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Advancing a telehealth and cancer control research agenda at the US National Cancer Institute. 在美国国家癌症研究所推进远程保健和癌症控制研究议程。
Pub Date : 2024-06-26 DOI: 10.1093/jncimonographs/lgae016
Robin C Vanderpool, Abigail Muro, Roxanne E Jensen
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引用次数: 0
University of Pennsylvania Telehealth Research Center of Excellence. 宾夕法尼亚大学远程医疗卓越研究中心。
Pub Date : 2024-06-26 DOI: 10.1093/jncimonographs/lgae011
Jocelyn V Wainwright, Charu Aggarwal, Sarah Beucker, David W Dougherty, Peter E Gabriel, Linda A Jacobs, Jillian Kalman, Kristin A Linn, Anthony O Martella, Shivan J Mehta, Corinne M Rhodes, Megan Roy, Marilyn M Schapira, Lawrence N Shulman, Jennifer Steltz, Alisa J Stephens Shields, Andy S L Tan, Jeffrey C Thompson, Hannah Toneff, Richard C Wender, Sana Zeb, Katharine A Rendle, Anil Vachani, Justin E Bekelman

Drawing from insights from communication science and behavioral economics, the University of Pennsylvania Telehealth Research Center of Excellence (Penn TRACE) is designing and testing telehealth strategies with the potential to transform access to care, care quality, outcomes, health equity, and health-care efficiency across the cancer care continuum, with an emphasis on understanding mechanisms of action. Penn TRACE uses lung cancer care as an exemplar model for telehealth across the care continuum, from screening to treatment to survivorship. We bring together a diverse and interdisciplinary team of international experts and incorporate rapid-cycle approaches and mixed methods evaluation in all center projects. Our initiatives include a pragmatic sequential multiple assignment randomized trial to compare the effectiveness of telehealth strategies to increase shared decision-making for lung cancer screening and 2 pilot projects to test the effectiveness of telehealth to improve cancer care, identify multilevel mechanisms of action, and lay the foundation for future pragmatic trials. Penn TRACE aims to produce new fundamental knowledge and advance telehealth science in cancer care at Penn and nationally.

宾夕法尼亚大学远程医疗卓越研究中心(Penn TRACE)从传播学和行为经济学中汲取灵感,正在设计和测试远程医疗策略,这些策略有可能改变整个癌症治疗过程中的治疗机会、治疗质量、治疗效果、健康公平和医疗效率,重点是了解其作用机制。宾大 TRACE 将肺癌治疗作为远程医疗的典范,涵盖了从筛查到治疗再到生存的整个治疗过程。我们汇集了一支由国际专家组成的多元化跨学科团队,并在所有中心项目中采用快速循环方法和混合评估方法。我们的计划包括:一项实用性顺序多重分配随机试验,以比较远程医疗策略在肺癌筛查中增加共同决策的有效性;两个试点项目,以测试远程医疗在改善癌症护理、确定多层次作用机制方面的有效性,并为未来的实用性试验奠定基础。宾夕法尼亚大学 TRACE 项目旨在为宾夕法尼亚大学和全国的癌症治疗提供新的基础知识,推动远程医疗科学的发展。
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引用次数: 0
National Cancer Institute-funded grants focused on synchronous telehealth cancer care delivery: a portfolio analysis. 美国国家癌症研究所资助的侧重于同步远程医疗癌症护理服务的赠款:组合分析。
Pub Date : 2024-06-26 DOI: 10.1093/jncimonographs/lgae003
Roxanne E Jensen, Rachelle Brick, Joshua Medel, Priyanga Tuovinen, Paul B Jacobsen, Rebecca Hardesty, Robin C Vanderpool

Background: Telehealth use increased during the COVID-19 pandemic and remains a complementary source of cancer care delivery. Understanding research funding trends in cancer-related telehealth can highlight developments in this area of science and identify future opportunities.

