Enhancing inclusivity of older Black and African American adults in mental health research

KEYWORDS:

• Diversity
• Equity
• Inclusion
• Black
• African American

Introduction

This editorial accompanies our special issue on mental health in older Black adults. The goal of this introductory editorial is to briefly describe strategies for enhancing inclusion of and attention to research on Black older adults in behavioral health research. This editorial was inspired by and owes a debt to the work of Ighodaro and colleagues (Ighodaro et al., 2017). Prior to saying more, we would like to make a note about language use in this editorial. In this introductory editorial, we use the term “Black” to refer to those who self-identify as Black and/or African American, as well as Afro-Latinx, Afro-Caribbean, African, etc., while acknowledging there is important diversity within groups who identify as racially Black.

Some background may further set the stage for this editorial. The editorial team of CG, comprised of the Editor-in-Chief and Associate Editors, meet monthly. In these meetings, the team discusses journal operations (e.g., submission numbers and review timelines), journal metrics (e.g., publication citation and speed), and recurring activities such as our annual award for the best paper by a new and emerging professional. In addition, the team reviews journal content in relation to important and emerging issues in the field. These discussions at times lead to consideration of special issues – which are solicited by the editorial team or submitted for consideration by those outside the team. In 2020, as part of our regular and ongoing consideration of content coverage, we examined the inclusion of articles from the past three years along with key diversity factors including gender, sexual orientation, race, ethnicity, nationality, socio-economic status, and rurality (analysis by EA). Through this investigation, we found that although 9% of our papers focused on racially and ethnically diverse populations and 9% focused on other aspects of diversity (e.g., LGBTQ populations; rural populations), only 2% of our articles focused in particular on behavioral health in Black older adults. Our journal’s low inclusion of research focusing on Black older adults is consistent with the wider body of psychological research that focuses overwhelmingly on samples who are White (Roberts, Bareket-Shavit, Dollins, Goldie, & Mortenson, 2020). Our review of diversity inclusion led to plans for a special issue on mental health in older Black adults.

The context of racism for research on mental health in older Black adults

Racism – both historical and contemporary – impacts mental health research that includes or is focused on Black older adults in several ways. The experience of racism may lead to a distrust of health-care professionals and those who conduct medical research. Historically in the U.S., medical research has included harmful and deadly experiments on Black and African American people (Skloot, 2010; Washington, 2006). For example, during the antebellum period, people who were enslaved were commonly used as property in brutal biomedical experiments (Ighodaro et al., 2017). One example of this pattern of abuse was conducted by Dr J. Marion Sims, the “father of modern gynecology.” He performed operations on enslaved women without anesthesia, including painfully extracting the urethra and neck of the bladder (Gamble, 1997). Infamously, the Tuskegee Syphilis Study, which ran from 1932 to 1972, is a more recent example of racial abuse and racially biased design, implementation, and interpretation of research. Researchers followed 300 Black men diagnosed with syphilis without informing them of their diagnosis and subsequently failed to attend to their medical needs throughout the study, which resulted in many of the infected men infecting others and even dying. Such experiences – knowledge of historical atrocities and present-day experiences of racism in healthcare and in research (Blendon & Casey, 2019; Del Pino et al., 2019) – may naturally lead to reluctance by Black populations to volunteer to participate in research (Park, 2017).

Relatedly, it is critical for all research team members to be mindful of the ways in which implicit – or explicit – bias and racism may impact the formation of hypotheses, design, data collection, and interpretation. As an example, notable founders in the fields of psychiatry and psychology held racist beliefs, which informed their theoretical frameworks, study design, and data interpretation. For example, Emil Kraepelin, often considered the founder of modern psychiatry, promoted eugenics, racism, and anti-Semitism (Schwartz, Moskalewicz, & Wiggins, 2017). Raymond Cattell, considered widely influential in personality psychology, was a supporter of racial segregation, and some professionals associated his work with eugenics (Tucker, 2005). Statistical methodology examining departures from norms was found in part through the use of intelligence tests to support false racial differences (Galton, 1869). Alongside the myriad of historical evidence showing biased practices in psychology, examples of blatant racism in psychological theories persist to this day. In a 2011 blog post on Psychology Today, psychologist Satoshi Kanazawa presented research that Black women were “objectively” less attractive than white women; the research was not peer reviewed and Psychology Today later retracted the post with an apology (Perina, 2011).

