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‘Dazed and Confused!’ Context and Social Disconnect in the Time of Pandemic “晕头转向!”大流行时期的背景和社会脱节
IF 0.8 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-11-29 DOI: 10.1017/BrImp.2021.23
O. Piguet
Abstract Humans are social animals. Our sense of identity and ‘self’ is defined in part by the roles we perform in the social groups to which we belong. This article discusses some of the variables that contribute to our sense of self, including language, place of origin, education and shared social norms. It also outlines some of the general mechanisms that underpin our various social networks. In its final part, this article reviews the impact of social isolation, such as that happened during the COVID pandemic, on these social mechanisms and the resulted disruption of psychological wellbeing in individuals diagnosed with dementia.
人类是群居动物。我们的身份和“自我”感在某种程度上是由我们在所属的社会群体中所扮演的角色来定义的。这篇文章讨论了一些影响我们自我意识的变量,包括语言、出生地、教育和共同的社会规范。它还概述了支撑我们各种社交网络的一些一般机制。在文章的最后一部分,本文回顾了社会隔离对这些社会机制的影响,例如在COVID大流行期间发生的社会隔离,以及由此导致的痴呆症患者心理健康的破坏。
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引用次数: 0
The Lived Experience of Interdependence: Support Worker Relationships and Implications for Wider Rehabilitation 相互依赖的生活经验:支持工作者关系及其对更广泛康复的影响
IF 0.8 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-11-15 DOI: 10.1017/BrImp.2021.24
J. Bourke
Abstract Engaging in a meaningful life where one can exercise autonomy has been proposed as a key aim of rehabilitation. Influenced by a neoliberal worldview, this has traditionally been characterised by a pursuit towards individual functional independence in which one completes tasks and activities unassisted. However for many persons, individual functional independence may not be a realistic, prioritised or beneficial goal. Many individuals must learn to work with support workers to exercise choice and control. Such relationships extend beyond a transactional nature and involve many subtle characteristics. In this article, I draw on my lived experience of partnering with support workers to illustrate the complexity of such relationships and how they can enable interdependence to serve as a vehicle to self-determination. I finish with some ideas about what rehabilitation can do to recognise the important role human connections play in facilitating interdependence. Understanding the nature of these relationships is necessary to provide services which value interdependence, supporting people to pursue a meaningful life following impairment.
从事有意义的生活,一个人可以行使自主权已被提出作为康复的关键目标。受新自由主义世界观的影响,这在传统上以追求个人功能独立性为特征,在这种独立性中,一个人在没有帮助的情况下完成任务和活动。然而,对许多人来说,个人功能独立可能不是一个现实的、优先考虑的或有益的目标。许多个人必须学会与支持工作者一起工作,以行使选择和控制。这种关系超越了交易性质,涉及许多微妙的特征。在这篇文章中,我利用我与支持工作者合作的生活经验来说明这种关系的复杂性,以及它们如何使相互依赖成为自决的工具。最后,我提出了一些关于康复可以做些什么的想法,以认识到人际关系在促进相互依赖方面所起的重要作用。了解这些关系的本质对于提供重视相互依赖的服务,支持人们在受损后追求有意义的生活是必要的。
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引用次数: 1
You Only Get One Brain: Adult Reflections on the Long-Term Impacts of Traumatic Brain Injury in Adolescence 你只有一个大脑:成人对青少年创伤性脑损伤长期影响的思考
IF 0.8 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-11-02 DOI: 10.1017/BrImp.2021.22
T. Mulligan, S. Barker-Collo, K. Gibson, Kelly M Jones
Abstract Background: This research adds to scarce literature regarding adolescent experiences of traumatic brain injury (TBI). Retrospective accounts of young adults who had sustained a TBI in adolescence were analysed to explore the perceived impact this had on their lives and forming identities during this important developmental stage. Methods: Thirteen adults (aged 20–25 years; mean 23 years) who sustained a mild or moderate TBI during adolescence (i.e. aged 13–17 years at injury), approximately 7.7 years (range = 6.7–8.0 years) prior, participated in the research. Semi-structured individual interviews, analysed using thematic analysis, explored participants’ experiences following their TBIs. Results: Thematic analysis of interview data produced two categories of themes: (1) Impacts on Important Areas of Life, which included: schoolwork suffered, career opportunities became limited, struggling with work and missing out socially; and (2) Impacts on Identity: with themes including feeling ‘stupid’, feeling self-conscious, loss of social identity and being dependent. Conclusions: TBI sustained during adolescence can have broad impacts on important areas of life and on developing identity.
