Anandarajah Gowri, Mennillo Meera R, Wang Sophie, DeFries Kai'olu, Gottlieb Jaya L
Department of Family Medicine and Medical Science, Warren Alpert Medical School of Brown University, Providence, Rhode Island, USA.
Department of English, University of Rhode Island, Kingston, Rhode Island, USA.
J Palliat Med. 2023 Nov;26(11):1488-1500. doi: 10.1089/jpm.2023.0090. Epub 2023 Jun 28.
Disparities in end-of-life (EOL) care remain among ethnic/racial minority populations. Choosing hospice care in the United States depends on goals-of-care discussions founded on trust. While studies examine hospice enrollment disparities and others explore trust in hospice settings in general, very few explicitly examine the role of trust in hospice enrollment disparities. To explore factors impacting trust and how these might contribute to disparities in hospice enrollment. A qualitative, individual interview study, based on grounded theory. Rhode Island, USA. : Multiple stakeholders in EOL care, with diverse professional and personal backgrounds. In-depth semistructured individual interviews were audio-recorded and transcribed as part of a broader study of hospice enrollment barriers in diverse patients. : Five researchers did a secondary data analysis, focusing on trust as the central phenomenon of interest. Researchers independently analyzed transcripts, then held iterative group analysis meetings until they reached consensus regarding themes, subthemes, and relationships. Twenty-two participants included five physicians, five nurses, three social workers, two chaplains, one nursing assistant, three administrators, and three patient caregivers/family. Interviews reveal that trust is multidimensional, involving personal- and systems-level trust, and both locus and degree of trust. Factors impacting trust include: fear; communication/relationships; knowledge of hospice; religious/spiritual beliefs; language; and cultural beliefs/experiences. While some are common across groups, several are more prevalent in minority populations. These factors appear to interact in complex ways, unique to individual patients/families, compounding their impact on trust. While gaining patient/family trust regarding EOL decision making is challenging across all groups, minority patients often experience additional compounding factors impacting trust building. More research is needed to mitigate the negative ways these interacting factors impact trust.
临终关怀(EOL)护理方面的差异在少数族裔/种族群体中仍然存在。在美国选择临终关怀服务取决于基于信任的护理目标讨论。虽然有研究探讨临终关怀服务登记方面的差异,还有其他研究总体上探讨对临终关怀机构的信任,但很少有研究明确考察信任在临终关怀服务登记差异中所起的作用。为了探究影响信任的因素以及这些因素如何导致临终关怀服务登记方面的差异。这是一项基于扎根理论的定性个人访谈研究。研究地点在美国罗德岛。研究对象为临终关怀护理的多个利益相关者,他们具有不同的专业和个人背景。作为对不同患者临终关怀服务登记障碍更广泛研究的一部分,对深入的半结构化个人访谈进行了录音和转录。由五名研究人员进行二次数据分析,重点关注信任这一核心研究现象。研究人员独立分析转录文本,然后召开反复的小组分析会议,直到就主题、子主题及关系达成共识。22名参与者包括五名医生、五名护士、三名社会工作者、两名牧师、一名护理助理、三名管理人员以及三名患者护理人员/家属。访谈表明,信任是多维度的,涉及个人层面和系统层面的信任,以及信任的来源和程度。影响信任的因素包括:恐惧;沟通/关系;对临终关怀的了解;宗教/精神信仰;语言;以及文化信仰/经历。虽然其中一些因素在各群体中都很常见,但有几个因素在少数族裔群体中更为普遍。这些因素似乎以复杂的方式相互作用,因个体患者/家庭而异,加剧了它们对信任的影响。虽然在所有群体中,在临终决策方面赢得患者/家属的信任都具有挑战性,但少数族裔患者往往还会遇到其他影响信任建立的复杂因素。需要开展更多研究来减轻这些相互作用的因素对信任产生的负面影响。