Warren Alpert Medical School of Brown University, Providence, RI, USA.
Hope Hospice and Palliative Care Rhode Island, Providence, RI, USA.
Am J Hosp Palliat Care. 2024 May;41(5):508-515. doi: 10.1177/10499091231188693. Epub 2023 Jul 5.
Hospice services are underutilized by the Latino community in the United States. Previous research has identified that language is a key barrier contributing to disparities. However, very few studies have been conducted in Spanish to specifically explore other barriers to hospice enrollment or values related to end-of-life (EOL) care in this community. Here, we remove the language barrier in order to gain an in-depth understanding of what members of the diverse Latino community in one state in the USA considers high quality EOL and barriers to hospice. This exploratory semi-structured individual interview study of Latino community members was conducted in Spanish. Interviews were audio-recorded, transcribed verbatim and translated to English. Transcripts were analyzed by three researchers, using a grounded-theory approach to identify themes and sub-themes. Six major themes emerged: (1) concept of "a good death"-spiritual peace, family/community connection, no burdens left behind; (2) centrality of family; (3) lack of knowledge about hospice/palliative care; (4) Spanish language as critical; (5) communication style differences; and (6) necessity for cultural understanding. The central theme of "a good death" was closely linked to having the entire family physically and emotionally present. The four other themes represent interrelated, compounding barriers to achieving this "good death." Healthcare providers and the Latino community can work together to decrease hospice utilization disparities by: actively involving family at every step; addressing misconceptions regarding hospice; conducting important conversations in Spanish; and improving provider skills in culturally sensitive care, including communication style.
美国拉丁裔群体对临终关怀服务的利用率较低。先前的研究已经确定,语言是导致差异的一个关键障碍。然而,在西班牙语中,很少有研究专门探讨拉丁裔群体在临终关怀方面的其他障碍或相关价值观。在这里,我们消除了语言障碍,以便深入了解美国一个州的拉丁裔群体成员认为的高质量临终关怀以及临终关怀的障碍是什么。 这项针对拉丁裔社区成员的探索性半结构式个人访谈研究是用西班牙语进行的。访谈进行了录音、逐字记录并翻译成英文。三位研究人员使用扎根理论方法对转录本进行了分析,以确定主题和子主题。 出现了六个主要主题:(1)“善终”的概念-精神上的平静、家庭/社区的联系、没有留下的负担;(2)家庭的中心地位;(3)缺乏对临终关怀/姑息治疗的了解;(4)西班牙语至关重要;(5)沟通方式的差异;(6)文化理解的必要性。“善终”的核心主题与让整个家庭在身体和情感上都在场密切相关。其他四个主题代表了实现这一“善终”的相互关联的、复杂的障碍。 医疗保健提供者和拉丁裔社区可以共同努力,通过以下方式减少临终关怀服务的利用率差距:在每一步都积极让家庭参与;解决有关临终关怀的误解;用西班牙语进行重要的对话;并提高提供者在文化敏感护理方面的技能,包括沟通方式。