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Physicians’ Readiness to Treat Children With Autism Spectrum Disorders: A Focus on Orthopedics and Ophthalmology 医生准备治疗儿童自闭症谱系障碍:聚焦于骨科和眼科
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2025-09-29 DOI: 10.1111/jppi.70023
Dina Mostovoy, Merav Ben Natan, Rawan Masarwa, Yaniv Yonai, Yaron Berkovich

Little is known about knowledge and confidence to treat children with autism spectrum disorder (ASD) among physicians working in specific medical fields, such as orthopedics and ophthalmology. Understanding the perspectives and preparedness of professionals in these specialties is crucial for improving the quality of care provided to this population. The objective of this study was to compare the ASD knowledge level, perception of difficulties, and readiness to treat children with ASD between physicians in orthopedics and ophthalmology. A quantitative correlational survey methodology was employed. Participants included 202 physicians, with 94 from orthopedics and 108 from ophthalmology. Participants completed a questionnaire based on the “Knowledge about Childhood Autism among Health Workers” survey. Statistical analyses, including correlation and linear regression, were conducted to examine the relationships between variables. Orthopedic physicians exhibited lower ASD knowledge, reported more difficulties, and displayed lower readiness compared to their ophthalmologic counterparts. Handling aggression/destructive behaviors posed a greater challenge for orthopedic professionals, who also treated fewer children with ASD over the past year. Working in ophthalmology emerged as a strong predictor of readiness to treat ASD. Notably, a minority in both groups reported having received ASD-specific training. The study underscores the importance of ASD-specific training for physicians in orthopedics and ophthalmology, emphasizing the need for tailored training programs in distinct medical fields to optimize knowledge and skills for providing effective care to children with ASD.

在特定医学领域工作的医生,如骨科和眼科,对治疗自闭症谱系障碍(ASD)儿童的知识和信心知之甚少。了解这些专业的专业人员的观点和准备对于提高向这一人群提供的护理质量至关重要。本研究的目的是比较骨科和眼科医生在ASD知识水平、困难感知和治疗ASD儿童的准备程度。采用定量相关调查方法。参与者包括202名医生,其中94名来自骨科,108名来自眼科。参与者根据“卫生工作者关于儿童自闭症的知识”调查完成了一份问卷。统计分析,包括相关和线性回归,以检验变量之间的关系。与眼科医生相比,骨科医生表现出较低的ASD知识,报告的困难更多,并且表现出较低的准备程度。处理攻击性/破坏性行为对骨科专业人员来说是一个更大的挑战,他们在过去一年中治疗的自闭症儿童也越来越少。在眼科学工作成为治疗自闭症谱系障碍的一个强有力的预测指标。值得注意的是,两组中都有少数人报告接受过自闭症特定培训。该研究强调了对骨科和眼科医生进行ASD特异性培训的重要性,强调需要在不同的医学领域进行量身定制的培训计划,以优化知识和技能,为ASD儿童提供有效的护理。
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引用次数: 0
Impact of the COVID-19 Pandemic on Service Experiences of Individuals With Intellectual Disability in Sweden: Differences Between Men and Women 新冠肺炎疫情对瑞典智障人士服务体验的影响:男女差异
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2025-09-06 DOI: 10.1111/jppi.70020
Lisa Palmqvist, Henrik Danielsson, Pia Käcker, Kristin Alfredsson Ågren

This study explores the impact of the COVID-19 pandemic on service experiences of individuals with intellectual disability in Sweden, with a focus on differences between men and women. Using large-scale self-reported survey data from the National User Survey (2017–2022), changes in satisfaction with social services, including daily activity services, group homes and service homes, were analysed. Overall, satisfaction levels remained high, with notable variations between service types and differences between men and women. Satisfaction with daily activity services was reported with a higher score during the pandemic for both men and women, whereas no significant changes were observed for group homes, and satisfaction with service homes was reported with slightly lower scores. Across all service types and questions, men consistently reported a higher satisfaction than women. Women did not report a higher satisfaction than men in any instance, and disparities were particularly evident in aspects related to decision-making and feelings of safety. The findings highlight the pandemic's differential impact on service experiences for men and women with intellectual disability, underlining the importance of addressing sex disparities in service provision. These results have implications for policy and practice, particularly in designing more inclusive and equitable support systems that involve individuals with intellectual disability in decision-making processes and respond to their unique needs during health crises.

