to provide for an individual, often in cases of severe mental illness like schizophrenia, Black Americans tend to seek help from emergency services and primary care physicians. In addition to their cultural mistrust of healthcare institutions, Black Americans report higher rates of being uninsured, which presents a significant practical boundary when attempting to receive help with mental illness.
Black Americans with severe mental illnesses such as schizophrenia also tend to experience a higher level of stigmatization. When a Black American person experiences mental illness, a new domain of stigma is introduced, leading to “double stigmatization”- carrying the stigma of both being black and being mentally ill. This “double stigmatization” likely contributes to reduced access to resources and increased isolation and feelings of hopelessness, which interact to slow or even prevent recover (Gary, 2005). Beyond the stigma from majority groups, Black Americans face a substantially higher degree of stigma from within their own communities. In a sample of Black Americans in the southeastern US, the majority of respondents indicated a belief that those with schizophrenia are more dangerous than those with no mental illnesses or other mental illnesses (Broussard, Goulding, Talley, & Compton, 2012). Likewise, Anglin, Link, & Phelan found that Black Americans tend to perceive a person with schizophrenia as presenting a threat of violence to others (2006). Corrigan & Watson found that Black Americans are more likely than White Americans to perceive people with schizophrenia as “dangerous” and less likely to feel pity for those diagnosed with schizophrenia (2007).
The stigmatization that Black Americans with schizophrenia face from other Black American likely results from core misperceptions of the disease and its etiology. Existing literature indicates that some Black Americans endorse causal beliefs regarding schizophrenia that align with previously proposed “causes” that have since been dismissed by psychologists, such as lack of willpower, lack of parental love, being raised by a domineering mother, and exposure to bad peer influences. In a study of Black American community members, it was found that less than half of the sample endorsed believing that biological factors causes schizophrenia, which is deemed most likely by professionals. Beyond endorsing outdated causes, many Black Americans tended to endorse “esoteric” causes for schizophrenia, such as the possession by evil spirits, punishment by god, and radiation (Compton, Esterberg, & Broussard, 2008). When compared to White Americans, Black Americans were more likely to attribute the diagnosis of schizophrenia to “bad character,” an inherently stigmatizing perception of personal failure or weakness (Schnittker, Freese, & Powell, 2000).
These indications of more stigmatized views of people with schizophrenia by Black Americans might be a result of insufficient healthcare access and exclusion from education and resources, which could intertwine with the cultural value of family that affects the Black American community’s general conception of severe, psychotic mental illness. When assessing direct relatives of hospitalized Black Americans diagnosed with schizophrenia, many family members endorsed family-related factors as causes of schizophrenia, such as having an overprotective mother or parents with a hostile or rejecting attitude (Esterberg & Compton, 2006). Even among community members with no direct relationship to an individual with schizophrenia, Black American endorse causal beliefs about schizophrenia that focus on family-related factors, such as familial exposure to mental illness, depression, negative life events, or substance abuse, which are inconsistent with modern conceptualizations of risk (Broussard, Goulding, Talley, & Compton, 2010). Given Black Americans’ tendency to seek help from family and friends, it is vital to consider the impact this misinformation may have on a Black American suffering from schizophrenia. Familial interactions in terms of expressed emotion also affect the course of schizophrenia in a way that differs significantly from other races and ethnicities. Expressed emotion is conceptualized as high levels of criticism, hostility, and/or emotional over-involvement displayed by family members. Existing literature indicates that most people with mental illness face poorer prognosis when faced with higher levels of expressed emotion (Hooley, 1998). However, for Black Americans, higher levels of critical or intrusive behavior by family members during problem-solving, mental illness-related interactions were associated with better outcomes over a 2-year period of time, as opposed to the opposite for White Americans, Latinos, and other American racial/ethnic groups. In fact, for Black Americans, low levels of this expressed emotion can communicate low levels of involvement and support for the affected individual (Rosenfarb, Bellack, & Aziz, 2006). Previously, Hooley also found that when Black American relatives respond to an individual’s psychotic symptoms with criticism or expressed emotion, the affected individual tends to interpret the interaction as one of care and concern (1998).
