Do Black lives matter to clinical neuropsychologists? An introduction to a special issue

The racial strife that was exacerbated by the murder of George Floyd in the Spring of 2020 prompted many of us to reflect on race as a social justice issue in clinical neuropsychology. As a specialty in which White Americans have historically been over-represented (Sweet et al., 2021), how much do Black lives really matter to clinical neuropsychology? Of course, the broader Civil Rights movement has been active for decades and the racial inequities in psychological science, training, and practice have existed for even longer (Guthrie, 2004). Importantly, they are inextricably linked and relevant to clinical neuropsychology. Black Americans experience marked health disparities and are over-represented in many of the clinical populations that neuropsychologists serve (e.g. vascular disease, dementia, and infectious disease). And yet, fewer than 1% (n = 75) of the nearly 11,000 articles published in our field’s six major journals since 1985 focus specifically on Black Americans. As seen in Figure 1, the limited emphasis on Black Americans in our neuropsychological research has not improved meaningfully in 35 years, as publication frequencies fall reliably below studies focused on other sociodemographic factors such as age, sex/gender, and education/literacy (ps < .0001). A majority of the neuropsychological articles on Black Americans emphasize race-based test score discrepancies, psychometrics, and norms (e.g. Heverly et al., 1986). Although such psychometric studies have value, they are nevertheless fraught with thorny interpretive issues (e.g. Manly & Echemendia, 2007; Possin et al., 2021) and represent only a small part of the brain health needs of Black Americans. Moreover, race is a social, rather than biological, construct, and the issues associated with race and brain health are tremendously complex and cannot be resolved with an exclusive psychometric focus.

Figure 1. Percentage of 10,531 article titles that focus on specific demographic issues in six major clinical neuropsychology journals between 1985 and 2020 (NB. data were drawn from the sample of articles detailed in Matchanova et al., in press).

Inspired by the Black Lives Matter academic strike (Nature, 2020), this special issue was a call to action for clinical neuropsychologists to use their platform as clinician-scientists to promote the brain health and quality of life of Black Americans. The special issue begins with two systematic reviews examining the representation of Black Americans in neuropsychological studies. Historically, well over half of articles in clinical neuropsychology journals fail to include even basic descriptive data on race/ethnicity (Medina et al., 2021). And even when race/ethnicity data are reported, they are commonly ignored or treated as a “nuisance” confounding variable, rather than as a thoughtful focus of prospective investigation. In this special issue, Pugh et al. (2022) estimated that Black Americans – who represent 13.4% of the U.S. population – comprise only 10.7% of the participants in neuropsychological research published over the last decade. The under-representation of Black Americans is particularly evident in studies of older adults, chronic medical conditions, and neurological disorders. In a parallel review, Ray et al. (2022) observed that two-thirds of neuropsychological studies that reported race/ethnicity did not include a sufficient epidemiological representation of Black Americans. A staggering 39% of those studies do not include a single Black participant. These data underscore the importance neuropsychologists moving beyond simplistic checklist recruitment approaches. Modern inclusion science approaches are needed to emphasize community engagement and genuine partnership in developing research questions, designing study measures, recruiting and retaining participants, and integrating the study findings back into the community (George et al., 2014).

The other 13 articles in this special issue provide new insights on Black Americans living with different clinical conditions that affect brain structure and function. Two of the studies in this special issue focus specifically on Black children. Miller et al. (2022) describe the benefits of educational decision-making empowerment in caregivers of children with sickle cell disease. Wexler et al. (2022) present data on the importance of informant source in interpreting symptom ratings of Black children being evaluated for Attention-Deficit/Hyperactivity Disorder (Wexler et al., 2022). Four articles report on issues related to the diagnosis (Graves et al., 2021; Salo et al., 2022), trajectory (Johnson et al., 2022), and care (Pereira et al., 2022) of older Black American adults with neurocognitive disorders. Three additional papers describe the neurocognitive aspects of human immunodeficiency virus (HIV) disease in Black Americans, focusing on health literacy (Beltran-Najera et al., 2022), comorbid conditions (Thames et al., 2022), and associations with daily functioning (Thompson et al., 2022). The final four studies help emphasize the “psychology” in clinical neuropsychology by exploring psychological factors that can affect the brain health of Black Americans, including vascular depression (Bogoian & Dotson, 2022), illness representation (Gupta et al., 2022), gendered racism (Hill-Jarrett & Jones, 2022), and stereotype threat (Van Landingham et al., 2022).

The publication of this special issue during Black History Month in the United States was intended to encourage clinical neuropsychologists to reflect on historical issues related to race and to foster creative thinking about brain health equity for Black Americans. Although the content of this special issue represents some progress in increasing the representation of Black Americans in neuropsychological research, we have a long way to go on the road toward brain health equity. We call for organized research efforts and funding to evaluate important questions, such as: (1) What are the presentations, clinical features, and needs of Black Americans with central nervous system disease? (2) How can we develop and use brain-behavior assessments in ways that mitigate racial bias and better reflect the needs of underserved groups? (3) How does race interface with health literacy and psychological factors (e.g. discrimination) to affect the engagement of Black Americans with neuropsychological services and their uptake? (4) How does race influence “established” phenomena in clinical neuropsychology (e.g. the inter-relationships between neuropsychological functions and well-known factors such as other demographics or self-report of cognitive symptoms)? We call on researchers to move beyond comparing Black Americans to White Americans as the “gold standard” of inclusive research. We call on publishers, editors, reviewers, and authors to normalize the full reporting and thoughtful consideration of race as a potential factor in their work. We call on clinical neuropsychologists to engage with underserved communities and listen carefully to their needs. Finally, we call for concerted efforts to better engage, attract, and retain Black Americans in neuropsychological training programs and professional leadership positions.

Acknowledgements

We are grateful to the thousands of participants who contributed their time and effort to these studies, to the outstanding research teams that responded to this call to action, to the many new and seasoned reviewers who provided helpful critiques of these studies, and to Dr. Yana Suchy and the TCN editorial team for their support and efforts behind the scenes. Thank you all!

Disclosure statement

No potential conflict of interest was reported by the authors.

Funding

The author(s) reported there is no funding associated with the work featured in this article.