本研究探讨了2019冠状病毒病大流行对瑞典智障人士服务体验的影响,重点关注了男性和女性之间的差异。使用来自全国用户调查(2017-2022)的大规模自我报告调查数据,分析了社会服务满意度的变化,包括日常活动服务,团体之家和服务之家。总体而言,满意度仍然很高,不同的服务类型和男女之间存在显著差异。据报道,在大流行期间,男性和女性对日常活动服务的满意度得分较高,而对集体之家的满意度没有显著变化,对服务之家的满意度得分略低。在所有的服务类型和问题中,男性的满意度始终高于女性。在任何情况下,妇女的满意度都没有高于男子,在决策和安全感方面的差异尤其明显。调查结果强调了大流行病对智力残疾男性和女性服务经历的不同影响,强调了解决服务提供方面的性别差异的重要性。这些结果对政策和实践具有影响,特别是在设计更具包容性和公平的支持系统方面,使智力残疾个人参与决策过程,并在卫生危机期间对他们的独特需求作出反应。
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引用次数: 0
Direct Staff's Experiences in Recognizing and Managing Psychiatric Symptoms in People With Intellectual Disabilities and Behaviour of Concern in Supported Accommodations 直接工作人员在认知和处理智障人士的精神症状及在支援设施的关注行为方面的经验
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2025-09-04 DOI: 10.1111/jppi.70021
Catrin Johansson, Helena Antonsson

The aim of this study is to explore the experiences of direct staff in managing psychiatric symptoms in people with intellectual disabilities and behaviors of concern in supported accommodation. The study has a quantitative, cross-sectional design using a questionnaire. Data were collected from 197 direct staff members working in supported community-based accommodation using an adapted version of the Checklist of Challenging Behaviour (CCB). The results show that staff experienced slight or moderate difficulty in managing psychiatric symptoms. The ratings were 38% for anxiety, 37% for compulsive behavior, 31% for manic behavior, and 49% for depressive symptoms. Direct staff members in supported accommodation face challenges in managing psychiatric symptoms and require educational training to improve their knowledge and skills. One viable option would be to implement web-based training programs. Further research and evaluation are imperative to improve access to mental health care for individuals with intellectual disabilities.

本研究的目的是探讨直接工作人员在管理智障人士的精神症状和在辅助住宿中关注的行为方面的经验。本研究采用问卷调查的定量、横断面设计。数据是从197名在支持的社区住宿场所工作的直接工作人员中收集的,使用了一份改编版的挑战行为清单。结果显示,工作人员在处理精神症状方面遇到轻微或中度困难。焦虑评分为38%,强迫行为评分为37%,躁狂行为评分为31%,抑郁症状评分为49%。支助性住宿的直接工作人员在管理精神症状方面面临挑战,需要接受教育培训,以提高他们的知识和技能。一个可行的选择是实施基于网络的培训项目。进一步的研究和评估对于改善智力残疾者获得精神卫生保健的机会至关重要。
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引用次数: 0
The Shared Citizenship Paradigm and Its Measurement 共享公民范式及其测度
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2025-08-03 DOI: 10.1111/jppi.70017
Claudia Claes, Robert L. Schalock, Geert Van Hove

This article focuses on the Shared Citizenship Paradigm that incorporates a contemporary set of values and beliefs about people with intellectual and developmental disabilities and their right to participate fully in all aspects of life and society. The article provides an overview of the paradigm, describes the parameters of a shared citizenship measurement model, and discusses potential uses of shared citizenship measurement data. These uses involve guiding services and supports, providing formative feedback to individuals, organizations, and systems, and framing research opportunities and practices.