Methods: Applications funded by the US National Cancer Institute (NCI) between fiscal years 2016 and 2022 and focused on synchronous patient-provider telehealth were analyzed for grant characteristics (eg, funding mechanism), cancer focus (eg, cancer type), and study features (eg, type of telehealth service). Of 106 grants identified initially, 60 were retained for coding after applying exclusion criteria.

Results: Almost three-quarters (73%) of telehealth grants were funded during fiscal years 2020-2022. Approximately 67% were funded through R01 or R37 mechanism and implemented as randomized controlled trials (63%). Overall, telehealth grants commonly focused on treatment (30%) and survivorship (43%); breast cancer (12%), hematologic malignancies (10%), and multiple cancer sites (27%); and health disparity populations (ie, minorities, rural residents) (73%). Both audio and video telehealth were common (65%), as well as accompanying mHealth apps (20%). Telehealth services centered on psychosocial care, self-management, and supportive care (88%); interventions were commonly delivered by mental health professionals (30%).

Conclusion: NCI has observed an increase in funded synchronous patient-provider telehealth grants. Trends indicate an evolution of awards that have expanded across the cancer control continuum, applied rigorous study designs, incorporated additional digital technologies, and focused on populations recognized for disparate cancer outcomes. As telehealth is integrated into routine cancer care delivery, additional research evidence will be needed to inform clinical practice.

背景:在 COVID-19 大流行期间,远程保健的使用有所增加,目前仍是癌症护理服务的补充来源。了解与癌症相关的远程医疗的研究资助趋势可以突出这一科学领域的发展并确定未来的机会:对美国国家癌症研究所(NCI)在 2016 财年至 2022 财年期间资助的、以患者-医护人员同步远程医疗为重点的申请进行了分析,分析内容包括资助特点(如资助机制)、癌症重点(如癌症类型)和研究特点(如远程医疗服务类型)。在最初确定的 106 项资助中,有 60 项在应用排除标准后被保留下来进行编码:结果:近四分之三(73%)的远程医疗基金是在 2020-2022 财年获得资助的。约 67% 通过 R01 或 R37 机制获得资助,并以随机对照试验的形式实施(63%)。总体而言,远程医疗拨款通常侧重于治疗(30%)和幸存者(43%);乳腺癌(12%)、血液恶性肿瘤(10%)和多部位癌症(27%);以及健康差异人群(即少数民族、农村居民)(73%)。音频和视频远程保健都很常见(65%),配套的移动医疗应用程序也很常见(20%)。远程保健服务以社会心理护理、自我管理和支持性护理为中心(88%);干预措施通常由心理健康专业人员提供(30%):NCI观察到受资助的患者-提供者同步远程医疗补助金有所增加。这一趋势表明,获奖项目的范围已扩展到癌症控制的各个环节,采用了严格的研究设计,融入了更多的数字技术,并将重点放在了被公认为癌症结果不同的人群上。随着远程保健被纳入常规癌症护理服务,需要更多的研究证据为临床实践提供依据。
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引用次数: 0
Cancer stigma: the need for policy and programmatic action. 癌症耻辱化:政策和计划行动的必要性。
Pub Date : 2024-06-05 DOI: 10.1093/jncimonographs/lgae014
Sonali Elizabeth Johnson, Mélanie Samson

Cancer is a stigmatized disease in many countries that impacts the quality of life and mental health of people affected by cancer. This commentary examines some dimensions of cancer stigma and has been developed based on insights from participants in a Union for International Cancer Control program dedicated to cancer patient organizations in low- and middle-income countries. Aimed at program managers and policy makers, this commentary highlights the importance of developing strategies to reduce cancer stigma in cancer control programs in different contexts, working closely with community-based civil society organizations and those with lived experience of cancer to understand, evaluate, and take action regarding the impact of cancer stigma on health-seeking behavior and patients' quality of life.

