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Journal of Intellectual & Developmental Disability最新文献

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“Continuously struggling for balance”: The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities “不断为平衡而奋斗”:荷兰父母照顾智力和多重残疾儿童的生活经历
IF 1.3 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-05-29 DOI: 10.3109/13668250.2022.2073707
L. Geuze, A. Goossensen, Samuel Schrevel
ABSTRACT Background Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon “parenting a child with PIMD.” Method We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research was used. Findings The essential meaning of the phenomenon was understood as “continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time.” The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns. Conclusions Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents’ challenges offers them the possibility to participate in society. Healthcare professionals should address the parents’ perspectives related to the child’s quality of life.
背景:重度智力和多重残疾儿童(PIMD)的父母有广泛的照顾责任。这项研究描述了“养育患有PIMD的孩子”这一现象。方法对25名荷兰家长进行深度访谈。我们采用了一种反思性的生活世界研究。这种现象的基本含义被理解为“不断努力创造和维持新的平衡,保护孩子和家庭免受困难;随着时间的推移而变化。”确定了以下八个组成部分:(1)医疗复杂性;(2)多维疲劳;(三)照顾兄弟姐妹;(4)社会联系;(5)未来的不确定性;(六)破除官僚主义;(7)对医疗服务的依赖;(8)财务问题。结论卫生保健服务应使家庭易于获得管理家庭生活所需的辅助技术和服务。对父母的挑战的回应为他们提供了参与社会的可能性。医疗保健专业人员应解决父母对儿童生活质量的看法。
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引用次数: 4
Parents’ experiences of raising adolescents with intellectual or developmental disabilities 父母养育有智力或发育障碍的青少年的经验
IF 1.3 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-05-18 DOI: 10.3109/13668250.2022.2057843
J. Kerr, J. Sharry, C. Wilson
ABSTRACT Background Parents of children with intellectual or developmental disabilities have unique challenges in navigating the developmental period of adolescence. The present study explored the experiences of parents connected with disability services throughout the island of Ireland of parenting their child during adolescence. Method Five focus groups were conducted with twenty-five parents of adolescents and young adults with intellectual or developmental disabilities. Parents were asked open-ended questions about their experiences of raising their adolescent child. Transcripts of the focus groups were coded using reflexive thematic analysis. Results On the journey from childhood to adolescence parents have to manage a number of different stressors with and for their child. These occur at societal, service provision, familial, and personal levels, with each stressor interacting with others to create vicious circles of struggle. Conclusions Parents' struggles are multi-fold, and are not discreet entities that can be separated. The struggle is dynamic and continuous.
背景智力或发育障碍儿童的父母在青春期的发展过程中面临着独特的挑战。本研究探讨了整个爱尔兰岛与残疾服务有关的父母在青少年时期养育子女的经历。方法采用5个焦点小组对25名智力或发育障碍青少年家长进行调查。父母们被问及关于他们抚养青春期孩子的经历的开放式问题。使用反身性专题分析对焦点小组的记录进行编码。结果:在从童年到青春期的过程中,父母必须与孩子一起管理许多不同的压力源。这些发生在社会、服务提供、家庭和个人层面,每个压力源与其他压力源相互作用,形成恶性循环。结论:父母的挣扎是多重的,并不是可以分离的独立实体。斗争是动态的、持续的。
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引用次数: 3
Family relationships in intellectual disability: Parents’ perceptions as elicited by family photographs 智力残疾的家庭关系:家庭照片引发的父母认知
IF 1.3 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-04-04 DOI: 10.3109/13668250.2022.2052625
R. A. Correia, M. Seabra-Santos
ABSTRACT Background Families, as a network of emotional connections, assume a particularly important role when there is a member with intellectual disabilities (ID). The main aim of the study is to explore the perceptions of parents of persons with ID about their family relationships. Method Ten parents of persons with ID, four of which were fathers, were interviewed using photo-elicited interviews and 60 photographs were analysed. Results Persons depicted in the photographs were mainly members of the nuclear family, and the moments captured were mostly family rituals. Joy was the most present feeling in the photographs and “saudade” the most evoked feeling when viewing them. Family relationships assume an essential role for parents, and acceptance and inclusion emerged as central concepts. Conclusions The core value of family relationships for parents, as a resource to deal with the challenges brought on by the condition, should be taken into account in interventions.