After considering some of the ways racism has impacted research centered on Black populations and the subsequent ways Black populations have responded to this racism (i.e., through justified distrust and non-engagement), it is important to consider ways we, as a field, can move forward to include and do justice to this important group. One thing we can do as researchers is investigate how race impacts study outcomes. One approach to examining the role of race in study outcomes is to consider race within intersectional and health disparity models (Centers for Disease Control and Prevention, 2017), and to consider the role of resilience. These issues are discussed in subsequent paragraphs.

There is an extremely limited body of mental health research that sufficiently includes and/or focuses on this population. The neglect of Black older adults within mental health research may be constructed itself as an example of and a product of racism. Our special issue seeks to address this omission – but is only a small step forward. In the remainder of this editorial, we will discuss strategies that investigators may wish to consider in building the body of research including and/or focusing on Black older adults. We have tried, where possible, to include references to specific analytic approaches, measurement tools, and research process approaches. We have built this brief discussion to align with what may be sequential steps in research – factors for building teams, designing studies, recruiting participants, and interpreting data while recognizing that processes intersect and overlap.

Strategies for investigators

Enhancing representation of Black investigators

Recent research by the American Psychological Association (APA) has found that only 4% of psychologists in the U.S. workforce identify as Black or African American (American Psychological Association, 2018). Mental health researchers often work in university or academic medical settings where Black professors are under-represented at the assistant, associate, and full professor levels (Association of American Medical Colleges, 2019). At the full professor level, Black professors are underrepresented across departments including Psychiatry and were more under-represented in 2016 than 1990 (Lett, Orji, Sebro, & Koniaris, 2018). The lack of research that centers race on the dominant narrative (and the phenomenon of racist research that still exists) may be due in part to the fact that most journal editors and scientists in positions of research leadership are White (Roberts et al., 2020).

Thus, efforts to diversify research teams require a transformative and targeted approach. Outreach is essential, beginning at the undergraduate level. Beginning in college, students of color can be encouraged to be involved in research focusing on behavioral health and aging. This can happen in any university or academic medical setting, although specific institutions, such as Historically Black Colleges and Universities (HBCUs) and community colleges that are more diverse, might be specifically targeted, as well as partnering with organizations such as the Association of Black Psychologists. Within doctoral programs, research topics centering people of color should be introduced. Additionally, research grants and funding geared toward Black students should be made available. Recruitment to post-doc and PI-level positions should include diversity as a positive aspect in candidacy. Altogether, through mentorship as well as accessible research positions, Black members of research teams should increase, to the benefit of all team members as well as to the science.

Obviously, an individual does not need to be Black to have a research interest in behavioral health in Black older adults. Yet, we propose that increasing inclusivity of older Black adults as research participants begins with building inclusive research teams (Ighodaro, Littlejohn, Akhetuamhen, & Benson, 2021). Such research teams should also consider the diversity of academic expertise, given that race and ethnicity are multi-faceted variables within our society that are affected by social, political, economic, historical, and cultural entities (Ighodaro et al., 2017; Valantine & Collins, 2015). Therefore, it is important to have sociologists, anthropologists, historians, and other disciplines with socio-cultural-historical knowledge to assist in designing appropriate methodology and interpreting data (Hong & Page, 2004).

Engaging participation by Black older adults in research

Within the US, the National Institutes of Health (NIH) is the major governmental research funding body whose policies about the assessment and inclusion of participants from diverse racial backgrounds often set the stage for research (including research conducted outside of NIH). The NIH requires that all clinical research address plans to include “minority groups” in all NIH funded clinical research studies “in a manner that is appropriate to the scientific question under study” (National Institutes of Health, 2001) and subsequently amended this to include individuals across the lifespan (National Institutes of Health, 2017). Despite this long-standing policy, most studies drastically under-represent diverse racial and ethnic groups (National Institutes of Health, 2022; Roberts et al., 2020).

A first step to enhancing recruitment of Black older adults in mental health research is to listen to the voices of Black older adults (Bardach et al., 2019). Numerous studies have examined barriers to research participation in Black and other diverse racial groups, which include lack of knowledge about the informed consent process, lack of access to information, language barriers, time and financial difficulties, the risk of negative outcomes and lack of access to health care to address these potential outcomes, stigma, fear of discrimination by health insurance companies, the belief that the research is primarily beneficial to White populations, and the belief that the priority of the research is to advance the scientists’ careers (Areán, Alvidrez, Nery, Estes, & Linkins, 2003; Bardach et al., 2021; Brown, Marshall, Bower, Woodham, & Waheed, 2014; George, Duran, & Norris, 2014; Lang et al., 2013; Newmark, Gebara, Aizenstein, & Karp, 2020; Shah, Macauley, Ni, Bay, & Hackney, 2022). These practical and attitudinal barriers are set against the backdrop of the historical mistreatment of Black individuals in medicine (Hall et al., 2015; Ighodaro et al., 2017). Thus, efforts to enhance participation of Black older adults in behavioral health research should specifically target logistical and attitudinal concerns, as well as remain mindful of the larger social-medical context and a legacy of mistrust (George et al., 2014).