在许多国家,癌症是一种被污名化的疾病,影响着癌症患者的生活质量和心理健康。本评论探讨了癌症污名化的一些方面,是根据国际癌症控制联盟专门为中低收入国家癌症患者组织开展的一项计划的参与者提出的见解编写的。本评论针对项目管理人员和政策制定者,强调了在不同情况下制定战略以减少癌症控制项目中的癌症污名化的重要性,与社区民间社会组织和癌症患者密切合作,了解、评估癌症污名化对寻求健康行为和患者生活质量的影响,并采取相应行动。
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引用次数: 0
The global landscape of cancer stigma research and practice: perspectives, measures, interventions, and actions for change. 全球癌症耻辱化研究与实践:观点、措施、干预和变革行动。
Pub Date : 2024-06-05 DOI: 10.1093/jncimonographs/lgae009
Kathryn Heley, Vidya Vedham, Robin C Vanderpool
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引用次数: 0
A "What Matters Most" approach to investigating intersectional stigma toward HIV and cancer in Hanoi, Vietnam. 采用 "什么最重要 "的方法,调查越南河内对艾滋病和癌症的交叉污名。
Pub Date : 2024-06-05 DOI: 10.1093/jncimonographs/lgae002
Evan L Eschliman, Dung Hoang, Nasim Khoshnam, Vivian Ye, Haruka Kokaze, Yatong Ji, Yining Zhong, Aditi Morumganti, Wenyu Xi, Sijia Huang, Karen Choe, Ohemaa B Poku, Gloria Alvarez, Trang Nguyen, Nam Truong Nguyen, Donna Shelley, Lawrence H Yang

Background: Vietnam is experiencing a growing burden of cancer, including among people living with HIV. Stigma acts as a sociocultural barrier to the prevention and treatment of both conditions. This study investigates how cultural notions of "respected personhood" (or "what matters most") influence manifestations of HIV-related stigma and cancer stigma in Hanoi, Vietnam.

Methods: Thirty in-depth interviews were conducted with people living with HIV in Hanoi, Vietnam. Transcripts were thematically coded via a directed content analysis using the What Matters Most conceptual framework. Coding was done individually and discussed in pairs, and any discrepancies were reconciled in full-team meetings.

Results: Analyses elucidated that having chữ tín-a value reflecting social involvement, conscientiousness, and trustworthiness-and being successful (eg, in career, academics, or one's personal life) are characteristics of respected people in this local cultural context. Living with HIV and having cancer were seen as stigmatized and interfering with these values and capabilities. Intersectional stigma toward having both conditions was seen to interplay with these values in some ways that had distinctions compared with stigma toward either condition alone. Participants also articulated how cultural values like chữ tín are broadly protective against stigmatization and how getting treatment and maintaining employment can help individuals resist stigmatization's most acute impacts.

Conclusions: HIV-related and cancer stigma each interfere with important cultural values and capabilities in Vietnam. Understanding these cultural manifestations of these stigmas separately and intersectionally can allow for greater ability to measure and respond to these stigmas through culturally tailored intervention.

背景:越南的癌症负担日益加重,其中包括艾滋病毒感染者。污名化是预防和治疗这两种疾病的社会文化障碍。本研究调查了在越南河内,"受尊重的人格"(或 "最重要的东西")的文化观念如何影响艾滋病相关污名化和癌症污名化的表现形式:对越南河内的艾滋病病毒感染者进行了 30 次深入访谈。采用 "什么最重要 "概念框架,通过定向内容分析对访谈记录进行主题编码。编码工作由个人完成,然后两人一组进行讨论,如有任何差异,则在全组会议上进行协调:分析结果表明,在当地文化背景下,拥有 "chítín"--一种反映社会参与、认真负责和值得信赖的价值观--以及成功(如在事业、学术或个人生活方面)是受人尊敬的人的特征。艾滋病病毒感染者和癌症患者被认为是被污名化的,会影响这些价值观和能力。人们认为,对患有这两种疾病的交叉性污名化与这些价值观在某些方面相互影响,与单独对其中一种疾病的污名化有所不同。参与者还阐明了文化价值观(如 "中国")如何在很大程度上保护人们免受鄙视,以及接受治疗和保持就业如何帮助个人抵御鄙视带来的最严重影响:结论:在越南,与艾滋病相关的鄙视和癌症鄙视都会干扰重要的文化价值观和能力。单独和交叉地了解这些鄙视的文化表现形式,可以提高通过文化定制干预来衡量和应对这些鄙视的能力。
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引用次数: 0
Examining evidence of lung cancer stigma among health-care trainees. 研究医护受训人员对肺癌的污名化证据。
Pub Date : 2024-06-05 DOI: 10.1093/jncimonographs/lgae010
Jamie L Studts, Catherine M Deffendall, Shelby L McCubbin, Heidi A Hamann, Kaitlyn Hoover, Whitney M Brymwitt, Timothy J Williamson

