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Exploring Caregiver Perceptions of Post-High School Employment Experiences Among Young Adults With Down Syndrome. 探索照顾者对唐氏综合症年轻人高中毕业后就业经历的看法。
IF 1.8 3区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2023-04-01 DOI: 10.1352/1934-9556-61.2.158
Marie Moore Channell, Susan J Loveall, Meghan M Burke

This qualitative study explored employment experiences and perceived satisfaction of young adults with Down syndrome (DS) who recently exited high school, as reported by their caregivers (n = 101). We analyzed caregivers' open-ended responses about their young adults' type of employment (n = 52 were employed) and identified themes associated with reported satisfaction (for both employed and unemployed). Natural supports were key to caregiver satisfaction; few opportunities for paid, community-based employment and long waiting lists for formal services were related to caregiver dissatisfaction. Job fit (e.g., hours, responsibilities, location), socialization opportunities, and independence were related to caregiver and perceived young adult (dis)satisfaction. These findings highlight unmet service needs, including assistance with finding a job that is the right fit for the individual with DS.

本定性研究探讨了刚从高中毕业的唐氏综合症(DS)年轻人的就业经历和感知满意度,根据他们的照顾者(n = 101)的报告。我们分析了照顾者关于其年轻人就业类型的开放式回答(n = 52被雇用),并确定了与报告满意度相关的主题(包括就业和失业)。自然支持是护理者满意度的关键;以社区为基础的有偿就业机会很少,正式服务的等待名单很长,这些都与照顾者的不满有关。工作适合度(如工作时间、职责、工作地点)、社交机会和独立性与照顾者和感知到的年轻人(不)满意度有关。这些发现突出了未满足的服务需求,包括帮助残疾人士找到最适合他们的工作。
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引用次数: 1
The Right to Science: Centering People With Intellectual Disability in the Process and Outcomes of Science. 科学权利:以智障人士为中心的科学过程与成果。
IF 1.8 3区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2023-04-01 DOI: 10.1352/1934-9556-61.2.172
Karrie A Shogren

The right to science has been identified in multiple human rights treaties; however, there has not been a clear framework for how governments or research organizations can advance this right particularly ensuring equitable engagement of people with intellectual disability (ID) in the process of scientific research. Although the feasibility and impacts of engaging people with ID in the process of science have been repeatedly demonstrated there remain systemic barriers including ableism, racism, and other systems of oppression that sustain inequities. Researchers in the ID field must take steps to dismantle systemic barriers and advance participatory approaches that advance equity in the process and outcomes of science.

科学权已在多个人权条约中得到确认;然而,对于政府或研究组织如何推进这一权利,特别是确保智力残疾者公平参与科学研究过程,还没有一个明确的框架。尽管在科学研究过程中让有身份识别的人参与的可行性和影响已经被反复证明,但仍然存在系统性障碍,包括残疾歧视、种族主义和其他压迫制度,这些制度维持了不平等。ID领域的科学家必须采取措施消除系统性障碍,推进参与性方法,促进科学过程和结果的公平性。
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引用次数: 3
"More Than a Paycheck": Parent Perspectives on Meaningful Work for Individuals With Intellectual and Developmental Disabilities. “不仅仅是薪水”:父母对智力和发育障碍人士有意义的工作的看法。
IF 1.8 3区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2023-04-01 DOI: 10.1352/1934-9556-61.2.145
Erik W Carter, Emily R Lanchak, Laura Guest, Elise D McMillan, Julie Lounds Taylor, Hannah Rowley

Increasing employment outcomes for individuals with intellectual and developmental disabilities (IDD) remains an enduring emphasis of research, policy, and practice. Parents are often primary partners in the pursuit of meaningful work for their family members with IDD. This qualitative study examined the views of 55 parents regarding the importance of this pursuit and the features of employment that matter most to them. Participants discussed a range of reasons they valued employment for their family members with IDD, including factors that extended beyond a paycheck. Likewise, they described an array of features that they considered to be important to their family member thriving in the workplace (e.g., inclusivity, match with interests, opportunities for growth). We offer recommendations for promoting integrated employment among families and conceptualizing employment outcomes within future research.