背景:本研究补充了关于青少年创伤性脑损伤(TBI)经历的稀缺文献。回顾性分析了在青春期经历过脑外伤的年轻人,以探索在这个重要的发展阶段,这对他们的生活和形成身份的感知影响。方法:成人13例,年龄20 ~ 25岁;平均23岁),在大约7.7年(范围= 6.7-8.0年)之前的青春期(即受伤时为13-17岁)遭受轻度或中度TBI的患者参加了研究。半结构化的个人访谈,使用主题分析,探讨了参与者在tbi后的经历。结果:访谈数据的主题分析产生了两类主题:(1)对生活重要领域的影响,包括:学业受到影响,职业机会受到限制,工作困难,社交缺失;(2)对身份的影响:主题包括感觉“愚蠢”、感觉自我意识、失去社会身份和依赖。结论:青春期持续的脑外伤会对生活的重要领域和身份的发展产生广泛的影响。
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引用次数: 0
Pictures and a thousand words: the experiences of significant others whose loved ones have a severe brain injury who are being discharged home 图片和千言万语:亲人遭受严重脑损伤,即将出院回家的重要的人的经历
IF 0.8 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-10-11 DOI: 10.1017/BrImp.2021.19
Martin Checklin, Delwyne Stephens
Abstract Purpose: To investigate the experiences of significant others when their loved one with a severe acquired brain injury (ABI) is being discharged from an ABI-specific rehabilitation unit. Participants: Significant others of loved ones with an ABI participated in interviews close to their loved ones being discharged from inpatient ABI rehabilitation. Methods: Semi-structured interviews were conducted, and thematic analysis applied. Additionally, the drawing method was also used which involved participants drawing what it was like for them as their loved one was going home. Image analysis was then combined with the interview data. Results: Eight significant others participated in interviews on discharge and completed a drawing describing their experience. Five themes were identified (Change, Mixed feelings, Support of family and friends, Journey and Staff interactions). Conclusion: The experience of having a loved one with a severe ABI in rehabilitation is an emotional event. Compassionate communication, consistency of information and thorough discharge planning practices were cornerstones to enhancing the experience of significant others, empowering them to undertake their new role.
摘要目的:探讨重度获得性脑损伤(ABI)患者从ABI康复中心出院时重要他人的经历。参与者:患有ABI的亲人的重要他人参与访谈,接近他们的亲人从住院ABI康复出院。方法:采用半结构化访谈法,采用主题分析法。此外,还使用了绘画方法,让参与者画出他们所爱的人回家时的样子。然后将图像分析与访谈数据相结合。结果:8名重要他人在出院时参加了访谈,并完成了描述他们经历的绘图。确定了五个主题(变化、复杂的感受、家人和朋友的支持、旅程和员工互动)。结论:亲人患有严重ABI的康复过程是一种情感事件。富有同情心的沟通,信息的一致性和彻底的出院计划实践是增强重要他人经验的基石,使他们能够承担新的角色。
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引用次数: 0
Humanising brain injury rehabilitation: a qualitative study examining humanising approaches to engagement in the context of a storytelling advocacy programme 人性化脑损伤康复:一项定性研究,在讲故事宣传方案的背景下检查人性化参与方法
IF 0.8 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-10-08 DOI: 10.1017/BrImp.2021.16
Kate D’Cruz, J. Douglas, T. Serry
Abstract Objectives: Building upon the findings of an earlier study that explored the experience and impact of narrative storytelling following acquired brain injury (ABI), this study sought to examine the engagement of storytelling facilitators with storytellers. Methods: Transcripts of in-depth interviews conducted with six storytelling facilitators were analysed drawing upon content analysis. The analysis included a process of mapping previously analysed data (D’Cruz et al., 2020b) to a humanising values framework (Galvin & Todres, 2013; Todres et al., 2009). Results: The findings of this study provide insights into how facilitators engaged in humanising practice within the context of a storytelling advocacy programme. The facilitator participants ranged in years of facilitation experience from 1 to 11 years, with a mix of professional backgrounds, including health care (3), journalism (1) and community development (2). Analysed facilitator data mapped to each of the eight dimensions of the framework (insiderness, agency, uniqueness, togetherness, sense-making, personal journey, sense of place and embodiment), with a breadth of codes represented in each dimension, revealing the depth of humanisation. Conclusions: This study extends our understanding of approaches to engagement with adults living with ABI, demonstrating the humanising potential of storytelling. Furthermore, the findings help us to think about what it means to be human, guiding us to find ways to better partner with and support adults living with brain injury.