摘要背景家庭作为一个情感联系网络,在有智力残疾成员的情况下发挥着特别重要的作用。本研究的主要目的是探讨ID患者父母对其家庭关系的看法。方法对10名身份证患者的父母(其中4人为父亲)进行照片访谈,并对60张照片进行分析。结果照片中的人物主要是核心家庭的成员,拍摄的时刻大多是家庭仪式。喜悦是照片中最真实的感觉,“saudade”是观看照片时最容易唤起的感觉。家庭关系对父母起着至关重要的作用,接受和包容成为核心概念。结论在干预措施中应考虑家庭关系对父母的核心价值,作为应对疾病带来的挑战的资源。
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引用次数: 0
Worlds of care: The emotional lives of fathers caring for children with disabilities 关爱世界:父亲关爱残疾儿童的情感生活
IF 1.3 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-03-21 DOI: 10.3109/13668250.2021.1997140
P. McKearney
Is contemporary masculinity too fragile to handle the weight of care, dependence, and disability? Aaron Jackson’s Worlds of Care explores the ways that men in the United States face the economic, emotional, and relational challenges when their children with developmental disabilities require intensive care. How does this kind of parenting affect these men’s understanding of their responsibilities, their life-course, and their gendered identity? The book demonstrates the social conditions that create the challenges in the first place – such as an arduous form of capitalism and trajectories of masculinity that scar men’s engagement with care. And it shows us also what it is like for men to live in and through these conditions in the pursuit of a good life for themselves and their children. In the context of a literature that focuses on the relationship between care and the social conditions of women, the result is a rare and insightful look into the relationship between masculinity, dependence, and disability.
当代男性是否太脆弱,无法承受照顾、依赖和残疾的重担?亚伦·杰克逊的《关爱世界》探讨了美国男性面对经济、情感和关系挑战的方式,当他们的孩子有发育障碍时,他们需要重症监护。这种养育方式如何影响这些男人对自己的责任、人生历程和性别认同的理解?这本书首先展示了造成这些挑战的社会条件——比如一种艰苦的资本主义形式和男性气概的轨迹,这些轨迹使男性无法参与到关爱中来。它也向我们展示了男人在这样的条件下生活是什么样子的为了他们自己和他们的孩子追求美好的生活。在关注照顾与女性社会状况之间关系的文献背景下,结果是对男性气质、依赖和残疾之间关系的罕见而深刻的观察。
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引用次数: 2
An evaluation of the German teacher version of the Developmental Behaviour Checklist in children and adolescents with intellectual disability 德国教师版发展行为检查表对智障儿童和青少年的评价
IF 1.3 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-03-17 DOI: 10.3109/13668250.2022.2044269
Carmen L. A. Zurbriggen, C. Müller
ABSTRACT Background The Developmental Behaviour Checklist (DBC) is an established, internationally used questionnaire for assessing behavioural and emotional problems among young people with developmental or intellectual disabilities (ID). The present study aims to evaluate the psychometric properties of its German teacher version (DBC-T). Method The German DBC-T was administered to 397 school staff members who reported twice on 1177 children and adolescents with ID over a period of 7–9 months. Data were analysed within an exploratory structural equation modelling framework. Results Our results supported the five-factor structure of the DBC-T and found good reliability for all scales. Analyses on the relationship of DBC-T scores with students’ age, gender, and adaptive behaviour provided further evidence for the validity of the DBC-T. Conclusions Our study endorses the notion that the German DBC-T is an important instrument both for research and practice. Limitations and further directions are discussed.
