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1.
J Palliat Med ; 26(2): 220-227, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-35969381

RESUMO

Background: Racial and ethnic disparities are well-documented in health care but generally understudied in palliative care. Objective: The goal of this mixed-methods study was to examine differences in patient experiences by race/ethnicity in palliative care and to qualitatively explore minoritized patient experiences with care for a serious illness. The data for this study were collected as part of a larger national effort to develop quality measures for outpatient palliative care. Setting/Subjects: Patients receiving outpatient palliative care (n = 153 Black patients and 2215 White patients) from 44 palliative care programs across the United States completed the survey; 14 patients and family caregivers who identified as racial/ethnic minorities participated in an in-depth qualitative interview. Measurements: We measured patients' experiences of (1) feeling heard and understood by their palliative care provider and team and (2) receiving desired help for pain using items developed from the larger quality measures project. We also conducted in-depth interviews with 14 patients and family caregivers to understand their experiences of palliative or hospice care to provide additional insight and understand nuances around minoritized patient experiences with palliative care. Results: Survey responses demonstrated that a similar proportion of Black patients and White patients (62.9% vs. 69.3%, p = 0.104) responded "completely true" to feeling heard and understood by their provider and team. Fewer Black patients than White patients felt that their provider understood what was important to them (53.3% vs. 63.9%, p = 0.009). The majority of Black patients and White patients (78.7% vs. 79.1%, p = 0.33) felt that they had received as much help for their pain as they wanted. Interviews with patient and family caregivers revealed positive experiences with palliative care but demonstrated experiences of discrimination in health care before referral to palliative care. Conclusion: Future work is needed to understand nuances around minoritized patient experiences with palliative care and receiving pain and symptom management.


Assuntos
Etnicidade , Cuidados Paliativos , Humanos , Estados Unidos , Cuidados Paliativos/métodos , População Negra , Dor , Avaliação de Resultados da Assistência ao Paciente
2.
J Health Polit Policy Law ; 46(5): 889-924, 2021 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-33765152

RESUMO

CONTEXT: The COVID-19 pandemic has had a disparate effect on African Americans and Latinos. But it is unknown how aware the public is of these differences and how the pandemic has changed perceptions of equity and access to health care. METHODS: We use panel data from nationally representative surveys fielded to the same respondents in 2018 and 2020 to assess views and changes in views over time. FINDINGS: We found that awareness of inequity is highest among Non-Hispanic Black respondents and higher-income and higher-educated groups, and there have been only small changes in perceptions of inequity over time. However, there have been significant changes in views of the government's obligation to ensure access to health care. CONCLUSIONS: Even in the face of a deadly pandemic, one that has killed disproportionately more African Americans and Latinos, many in the United States continue not to recognize that there are inequities in access to health care and the impact of COVID-19 on certain groups. But policies to address inequity may be shifting. We will continue to follow these respondents to see whether changes in attitudes endure over time or dissipate.


Assuntos
COVID-19 , Pandemias , Negro ou Afro-Americano , Hispânico ou Latino , Humanos , Grupos Raciais , SARS-CoV-2 , Estados Unidos
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