摘要目的:在早期研究的基础上,本研究探讨了获得性脑损伤(ABI)后叙述性讲故事的经历和影响,旨在研究讲故事促进者与讲故事者的互动。方法:采用内容分析法对6位讲故事引导者的深度访谈笔录进行分析。该分析包括将先前分析的数据(D 'Cruz等人,2020b)映射到人性化价值观框架(Galvin & Todres, 2013;Todres et al., 2009)。结果:本研究的发现提供了关于辅导员如何在讲故事倡导计划的背景下从事人性化实践的见解。促进者参与者的促进经验从1年到11年不等,他们的专业背景各异,包括卫生保健(3)、新闻(1)和社区发展(2)。分析了促进者数据,将其映射到框架的八个维度(内在性、能动性、独特性、团结性、意义构建、个人旅程、地方感和化身)中的每一个维度,每个维度都代表了广泛的代码,揭示了人性化的深度。结论:这项研究扩展了我们对与ABI患者接触的方法的理解,展示了讲故事的人性化潜力。此外,这些发现帮助我们思考作为人类意味着什么,指导我们找到更好的合作伙伴和支持患有脑损伤的成年人的方法。
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引用次数: 2
How does a narrative understanding of change in families post brain injury help us to humanise our professional practice? 对脑损伤后家庭变化的叙事理解如何帮助我们将专业实践人性化?
IF 0.8 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-09-17 DOI: 10.1017/BrImp.2021.14
C. Whiffin, C. Ellis-Hill
Abstract In this paper, we critically explore the discourse of change post brain injury and challenge the dominant discourse of negative change, which alone leaves little room for other perspectives to exist. These negative changes pose a considerable risk to the well-being of families who may benefit from engaging in richer accounts making room for a more coherent and connected sense of self and family post-injury. We explore how narrative approaches provide opportunities for all practitioners to expand their professional scripts and support families to move towards a future which is not dominated by a discourse of loss. While loss and negative change is an important and very real consequence, of brain injury, focusing purely on stories of loss is life limiting for family members and can cause psychological distress. The life thread model is offered as a visible tool for all practitioners to engage with and use while working with families, providing a concrete focus for reflection and discussion of narratives relating to change which otherwise can feel quite abstract in everyday practice. We argue that one way we can humanise our professional practice is to support all practitioners to engage in a narrative understanding of family change following ABI.
