Naming racism as a root cause of inequities in palliative care research: A scoping review

Abstract

Abstract Background Research is a core component in palliative care development and racial and ethnic inequities in palliative care are well-established. Examining this topic in an evidence informed manner, including the recognition of established root causes such as systemic racism, will allow researchers to substantively inform meaningful actions and policy changes to ultimately decrease these differences. Objective To summarize how peer reviewed literature has investigated racial and ethnic differences in palliative care over the last 13 years, exploring to what extent established root causes such as systemic and interpersonal racism are considered when contextualizing findings. Methods We searched bibliographic databases for primary, peer reviewed studies globally, in all languages, that collected race or ethnicity variables in a palliative care context (January 1, 2011 to October 17, 2023). We recorded study characteristics and categorized citations based on their research intention (if race or ethnicity were named in the study purpose), and the interpretation of findings (i.e. if systemic or interpersonal factors, including racism, were discussed when contextualizing the study results). Results Of 181 included studies, most were from the United States (88.95%) and purposefully investigated race or ethnicity (71.27%). Systemic or interpersonal factors were more often alluded to (41.44%) than explicitly named (20.44%). Racism was specifically mentioned in 7.18% of publications. There appears to be a trend toward explicitly naming racism from 2021–2023, with 36% of studies published in 2023 using the key word racis*. Conclusion Researchers hold power in shaping the trajectory of health disparities research regarding racial and ethnic disparities in palliative care, and informing subsequent actions and policy changes aimed to reduce these inequities. It is imperative that researchers use thoughtful methods in their studies, including purposeful research framing, questions and analysis; and that researchers ground these components in an evidence-based understanding of the root causes that drive these inequities, including the explicit naming of systemic and interpersonal racism.