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Proxy Responses in Research on COVID-19 Among People With Intellectual and Developmental Disabilities. 智力和发育障碍人士 COVID-19 研究中的代理反应。
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-09-01 DOI: 10.1352/1944-7558-129.5.346
Sarah Lineberry, Matthew Bogenschutz, Michael Broda
{"title":"Proxy Responses in Research on COVID-19 Among People With Intellectual and Developmental Disabilities.","authors":"Sarah Lineberry, Matthew Bogenschutz, Michael Broda","doi":"10.1352/1944-7558-129.5.346","DOIUrl":"https://doi.org/10.1352/1944-7558-129.5.346","url":null,"abstract":"<p><p>Researchers and advocates have long called for improved research methods that better include people with intellectual and developmental disabilities (IDD), but challenges to doing so persist. Proxy responses are frequently used to circumvent some of these challenges, but may not fully capture the perspectives of people with IDD. The COVID-19 pandemic highlighted the possibility of consequences due to a lack of research about health outcomes for people with IDD, with documented disproportionate impact but little understanding about specific experiences for people with IDD. Using exploratory graph analysis (EGA) we explored the use of proxy responses on the COVID-19 Supplement of the National Core Indicators In-Person Survey. Findings suggest significant differences in response patterns between people who answered independently, via proxy, and with a mix of response types beyond what would be expected due to demographic differences in participants.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 5","pages":"346-361"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142094172","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
Chronic Health Conditions Among Adults With Intellectual and Developmental Disabilities in a State Medicaid System. 州医疗补助系统中智障和发育障碍成人的慢性健康状况。
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-09-01 DOI: 10.1352/1944-7558-129.5.331
Kiley J McLean, Lauren Bishop
{"title":"Chronic Health Conditions Among Adults With Intellectual and Developmental Disabilities in a State Medicaid System.","authors":"Kiley J McLean, Lauren Bishop","doi":"10.1352/1944-7558-129.5.331","DOIUrl":"https://doi.org/10.1352/1944-7558-129.5.331","url":null,"abstract":"<p><p>Despite a growing number of adults with intellectual and developmental disabilities (IDD) and documented risk for adverse outcomes as they age, little is known about the health and healthcare patterns of adults with different IDD throughout adulthood. This study uses Wisconsin Medicaid claims data to characterize health conditions among adults with IDD. Results indicate high prevalence of asthma, diabetes, heart disease, and hypertension. Heart disease rates were particularly high, having been observed among 39% of autistic adults, 64% of autistic adults with intellectual disability (ID), 67% of adults with Down syndrome, and 75% of adults with ID only. Given there are no known biological differences underlying increased morbidities among most people with IDD, developing inclusive prevention measures should be prioritized in future research.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 5","pages":"331-345"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142094157","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
Neurodevelopmental Outcomes of Pediatric Cardiac Extracorporeal Membrane Oxygenation Survivors With Central Cannulation. 使用中心插管的小儿体外膜肺氧合存活者的神经发育结果
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-09-01 DOI: 10.1352/1944-7558-129.5.377
Ozlem Saritas Nakip, Selman Kesici, Gokcen Duzgun Konuskan, Mutlu Uysal Yazici, Bahadır Konuskan, Benan Bayrakci
{"title":"Neurodevelopmental Outcomes of Pediatric Cardiac Extracorporeal Membrane Oxygenation Survivors With Central Cannulation.","authors":"Ozlem Saritas Nakip, Selman Kesici, Gokcen Duzgun Konuskan, Mutlu Uysal Yazici, Bahadır Konuskan, Benan Bayrakci","doi":"10.1352/1944-7558-129.5.377","DOIUrl":"https://doi.org/10.1352/1944-7558-129.5.377","url":null,"abstract":"<p><p>Extracorporeal life support, such as pediatric cardiac extracorporeal membrane oxygenation (ECMO), is associated with significant mortality and morbidity risk. This study evaluated cardiac ECMO survivors with central cannulation and found that 51.1% were discharged from the hospital. The study also revealed high rates of developmental delay (82.7%), motor dysfunction (58.8%), and cognitive dysfunction (70.6%) among survivors. No significant correlation was found between the duration of ECMO, age at ECMO, pre-ECMO maximum lactate levels, and cognitive scores. Participants with motor dysfunction were significantly younger (p = 0.04). PRISM scores of those with an abnormal developmental status were significantly higher (p = 0.03). Logistic regression analysis did not show a significantly increased risk. Factors such as age, disease severity, and ECMO itself were identified as potential contributors to neurodevelopmental delay.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 5","pages":"377-386"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142094171","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
