TY - JOUR
T1 - Palliative and End-of-Life Care Interventions with Minoritized Populations in the US with Serious Illness
T2 - A Scoping Review
AU - Varilek, Brandon M.
AU - Doyon, Katherine
AU - Vacek, Shelie
AU - Isaacson, Mary J.
N1 - Publisher Copyright:
© The Author(s) 2024.
PY - 2025/1
Y1 - 2025/1
N2 - 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.
AB - 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.
KW - end-of-life care
KW - intervention
KW - minoritized populations
KW - palliative care
KW - scoping review
KW - serious illness
UR - http://www.scopus.com/inward/record.url?scp=85184387144&partnerID=8YFLogxK
U2 - 10.1177/10499091241232978
DO - 10.1177/10499091241232978
M3 - Article
C2 - 38320752
AN - SCOPUS:85184387144
SN - 1049-9091
VL - 42
SP - 112
EP - 120
JO - American Journal of Hospice and Palliative Medicine
JF - American Journal of Hospice and Palliative Medicine
IS - 1
ER -