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The Role of Journal Editors in Implementing Equity-Focused Research. 期刊编辑在实施公平研究中的作用。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2023-09-01 DOI: 10.1352/1944-7558-128.5.386
Colleen A Thoma, LaRon A Scott
{"title":"The Role of Journal Editors in Implementing Equity-Focused Research.","authors":"Colleen A Thoma, LaRon A Scott","doi":"10.1352/1944-7558-128.5.386","DOIUrl":"10.1352/1944-7558-128.5.386","url":null,"abstract":"<p><p>We respond to the recommendations made by Kover and Abbeduto in their article, \"Toward Equity in Research on Intellectual and Developmental Disabilities,\" through the discussion of what journal editors should be considering in advancing equitable processes for research with individuals with intellectual and developmental disabilities (IDD). We provide practical suggestions from our experience as co-editors in promoting diversity in research partnerships with people with IDD.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"128 5","pages":"386-387"},"PeriodicalIF":2.1,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10111004","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
Leisure Participation of Autistic Adults: An Ecological Momentary Assessment Feasibility Study. 自闭症成年人的休闲参与：一项生态瞬时评估的可行性研究。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2023-07-01 DOI: 10.1352/1944-7558-128.4.319
Wei Song, Linda Zheng, Renáta Tichá, Brian Abery, Viann N Nguyen-Feng
{"title":"Leisure Participation of Autistic Adults: An Ecological Momentary Assessment Feasibility Study.","authors":"Wei Song,&nbsp;Linda Zheng,&nbsp;Renáta Tichá,&nbsp;Brian Abery,&nbsp;Viann N Nguyen-Feng","doi":"10.1352/1944-7558-128.4.319","DOIUrl":"10.1352/1944-7558-128.4.319","url":null,"abstract":"<p><p>Autistic adults participate less and express lower satisfaction in leisure activities than nonautistic adults, although literature is limited. The multifaceted nature of leisure participation makes it challenging to measure, with most measures being retrospective. Ecological momentary assessments (EMA) can reduce recall bias. This pilot study assessed the feasibility and acceptability of EMA among autistic adults. Participants (N = 40) were recruited via email and online. After completing a baseline interview, participants were asked to complete a once-daily survey for 30 days, in which they received survey links through a text messaging smartphone app. Surveys asked participants to report whether they participated in any leisure activities during the day, their level of enjoyment, with whom they interacted, and where they participated. The EMA appeared feasible in this sample, as participants completed the daily survey on average 27.05 (SD = 3.92) days. Regarding acceptability, most agreed that survey timing was convenient, that it was easy to enter responses and answer questions daily, and that they had enough response time. Overall, this study supports the use of EMA methodology among autistic adults. Future research should follow and improve upon these EMA data collection practices to examine daily behavior and well-being among autistic adults.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"128 4","pages":"319-333"},"PeriodicalIF":2.1,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10209124","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
Parenting Styles and Practices in Enhancing Self-Determination of Children With Intellectual and Developmental Disabilities. 增强智力和发育障碍儿童自主性的育儿方式和实践。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2023-07-01 DOI: 10.1352/1944-7558-128.4.282
Bekir F Meral, Michael L Wehmeyer, Susan B Palmer, Anil B Ruh, Engin Yilmaz
{"title":"Parenting Styles and Practices in Enhancing Self-Determination of Children With Intellectual and Developmental Disabilities.","authors":"Bekir F Meral,&nbsp;Michael L Wehmeyer,&nbsp;Susan B Palmer,&nbsp;Anil B Ruh,&nbsp;Engin Yilmaz","doi":"10.1352/1944-7558-128.4.282","DOIUrl":"10.1352/1944-7558-128.4.282","url":null,"abstract":"<p><p>Parenting styles and practices are crucial in promoting the self-determination of children. The purpose of the current study was to investigate the role of parenting styles and practices in enhancing the self-determination of children with/without intellectual and developmental disabilities (IDD). The present study was carried out with a sample of 243 parents of children with/without IDD in Türkiye (Turkey). The results indicated that an authoritative parenting style and autonomy-supportive parenting practices positively affect the degree of child self-determination, whereas permissive and overprotective parenting practices may limit child opportunities in fostering self-determination. The study results also showed that urbanization, higher income, and higher education level of parents positively impacted the degree of child self-determination. Parents of typically developing children reported higher levels of overall self-determination for their typically developing children when compared with children with intellectual disability and autism spectrum disorder. On the other hand, parents of children with mild disabilities reported a higher level of self-determination than both children with moderate and severe disabilities. The results were discussed within the cultural context of the current sample.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"128 4","pages":"282-301"},"PeriodicalIF":2.1,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10203261","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