Child and Family Predictors for Mastery Motivation in Children With Developmental Delays. 发育迟缓儿童掌握动机的儿童和家庭预测因素。
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-09-01 DOI: 10.1352/1944-7558-129.5.387
Pei-Jung Wang, Hua-Fang Liao, Li-Chiou Chen, Lin-Ju Kang, Lu Lu, Karen Caplovitz Barrett
{"title":"Child and Family Predictors for Mastery Motivation in Children With Developmental Delays.","authors":"Pei-Jung Wang, Hua-Fang Liao, Li-Chiou Chen, Lin-Ju Kang, Lu Lu, Karen Caplovitz Barrett","doi":"10.1352/1944-7558-129.5.387","DOIUrl":"https://doi.org/10.1352/1944-7558-129.5.387","url":null,"abstract":"<p><p>Motivation is a key factor for child development, but very few studies have examined child and family predictors of both child task and perceived motivation. Thus, the three aims of this 6-month longitudinal study in preschoolers with global developmental delays (GDD) were to explore: 1) differences between task and perceived motivation in cognitive domain; 2) differences among three domains of perceived motivation: cognitive, gross motor, and social; and 3) early child and family predictors of cognitive task motivation and the three domains of perceived motivation 6 months later. Results indicated that preschoolers with GDD showed higher cognitive task motivation than cognitive perceived motivation, and lower perceived cognitive motivation than the other two perceived motivation domains. Different child and family factors predicted cognitive task motivation and the three domains of perceived motivation. Practitioners should educate caregivers on how to observe children's motivation to enhance children's active participation.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 5","pages":"387-404"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142094156","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
Diffusion of the Shared Citizenship Paradigm: Strategies and Next Steps. 共同公民范例的传播：战略和下一步行动。
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-09-01 DOI: 10.1352/1944-7558-129.5.362
Ruth Luckasson, Robert L Schalock, Valerie J Bradley
{"title":"Diffusion of the Shared Citizenship Paradigm: Strategies and Next Steps.","authors":"Ruth Luckasson, Robert L Schalock, Valerie J Bradley","doi":"10.1352/1944-7558-129.5.362","DOIUrl":"https://doi.org/10.1352/1944-7558-129.5.362","url":null,"abstract":"<p><p>The field of disabilities is being challenged to adopt a paradigm that can be used to guide the transformation of services, supports, and research practices to ensure and enhance the personal autonomy, rights, and community inclusion of people with disabilities. This article describes strategies associated with the systematic diffusion and sustainability of an innovation such as the emerging Shared Citizenship Paradigm (SCP), which has the potential to guide the transformation. The systematic diffusion process incorporates five components: knowledge, persuasion, decision, implementation, and confirmation. The systematic process also addresses the risks of dissonance, backlash, unintended consequences, and backsliding that can emerge when the sustainability of a paradigm is not supported. Throughout the article, we stress that meaningful change in organizations and systems requires use of a paradigm such as the SCP and its principles and foundation pillars to guide the change, and a systematic process such as that described in this article to bring about and sustain the change.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 5","pages":"362-376"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142094169","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
Impact of Educational Placement on the Goal Attainment Outcomes of K-6 Students With Complex Needs Across Academic and Social-Behavioral-Communication Domains. 教育安置对学业和社交-行为-沟通领域有复杂需求的幼儿园至 6 年级学生实现目标结果的影响》（Educational Placement on Goal Attainment Outcomes of K-6 Students With Complex Needs Across Academic and Social-Behavioral-Communication Domains）。