Background: Innovations in lung cancer control and care have started to transform the landscape of lung cancer outcomes, but lung cancer stigma and biases have been implicated as a deterrent to realizing the promise of these innovations. Research has documented lung cancer stigma among the general public and lung cancer survivors (self-blame), as well as clinicians across many disciplines. However, studies have not explored lung cancer stigma in health-care trainees. These data seek to address that gap and inform efforts to prevent the emergence or mitigate the presence of lung cancer stigma among future clinicians.

Methods: Using clinical vignettes and a 2x2 factorial design, this investigation evaluated the impact of a history of smoking (yes vs no) and cancer diagnosis (lung vs colorectal) on perceptions of the described patient among 2 groups of preclinical health-care trainees (medical = 94 and nursing = 138). A charitable giving paradigm also asked participants to donate provided funds to 1 of 2 cancer advocacy organizations: one serving the lung cancer community and one serving the colorectal cancer community.

Results: In study 1, results revealed a consistent pattern of statistically significant and medium to large effect size differences regarding stigmatized perceptions (eg, higher stigmatizing behavior, increased pity, greater anger, and less helping) for individuals with a history of smoking but no reliable differences regarding cancer diagnosis. Analysis of data from nursing trainees in study 2 showed a similar pattern of statistically significant and medium to large effects pertaining to stigma behavior and perceptions of individuals who had a history of smoking depicted in the vignettes. The charitable giving paradigm did not identify any reliable difference between the groups in either study.

Conclusions: Findings revealed a consistent pattern of health-care trainee perceptions that varied by smoking status but much less evidence that the cancer diagnosis contributed to different perceptions. This suggests that efforts to integrate consideration of stigma and biases in health-care training needs to adopt an approach that seeks to mitigate or eliminate stigmatizing perceptions and behaviors toward individuals with a history of smoking.