Healthcare and Behavior Changes for Adults With Down Syndrome 1-Year Into COVID-19. 新冠肺炎后1年唐氏综合症成年人的医疗保健和行为变化。
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2023-07-01 DOI: 10.1352/1944-7558-128.4.273
Eric Rubenstein, Nichole Kyprianou, Prisha Sujin Kumar, Anna-Mariya Kriova, Alexis Sokoloff, Hampus Hillerstrom, James Hendrix
{"title":"Healthcare and Behavior Changes for Adults With Down Syndrome 1-Year Into COVID-19.","authors":"Eric Rubenstein, Nichole Kyprianou, Prisha Sujin Kumar, Anna-Mariya Kriova, Alexis Sokoloff, Hampus Hillerstrom, James Hendrix","doi":"10.1352/1944-7558-128.4.273","DOIUrl":"10.1352/1944-7558-128.4.273","url":null,"abstract":"<p><p>Individuals with Down syndrome (DS) have been disproportionately harmed by the COVID-19 pandemic and may have been more likely to have sacrificed opportunity and activity to avoid potential exposures. Our objective was to describe the experience one to one and half years into the COVID-19 pandemic for adults with DS, as reported by their caregivers in an online survey conducted between April 2021 and September of 2021. In our sample of 438 adults with DS, caregivers reported that adults with DS lost activities, struggled with employment, had negative behavioral changes, lost skills, and developed more mental health conditions. For adults with DS, one in five caregivers reported less healthcare usage, one in four reported delayed routine care, and 86.5% reported lost activities. As the pandemic continues, targeted support for adults with DS is needed to prevent further skill loss and mental health conditions.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"128 4","pages":"273-281"},"PeriodicalIF":1.9,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10512186/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10092534","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
4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2023-07-01 DOI: 10.1352/1944-7558-128.4.346
{"title":"Resúmenes al Español","authors":"","doi":"10.1352/1944-7558-128.4.346","DOIUrl":"https://doi.org/10.1352/1944-7558-128.4.346","url":null,"abstract":"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. Am J Intellect Dev Disabil 1 July 2023; 128 (4): 346–347. doi: https://doi.org/10.1352/1944-7558-128.4.346 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","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"105 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135568412","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
Vineland-3 Measurement Non-Invariance in Children With and Without Intellectual and Developmental Disabilities. Vineland-3测量在有和没有智力和发育障碍的儿童中的非恒定性。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2023-07-01 DOI: 10.1352/1944-7558-128.4.334
Maryellen Brunson McClain, Sarah E Schwartz, Jac'lyn Bera, Ryan L Farmer, Sarfaraz Serang, Bryn Harris, Megan E Golson
{"title":"Vineland-3 Measurement Non-Invariance in Children With and Without Intellectual and Developmental Disabilities.","authors":"Maryellen Brunson McClain,&nbsp;Sarah E Schwartz,&nbsp;Jac'lyn Bera,&nbsp;Ryan L Farmer,&nbsp;Sarfaraz Serang,&nbsp;Bryn Harris,&nbsp;Megan E Golson","doi":"10.1352/1944-7558-128.4.334","DOIUrl":"10.1352/1944-7558-128.4.334","url":null,"abstract":"<p><p>Measurement of adaptive skills is important in the diagnosis, intervention planning, and progress monitoring of children with intellectual and developmental disabilities (IDD). Thus, ensuring accurate measurement, including measurement invariance, across children with and without IDD is critical. In this study, we evaluate the measurement invariance using multigroup confirmatory factor analysis (MG-CFA) of the Vineland-3 Comprehensive Interview (CIF) across children ages 6-21 years with and without IDD (N = 1,192) using archival data. Results showed that the Vineland-3 CIF exhibits configural invariance but may show some metric non-invariance in children with and without IDD. Suggestions for using the Vineland-3 CIF in this population are provided and future research and measure development needs are discussed.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"128 4","pages":"334-343"},"PeriodicalIF":2.1,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10203262","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
Social Anxiety in Neurodevelopmental Disorders: The Case of Fragile X Syndrome. 神经发育障碍的社交焦虑：脆性X综合征病例。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2023-07-01 DOI: 10.1352/1944-7558-128.4.302
Hayley Crawford