发展行为检查表(DBC)是一份国际通用的调查问卷,用于评估有发育或智力障碍(ID)的青少年的行为和情绪问题。本研究旨在评估其德语教师版(DBC-T)的心理测量特性。方法采用德国DBC-T量表对397名学校工作人员进行问卷调查,并对1177名儿童和青少年进行了7 ~ 9个月的两次问卷调查。数据在探索性结构方程建模框架内进行分析。结果本研究结果支持bc - t的五因子结构,在各量表上具有良好的信度。通过分析bc - t得分与学生年龄、性别、适应行为的关系,进一步证明了bc - t的有效性。结论我们的研究支持了德国DBC-T在研究和实践中都是一个重要的工具的观点。讨论了局限性和进一步的发展方向。
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引用次数: 0
Reducing restrictive measures in complex long-term care for people with intellectual disabilities: Implementation interventions through the lens of normalisation process theory 减少智力残疾人复杂长期护理中的限制性措施:通过正常化过程理论的视角实施干预
IF 1.3 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-03-15 DOI: 10.3109/13668250.2022.2044270
E. Bisschops, J. C. de Schipper, Baukje Schippers, P. Embregts, C. Schuengel
ABSTRACT Background The multi-disciplinarity of long-term care for people with intellectual disabilities makes organisations seek stability and predictability, complicating implementing innovations. Interventions to implement a method for reducing restrictive measures were analysed through the lens of Normalisation Process Theory to understand the social mechanisms at play. Methods Process notes, collected during a trial in which a method to reduce restrictive measures was implemented, were analysed guided by implementation interventions defined by Cochrane Effective Practice and Organisation of Care Review Group. These interventions were mapped to social mechanisms of Normalisation Process Theory. Results Implementation interventions were widely used in which clients’ perspectives were expressed (client-related-interventions), and consensus processes were held with care professionals. These interventions initiated NPT’s social mechanisms’ Coherence, Cognitive Participation and Collective Action. Conclusions The emphasis on consensus and clients’ perspectives when methodically reducing restrictive measures reflects some unique implementation challenges in long-term intellectual disability care.
摘要背景智力残疾人长期护理的多学科性使组织寻求稳定性和可预测性,使实施创新变得复杂。通过规范化过程理论的视角分析了实施减少限制性措施的方法的干预措施,以了解其中的社会机制。方法在Cochrane有效实践和护理组织审查小组定义的实施干预措施的指导下,分析在实施减少限制性措施的试验期间收集的过程记录。这些干预措施被映射到正常化过程理论的社会机制中。结果实施干预措施被广泛使用,其中表达了客户的观点(与客户相关的干预措施),并与护理专业人员达成了共识。这些干预措施启动了《不扩散条约》的社会机制“一致性、认知参与和集体行动”。结论在有条不紊地减少限制性措施时,强调共识和客户的观点反映了长期智障护理中一些独特的实施挑战。
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引用次数: 2
A preliminary firesetting offence chain for adults with intellectual and other developmental disabilities 针对智力和其他发育障碍成年人的初步纵火犯罪链
IF 1.3 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-03-13 DOI: 10.3109/13668250.2022.2037186
J. Collins, M. Barnoux, P. Langdon
ABSTRACT Background The theoretical understanding of firesetting behaviour has predominantly been developed with men in prisons or psychiatric hospitals without neurodevelopmental disabilities. Consequently, there is a lack of evidence regarding the validity of current theory when applied to adults with intellectual disabilities and/or autism. Method Thirteen adults in England with intellectual and other developmental disabilities were interviewed about the affective, cognitive, behavioural, and contextual factors leading up to and surrounding a recorded firesetting incident. Interviews were analysed using a Grounded Theory approach. Results The resulting model consists of four phases: (1) background, (2) early adulthood, (3) pre-offence period, and (4) offence, and post offence period. Conclusion The model accounts for unique precursors to firesetting including mental health deterioration, poor problem solving, and new motivations for firesetting. Unlike other offence chain theories, the significance of post-offence behaviour and cognitions are highlighted.
