Fulvio Bergamo Trevizan, Carlos Eduardo Paiva, Laura Fiacadori de Almeida, Camila Zimmermann, Eduardo Bruera, Bianca Sakamoto Ribeiro Paiva
{"title":"Exploring patient awareness of palliative care - optimal timing and preferred approaches.","authors":"Fulvio Bergamo Trevizan, Carlos Eduardo Paiva, Laura Fiacadori de Almeida, Camila Zimmermann, Eduardo Bruera, Bianca Sakamoto Ribeiro Paiva","doi":"10.1017/S1478951524001081","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>To explore patients' awareness levels of palliative care (PC) and how this awareness shapes their preferences regarding the timing and approach for discussing it.</p><p><strong>Methods: </strong>The study, conducted at a prominent institution specializing in oncology care, enrolled women aged 18-75 years who had been diagnosed with breast cancer. Patients completed guiding questions: Do you know what PC is?, When is the most appropriate time and the most appropriate way to discuss PC?. The interviews were conducted exclusively via video call and were recorded, transcribed, and then deleted.</p><p><strong>Results: </strong>The study involved 61 participants, averaging 49 years old. Almost half (47.5%) had completed high school. Qualitative data analysis revealed 9 thematic categories. Regarding the first question, 2 divergent categories emerged: care for life and threatening treatment. For the second question, opinions diverged into 4 categories: At an early stage, mid-course of the disease, as late as possible, and no time at all. For the third question, 3 categories emerged: communication and support, care setting and environment, and improving the PC experience.</p><p><strong>Significance of results: </strong>This study reveals diverse perspectives on patients' awareness and preferences for discussing PC, challenging the misconception that it's only for end-of-life (EOL) situations. Comprehending PC influences when and how patients discuss it. If tied solely to EOL scenarios, discussions may be delayed. Conversely, understanding its role in enhancing advance support encourages earlier conversations. Limited awareness might delay talks, while informed patients actively contribute to shared decision-making. Some patients prefered early involvement, others find mid-treatment discussions stress-relieving. Community support, quiet environments, and accessible resources, underscoring the importance of a calm, empathetic approach, emphasizing the importance of understanding its role in advance support and providing valuable implications for enhancing patient care practices, theories, and policies.</p>","PeriodicalId":1,"journal":{"name":"Accounts of Chemical Research","volume":null,"pages":null},"PeriodicalIF":16.4000,"publicationDate":"2024-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Accounts of Chemical Research","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1017/S1478951524001081","RegionNum":1,"RegionCategory":"化学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"CHEMISTRY, MULTIDISCIPLINARY","Score":null,"Total":0}
引用次数: 0
Abstract
Objectives: To explore patients' awareness levels of palliative care (PC) and how this awareness shapes their preferences regarding the timing and approach for discussing it.
Methods: The study, conducted at a prominent institution specializing in oncology care, enrolled women aged 18-75 years who had been diagnosed with breast cancer. Patients completed guiding questions: Do you know what PC is?, When is the most appropriate time and the most appropriate way to discuss PC?. The interviews were conducted exclusively via video call and were recorded, transcribed, and then deleted.
Results: The study involved 61 participants, averaging 49 years old. Almost half (47.5%) had completed high school. Qualitative data analysis revealed 9 thematic categories. Regarding the first question, 2 divergent categories emerged: care for life and threatening treatment. For the second question, opinions diverged into 4 categories: At an early stage, mid-course of the disease, as late as possible, and no time at all. For the third question, 3 categories emerged: communication and support, care setting and environment, and improving the PC experience.
Significance of results: This study reveals diverse perspectives on patients' awareness and preferences for discussing PC, challenging the misconception that it's only for end-of-life (EOL) situations. Comprehending PC influences when and how patients discuss it. If tied solely to EOL scenarios, discussions may be delayed. Conversely, understanding its role in enhancing advance support encourages earlier conversations. Limited awareness might delay talks, while informed patients actively contribute to shared decision-making. Some patients prefered early involvement, others find mid-treatment discussions stress-relieving. Community support, quiet environments, and accessible resources, underscoring the importance of a calm, empathetic approach, emphasizing the importance of understanding its role in advance support and providing valuable implications for enhancing patient care practices, theories, and policies.
目的探讨患者对姑息关怀(PC)的认识水平,以及这种认识如何影响她们对讨论姑息关怀的时机和方法的偏好:这项研究在一家著名的肿瘤专科医院进行,研究对象是年龄在 18-75 岁之间、被诊断患有乳腺癌的女性。患者填写了指导性问题:您知道什么是 PC 吗?访谈完全通过视频通话进行,并进行录音、转录和删除:研究涉及 61 名参与者,平均年龄 49 岁。近一半(47.5%)的参与者完成了高中学业。定性数据分析揭示了 9 个主题类别。关于第一个问题,出现了两个不同的类别:关爱生命和威胁性治疗。对于第二个问题,意见分为 4 类:早期、病程中期、尽可能晚、完全没有时间。对于第三个问题,出现了 3 个类别:沟通和支持、护理环境和环境以及改善 PC 体验:本研究揭示了患者对讨论 PC 的认识和偏好的不同观点,挑战了 "PC 只适用于生命末期(EOL)"的误解。对 PC 的理解会影响患者讨论 PC 的时间和方式。如果仅局限于临终前的情况,讨论可能会被推迟。相反,了解 PC 在加强预先支持方面的作用则会鼓励患者更早地进行讨论。有限的认知可能会延迟讨论,而知情的患者则会积极促进共同决策。一些患者倾向于早期参与,而另一些患者则认为治疗中期的讨论可以缓解压力。社区支持、安静的环境和可获得的资源,强调了冷静、移情方法的重要性,强调了了解其在预先支持中的作用的重要性,并为加强患者护理实践、理论和政策提供了有价值的启示。
期刊介绍:
Accounts of Chemical Research presents short, concise and critical articles offering easy-to-read overviews of basic research and applications in all areas of chemistry and biochemistry. These short reviews focus on research from the author’s own laboratory and are designed to teach the reader about a research project. In addition, Accounts of Chemical Research publishes commentaries that give an informed opinion on a current research problem. Special Issues online are devoted to a single topic of unusual activity and significance.
Accounts of Chemical Research replaces the traditional article abstract with an article "Conspectus." These entries synopsize the research affording the reader a closer look at the content and significance of an article. Through this provision of a more detailed description of the article contents, the Conspectus enhances the article's discoverability by search engines and the exposure for the research.