提高智力和发育障碍(IDD)个体的就业成果仍然是研究、政策和实践的长期重点。在为患有IDD的家庭成员寻找有意义的工作时,父母往往是主要的合作伙伴。这项定性研究调查了55位父母对这种追求的重要性和对他们最重要的就业特征的看法。参与者讨论了他们重视为患有IDD的家庭成员提供工作的一系列原因,包括工资以外的因素。同样,他们也描述了一系列他们认为对家庭成员在工作场所取得成功很重要的特征(例如,包容性、兴趣匹配、成长机会)。在未来的研究中,我们提出了促进家庭间综合就业和概念化就业结果的建议。
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引用次数: 0
Resúmenes al Español 英文摘要
3区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2023-03-30 DOI: 10.1352/1934-9556-61.2.180
Views Icon Views Article contents Figures & tables Video Audio Supplementary Data Peer Review Share Icon Share Facebook Twitter LinkedIn Email Tools Icon Tools Get Permissions Cite Icon Cite Search Site Citation Resúmenes al Español. Intellect Dev Disabil 1 April 2023; 61 (2): 180–181. doi: https://doi.org/10.1352/1934-9556-61.2.180 Download citation file: Ris (Zotero) Reference Manager EasyBib Bookends Mendeley Papers EndNote RefWorks BibTex toolbar search Search Dropdown Menu toolbar search search input Search input auto suggest Search
查看图标查看文章内容图和表视频音频补充数据同行评审共享图标共享Facebook Twitter LinkedIn电子邮件工具图标工具获得权限引用图标引用搜索网站引文Resúmenes al Español。智力发展障碍2023年4月1日;61(2): 180-181。doi: https://doi.org/10.1352/1934-9556-61.2.180下载引文文件:Ris (Zotero) Reference Manager EasyBib Bookends Mendeley Papers EndNote RefWorks BibTex工具栏搜索搜索下拉菜单工具栏搜索搜索输入搜索输入自动建议搜索
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引用次数: 0
Résumés en Français 法文摘要
3区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2023-03-30 DOI: 10.1352/1934-9556-61.2.178
Views Icon Views Article contents Figures & tables Video Audio Supplementary Data Peer Review Share Icon Share Facebook Twitter LinkedIn Email Tools Icon Tools Get Permissions Cite Icon Cite Search Site Citation Résumés en Français. Intellect Dev Disabil 1 April 2023; 61 (2): 178–179. doi: https://doi.org/10.1352/1934-9556-61.2.178 Download citation file: Ris (Zotero) Reference Manager EasyBib Bookends Mendeley Papers EndNote RefWorks BibTex toolbar search Search Dropdown Menu toolbar search search input Search input auto suggest Search
查看图标查看文章内容图表和表格视频音频补充数据同行评审分享图标分享Facebook Twitter LinkedIn电子邮件工具图标工具获得权限引用图标引用搜索网站引文rsamsumsams en franais。智力发展障碍2023年4月1日;61(2): 178-179。doi: https://doi.org/10.1352/1934-9556-61.2.178下载引文文件:Ris (Zotero) Reference Manager EasyBib Bookends Mendeley Papers EndNote RefWorks BibTex工具栏搜索搜索下拉菜单工具栏搜索搜索输入搜索输入自动建议搜索
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引用次数: 0
Resúmenes al Español. 英文摘要。
IF 1.8 3区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2023-03-30 DOI: 10.1352/1934-9556-55.2.122
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引用次数: 0
Service Use Patterns by Children With Down Syndrome in a Canadian Region. 加拿大地区唐氏综合症儿童的服务使用模式
IF 1.8 3区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2023-02-01 DOI: 10.1352/1934-9556-61.1.79
John D McLennan, Casey Fulford, Sophia Hrycko, Virginie Cobigo, Munazza Tahir

Children with Down syndrome require services from different sectors over time to optimize health and development, however, there is little information on longitudinal, cross-sector service use. Parents of children with Down syndrome attending a Canadian children's hospital participated in semistructured interviews covering life-time multiple sector service use. Five key service patterns were identified: (1) primary care physicians playing a circumscribed role; (2) a marked shift in public habilitative service receipt from development agencies in the preschool years to exclusive school delivery after school entry; (3) families obtaining private services to address gaps from public sector services; (4) a prominent role for parents to identify additional services; and (5) service variability as a function of timing and severity of medical comorbidity.

随着时间的推移,患有唐氏综合症的儿童需要来自不同部门的服务,以优化健康和发展,然而,关于纵向、跨部门服务使用情况的信息很少。在加拿大一家儿童医院就诊的唐氏综合症儿童的父母参加了涵盖终身多部门服务使用情况的半结构化访谈。结果表明:(1)初级保健医生的作用有限;(2)学前阶段的公共康复服务接收从发展机构向入学后的学校独家交付的显著转变;(3)家庭获得私人服务以弥补公共部门服务的不足;(4)家长在确定额外服务方面发挥重要作用;(5)服务变异性作为时间和医疗共病严重程度的函数。
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引用次数: 0
An Examination of Support Needs, Supports, and Outcomes for People With Intellectual and Developmental Disabilities. 智力和发育障碍者的支持需求、支持和结果的检查。
IF 1.8 3区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2023-02-01 DOI: 10.1352/1934-9556-61.1.65
Parthenia Dinora, Seb M Prohn, Matthew Bogenschutz, Michael D Broda, Sarah Lineberry, Angela West

