Palliative and End-of-Life Care Interventions with Minoritized Populations in the US with Serious Illness: A Scoping Review

Abstract

Introduction: Over the past 20 years, palliative care in the United States has grown significantly. Yet, access to and/or engagement with palliative care for minoritized persons with serious illness remains limited. In addition, the focus of palliative and end-of-life care research has not historically focused on equity-informed intervention development that collaborates directly with minoritized populations. Equity-informed interventions within palliative and end-of-life care research have the potential to champion collaborations with persons with serious illness and their families to mitigate health inequities. The purpose of this scoping review was to examine and describe the literature on the approaches used in the design and development of palliative and end-of-life care interventions with minoritized populations with serious illness.

Methods: The Joanna Briggs Institute methodology for scoping reviews was followed for tracking and reporting purposes. Included articles were described quantitatively and analyzed qualitatively with content analysis.

Results: Thirty-seven articles met the inclusion criteria: eight used quantitative methods, eight used qualitative methods, ten reported a community-based participatory research method, nine used mixed-methods, and two had research designs that could not be determined. The qualitative analysis revealed three themes: (1) stakeholder involvement and feedback, (2) intervention focus, and (3) target intervention population (population vs healthcare clinician).

Conclusions: Using an equity-informed research approach is vital to improve palliative and end-of-life care interventions for minoritized communities with serious illness. There is also a need for more robust publishing guidelines related to community-based participatory research methods to ensure publication consistency among research teams that employ this complex research method.

Keywords: end-of-life care; intervention; minoritized populations; palliative care; scoping review; serious illness.