在本文中,我们批判性地探讨了脑损伤后变化的话语,并挑战了消极变化的主导话语,这使得其他观点几乎没有存在的空间。这些负面变化对家庭的福祉构成了相当大的风险,这些家庭可能会受益于参与更丰富的账户,为受伤后的自我和家庭意识提供更连贯和联系的空间。我们探讨了叙事方法如何为所有从业者提供机会,扩展他们的专业剧本,并支持家庭走向一个不受失去话语支配的未来。虽然损失和负面变化是脑损伤的一个重要而非常真实的后果,但仅仅关注损失的故事会限制家庭成员的生活,并可能导致心理困扰。生命线模型作为一种可见的工具,供所有从业者在与家庭合作时参与和使用,为反思和讨论与变化有关的叙述提供了具体的焦点,否则在日常实践中可能会感到相当抽象。我们认为,我们能够使我们的专业实践人性化的一种方法是支持所有从业者参与ABI之后家庭变化的叙事理解。
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引用次数: 2
The experience of close personal relationships after stroke: scoping review and thematic analysis of qualitative literature 中风后亲密人际关系的经验:定性文献的范围审查和专题分析
IF 0.8 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-08-02 DOI: 10.1017/BrImp.2021.12
Amy L Ford, J. Douglas, R. O'halloran
Psychosocial difficulties, including changed relationships are among the most pervasive and concerning issues following stroke. This study aimed to collate and thematically analyse qualitative literature describing the experience of close personal relationships from the perspective of stroke survivors. Using a scoping review methodology, four databases (CINAHL/EBSCO, MEDLINE/Pubmed, Embase, Psychinfo) were systematically searched, yielding 3100 citations. Following exclusion of duplicates and screening against inclusion criteria at title/abstract and full text levels, 53 articles were included in the review. Data were charted and thematically analysed. While research has increased since 2000, longitudinal designs are few. Four overarching themes and 12 subthemes were identified. ‘Social disruption’ described changing social worlds, lost social opportunities and shrinking networks. ‘Changed relationships’ included changed family and spousal relationships and changed parenting relationships. The third theme ‘relationships help’ highlighted positive aspects including belonging, support and a life worth living. The final theme was ‘coping with an altered social world’ and described adjustment and emotional responses. Relationships are an important aspect of life post stroke but are subject to changes and challenges. This article brings together a breadth of qualitative data to describe lived experiences. Further research, in particular, longitudinal research is required.
包括关系改变在内的社会心理困难是中风后最普遍和最令人担忧的问题。本研究旨在整理和专题分析定性文献描述的经验,从中风幸存者的角度密切的个人关系。使用范围评估方法,系统检索了四个数据库(CINAHL/EBSCO, MEDLINE/Pubmed, Embase, Psychinfo),共产生3100条引用。在排除重复并根据标题/摘要和全文级别的纳入标准进行筛选后,53篇文章被纳入综述。数据被绘制成图表并按主题进行分析。虽然自2000年以来研究有所增加,但纵向设计很少。确定了4个总主题和12个次级主题。“社会混乱”描述的是不断变化的社会世界,失去的社会机会和缩小的网络。“改变的关系”包括改变的家庭和配偶关系以及改变的父母关系。第三个主题“关系帮助”强调了积极的方面,包括归属感、支持和有价值的生活。最后一个主题是“应对变化的社会世界”,描述了适应和情绪反应。人际关系是中风后生活的一个重要方面,但也会受到变化和挑战的影响。这篇文章汇集了广泛的定性数据来描述生活经历。需要进一步的研究,特别是纵向研究。
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引用次数: 5
Evaluating the feasibility and efficacy of the Amsterdam memory and attention training for children (Amat-c) following acquired brain injury (ABI): protocol for a pilot study with online clinician support 评估获得性脑损伤(ABI)后儿童阿姆斯特丹记忆和注意力训练(Amat-c)的可行性和有效性:一项有在线临床医生支持的试点研究方案
IF 0.8 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-07-29 DOI: 10.1017/BrImp.2021.13
C. Catroppa, Edith N Botchway, N. Ryan, V. Anderson, Elle Morrison, Bernadette Lam, Chandelle Piazza, Daina Krasts, Emma McIntosh, Noor Khan, N. Sood
Abstract Background: Attention and memory deficits are common following paediatric acquired brain injury (ABI). However, there are few evidence-based interventions to improve these domains and benefit the everyday life of children post-injury. The Amsterdam Memory and Attention Training for children (Amat-c) has been translated from Dutch to English and shown to improve attention and memory skills in children following ABI. This protocol describes a study to expand accessibility of the program by using online, clinician-supported delivery with children post-ABI. Method/design: The study is a randomized controlled trial. Participants will be 40 children aged 8–16 a minimum of one-year post-ABI. Participants in the treatment group will complete 18 weekly sessions of the Amat-c program with weekly online clinician support. Participants in the active-control group will be administered ABI psychoeducation via a booklet for parents, with weekly online clinician contact. Attention and memory will be assessed at three time points up to six months post-intervention. Results: Analysis will be repeated measures multivariate planned comparisons; using the Statistical Package for the Social Sciences (IBM SPSS Statistics) General Linear Model procedure will compare pre- and post-intervention and six-month follow-up outcomes. Discussion: If shown efficacious in improving attention and memory, our team will then take a key role in implementing Amat-c into clinical care.