背景:肺癌控制和护理方面的创新已开始改变肺癌的治疗效果,但肺癌耻辱感和偏见已被认为是阻碍实现这些创新承诺的因素。研究记录了公众和肺癌幸存者(自责)以及许多学科的临床医生对肺癌的成见。然而,还没有研究探讨过医护受训人员的肺癌耻辱感。这些数据旨在填补这一空白,并为防止未来临床医生出现或减轻肺癌蔑视提供信息:本调查采用临床小故事和 2x2 因式设计,评估了吸烟史(有与无)和癌症诊断(肺癌与结直肠癌)对两组临床前医护受训人员(医护 = 94 人和护理 = 138 人)对所描述病人的看法的影响。慈善捐赠范式还要求参与者将提供的资金捐赠给两个癌症宣传机构中的一个:一个为肺癌群体服务,另一个为结直肠癌群体服务:在研究 1 中,结果显示有吸烟史的人在鄙视感(如更高的鄙视行为、更多的怜悯、更大的愤怒和更少的帮助)方面存在一致的具有统计学意义的大中型效应大小差异,但在癌症诊断方面没有可靠的差异。对研究 2 中护理受训者数据的分析表明,与小故事中描述的有吸烟史的人的鄙视行为和看法有关的统计显著性和中至大效应的模式类似。在这两项研究中,慈善捐赠范式均未发现组间存在任何可靠的差异:研究结果显示,医护受训人员的认知模式因吸烟状况而异,但癌症诊断导致不同认知的证据却少得多。这表明,要在医护培训中考虑污名化和偏见问题,就必须采取一种方法来减轻或消除对有吸烟史的人的污名化观念和行为。
{"title":"Examining evidence of lung cancer stigma among health-care trainees.","authors":"Jamie L Studts, Catherine M Deffendall, Shelby L McCubbin, Heidi A Hamann, Kaitlyn Hoover, Whitney M Brymwitt, Timothy J Williamson","doi":"10.1093/jncimonographs/lgae010","DOIUrl":"10.1093/jncimonographs/lgae010","url":null,"abstract":"<p><strong>Background: </strong>Innovations in lung cancer control and care have started to transform the landscape of lung cancer outcomes, but lung cancer stigma and biases have been implicated as a deterrent to realizing the promise of these innovations. Research has documented lung cancer stigma among the general public and lung cancer survivors (self-blame), as well as clinicians across many disciplines. However, studies have not explored lung cancer stigma in health-care trainees. These data seek to address that gap and inform efforts to prevent the emergence or mitigate the presence of lung cancer stigma among future clinicians.</p><p><strong>Methods: </strong>Using clinical vignettes and a 2x2 factorial design, this investigation evaluated the impact of a history of smoking (yes vs no) and cancer diagnosis (lung vs colorectal) on perceptions of the described patient among 2 groups of preclinical health-care trainees (medical = 94 and nursing = 138). A charitable giving paradigm also asked participants to donate provided funds to 1 of 2 cancer advocacy organizations: one serving the lung cancer community and one serving the colorectal cancer community.</p><p><strong>Results: </strong>In study 1, results revealed a consistent pattern of statistically significant and medium to large effect size differences regarding stigmatized perceptions (eg, higher stigmatizing behavior, increased pity, greater anger, and less helping) for individuals with a history of smoking but no reliable differences regarding cancer diagnosis. Analysis of data from nursing trainees in study 2 showed a similar pattern of statistically significant and medium to large effects pertaining to stigma behavior and perceptions of individuals who had a history of smoking depicted in the vignettes. The charitable giving paradigm did not identify any reliable difference between the groups in either study.</p><p><strong>Conclusions: </strong>Findings revealed a consistent pattern of health-care trainee perceptions that varied by smoking status but much less evidence that the cancer diagnosis contributed to different perceptions. This suggests that efforts to integrate consideration of stigma and biases in health-care training needs to adopt an approach that seeks to mitigate or eliminate stigmatizing perceptions and behaviors toward individuals with a history of smoking.</p>","PeriodicalId":73988,"journal":{"name":"Journal of the National Cancer Institute. Monographs","volume":"2024 63","pages":"20-29"},"PeriodicalIF":0.0,"publicationDate":"2024-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11151328/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141249149","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Global cancer stigma research: a U.S. National Cancer Institute workshop report. 全球癌症耻辱化研究:美国国家癌症研究所研讨会报告。
Pub Date : 2024-06-05 DOI: 10.1093/jncimonographs/lgad038
Kathryn Heley, Robin C Vanderpool, Vidya Vedham

Stigma is a social process characterized by negative beliefs, attitudes, and stereotypes associated with a specific attribute or characteristic that leads to discrimination and social exclusion. Stigma manifests across the cancer control continuum and remains a key challenge for cancer prevention and control worldwide. In this commentary, we provide an overview of the U.S. National Cancer Institute's (NCI) Global Cancer Stigma Research Workshop, a multi-disciplinary international conference held virtually in September 2022, which focused on the intersection of cancer and stigma. The meeting was unique in its convening of researchers, advocates, clinicians, and non-governmental and governmental organizations, who-as a collective-provided overarching topics, cross-cutting considerations, and future directions for the cancer stigma research community to consider, which we describe herein. In summary, studying cancer stigma comprehensively requires a holistic, adaptive, and multifaceted approach-and should consider interrelated factors and their intersection within diverse cultural and social contexts worldwide. Collectively, there was a call for: an inclusive approach, encouraging researchers and practitioners to identify and measure cancer stigma as a driver for cancer health inequities globally; an expansion of existing research methodology to include diversity of experiences, contexts, and perspectives; and collaborations among diverse stakeholders to develop more effective strategies for reducing stigma and improving cancer outcomes. Such efforts are essential to cultivating effective and equitable approaches to preventing and treating cancer worldwide.

