Our study examined palliative care literature to determine if and how researchers named racism or other system/interpersonal factors in the contextualization of their findings, and whether this differed based on the intentionality with which race and ethnicity were explored. We found that the overall number of articles that included race and ethnicity as variables have increased over the last 13 years, suggesting that race and ethnicity is of greater interest to researchers. Despite a large majority of studies explicitly including race or ethnicity as part of the research intention, researchers rarely explored the role of racism – either explicitly or indirectly– with fewer than half of the articles acknowledging these root causes in any capacity and only 7% naming racism explicitly.
Overall, the paucity of discourse on racism in the palliative care literature mirrors the general medical literature where the word “racism” appeared in less than 1% of articles in four of the highest impact general medical journals (196). Low rates of the word racism observed in our findings could have several explanations. It is possible that researchers did not consider systemic or interpersonal racism as causes for the observed outcomes. Although the use of the word racism was low, the acknowledgement of systemic or interpersonal factors was higher, suggesting that researchers may have been encouraged by medical journal reviewers or editors to censor their language if they did attempt to name racism as a root cause (197).
The time trends regarding the use of keywords is also interesting to note. The proportion of articles that mention racism explicitly or implicitly are highest in 2012, 2022 and 2023. We postulate that this may be driven by societal events that brought discussions of race and racism to the fore, particularly in the United States and Canada. For example, the murders of Trayvon Martin in 2012 and George Floyd in 2020 in the US, and the confirmation of mass unmarked graves at residential schools in Canada in 2021 each spurred social movements and generated increased cultural awareness of inequities and injustices faced by racialized people. As well, many racialized communities had higher case fatality rates during the COVID-19 pandemic, drawing attention to exiting health and social inequities for racialized people (198-200). Since 2020, advocacy for racial equality has prompted governments, health care institutions, academic organizations, and medical journals to create new policies and standards (201-203) – including the importance of naming and discussing racism in health disparities research, which may explain the upward and seemingly sustained trend we observed over the past 3 years.
Regarding the relationship between the research purpose and contextualization of findings, we found that that studies that articulated race or ethnicity within their research question more frequently discussed systemic and interpersonal factors when contextualizing their findings. This may indicate that researchers with more understanding of the root causes of inequities for racialized and ethnically minoritized groups are more likely to design research questions and subsequent interpretations of findings that articulate these factors.
Although not central to our primary research questions, we noted interesting findings within our study results that suggest additional concerns regarding representation. First, most studies examined outcomes for people who are White, using this population as a comparator group. This approach has been criticized for centering Whiteness and placing many diverse groups within the Other (165). It also perpetuates a broader system where White race is considered normative, and outcomes for individual racialized groups are obscured (204). While White, Black, Hispanic/LatinX groups were examined in more than 50% of citations, others were named in 25% or fewer studies. This lack of representation highlights groups that could potentially benefit from more focus in palliative care research. Second, very few studies in our sample were from low- or middle-income countries. In these countries, where access to palliative care may limited for all individuals, it is plausible that racial or ethnic disparities may not be a research priority. Alternatively, scholars from these areas have described discrimination and racism within the academic publishing process itself (205). Because research has been identified as a key foundational component of improving national palliative care systems, (206, 207) it is imperative that research from under-represented populations and countries be supported and prioritized.
Limitations:
First, because race is socially constructed, its definitions, meanings, and racial categories themselves can change depending on the larger context. For example, the same person may be identified as different races in different countries. Some countries do not widely discuss race at all, but discrimination based on colourism may occur.
Thus, researchers will conceptualize race based on their own setting, which may result in some knowledge being missed by our search strategy.
Second, when analyzing study characteristics, we adopted the racial and ethnic categories that were consistent with those used in the included studies. These categories are often problematic as they erroneously group these distinct concepts together and centre on North American academic research norms. While this approach is widely applied in medical research, it confounds race and ethnicity, which may impact the ability to analyse and discuss the content in a more robust way.
It is also important to acknowledge that racism has profound and pervasive effects on many aspects of a person’s health. However, this does not give a complete picture of a nuanced social experience. Other factors related to one’s identity also contribute to health inequities for racialized and ethnically minoritized individuals. These components are often captured in social determinants of health and intersectionality frameworks and include categories such as sexism, access to education, discrimination related to social class, gender identity, etc. Limiting the analysis to racism alone may miss other important related factors.
Finally, when examining if authors explored interpersonal or system level factors in the interpretation of their findings, there was no pre-existing list of keywords. Although we created our own list of terms based on existing recommendations and guidelines, this may have resulted in a list that is too specific or too sensitive.
Recommendations:
Based on our findings, we propose three groups of recommendations for palliative care researchers:
1. Education
Prior to beginning studies exploring race, ethnicity or racism, researchers should educate themselves about these topics and how they work as underlying mechanisms of health disparities. Evidence based guides based on consultations from affected communities are available with concrete, detailed advice on how to approach and frame questions of enquiry (208).
2. Research planning
Researchers must design their research questions with intention, grounded in evidence-based understandings of underlying mechanisms, such as systemic racism. They must also ensure that the data sets are collected and constructed to meaningfully meet the research objectives. If partitioning based on race or ethnicity is required for data analysis, it is important to avoid unnecessary groupings that may obscure findings for certain individual groups. Further, if comparisons are warranted, researchers should avoid using White as the normative comparator. Rather, consider the reason and justification for comparison, avoiding reflexive comparison to the perceived dominant group. Some alternate approaches include comparisons to the group's historical data or to the population average (BC antiracism guide- already cited elsewhere). Additionally, researchers must make sure that race and ethnicity are not conflated. If they are used together, this should be justified based on the researchers’ context or available data sets.
3. Interpretation of findings
An evidence-based understanding of underlying root causes of health disparities, including the role of racism and its manifestations, should be used to guide the interpretation of findings. Differences should not be attributed to patient factors without evidence, as this may reflect researchers’ underlying biases and risks perpetuating stereotypes, and worsening disparities (6, 203).