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Ajidd-American Journal on Intellectual and Developmental Disabilities最新文献

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Measurement Invariance in Intellectual and Developmental Disability Research. 智力和发育障碍研究中的测量不变性。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-05-01 DOI: 10.1352/1944-7558-129.3.191
Cristan Farmer, Aaron J Kaat, Michael C Edwards, Luc Lecavalier
{"title":"Measurement Invariance in Intellectual and Developmental Disability Research.","authors":"Cristan Farmer, Aaron J Kaat, Michael C Edwards, Luc Lecavalier","doi":"10.1352/1944-7558-129.3.191","DOIUrl":"10.1352/1944-7558-129.3.191","url":null,"abstract":"<p><p>Measurement invariance (MI) is a psychometric property of an instrument indicating the degree to which scores from an instrument are comparable across groups. In recent years, there has been a marked uptick in publications using MI in intellectual and developmental disability (IDD) samples. Our goal here is to provide an overview of why MI is important to IDD researchers and to describe some challenges to evaluating it, with an eye towards nudging our subfield into a more thoughtful and measured interpretation of studies using MI.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 3","pages":"191-198"},"PeriodicalIF":2.1,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11095410/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140870305","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Resúmenes al Español. 英文摘要。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-05-01 DOI: 10.1352/1944-7558-129.3.244
{"title":"Resúmenes al Español.","authors":"","doi":"10.1352/1944-7558-129.3.244","DOIUrl":"https://doi.org/10.1352/1944-7558-129.3.244","url":null,"abstract":"","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 3","pages":"244-245"},"PeriodicalIF":2.1,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140861407","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: 0
Résumés en Français. 法文摘要。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-05-01 DOI: 10.1352/1944-7558-129.3.242
{"title":"Résumés en Français.","authors":"","doi":"10.1352/1944-7558-129.3.242","DOIUrl":"https://doi.org/10.1352/1944-7558-129.3.242","url":null,"abstract":"","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 3","pages":"242-243"},"PeriodicalIF":2.1,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140867538","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: 0
Improving Data Infrastructure for Person-Centered Outcomes Research on Intellectual and Developmental Disabilities. 改善以人为本的智力和发育障碍成果研究数据基础设施。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-05-01 DOI: 10.1352/1944-7558-129.3.231
Madjid Karimi, Rina Dhopeshwarkar, Frances Jiménez, Sofia Ryan, Emma Plourde
{"title":"Improving Data Infrastructure for Person-Centered Outcomes Research on Intellectual and Developmental Disabilities.","authors":"Madjid Karimi, Rina Dhopeshwarkar, Frances Jiménez, Sofia Ryan, Emma Plourde","doi":"10.1352/1944-7558-129.3.231","DOIUrl":"https://doi.org/10.1352/1944-7558-129.3.231","url":null,"abstract":"<p><p>Individuals with intellectual and developmental disabilities (IDD) continue to experience disparities in health and well-being despite improved provisions of person-centered care. Patient-centered outcomes research (PCOR) translates evidence into practice for meaningful outcomes. This piece describes findings from an environmental scan and stakeholder outreach to identify and prioritize opportunities to enhance IDD PCOR data infrastructure. These opportunities include developing a standardized research definition; advancing data standards for service systems; improving capture of IDD at point of care; developing standardized outcome measures; and encouraging Medicaid data use for IDD research. Within this piece, we discuss the implications of addressing data gaps for enhanced research. While the identified activities provide a path towards advancing IDD PCOR data infrastructure, collaborative efforts between government, researchers, and others are paramount.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 3","pages":"231-241"},"PeriodicalIF":2.1,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140854415","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: 0
Adults With IDD in Supported Accommodation During COVID-19 Lockdown: The Families' Perspective. 在 COVID-19 封锁期间住在辅助性住所的智障成人：家庭的视角。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-05-01 DOI: 10.1352/1944-7558-129.3.215
Carmit-Noa Shpigelman, Tal Araten-Bergman