{"title":"Social Anxiety in Neurodevelopmental Disorders: The Case of Fragile X Syndrome.","authors":"Hayley Crawford","doi":"10.1352/1944-7558-128.4.302","DOIUrl":"10.1352/1944-7558-128.4.302","url":null,"abstract":"<p><p>Despite significant advances in understanding and treating social anxiety in the general population, progress in this area lags behind for individuals with intellectual disability. Fragile X syndrome is the most common cause of inherited intellectual disability and is associated with an elevated prevalence rate of social anxiety. The phenotype of fragile X syndrome encompasses multiple clinically significant characteristics that are posed as risk markers for social anxiety in other populations. Here, evidence is reviewed that points to physiological hyperarousal, sensory sensitivity, emotion dysregulation, cognitive inflexibility, and intolerance of uncertainty as primary candidates for underlying mechanisms of heightened social anxiety in fragile X syndrome. A multilevel model is presented that provides a framework for future research to test associations.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"128 4","pages":"302-318"},"PeriodicalIF":2.1,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10203267","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: 3
Résumés en Français 法文摘要
4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2023-07-01 DOI: 10.1352/1944-7558-128.4.344
{"title":"Résumés en Français","authors":"","doi":"10.1352/1944-7558-128.4.344","DOIUrl":"https://doi.org/10.1352/1944-7558-128.4.344","url":null,"abstract":"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. Am J Intellect Dev Disabil 1 July 2023; 128 (4): 344–345. doi: https://doi.org/10.1352/1944-7558-128.4.344 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","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"108 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135568281","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
Health Effects of Sleep Quality in Premutation Carrier Mothers of Individuals With Fragile X Syndrome. 脆性 X 综合征患者的先突变携带者母亲睡眠质量对健康的影响。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2023-05-01 DOI: 10.1352/1944-7558-128.3.254
Robert S Dembo, Jinkuk Hong, Leann Smith DaWalt, Elizabeth M Berry-Kravis, Marsha R Mailick
{"title":"Health Effects of Sleep Quality in Premutation Carrier Mothers of Individuals With Fragile X Syndrome.","authors":"Robert S Dembo, Jinkuk Hong, Leann Smith DaWalt, Elizabeth M Berry-Kravis, Marsha R Mailick","doi":"10.1352/1944-7558-128.3.254","DOIUrl":"10.1352/1944-7558-128.3.254","url":null,"abstract":"<p><p>Sleep plays an integral role in supporting well-being, and sleep difficulties are common in mothers of individuals with developmental disabilities, including fragile X syndrome (FXS). This study assessed whether the effects of sleep quality on physical health and depression are exacerbated by genetic risk factors (CGG repeats) in FMR1 premutation carrier mothers of individuals with FXS. Poor sleep quality predicted a greater number of physical health conditions for mothers with CGG repeats in the mid-premutation range (90-110 repeats), but not for those in the lower (< 90 repeats) or higher (> 110 repeats) ends of the range. A significant association between poor sleep quality and maternal depressive symptoms was also observed, but there was no evidence that this effect varied by level of genetic vulnerability. This research extends our understanding of individual differences in the effects of sleep quality among mothers of individuals with FXS.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"128 3","pages":"254-268"},"PeriodicalIF":2.1,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10506164/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10300092","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
Rett Syndrome Behaviour Questionnaire in Children and Adults With Rett Syndrome: Psychometric Characterization and Revised Factor Structure. Rett综合征儿童和成人行为问卷:心理测量特征和修正的因素结构。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2023-05-01 DOI: 10.1352/1944-7558-128.3.237
Lindsay M Oberman, Helen Leonard, Jenny Downs, Rina Cianfaglione, Michelle Stahlhut, Jane L Larsen, Katherine V Madden, Walter E Kaufmann
{"title":"Rett Syndrome Behaviour Questionnaire in Children and Adults With Rett Syndrome: Psychometric Characterization and Revised Factor Structure.","authors":"Lindsay M Oberman,&nbsp;Helen Leonard,&nbsp;Jenny Downs,&nbsp;Rina Cianfaglione,&nbsp;Michelle Stahlhut,&nbsp;Jane L Larsen,&nbsp;Katherine V Madden,&nbsp;Walter E Kaufmann","doi":"10.1352/1944-7558-128.3.237","DOIUrl":"https://doi.org/10.1352/1944-7558-128.3.237","url":null,"abstract":"<p><p>Rett syndrome (RTT) is a severe neurodevelopmental disorder associated with multiple neurobehavioral abnormalities. The Rett Syndrome Behaviour Questionnaire (RSBQ) was developed for pediatric RTT observational studies. Because its application has expanded to adult and interventional studies, we evaluated the RSBQ's psychometric properties in six pediatric (n = 323) and five adult (n = 309) datasets. Total and General Mood subscale scores had good reliability. Clinical severity had no influence on RSBQ scores. Exploratory and confirmatory factor analyses yielded 6 pediatric and 7 adult clinically relevant and psychometrically strong factors including the original Breathing Problems and Fear/Anxiety subscales and the novel Emotional and Disruptive Behavior subscale composed of items from the original General Mood and Nighttime Behaviours subscales. The present findings support additional evaluations and improvements of an important RTT behavioral measure.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"128 3","pages":"237-253"},"PeriodicalIF":2.1,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9501700","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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