Researchers used a merged dataset to examine if more resources were expended on those with greater support needs and if support needs impacted personal outcomes when controlling for relevant personal and contextual factors. Results indicated that the amount of support a person receives had a direct relationship to their needs. However, we also found that people with the greatest needs had weaker personal outcomes suggesting that distribution of resources based on need may not result in equivalent outcomes. The authors suggest strategies at an individual and systems level to address the outcomes gap for people with the greatest support needs.

研究人员使用合并的数据集来检查是否有更多的资源花费在那些更需要支持的人身上,以及在控制相关的个人和环境因素时,支持需求是否会影响个人结果。结果表明,一个人得到的支持的数量与他们的需求有直接的关系。然而,我们也发现有最大需求的人的个人结果较弱,这表明基于需求的资源分配可能不会产生相同的结果。作者提出了个人和系统层面的策略,以解决最需要支持的人的结果差距。
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引用次数: 0
The Role of Information and Knowledge in COVID-19 Vaccination Among People With Intellectual and Developmental Disabilities and Their Families. 信息和知识在智力和发育障碍者及其家庭COVID-19疫苗接种中的作用
IF 1.8 3区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2023-02-01 DOI: 10.1352/1934-9556-61.1.16
Sarah Lineberry, Matthew Bogenschutz, Parthenia Dinora, Kara Ayers
People with intellectual and developmental disabilities (IDD) may be at an increased risk of severe illness and death from COVID-19. This article examines the role of information and knowledge in COVID-19 vaccine uptake for people with IDD and their families. We developed a survey about COVID-19 vaccine uptake, confidence, and knowledge for people with IDD and their families. COVID-19 vaccine uptake was associated with higher self-reported knowledge about the vaccine, learning about the vaccine from one's doctor, and social media use. Qualitative results reflected the importance of trusted relationships with medical providers in vaccination.
患有智力和发育障碍(IDD)的人患COVID-19严重疾病和死亡的风险可能更高。本文探讨了信息和知识在IDD患者及其家人接种COVID-19疫苗中的作用。我们开展了一项关于IDD患者及其家人的COVID-19疫苗摄取、信心和知识的调查。COVID-19疫苗接种与自我报告的疫苗知识水平较高、从医生那里了解疫苗以及社交媒体使用有关。定性结果反映了在疫苗接种中与医疗提供者建立信任关系的重要性。
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引用次数: 2
Views of Speech-Language Pathologists on Telepractice for Children Who Use Augmentative and Alternative Communication. 语言病理学家对使用增强和替代交流的儿童远程练习的看法。
IF 1.8 3区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2023-02-01 DOI: 10.1352/1934-9556-61.1.31
Elizabeth E Biggs, Sarah N Douglas, Michelle C S Therrien, Melinda R Snodgrass

Telepractice has become increasingly utilized in disability services, particularly with recent and ongoing measures to slow the spread of the novel coronavirus (COVID-19). In this study, 361 speech-language pathologists (SLPs) responded to a national, web-based survey about their views on utilizing telepractice with children aged 3 to 21 who used aided augmentative and alternative communication (AAC), such as picture symbols or speech-generating devices. The views of SLPs varied, and SLPs who received training on AAC telepractice within the last 12 months had more positive views about telepractice than those who did not. Several factors were associated with when and how SLPs thought telepractice was beneficial to serve children who use aided AAC, including SLPs' foundational perspectives about telepractice, service delivery options, considerations related to the child and family, and broader resources and constraints.

远程医疗越来越多地用于残疾人服务,特别是最近和正在采取措施减缓新型冠状病毒(COVID-19)的传播。在这项研究中,361名言语语言病理学家(slp)参与了一项全国性的基于网络的调查,调查内容是关于他们对使用辅助辅助和替代交流(AAC)(如图片符号或语音生成设备)的3至21岁儿童进行远程练习的看法。在过去12个月内接受过AAC远程实践培训的slp对远程实践的看法比没有接受过培训的slp对远程实践的看法更积极。有几个因素与slp何时以及如何认为远程实践有利于为使用辅助AAC的儿童提供服务有关,包括slp对远程实践的基本观点、服务提供选择、与儿童和家庭有关的考虑以及更广泛的资源和限制。
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Intellectual and Developmental Disabilities
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