背景:注意和记忆缺陷是儿童获得性脑损伤(ABI)后常见的症状。然而,很少有基于证据的干预措施来改善这些领域,并使受伤后儿童的日常生活受益。阿姆斯特丹儿童记忆和注意力训练(Amat-c)已从荷兰语翻译成英语,并显示出在ABI后提高儿童的注意力和记忆技能。本协议描述了一项研究,通过使用在线,临床支持的分娩与abi后的儿童扩大程序的可访问性。方法/设计:本研究为随机对照试验。参与者将是40名年龄在8-16岁的儿童,至少在abi后一年。治疗组的参与者将在每周一次的在线临床医生支持下完成每周一次的Amat-c项目。主动控制组的参与者将通过家长手册接受ABI心理教育,每周与在线临床医生联系。注意力和记忆力将在干预后六个月的三个时间点进行评估。结果:将重复测量结果进行分析,多因素计划比较;使用社会科学统计软件包(IBM SPSS Statistics)一般线性模型程序将比较干预前后和六个月的随访结果。讨论:如果在提高注意力和记忆力方面表现出有效,我们的团队将在将Amat-c应用于临床护理方面发挥关键作用。
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引用次数: 1
The perspectives of stroke survivors and health professionals on the use of augmented reality for inpatient stroke rehabilitation: an anticipatory exploration 脑卒中幸存者和卫生专业人员对使用增强现实住院脑卒中康复的看法:一种预期的探索
IF 0.8 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-06-21 DOI: 10.1017/BrImp.2021.11
Cassandra Gorman, L. Gustafsson, Carly Gomura
Abstract Background: Augmented reality is a novel technology with potential to overlay aspects or objects from the home environment into hospital-based training, which may increase relevance and motivation for hospital-based rehabilitation. Consultation with people with lived experience and clinician stakeholders is an important step when exploring possibilities for use of new technology in the hospital environment. Aims: This study sought to understand the need and acceptability of augmented reality from the perspectives of health professionals and stroke survivors during inpatient stroke rehabilitation. Methods: This qualitative descriptive study included stroke survivors (n = 4) and health professionals (n = 10) from a large metropolitan hospital. Data collection was undertaken via focus groups which were transcribed verbatim and analysed using qualitative content analysis. Results: Inductive content analysis revealed three themes: everything is computerised these days; the possibilities are endless…but what about?; and bringing the outside into the hospital. Participants were open to the use of augmented reality for stroke rehabilitation; however there was uncertainty with pragmatic concerns and stroke survivors describing possible applications in building confidence and self-efficacy, and sharing experiences to enhance caregivers understanding. Conclusion: This research identified that there is potential acceptability for augmented reality in stroke rehabilitation. The needs identified by the participants may inform development of current and future technology.