Beyond the value of familial bonds, religion also plays an integral role in Black American culture. These religious themes are crucial to conceptualizing the experience of schizophrenia and other psychotic disorders in Black Americans. Firstly, religious themes affect the causal beliefs of many Black Americans, which contribute to higher levels of stigmatization. Esterberg and Compton found that more than 50% of family members of hospitalized Black Americans with schizophrenia endorse “esoteric” causes of schizophrenia, such as possession by evil spirits, punishment by god, and unfavorable horoscopes (2006). Further, in an assessment of the differences in Black Americans’ and White Americans’ beliefs about the causes of severe mental illness, Schnittker, Freese, & Powell found that Black American participants tended to consider being diagnosed with schizophrenia “god’s will” and endorse a tendency to reject professional treatment in favor of seeking help from a trusted religious figure (2000). Young, Griffith, & Williams found very low rates of referrals for professional treatment from Black American pastors, as Black clergy members reported that people with severe mental illness could cure themselves if they sought god’s guidance (2003).
Themes in Hallucinations and Delusions
It is important to view the content of Black Americans’ hallucinations and delusions within the context of the factors that affect their diagnosis and experience of schizophrenia. Existing research indicates that themes of traumatic experiences affect an individual’s hallucinatory experience (Read, Agar, Argyle, & Aderhold, 2003). Rosen et al.’s qualitative analysis of approximately one hundred Black Americans with schizophrenia explored the content of the sample’s hallucinations and found that individual trauma and environmental adversity intertwined with religious themes in most recurring hallucinations (2017). Most of the participants who began experiencing psychosis in childhood reported the onset of auditory hallucinations in the midst of acute traumatic experiences, primarily childhood sexual abuse. Even as adults, these participants who began hallucinating in childhood report the auditory hallucinations as being the voice of their childhood abusers, often repeating verbal abuse they heard as a child. For male participants, hallucinations carried strong themes of bullying and verbal abuse by other men, with auditory hallucinations mirroring the verbal abuse. Most participants had some content of hallucinations related to gang activity, substance use, and drug trafficking, which aligns with participants’ reports of childhood and adolescent environmental stressors. Overall, the content of this sample’s hallucinations reflected personal and environmental traumas along with religious themes such as demonic voices leading to temptation and hearing messages from god and the devil.
Whaley & Hall assessed the effects of cultural themes in psychotic symptoms of Black Americans with schizophrenia and hypothesized that race-related themes would dominate the hallucinatory content (2009). However, they found that the frequency of religious themes was three times greater than race-related themes in delusion and hallucinations. These findings may reflect the importance of strong religious-related cultural beliefs, as religion is a dominant force in the lives of many Black Americans, as indicated by the high levels of religious help-seeking in Black Americans with severe mental illness (Taylor, Mattis, & Chatters, 1999).
Clinical Implications and Future Directions
Existing research, while suggesting some clinician bias, emphasizes the elevated rates of schizophrenia and psychotic disorders in Black Americans and reveals unique cultural aspects that affect Black Americans’ diagnosis and experience of schizophrenia. Elevated rates of trauma, environmental adversity, barriers to resources, and experiences of discrimination operate as risk factors for developing the positive symptomatology of schizophrenia. Black Americans face higher levels of stigmatization both in wider society and within their own communities. Religion, as an important aspect of many Black Americans’ culture, affects stigmatization and community members’ perceptions of schizophrenia, and intertwines with trauma to make up much of Black Americans’ thematic hallucinatory content.
While research exists on some of the reasons Black Americans suffer higher rates of schizophrenia and receive less treatment, much literature still indicates that Black Americans who seek professional treatment experience significantly less improvement in symptoms of psychosis, even after controlling for clinical and sociodemographic characteristics (Li, Eack, Montrose, Miewald, & Keshavan, 2011). This may indicate a failure on the part of clinicians to incorporate appropriate cultural understanding in the diagnosis and treatment of schizophrenia in Black Americans. While most clinicians and diagnostic interviewers use structured clinical interviews such as the Structured Clinical Interview for the DSM-5 to diagnose schizophrenia, many still fail to overlook Black Americans’ symptom severity and cultural dimensions of psychopathy, such as cultural mistrust and religious factors (Whaley, 2009). Beyond increasing the cultural competence of clinicians, the diagnostic tools themselves might also be revised to best assess people of all cultural backgrounds. Further, when considering effective treatment for Black Americans, discrimination and social inequality must be addressed to reduce the barriers standing between many Black Americans and mental healthcare. While psychologists and mental healthcare providers alone cannot change anti-Black sentiment in America, they can be cognizant of the unique institutional and cultural adversities Black Americans face when diagnosing and treating the severely mentally ill Black population.