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-09-01 DOI: 10.1352/1944-7558-129.5.405
Karrie A Shogren, Tyler A Hicks, Jennifer A Kurth
{"title":"Impact of Educational Placement on the Goal Attainment Outcomes of K-6 Students With Complex Needs Across Academic and Social-Behavioral-Communication Domains.","authors":"Karrie A Shogren, Tyler A Hicks, Jennifer A Kurth","doi":"10.1352/1944-7558-129.5.405","DOIUrl":"https://doi.org/10.1352/1944-7558-129.5.405","url":null,"abstract":"<p><p>Students with complex support needs have intense and frequent support needs for learning and participating across multiple domains. Addressing those needs in a comprehensive manner is the purpose of special education, which is accomplished through instructional and Individualized Education Program (IEP) goals. Yet simply setting goals is insufficient; to facilitate positive student outcomes, there is an inherent expectation that students will meet those goals to achieve their potential. Understanding factors that impact variability in goal attainment is essential to this purpose. This includes the extent to which variability in goal attainment is explained by factors varying within students (e.g., goal domains being targeted) or by factors varying between students (e.g., education placement, overall intensity of student support needs). Using Bayesian multi-level modeling analysis to examine the instructional goals of 53 elementary students with complex support needs, we found that 75% of variability in goal attainment exists within student's goals. However, 25% of variability is explained by factors that vary across students-in this case, educational placement and overall intensity of support needs. We conclude with recommendations for research and practice aimed at enhancing goal attainment for students with complex support needs.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 5","pages":"405-419"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142094170","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
Reducing Depressive Symptoms Among Latina Mothers of Autistic Children: A Randomized Controlled Trial. 减少拉美裔自闭症儿童母亲的抑郁症状：随机对照试验
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-07-01 DOI: 10.1352/1944-7558-129.4.294
Amy Pei-Lung Yu, Weiwen Zeng, Kristina Lopez, Sandy Magaña
{"title":"Reducing Depressive Symptoms Among Latina Mothers of Autistic Children: A Randomized Controlled Trial.","authors":"Amy Pei-Lung Yu, Weiwen Zeng, Kristina Lopez, Sandy Magaña","doi":"10.1352/1944-7558-129.4.294","DOIUrl":"10.1352/1944-7558-129.4.294","url":null,"abstract":"<p><p>This study examines the intervention effect of a culturally tailored parent education program in reducing depressive symptoms among Latina mothers of autistic children. In this two-site randomized waitlist-control study (n = 109 mother-child dyads), a peer-to-peer mentoring (promotora) model was used to deliver an intervention that was designed to increase mothers' self-efficacy and use of evidence-based strategies. We assessed mothers' depressive symptom (CES-D) scores at three time points and used linear mixed models to determine whether their scores significantly changed from baseline to postintervention (Time 2) and at 4 months postintervention (Time 3). Results show that mothers in the intervention group reported a significant decrease in mean depressive symptom scores at Time 2 and that the effect was maintained at Time 3 with intermediate to medium effect sizes. There were no differences in results across sites. Findings suggest that Parents Taking Action, a culturally tailored intervention led by peer mentors, showed a significant effect both immediately after the intervention and 4 months postintervention in reducing depressive symptoms among Latina mothers of autistic children.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 4","pages":"294-307"},"PeriodicalIF":1.9,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141452097","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
Understanding Natural Supports in Diverse Adults With Intellectual and Developmental Disabilities Across Life Domains. 了解不同智障和发育障碍成人在不同生活领域的自然支持。
IF 16.4 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-07-01 DOI: 10.1352/1944-7558-129.4.247
Kelli A Sanderson, Meghan M Burke, Robert M Hodapp