{"title":"Adults With IDD in Supported Accommodation During COVID-19 Lockdown: The Families' Perspective.","authors":"Carmit-Noa Shpigelman, Tal Araten-Bergman","doi":"10.1352/1944-7558-129.3.215","DOIUrl":"https://doi.org/10.1352/1944-7558-129.3.215","url":null,"abstract":"<p><p>The present study aims to understand and describe family caregivers' perceptions and experiences regarding contact and relationships with their adult relatives with intellectual and developmental disabilities (IDD) living in supported accommodation during the COVID-19 lockdown. A qualitative phenomenological approach was applied in which 19 Israeli family caregivers (parents and siblings) were interviewed. Inductive thematic analysis revealed themes at the microsystem level (the resident, the caregiver, and their relationship), and at the mesosystem level (the caregivers' interactions with service providers and other residents' families). The findings highlight the pivotal role of family caregivers in times of uncertainty and the need to develop explicit policies and mechanisms to facilitate family engagement in the residents' lives.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 3","pages":"215-230"},"PeriodicalIF":2.1,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140867160","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: 0
CDKL5 Deficiency Disorder: Some Lessons Learned 20 Years After the First Description. CDKL5 缺乏症：首次描述 20 年后的一些经验教训。
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-03-01 DOI: 10.1352/1944-7558-129.2.101
Elia M Pestana Knight, Heather E Olson
{"title":"CDKL5 Deficiency Disorder: Some Lessons Learned 20 Years After the First Description.","authors":"Elia M Pestana Knight, Heather E Olson","doi":"10.1352/1944-7558-129.2.101","DOIUrl":"10.1352/1944-7558-129.2.101","url":null,"abstract":"<p><p>Loss of function variants in the Cyclin-dependent kinase-like 5 gene (CDKL5) causes CDKL5 deficiency disorder (CDD). Most cases of CDD are due to a de novo missense or truncating variants. The CDKL5 gene was discovered in 1998 as part of the genomic mapping of the chromosome Xp22 region that led to the discovery of the serine-threonine kinases STK9. Since then, there have been significant advancements in the description of the disease in humans, the understanding of the pathophysiology, and the management of the disease. There have been many lessons learned since the initial description of the condition in humans in 2003. In this article, we will focus on pathophysiology, clinical manifestations, with particular focus on seizures because of its relevance to the medical practitioners and researchers and guidelines for management. We finalize the manuscript with the voice of the parents and caregivers, as discussed with the 2019 meeting with the Food and Drug Administration.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 2","pages":"101-109"},"PeriodicalIF":1.9,"publicationDate":"2024-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11426386/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139974398","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Diagnostic Overshadowing of Psychological Disorders in People With Intellectual Disability: A Systematic Review. 智障人士心理障碍的诊断性掩盖：系统回顾
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-03-01 DOI: 10.1352/1944-7558-129.2.116
Kristin Dell'Armo, Marc J Tassé
{"title":"Diagnostic Overshadowing of Psychological Disorders in People With Intellectual Disability: A Systematic Review.","authors":"Kristin Dell'Armo, Marc J Tassé","doi":"10.1352/1944-7558-129.2.116","DOIUrl":"10.1352/1944-7558-129.2.116","url":null,"abstract":"<p><p>Diagnostic overshadowing is a bias in which symptoms of a psychological disorder are falsely attributed to a known diagnosis of intellectual disability. This systematic review evaluated all research on diagnostic overshadowing conducted to date, including dissertations and peer-reviewed journal articles. In total, 25 studies were included in this review. Findings suggest diagnostic overshadowing may not be as ubiquitous as originally believed, with one third of included studies finding no overshadowing. The quality of the evidence was graded as \"Low\" using the LEGEND tool, with common issues including outdated studies, analogue methodologies, small sample sizes and convenience samples, and inappropriate conducting or reporting of statistical analyses. Implications for the field and recommendations for future research are discussed.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 2","pages":"116-134"},"PeriodicalIF":1.9,"publicationDate":"2024-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139974399","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: 0
Language Skills Influence Transition Planning in Adolescents With Fragile X Syndrome. 语言技能影响脆性 X 综合征青少年的过渡规划。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-01-01 DOI: 10.1352/1944-7558-129.1.56
Olivia Boorom, Heather Fielding-Gebhardt, Shelley Bredin-Oja, Kandace Fleming, Rebecca E Swinburne Romine, Nancy Brady