本文关注的是共享公民范式,它融合了一套关于智力和发育障碍人士的当代价值观和信仰,以及他们充分参与生活和社会各个方面的权利。本文概述了该范式,描述了共享公民度量模型的参数,并讨论了共享公民度量数据的潜在用途。这些用途包括指导服务和支持,向个人、组织和系统提供形成性的反馈,以及构建研究机会和实践。
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引用次数: 0
Providers' Perspectives on Resources Needed for Disseminating and Implementing Evidence-Based Practices for Autism: A Qualitative Study 提供者对传播和实施自闭症循证实践所需资源的看法:一项定性研究
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2025-07-29 DOI: 10.1111/jppi.70019
Jennica Li, Yue Yu, Melina Melgarejo, Patricia L. Schetter, Jessica Suhrheinrich, Aubyn Stahmer

Effective dissemination and implementation of evidence-based practices (EBPs) for autism have proven challenging. The California Autism Professional Training and Information Network (CAPTAIN) is a statewide initiative designed to build capacity for autism EBPs within community service agencies. The present study aimed to examine resources requested by CAPTAIN members to support their dissemination and implementation efforts in order to inform future implementation research and practice. In an annual survey, CAPTAIN members identified resources needed for their dissemination and implementation work. Using the template analysis method, we analyzed written responses. Overarching themes included members wanting more: ready-made resources for training and coaching, inclusive resources, effective methods of obtaining and sharing resources, opportunities to connect and learn from other members, empirical information about EBPs, and opportunities for professional development and support. Providers with direct experience offer useful perspectives as members of the EBP dissemination and implementation delivery system that can be valuable to both the translation and support systems and can inform implementation science more broadly.

事实证明,有效传播和实施自闭症循证实践(ebp)具有挑战性。加州自闭症专业培训和信息网络(CAPTAIN)是一项全州范围的倡议,旨在建立社区服务机构内自闭症ebp的能力。本研究旨在审查协调委员会成员为支持其传播和执行工作所要求的资源,以便为今后的执行研究和实践提供信息。在年度调查中,协调小组成员确定了其传播和执行工作所需的资源。采用模板分析法对书面回复进行分析。主要主题包括会员希望获得更多:现成的培训和指导资源、包容性资源、获取和共享资源的有效方法、与其他会员联系和学习的机会、有关ebp的经验信息以及专业发展和支持的机会。作为EBP传播和实施交付系统的成员,具有直接经验的提供者提供了有用的观点,这对翻译和支持系统都是有价值的,并且可以更广泛地为实施科学提供信息。
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引用次数: 0
Celebrating Plurality: How to Embed Inclusive Research Structurally and Meaningfully in Research Practice Related to People With Profound Intellectual and Multiple Disabilities 庆祝多元性:如何将包容性研究结构性和有意义地嵌入与深度智力和多重残疾人士相关的研究实践中
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2025-07-23 DOI: 10.1111/jppi.70018
Wietske Verhagen, Annet ten Brug, Aly Waninge, Annette van der Putten

In the last decades, developments concerning “inclusive research” gave rise to a growing valuation of and need for the participation of people with experiential expertise in research practices. Knowledge related to inclusive research on people with profound intellectual and multiple disabilities (PIMD) is scarce. The aim of this study is to (1) explore how inclusive research can be structurally and meaningfully embedded in the research practice related to people with PIMD by including the experiential expertise of different stakeholders and (2) start an ongoing dialogue on this topic. Responsive evaluation, a qualitative, participatory research approach, served as the methodological frame for this study. Insight into practical and ethical questions concerning the inclusion of people with experiential expertise in research practices related to people with PIMD was obtained by a brief literature review and exploratory interviews with seven stakeholders. Additionally, six in-depth interviews with various stakeholders explored the possible answers to these questions. Finally, a focus group consisting of seven stakeholders discussed insights that lacked consensus and sparked discussion. The results were arranged in four topics: “what”: defining the used concepts; “why”: the utility and aim of the involvement of stakeholders; “who”: competences needed to participate in research; and “how”: the way participation could be organized within the research practices related to people with PIMD. There is no “one size fits all” solution of embedding inclusive research in research practices related to people with PIMD. In order to be fruitful and meaningful for everyone involved, the context and the various perspectives of all stakeholders within a research project should be taken into account. Making room for plurality, changeability, and an ongoing dialogue between all involved is hereby essential.