成见是一种社会过程,其特点是与特定属性或特征相关的负面信念、态度和成见,从而导致歧视和社会排斥。成见表现在癌症控制的各个环节,仍然是全球癌症预防和控制面临的主要挑战。在这篇评论中,我们概述了美国国家癌症研究所(NCI)全球癌症成见研究研讨会的情况,这是一个多学科国际会议,于 2022 年 9 月以虚拟方式举行,重点讨论癌症与成见的交叉问题。这次会议的独特之处在于它召集了研究人员、倡导者、临床医生、非政府组织和政府组织,他们作为一个集体,为癌症耻辱化研究界提供了首要议题、跨领域考虑因素和未来考虑方向,我们将在本文中加以介绍。总之,全面研究癌症污名化需要一种整体的、适应性的和多方面的方法,并应考虑相互关联的因素及其在全球不同文化和社会背景下的交集。总之,人们呼吁:采取一种包容性的方法,鼓励研究人员和从业人员将癌症耻辱感作为全球癌症健康不平等的驱动因素加以识别和衡量;扩展现有的研究方法,将经验、背景和观点的多样性纳入其中;不同利益相关者之间开展合作,以制定更有效的策略来减少耻辱感并改善癌症治疗效果。这些努力对于在全球范围内培养有效、公平的癌症预防和治疗方法至关重要。
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引用次数: 0
Feasibility, acceptability, and initial efficacy of empathic communication skills training to reduce lung cancer stigma in Nigeria: a pilot study. 在尼日利亚开展移情沟通技能培训以减少肺癌耻辱感的可行性、可接受性和初步效果:一项试点研究。
Pub Date : 2024-06-05 DOI: 10.1093/jncimonographs/lgae006
Smita C Banerjee, Chioma Asuzu, Boladale Mapayi, Blessing Olunloyo, Emeka Odiaka, Oluwafemi B Daramola, Jaime Gilliland, Israel Adeyemi Owoade, Peter Kingham, Olusegun I Alatise, Grace Fitzgerald, Rivka Kahn, Cristina Olcese, Jamie S Ostroff

Effective communication about cancer diagnosis and prognosis in sub-Saharan African oncology settings is often challenged by the cancer-related shame and stigma patients and families experience. Enhancing empathic communication between health care providers, including physicians and nurses, and oncology patients and their families can not only reduce cancer stigma but also improve patient engagement, treatment satisfaction, and quality of life. To reduce lung cancer stigma, we adapted an evidence-based empathic communication skills training intervention to reduce patients' experience of stigma in Nigeria and conducted a pilot study examining the feasibility and acceptability of the empathic communication skills training. Thirty health care providers, recruited from University College Hospital, Ibadan, and Obafemi Awolowo University Teaching Hospitals Complex, Ile-Ife, participated in a 2.25-hour didactic and experiential training session. Participant surveys were completed before and after the training. Overall, participants reported highly favorable training evaluations, with at least 85% of health care providers agreeing or strongly agreeing to survey items assessing training relevance, novelty, clarity, and facilitator effectiveness. Self-efficacy to communicate empathically with patients increased significantly from before-training (Mean [SD] = 3.93 [0.28]) to after-training (Mean [SD] = 4.55 [0.15]; t29 = 3.51, P < .05). Significant improvements were observed in health care provider reports of empathy toward lung cancer survivors and attitude toward lung cancer care as well as significant reductions in lung cancer blame were noted. The empathic communication skills training was feasible, well received by oncology clinicians in Nigeria, and demonstrated improvements in health care provider-reported outcomes from before- to after-training.