At the same time, investigators should not assume that older Black adults do not wish to participate in research. For example, in a survey of 700 Black adults regarding their willingness to participate in health-related research studies, 16% had previously participated in health-related research, while 84% had not; but within those who had not, 70% expressed a willingness to do so (Lang et al., 2013). This result is consistent with a systematic review of 44 studies examining barriers and facilitators to participation, in which “altruism” was one of the more commonly articulated facilitators to participation in research by underrepresented groups (George et al., 2014).

To enhance recruitment of Black older adults in research studies, study staff involved in participant recruitment should be trained to be aware of these barriers and facilitators to ensure cultural competency and humility are being practiced (Ejiogu et al., 2011). Researchers can use both active and passive outreach methods to reach their local communities. Spaces such as predominantly Black nursing homes, assisted living facilities, religious institutions, and/or community-based clinics may be helpful (McSweeney, Pettey, Fischer, & Spellman, 2009; Sharpe, Stucker, Wilcox, Liese, & Bell, 2021). In these cases, forming authentic relationships and lasting partnerships in these communities is essential as a precursor to providing initiatives that benefit the community (Ejiogu et al., 2011; McSweeney et al., 2009). As an example of the success of this approach, Sharpe et al. (2021) achieved a 94% enrollment goal of African American participants by using a combination of these methods, including strategies for intensive retention and over-enrollment (Sharpe et al., 2021).

Assessing race and ethnicity in mental health research

A superficially basic but quite complicated and important question within this line of work pertains to how researchers ask research participants about their racial and ethnic identities, and how those identities are reported and analyzed as a variable, particularly in quantitative research (as opposed to qualitative research which can provide opportunities for rich discussions of identities). Consideration of the assessment of race and ethnicity is important at both the design and interpretation phases of research. Within the United States (US), the NIH follows a federal regulation for the minimum standards for maintaining, collecting, and presenting data on race and ethnicity that is required for research, census data, and national health databases (National Institutes of Health, 2001). NIH states that the following categories shall be used: (a) For “ethnic categories,” “Hispanic or Latino” or “Not Hispanic or Latino” and (b) For “racial categories,” “American Indian or Alaska Native,” “Asian,” “Black or African American,” “Native Hawaiian or Other Pacific Islander,” or “White” (see Appendix). A 2017 amendment focused on valid analyses of sex/gender and race/ethnicity in Phase III clinical trials, requiring not only the assessment of data on race and ethnicity but the reporting of results by race/ethnicity (National Institutes of Health, 2017). A recent US federal panel considered ways to improve the quality of race/ethnicity data in federal activities (which would apply to the US Census as well as other federal activities such as federally funded research) (U.S. Department of Commerce Economics and Statistics Administration, 2017). The panel considered many options including asking individuals who identify as Black/African American, American Indian or Alaskan Native, or White to identify their “racial origins” (e.g., African American, Jamaican, Haitian, Nigerian, Ethiopian, Somali, etc.). While these changes have not been adopted by NIH – results of the US Census including the “rise” in the people who identify as “some other race” (Bahrampour, 2021) point to potential complexities to be considered when devising questionnaires that ask individuals about their racial and ethnic identities, the need for self-identification, and the importance of a wide range of options. In practice, it may be useful to start with open-ended questions such as “How do you identify your race? How do you identify your ethnicity? What identities do you use for your race/ethnicity?” along with education, gender, sexual identity and orientation, and disability. The appendix includes one example of a form for collecting diversity data that is more inclusive of a range of variables.

Of importance when considering the investigation of race/ethnicity within research is an appropriate justification for the use of race/ethnicity-based data within the research design. While the NIH requires investigators to include participants from diverse racial and ethnic background in a manner that is appropriate to the scientific question under study and looks for funded studies to include representation proportional to the U.S. Census, this does not obviate the need for investigators to carefully consider and justify why they include race as a variable in behavioral health research (Ighodaro et al., 2017). When it is included, it is critical to explain how it was obtained and caution readers against misinterpretations that could harm populations. The importance of considering race as a variable in design and interpretation again returns us to the earlier point regarding the advantages of including sociologists, anthropologists, historians, and public health community members on studies to reduce the likelihood of misinterpretation of results.