在过去的几十年里,关于“包容性研究”的发展使人们越来越重视和需要具有经验专长的人参与研究实践。关于深度智力和多重残疾(PIMD)的包容性研究的相关知识很少。本研究的目的是:(1)探索包容性研究如何通过包括不同利益相关者的经验专长,在与PIMD患者相关的研究实践中进行结构性和有意义地嵌入;(2)就这一主题展开持续的对话。响应性评价是一种定性的、参与性的研究方法,是本研究的方法框架。通过简要的文献回顾和对七个利益相关者的探索性访谈,我们深入了解了有关将具有经验专长的人纳入与PIMD患者相关的研究实践的实践和伦理问题。此外,对不同利益相关者进行了六次深入访谈,探讨了这些问题的可能答案。最后,由七个利益相关者组成的焦点小组讨论了缺乏共识的见解,并引发了讨论。结果分为四个主题:“什么”:定义使用的概念;“为什么”:利益相关者参与的效用和目的;“谁”:参与研究所需的能力;以及“如何”:在与PIMD患者相关的研究实践中组织参与的方式。在与PIMD患者相关的研究实践中嵌入包容性研究并没有“一刀切”的解决方案。为了对每个参与的人都有成果和意义,研究项目中所有利益相关者的背景和各种观点都应该考虑在内。因此,为多样性、可变性和所有相关方之间的持续对话留出空间至关重要。
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引用次数: 0
“Navigating Social Security Employment Supports: The Experiences of Young Adults With Intellectual Disabilities Who Want to Work” “社会保障就业支持:想要工作的智障青年的经历”
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2025-07-16 DOI: 10.1111/jppi.70015
Cristina C. Parsons, Andrew C. Persch

The number of youth and young adults with intellectual disabilities requiring social security assistance is growing rapidly, but utilization of available employment support programming (i.e., work incentives) is not. There is a paucity of research examining why young adult beneficiaries are not accessing available employment supports. This study seeks to answer the research questions: (1) “How do young adults with intellectual disabilities become aware of, and receive accurate information about employment support programs for which they are potentially eligible?”; (2) “What barriers have young adults with intellectual disabilities encountered to accessing appropriate employment support programs?”; and (3) “How does the complexity of employment support programs affect the willingness of young adults with intellectual disabilities to work?” We explore these questions with phenomenological research methods to understand the lived experience of young adults with intellectual disabilities and their families in the United States, while drawing parallels to similar systems in other countries. We found the most common way families became aware of employment support programming was informally through other parents. Young adults relied heavily on their parents to coordinate employment support program requirements, but parents were confused by program complexity and frustrated with available communication processes. Young adults were undeterred in their work trajectories but reported backtracking in other important areas of independent living skills like budgeting and paying rent.