{"title":"Language Skills Influence Transition Planning in Adolescents With Fragile X Syndrome.","authors":"Olivia Boorom, Heather Fielding-Gebhardt, Shelley Bredin-Oja, Kandace Fleming, Rebecca E Swinburne Romine, Nancy Brady","doi":"10.1352/1944-7558-129.1.56","DOIUrl":"10.1352/1944-7558-129.1.56","url":null,"abstract":"<p><p>Individuals with fragile X syndrome (FXS) and their parents have a range of experiences navigating the crucial transition period between adolescence and adulthood. Semistructured interviews of 47 mothers of adolescents with FXS (mean child age = 15.89 years) were analyzed to identify mothers' changing expectations during the adolescent period and parent goals related to work and postsecondary education. Mothers' work and education goals were explored in relation to child factors such as language skills and autism characteristics. Lower language skills were associated with lower likelihood of reporting vocational goals. Results suggest that adolescents with FXS with lower language ability are less likely to have vocational plans for adulthood during this critical period and may need greater transition planning assistance.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 1","pages":"56-72"},"PeriodicalIF":2.1,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10753924/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139040887","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Semi-Automatic Assessment of Vocalization Quality for Children With and Without Angelman Syndrome. 有和无天使人综合症儿童发声质量的半自动评估。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2023-11-01 DOI: 10.1352/1944-7558-128.6.425
Lisa R Hamrick, Amanda Seidl, Bridgette L Kelleher
{"title":"Semi-Automatic Assessment of Vocalization Quality for Children With and Without Angelman Syndrome.","authors":"Lisa R Hamrick, Amanda Seidl, Bridgette L Kelleher","doi":"10.1352/1944-7558-128.6.425","DOIUrl":"10.1352/1944-7558-128.6.425","url":null,"abstract":"<p><p>Automated methods for processing of daylong audio recordings are efficient and may be an effective way of assessing developmental stage for typically developing children; however, their utility for children with developmental disabilities may be limited by constraints of algorithms and the scope of variables produced. Here, we present a novel utterance-level processing (ULP) system that 1) extracts utterances from daylong recordings, 2) verifies automated speaker tags using human annotation, and 3) provides vocal maturity metrics unavailable through automated systems. Study 1 examines the reliability and validity of this system in low-risk controls (LRC); Study 2 extends the ULP to children with Angelman syndrome (AS). Results showed that ULP annotations demonstrated high coder agreement across groups. Further, ULP metrics aligned with language assessments for LRC but not AS, perhaps reflecting limitations of language assessments in AS. We argue that ULP increases accuracy, efficiency, and accessibility of detailed vocal analysis for syndromic populations.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"128 6","pages":"425-448"},"PeriodicalIF":2.1,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"50159240","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: 0
A Call-In for Allyship and Anti-Ableism in Intellectual Disability Research. 智障研究中同盟与反残障主义的呼唤。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2023-11-01 DOI: 10.1352/1944-7558-128.6.398
Katherine E McDonald, Ariel E Schwartz, Micah Fialka Feldman, Tia Nelis, Dora M Raymaker
{"title":"A Call-In for Allyship and Anti-Ableism in Intellectual Disability Research.","authors":"Katherine E McDonald, Ariel E Schwartz, Micah Fialka Feldman, Tia Nelis, Dora M Raymaker","doi":"10.1352/1944-7558-128.6.398","DOIUrl":"10.1352/1944-7558-128.6.398","url":null,"abstract":"<p><p>Provoked by decades of grassroots activism, anti-ableist work is underway to advance disability rights. Intellectual disability (ID) researchers can integrate these social changes into their work by interrogating and transforming the beliefs and practices that underpin ID research. We share actionable ideas to foster anti-ableism and allyship in ID research. These include: (1) Learn from and nurture long-term, mutual relationships with people with ID; (2) Amplify the voices of people with ID in institutional structures that influence research; (3) Infuse anti-ableist frameworks into our own research; and (4) Embody a career-long commitment to disability rights, reflexive practice, and growth.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"128 6","pages":"398-410"},"PeriodicalIF":2.1,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"50159234","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: 0
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