Considering intersectionality in design and interpretation of research

In helping to promote the implementation of research that is more inclusive of the Black population, it is important to consider race and ethnicity for older adults specifically. This issue’s focus on mental health in Black older adults calls forth the concept of intersectionality (Harari & Lee, 2021). Older age and racial and ethnic identity are two key diversity factors (American Psychological Association, 2021), which may have implications for social identity, risks for and presentation of mental health conditions, and experience of and equity in mental health care. It is essential therefore that research in behavioral health and aging examines multiple combinations of identities, such as those of “older” and “Black” in mental health research. Both identities are individual social locations as they are, and the intersection of these identities is one in and of itself, not just two experiences. Specifically, research on behavioral health in Black older adults might consider the effects of ageism and racism, and their intersectional effects, as well as resilience and resistance in Black older adults considering the historical context and lived experiences of older cohorts. Incorporating measures that consider both ageism and racism at the design phase may be helpful in illuminating the role of intersectional discrimination in mental health outcomes (Brownlow et al., 2019; Kim et al., 2017; Taylor, Chatters, & Sands, 2020). One instrument that has been used for this purpose is “The Everyday Discrimination Scale,” which assesses “routine experiences of discrimination” (Bourabain & Verhaeghe, 2021; Williams, Yan, Jackson, & Anderson, 1997).

Employing a health disparities model in the design and interpretation of research

Moving beyond considerations of two variables (age and race; while recognizing racial identity as more than a single variable), a related question concerns whether race should be examined independently or within a health disparity model. A health disparity model approach may avoid misinterpretations that focus on race while ignoring the broader socio-economic context. These factors are important to consider at both the point of research design (so that relevant variables are assessed during data collection) and study interpretation. The United States Centers for Disease Control (CDC) defines health disparities as “preventable differences in the burden of disease, injury, violence, or in opportunities to achieve optimal health experienced by socially disadvantaged racial, ethnic, and other population groups, and communities” which exists in all age groups including older adults (Centers for Disease Control and Prevention, 2017).

A useful model provided by the NIH Minority Health and Health Disparities (NIMHD) research framework places race and ethnicity in a multilevel, multidomain model that depicts a wide array of health determinants relevant to understanding and addressing minority health and health disparities and promoting health equity (Alvidrez, Castille, Laude-Sharp, Rosario, & Tabor, 2019). It combines the National Institute on Aging (NIA) health disparity research framework (Hill, Pérez-Stable, Anderson, & Bernard, 2015) and the socioecological model (Bronfenbrenner, 1977), extending the NIA model by categorizing determinants according to levels in the socioecological model. Further, important to those interested in studying mental health in Black older adults, the model emphasizes a life-course perspective. Within this framework, “cultural identity” is a component of the sociocultural environment at the individual level, and discrimination is considered an aspect of the sociocultural environment at the interpersonal, community, and society levels. The framework reinforces that conducting research entirely within “one cell” of the framework misses the opportunity to consider cumulative and interactive determinants of health disparities.

Alongside the potential usefulness of adopting this approach, one challenge may be putting such a complex framework into research practice, particularly as it concerns analytic strategies for modeling health disparities as an independent variable. To aid with this, there is a large literature on the measurement of health disparities, focusing largely on statistical methods for group comparisons (e.g., pairwise comparison versus multivariate regression and related methods). There are methods to calculate health disparities such as the Index of Disparity equation (Pearcy & Keppel, 2002) and the Health Disparities Calculator (a statistical software that generates multiple measures of health disparities; Breen, Lewis, Gibson, Yu, & Harper, 2017). Another approach is to consider geographic location of residence as a health disparity indicator including the Area Deprivation Index (ADI) (Singh, 2003)- a composite index drawing from weighted indicators of neighborhood socioeconomic disadvantage (e.g., income, employment, education, and housing equality). Many of these recommendations are most suited to larger scale epidemiologic research and would not be statistically sound in smaller samples more familiar to clinical research; however, knowledge of these frameworks and analytic approaches may be informative for any researcher. While we believe in the utility of this research approach, it is important to reiterate that some criticize these multivariate approaches as being overly negative in orientation.