需要社会保障援助的智障青年和青壮年人数正在迅速增加,但利用现有就业支助方案(即工作奖励)的人数却没有增加。关于为什么年轻的成年受益人不能获得现有的就业支持的研究很少。本研究旨在回答以下研究问题:(1)“智障青年如何了解并获得他们可能符合条件的就业支持计划的准确信息?”(2)“有智力障碍的年轻人在获得适当的就业支持计划方面遇到了哪些障碍?”(3)“就业支持计划的复杂性如何影响智障年轻人的工作意愿?”我们用现象学的研究方法来探讨这些问题,以了解美国智障青年及其家庭的生活经历,同时与其他国家的类似制度进行比较。我们发现,家庭了解就业支持计划的最常见方式是通过其他父母非正式地了解。年轻人严重依赖父母来协调就业支持计划的要求,但父母对计划的复杂性感到困惑,对可用的沟通过程感到沮丧。年轻人在工作轨迹上没有受到影响,但在独立生活技能的其他重要领域,如预算和支付租金,他们报告说倒退了。
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引用次数: 0
Ageing With Intellectual Disabilities and Complex Age-Related Conditions in Ireland: In Search of a Model of Care 老龄化与智力残疾和复杂的年龄相关条件在爱尔兰:在寻找一种模式的护理
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2025-07-09 DOI: 10.1111/jppi.70016
Fintan Sheerin, Maureen D'Eath, Sandra Fleming, Amara Naseer, Mary McCarron, Philip McCallion

Improvements in health care and supports for people with intellectual disabilities have resulted in greater longevity, with more people living into older age. This is a positive development, but it has seen the occurrence of age-related issues that were theretofore quite rare in this population. It has become clear that some of these issues present a level of complexity, requiring a coordinated, timely, and individualized response. That response has been challenging for intellectual disability services in Ireland, where there has been no clear model of care for older people with intellectual disabilities with complex age-related health needs. The authors, having undertaken a review of the literature to identify extant models and finding none, seek in this paper to bring together key concepts and aspects to propose a model of care to support older people with intellectual disabilities as their needs become more complex.

对智力残疾者的保健和支持的改善使寿命延长,更多的人活到老年。这是一个积极的发展,但它已经出现了与年龄相关的问题,因此在这个人群中非常罕见。很明显,其中一些问题呈现出一定程度的复杂性,需要协调、及时和个性化的反应。这一反应对爱尔兰的智力残疾服务构成挑战,因为爱尔兰没有明确的模式来照顾有复杂年龄相关健康需求的智力残疾老年人。作者对文献进行了回顾,以确定现有的模式,但没有发现,在本文中,作者试图将关键概念和方面结合起来,提出一种照顾模式,以支持智力残疾的老年人,因为他们的需求变得更加复杂。
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引用次数: 0
Meaning-Making Experiences of Family Caregivers Caring for a Member With Intellectual Disability and Challenging Behaviour 家庭照顾者照顾智障成员及挑战性行为的意义建构经验
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2025-06-25 DOI: 10.1111/jppi.70014
Alice Nga Lai Kwong, Lisa Pau Le Low

With the substantial burden faced by family members of adults with intellectual disability (ID) and challenging behaviour (CB), literature has shown that caregivers who have successfully found meaning in their caregiver role are more likely to cope well with the difficulties they face. This study aimed to examine how family caregivers described and made meaning of caring for an adult family member with ID and CB at home. This study included 37 caregivers (parents and siblings) who were living and caring for their adult family member with ID and CB. Individual in-depth interviews were conducted, and deductive thematic analysis was employed. Three themes emerged: (1) the reality of caregiving, (2) the importance of support networks, and (3) reappraisals of the caregiving role. In the process of meaning making, family caregivers appraised the reality of their caregiving situation as a life of feeling restricted and losing control, resulting in negative psychological consequences. They were aware of the demands of caregiving but were able to describe a range of support from families, peers, and professionals and services to maintain their caregiving roles. Reappraising caregiving enabled them to identify positive aspects of caregiving by reviewing their personal life philosophies and assigning new meanings to the caregiving situations. Family caregivers of adults with ID and CB spoke about the ways in which they coped and managed CB and provided ‘tips’ for other families that highlighted a strength-based caregiving research model and focused on ways to negotiate and adapt to the incessant challenges of caregiving. Meaning-focused interventions for family caregivers of people with ID which aim at promoting positive appraisal will enable them to not only focus on downplaying the negative aspects of caregiving but optimising the positive caregiving experiences.