摘要背景对纵火行为的理论理解主要是针对监狱或精神病院中没有神经发育障碍的男性。因此,缺乏证据表明当前理论在应用于智力残疾和/或自闭症成年人时的有效性。方法对13名患有智力和其他发育障碍的英国成年人进行了访谈,了解导致和围绕记录在案的纵火事件的情感、认知、行为和环境因素。访谈采用扎根理论方法进行分析。结果所得到的模型由四个阶段组成:(1)背景,(2)成年早期,(3)犯罪前时期,(4)犯罪和犯罪后时期。结论该模型解释了纵火的独特前兆,包括心理健康恶化、问题解决能力差和纵火的新动机。与其他犯罪链理论不同,犯罪后行为和认知的重要性得到了强调。
{"title":"A preliminary firesetting offence chain for adults with intellectual and other developmental disabilities","authors":"J. Collins, M. Barnoux, P. Langdon","doi":"10.3109/13668250.2022.2037186","DOIUrl":"https://doi.org/10.3109/13668250.2022.2037186","url":null,"abstract":"ABSTRACT Background The theoretical understanding of firesetting behaviour has predominantly been developed with men in prisons or psychiatric hospitals without neurodevelopmental disabilities. Consequently, there is a lack of evidence regarding the validity of current theory when applied to adults with intellectual disabilities and/or autism. Method Thirteen adults in England with intellectual and other developmental disabilities were interviewed about the affective, cognitive, behavioural, and contextual factors leading up to and surrounding a recorded firesetting incident. Interviews were analysed using a Grounded Theory approach. Results The resulting model consists of four phases: (1) background, (2) early adulthood, (3) pre-offence period, and (4) offence, and post offence period. Conclusion The model accounts for unique precursors to firesetting including mental health deterioration, poor problem solving, and new motivations for firesetting. Unlike other offence chain theories, the significance of post-offence behaviour and cognitions are highlighted.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"146 - 160"},"PeriodicalIF":1.3,"publicationDate":"2022-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48011574","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 4
The online lives of adolescents with mild or borderline intellectual disabilities in the Netherlands: Care staff knowledge and perceptions 荷兰轻度或边缘性智障青少年的网络生活:护理人员的知识和看法
IF 1.3 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-03-06 DOI: 10.3109/13668250.2021.2004635
R. de Groot, H. Kaal, W. Stol
ABSTRACT Background This study reports the findings from a Dutch study, exploring care workers’ knowledge and perceptions of the online lives of adolescents with mild or borderline intellectual disabilities. Method Using an inductive research design 33 semi-structured interviews were conducted with care workers. Results Three themes were derived from the data: (1) The clients’ online world is largely unknown to care workers. (2) The online world is a gateway to an inclusive and connected life. (3) The online world is a dangerous and challenging place. Conclusion Care workers have limited knowledge of clients’ online lives. Care workers show ambivalence about the good and bad of the Internet for their clients. They acknowledge the possibilities of the Internet but mostly perceive it as a place of risk and challenge. Paradoxically, care workers report little experiences of incidents of online risks. Perceptional processes might help explain why this paradox exists.
摘要背景本研究报告了荷兰一项研究的结果,该研究探讨了护理人员对轻度或边缘智力残疾青少年网络生活的知识和看法。方法采用归纳研究设计,对护理人员进行了33次半结构化访谈。结果从数据中得出三个主题:(1)护理人员在很大程度上不了解客户的网络世界。(2) 网络世界是通往包容和互联生活的门户。(3) 网络世界是一个充满危险和挑战的地方。结论护理人员对客户的网络生活了解有限。护理人员对互联网对客户的好处和坏处表现出矛盾心理。他们承认互联网的可能性,但大多认为它是一个充满风险和挑战的地方。矛盾的是,护理人员很少报告网络风险事件。感知过程可能有助于解释为什么存在这种悖论。
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引用次数: 3
Self-advocate perspectives on COVID-19 in Urban Los Angeles: impacts on autonomy and access to supports 洛杉矶城市对COVID-19的自我倡导观点:对自主性和获得支持的影响
IF 1.3 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-03-06 DOI: 10.3109/13668250.2022.2028379
Robin L Dodds, Karolyn J. Maurer, L. Montgomery, Sean Cutting, Courtney Jilek
ABSTRACT Background Adults with disabilities in low-income communities of colour are disproportionately affected by the COVID-19 pandemic. Method We interviewed 14 self-advocates with intellectual and developmental disabilities (IDD) to learn more about their experiences during the peak of infections, hospitalisations, and deaths in Los Angeles, between December 2020 and March 2021. Results A modified grounded theory analysis revealed major themes of family, making choices & going places, formal services, and employment, which are discussed in relation to the participants' sense of autonomy and access to goods and services. Conclusions Implications for practice include increased access and training for adults with IDD in computer skills to maintain social engagement with video conferencing, and to utilise grocery delivery services.