在撒哈拉以南非洲地区的肿瘤治疗环境中,有关癌症诊断和预后的有效沟通常常受到患者和家属与癌症相关的羞耻感和耻辱感的挑战。加强医疗服务提供者(包括医生和护士)与肿瘤患者及其家属之间的移情沟通不仅能减少癌症耻辱感,还能提高患者的参与度、治疗满意度和生活质量。为了减少对肺癌的成见,我们改编了一项基于证据的移情沟通技能培训干预措施,以减少尼日利亚患者的成见体验,并开展了一项试点研究,考察移情沟通技能培训的可行性和可接受性。从伊巴丹大学学院医院和伊费岛奥巴费米-阿沃洛沃大学教学医院综合大楼招募的 30 名医护人员参加了 2.25 小时的授课和体验式培训。培训前后完成了学员调查。总体而言,参与者对培训的评价非常好,至少有 85% 的医疗服务提供者同意或非常同意评估培训相关性、新颖性、清晰度和主持人有效性的调查项目。从培训前(平均[标准差] = 3.93 [0.28])到培训后(平均[标准差] = 4.55 [0.15];t29 = 3.51,P.
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引用次数: 0
Impact of a multicomponent navigation strategy on stigma among people living with HIV and Kaposi's sarcoma in Kenya: a qualitative analysis. 肯尼亚艾滋病毒感染者和卡波西肉瘤患者对多成分导航战略的污名化影响:定性分析。
Pub Date : 2024-06-05 DOI: 10.1093/jncimonographs/lgae017
Sigrid M Collier, Aggrey Semeere, Linda Chemtai, Helen Byakwaga, Celestine Lagat, Miriam Laker-Oketta, Juliet Bramante, Ann Pacheco, Morvarid Zehtab, Alexis G Strahan, Merridy Grant, Laura M Bogart, Ingrid V Bassett, Naftali Busakhala, Jesse Opakas, Toby Maurer, Jeffrey Martin, Samson Kiprono, Esther E Freeman

Persons with HIV-associated Kaposi's sarcoma (KS) experience three co-existing stigmatizing health conditions: skin disease, HIV, and cancer, which contribute to a complex experience of stigmatization and to delays in diagnosis and treatment. Despite the importance of stigma among these patients, there are few proven stigma-reduction strategies for HIV-associated malignancies. Using qualitative methods, we explore how people with HIV-associated KS in western Kenya between August 2022 and 2023 describe changes in their stigma experience after participation in a multicomponent navigation strategy, which included 1) physical navigation and care coordination, 2) video-based education with motivational survivor stories, 3) travel stipend, 4) health insurance enrollment assistance, 5) health insurance stipend, and 6) peer mentorship. A purposive sample of persons at different stages of chemotherapy treatment were invited to participate. Participants described how a multicomponent navigation strategy contributed to increased knowledge and awareness, a sense of belonging, hope to survive, encouragement, and social support, which served as stigma mitigators, likely counteracting the major drivers of intersectional stigma in HIV-associated KS.

与艾滋病病毒相关的卡波西肉瘤(KS)患者同时患有皮肤病、艾滋病病毒(HIV)和癌症这三种令人鄙视的健康问题,这导致了复杂的鄙视体验,并延误了诊断和治疗。尽管污名化在这些患者中非常重要,但很少有针对艾滋病相关恶性肿瘤的行之有效的减少污名化策略。我们采用定性方法,探讨了 2022 年 8 月至 2023 年期间肯尼亚西部的艾滋病相关 KS 患者如何描述他们在参与多成分导航策略(包括 1) 物理导航和护理协调、2) 基于幸存者励志故事的视频教育、3) 旅行津贴、4) 医疗保险注册援助、5) 医疗保险津贴和 6) 同伴指导)后在污名化体验方面的变化。我们邀请了处于不同化疗阶段的患者进行有目的的抽样调查。参与者描述了多成分导航策略如何有助于提高知识和意识、归属感、生存希望、鼓励和社会支持,这些都是减轻污名化的因素,很可能抵消了艾滋病毒相关 KS 中交叉污名化的主要驱动因素。
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引用次数: 0
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