由于患有智力残疾(ID)和具有挑战性行为(CB)的成年人的家庭成员面临着巨大的负担,文献表明,那些成功地在照顾者角色中找到意义的照顾者更有可能很好地应对他们所面临的困难。本研究旨在探讨家庭照护者如何描述在家照顾患有ID和CB的成年家庭成员并赋予其意义。本研究包括37名照顾者(父母和兄弟姐妹),他们生活和照顾患有ID和CB的成年家庭成员。进行个人深度访谈,采用演绎主题分析。研究出现了三个主题:(1)护理的现实;(2)支持网络的重要性;(3)对护理角色的重新评价。在意义制造的过程中,家庭照顾者将其照顾情境的现实评价为一种感觉受到限制和失去控制的生活,从而产生消极的心理后果。他们意识到照顾的需求,但能够描述来自家庭,同伴,专业人员和服务的一系列支持,以维持他们的照顾角色。重新评估护理使他们能够通过回顾他们的个人生活哲学和赋予护理情况新的意义来识别护理的积极方面。患有ID和CB的成年人的家庭照顾者谈到了他们应对和管理CB的方法,并为其他家庭提供了“提示”,强调了基于力量的护理研究模型,并专注于如何协商和适应照顾的不断挑战。对ID患者的家庭照顾者进行以意义为中心的干预,旨在促进积极的评价,使他们不仅能够专注于淡化照顾的消极方面,而且能够优化积极的照顾体验。
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引用次数: 0
Quality of Life as a Paradigm With Multiple Applications in the Field of Intellectual and Developmental Disabilities 生活质量作为一种范式在智力和发育障碍领域的多重应用
IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Pub Date : 2025-06-25 DOI: 10.1111/jppi.70013
Ivan Brown, Roy I. Brown, Meaghan Edwards, Alice Schippers

This paper sets out an argument for conceptualizing quality of life as a useful paradigm in the field of intellectual and developmental disabilities. In doing so, it addresses the core elements of a paradigm as it is generally understood in scientific circles. The ideological and theoretical roots of quality of life are centered around core values, are closely connected to social constructs that have developed over time, are currently widely accepted in our field, and are supported by numerous laws, policies, and conventions. The meaning of quality of life as a paradigm is explained. One core premise of a paradigm is that its ideological and theoretical base should be usefully applied in current social contexts. This paper argues that the overall objective of improving quality of life for people living in their own contexts may be pursued through numerous application frameworks, each of which may have numerous specific application strategies that are best suited to the specific “quality” objectives being sought within specific contexts. For this reason, exemplary application frameworks and more specific application strategies are presented, and a case is made for ensuring that their outcomes are both achievable and positive. This, then, constitutes a new and broader understanding of quality of life as more than a useful social construct or a system of measurement, but rather as the overall thrust behind everything we do in our field and that may be realized in multiple ways. A summary figure is provided.

本文提出了将生活质量概念化为智力和发育障碍领域的一个有用范例的论点。在这样做的过程中,它解决了范式的核心要素,因为它通常在科学界被理解。生活质量的思想和理论根源以核心价值观为中心,与随着时间的推移而发展的社会结构密切相关,目前在我们的领域被广泛接受,并得到众多法律、政策和公约的支持。本文解释了生活质量作为一种范式的意义。范式的一个核心前提是它的思想和理论基础必须有效地应用于当前的社会语境。本文认为,提高生活在自己环境中的人们的生活质量的总体目标可以通过许多应用程序框架来实现,每个应用程序框架都可以有许多特定的应用程序策略,这些策略最适合在特定环境中寻求的特定“质量”目标。出于这个原因,本文提出了示例性的应用程序框架和更具体的应用程序策略,并给出了一个案例,以确保它们的结果既可实现又积极。因此,这构成了对生活质量的一种新的、更广泛的理解,它不仅仅是一种有用的社会结构或一种衡量体系,而是我们在我们的领域所做的一切背后的总体推动力,这可能以多种方式实现。提供了一个汇总数字。
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引用次数: 0
期刊
Journal of Policy and Practice in Intellectual Disabilities
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