背景:低收入有色人种社区的残疾成年人受到COVID-19大流行的影响不成比例。方法:我们采访了14名智力和发育障碍(IDD)的自我倡导者,以了解他们在2020年12月至2021年3月期间洛杉矶感染、住院和死亡高峰期间的经历。结果修正的扎根理论分析揭示了家庭、选择和出行、正规服务和就业等主题,并讨论了这些主题与参与者的自主意识和获得商品和服务的关系。对实践的影响包括增加对IDD成人计算机技能的获取和培训,以通过视频会议保持社会参与,并利用食品杂货配送服务。
{"title":"Self-advocate perspectives on COVID-19 in Urban Los Angeles: impacts on autonomy and access to supports","authors":"Robin L Dodds, Karolyn J. Maurer, L. Montgomery, Sean Cutting, Courtney Jilek","doi":"10.3109/13668250.2022.2028379","DOIUrl":"https://doi.org/10.3109/13668250.2022.2028379","url":null,"abstract":"ABSTRACT Background Adults with disabilities in low-income communities of colour are disproportionately affected by the COVID-19 pandemic. Method We interviewed 14 self-advocates with intellectual and developmental disabilities (IDD) to learn more about their experiences during the peak of infections, hospitalisations, and deaths in Los Angeles, between December 2020 and March 2021. Results A modified grounded theory analysis revealed major themes of family, making choices & going places, formal services, and employment, which are discussed in relation to the participants' sense of autonomy and access to goods and services. Conclusions Implications for practice include increased access and training for adults with IDD in computer skills to maintain social engagement with video conferencing, and to utilise grocery delivery services.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"47 1","pages":"339 - 352"},"PeriodicalIF":1.3,"publicationDate":"2022-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44661389","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 2
The showcase of special education in Turkey: Guidance and research centres 土耳其特殊教育的展示:指导和研究中心
IF 1.3 4区 医学 Q1 EDUCATION, SPECIAL Pub Date : 2022-02-24 DOI: 10.3109/13668250.2021.2011173
Muhammed A. Karal, Neslihan Unluol Unal
ABSTRACT Background Identifying the students with intellectual disabilities and deciding the required services would not be sufficient without parental involvement. The purpose of this study was to understand the perspectives of the parents of students with intellectual disabilities about the Guidance and Research Centres (GRCs) and reveal the parents’ experiences at the GRCs. Method In this qualitative study, unstructured interviews were conducted. Twenty-one parents who had a child with an intellectual disability were asked about their experiences during their visit to the GRCs. Content analysis with an inductive approach was used to analyse the data. Findings Most of the parents reported problems regarding educational evaluation, and communication and collaboration. The participants provided their suggestions about evaluation procedures, professionalism, and institutional practices. Conclusions The problems at the GRCs must be considered by educators and other stakeholders to better provide educational evaluation, support services, and guidance to the students and their parents.
摘要背景没有父母的参与,识别智障学生并决定所需的服务是不够的。本研究的目的是了解智障学生家长对指导和研究中心(GRC)的看法,并揭示家长在GRC的经历。方法本研究采用非结构化访谈方法。21名有智力残疾孩子的父母在访问GRC期间被问及他们的经历。内容分析采用归纳法对数据进行分析。调查结果大多数家长报告在教育评估、沟通和协作方面存在问题。与会者就评估程序、专业精神和机构实践提出了建议。结论教育工作者和其他利益相关者必须考虑GRC存在的问题,以便更好地为学生及其家长提供教育评估、支持服务和指导。
{"title":"The showcase of special education in Turkey: Guidance and research centres","authors":"Muhammed A. Karal, Neslihan Unluol Unal","doi":"10.3109/13668250.2021.2011173","DOIUrl":"https://doi.org/10.3109/13668250.2021.2011173","url":null,"abstract":"ABSTRACT Background Identifying the students with intellectual disabilities and deciding the required services would not be sufficient without parental involvement. The purpose of this study was to understand the perspectives of the parents of students with intellectual disabilities about the Guidance and Research Centres (GRCs) and reveal the parents’ experiences at the GRCs. Method In this qualitative study, unstructured interviews were conducted. Twenty-one parents who had a child with an intellectual disability were asked about their experiences during their visit to the GRCs. Content analysis with an inductive approach was used to analyse the data. Findings Most of the parents reported problems regarding educational evaluation, and communication and collaboration. The participants provided their suggestions about evaluation procedures, professionalism, and institutional practices. Conclusions The problems at the GRCs must be considered by educators and other stakeholders to better provide educational evaluation, support services, and guidance to the students and their parents.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"47 1","pages":"318 - 328"},"PeriodicalIF":1.3,"publicationDate":"2022-02-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46613670","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 2
期刊
Journal of Intellectual & Developmental Disability
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