背景:增强现实技术是一种新的技术,有可能将家庭环境中的某些方面或物体覆盖到基于医院的训练中,这可能会增加基于医院的康复的相关性和动机。在探索在医院环境中使用新技术的可能性时,与有实际经验的人和临床医生利益相关者进行磋商是重要的一步。目的:本研究试图从医疗专业人员和脑卒中幸存者的角度了解增强现实在住院脑卒中康复中的需求和可接受性。方法:本定性描述性研究包括来自一家大城市医院的中风幸存者(n = 4)和卫生专业人员(n = 10)。通过焦点小组进行数据收集,逐字记录并使用定性内容分析进行分析。结果:归纳内容分析揭示了三个主题:现在一切都是计算机化的;可能性是无限的,但是关于什么呢?把外面的东西带进医院。参与者对使用增强现实进行中风康复持开放态度;然而,务实的考虑和中风幸存者描述在建立自信和自我效能方面的可能应用,以及分享经验以增强护理人员的理解,存在不确定性。结论:本研究表明增强现实技术在脑卒中康复中具有潜在的可接受性。参与者确定的需求可以为当前和未来技术的发展提供信息。
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引用次数: 1
Academic and post-secondary participation of students with ABI after the BrainSTEPS program 在BrainSTEPS项目后,ABI学生的学术和高等教育参与
IF 0.8 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-06-17 DOI: 10.1017/BrImp.2021.10
J. Riccardi, Brenda Eagan-Johnson, M. Vaccaro, Angela H. Ciccia
To describe and analyze educational and post-high school participation of individuals who sustained an acquired brain injury (ABI) during childhood and participated in a state-wide school-based brain injury support program, BrainSTEPS in Pennsylvania (BrainSTEPS). Retrospective analysis of programmatic information and data collected through electronic and phone surveys during a follow-up survey for a statewide, school-based, school consultation program for students with ABI. Caregivers reported on 190 individuals with ABI who participated in Pennsylvania’s BrainSTEPS Program. Individuals post-ABI who participated in the BrainSTEPS were most likely to have experienced a mild ABI in high school due to sports. Post-injury, students were most likely to be enrolled in regular education, have graduated high school, pursued four-year college education and be attending post-secondary education and living with family. Additional significant relationships were not reported within the concussion or moderate-severe traumatic brain injury subgroups. Significant relationships for educational outcomes included higher likelihood of regular educational placement at the time of referral given an older grade at injury and regular educational placement before injury. For post-high school outcomes, a younger age at survey was associated with current attendance in post-secondary education, compared to other vocational options. Individuals with a history of ABI before school age and during primary and secondary education present with heterogeneous educational and post-high school outcomes. A greater breadth of measures of formal and informal educational and vocational supports and post-high school attainment should be implemented to accurately capture the needs and outcomes of these students to inform supports and services.
描述和分析在儿童时期遭受获得性脑损伤(ABI)的个体的教育和高中后参与,并参加了一个全州范围的以学校为基础的脑损伤支持计划,在宾夕法尼亚州(BrainSTEPS)。回顾性分析通过电子和电话调查收集的程序性信息和数据,这些信息和数据是在全州范围内以学校为基础的ABI学生学校咨询项目的后续调查中收集的。护理人员报告了190名参加宾夕法尼亚州BrainSTEPS计划的ABI患者。参加BrainSTEPS的ABI后个体最有可能在高中因运动而经历轻度ABI。受伤后的学生最有可能接受正规教育,高中毕业,接受四年大学教育,并接受高等教育,与家人住在一起。在脑震荡或中重度创伤性脑损伤亚组中没有其他重要的关系。教育结果的显著关系包括在转诊时接受常规教育安置的可能性更高,因为受伤时的成绩较老,受伤前接受常规教育安置的可能性更高。就高中毕业后的结果而言,与其他职业选择相比,接受调查的年龄越小,目前接受中学毕业后教育的人数越高。在学龄前和小学和中学教育期间有ABI病史的个体表现出不同的教育和高中后的结果。应实施更广泛的正规和非正规教育和职业支助以及高中毕业后成就措施,以准确地把握这些学生的需要和成果,为支助和服务提供信息。
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引用次数: 0
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Brain Impairment
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