Recognizing resiliency and resistance in design and interpretation of research

In line with the notion that Black culture as a whole is not monolithic, we recognize that while addressing the reality of health disparities is critical, it is equally important not to singularly focus on health disparities when designing studies that consider Black and African American older adult mental health. Despite the importance of addressing health disparities in Black populations (due to much of their origin in institutionalized racism), it is also the case that bias may be found in study designs that fail to consider positivity and resilience factors in African American older adults. This positivity and resilience has at times been framed as the “ethnic paradox” in mental health (Thomas Tobin, Erving, Hargrove, & Satcher, 2022). Through culturally based factors such as a reliance on religious faith and social support, Black older adults have been found to insulate themselves against many of life’s stressors in a manner that could be characterized as “resilient” (Boyd-Franklin, 2003; Harrison, Kahn, & Hsu, 2005; Hines & Boyd-Franklin, 1996). Moreover, it has been proposed that individuals within the Black population engage in a form of resilience entitled “Black Resilience Neoliberalism” (Clay, 2019) which holds that Black people utilize human capital to overcome structural racism and associated disadvantages they face within society. In accordance with the prior presented evidence, resilience and the ability to overcome struggle can be seen as a positive aspect within Black populations. However, it is also important to recognize the potential detriment of repeatedly having to be resilient in the face of all hardship.

In highlighting the potential detriments of overemphasizing the role of “resilience” within Black older adult mental health, an overemphasis on resiliency and “triumph over adversity” places additional expectations and judgments on those who experience racism, and may gloss over real differences between groups such as trauma exposure and PTSD (Erving, Thomas, & Frazier, 2019). Furthermore, cultural stereotypes such as that of the “Strong Black Woman” (also denoted as the Black Superwoman) have been associated with a lower likelihood to report distress by Black women embodying this stereotype, which in turn leads to exacerbated mental illness (West, Donovan, & Daniel, 2016). Particularly in comparison to other racial/ethnic groups, Black women (in accordance with this stereotype) have the expectation of overcoming hardship while not reacting to mistreatment (Harris-Lacewell, 2001), and engaging in self-reliance and an active resistance of negative mental health despite the circumstance (Watson & Hunter, 2015). Stemming from the transatlantic slave trade, this mode of resilience is particularly relevant within older Black female populations and could be a major contributor to mental illness in older Black women. A comparable racial stereotype for older Black men entitled “John Henryism” showcases similar trends. Continuing along with this theme, an alternative framework of “resistance” may also be relevant. Suffice to say that when designing research, investigators should avoid both a negative bias or overly positive expectation about the role of race and racism in examining mental health outcomes for Black older adults. Accordingly, researchers might benefit from including measures of ageism, racism, and resilience in their work with older Black populations. Also, while addressing the complexities and nuances of the older Black lived experience, a particular need to allow older Black adults to “tell their stories” is exceedingly pertinent. In this way, qualitative research, particularly in its potential use within older Black populations, continues to have an important role in moving the field forward.

Conclusion

In this journal, we are pleased to feature articles focusing on mental health in Black older adults. In the future, we hope to feature many more such articles. We hope this introductory editorial provides a starting place for investigators seeking greater representation and inclusivity across study teams and study participants and in their design, methods, and data interpretation.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

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

Appendix A:

Additional Reading

Jackson, John P., Jr, Weidman, Nadine M. (2006). Race, racism, and Science. Rutgers University Press. ISBN 978-0-8135-3736-8.

Saini, Angela (2019). Superior: The Return of Race Science. Beacon Press. ISBN 0–8070-7691-0.

Washington, H. (2006). Medical apartheid: The dark history of medical experimentation on Black Americans from colonial times to the present. New York: Doubleday.

Appendix B:

Additional Resources

Resource for analytic determination of health disparity indices:

https://seer.cancer.gov/archive/publications/disparities/

Toolkit for researchers: Farooqi, A., Jutlla, K., Raghavan, R., Wilson, A., Uddin, M. S., Akroyd, C., Patel, N., Campbell-Morris, P. P., & Farooqi, A. T. (2022). Developing a toolkit for increasing the participation of black, Asian, and minority ethnic communities in health and social care research. BMC Medicine Research Methodology, 22(1), 17. 10.1186/s12874-021-01489-2

Guide for assessing race and ethnicity: Wadsworth, L. P., Morgan, L. P., Hayes-Skelton, S. A., Roemer, L., & Suyemoto, K. L. (2016). Ways to boost your research rigor by increasing your cultural competence (part 1 of 2). The Behavior Therapist, 39(3), 76–82.