{"title":"Understanding Natural Supports in Diverse Adults With Intellectual and Developmental Disabilities Across Life Domains.","authors":"Kelli A Sanderson, Meghan M Burke, Robert M Hodapp","doi":"10.1352/1944-7558-129.4.247","DOIUrl":"10.1352/1944-7558-129.4.247","url":null,"abstract":"<p><p>Although natural supports benefit individuals with intellectual and developmental disabilities (IDD), little is known about natural support provided within specific life domains or how race/ethnicity or support from professionals impacts the extent of natural support one receives. In this study, 518 parents of adults with IDD responded to a national survey about natural supports, including who provides support, the number of supporters, and variables that predict natural supports. Family most often provided support, although professionals and family friends were frequent supporters in several domains. Natural support was most extensive in health, least extensive in employment and housing. Individuals with IDD who regularly participated in daytime activities and/or identified as Black had more extensive natural support. Implications are discussed.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 4","pages":"247-262"},"PeriodicalIF":16.4,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141452099","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
The Behavioral Profile of SYNGAP1-Related Intellectual Disability. 与 SYNGAP1 相关的智力障碍的行为特征。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-05-01 DOI: 10.1352/1944-7558-129.3.199
Damien Wright, Aisling Kenny, Lindsay A M Mizen, Andrew G McKechanie, Andrew C Stanfield
{"title":"The Behavioral Profile of SYNGAP1-Related Intellectual Disability.","authors":"Damien Wright, Aisling Kenny, Lindsay A M Mizen, Andrew G McKechanie, Andrew C Stanfield","doi":"10.1352/1944-7558-129.3.199","DOIUrl":"https://doi.org/10.1352/1944-7558-129.3.199","url":null,"abstract":"<p><p>This study aimed to describe the behavioral profile of individuals with SYNGAP1-ID. Parents/carers of 30 individuals aged 3-18 years old with a diagnosis of SYNGAP1-ID and 21 typically developing individuals completed the Vineland-3 Adaptive Behavior Scale and the Child Behavior Checklist. We found that those with SYNGAP1-ID showed fewer adaptive behaviors and higher levels of internalizing and externalizing behaviors across almost all domains compared to typically developing controls. There was some evidence that these differences were greatest in older children, and more apparent in those with co-occuring epilepsy. This characterization of the phenotype of SYNGAP1-ID significantly aids our understanding of the behavioral profile of this population and is a step towards the development of tailored interventions.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 3","pages":"199-214"},"PeriodicalIF":2.1,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140866069","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
Specificity of Early Childhood Hyperphagia Profiles in Neurogenetic Conditions. 神经遗传性疾病中幼儿食欲过多特征的特异性。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-05-01 DOI: 10.1352/1944-7558-129.3.175
Sara M Andrews, Anita A Panjwani, Sarah Nelson Potter, Lisa R Hamrick, Anne C Wheeler, Bridgette L Kelleher
{"title":"Specificity of Early Childhood Hyperphagia Profiles in Neurogenetic Conditions.","authors":"Sara M Andrews, Anita A Panjwani, Sarah Nelson Potter, Lisa R Hamrick, Anne C Wheeler, Bridgette L Kelleher","doi":"10.1352/1944-7558-129.3.175","DOIUrl":"https://doi.org/10.1352/1944-7558-129.3.175","url":null,"abstract":"<p><p>Hyperphagia is highly penetrant in Prader-Willi syndrome (PWS) and has increasingly been reported in other neurogenetic conditions (NGC). The Hyperphagia Questionnaire (HQ) was completed by caregivers of 4-8-year-olds with PWS (n = 17), Angelman syndrome (AS; n = 22), Williams syndrome (WS; n = 25), or low-risk controls (LRC; n = 35). All NGC groups were significantly elevated in HQ Total and Behavior scores compared to LRC. Only AS and WS were significantly elevated in the Drive domain, and only PWS in the Severity domain. After controlling for externalizing behavior, HQ Total scores were higher for PWS relative to other groups. Hyperphagic symptoms may not differentiate PWS from other NGCs in early childhood. However, hyperphagic phenotypes may be most severe in PWS. Further investigation of these profiles may inform etiology and syndrome-specific treatments.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 3","pages":"175-190"},"PeriodicalIF":2.1,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140867281","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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