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Longitudinally Predicting Behavioral Challenges From Executive Functioning in Youth With Down Syndrome. 从执行功能纵向预测唐氏综合症青少年的行为挑战。
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-03-01 DOI: 10.1352/1944-7558-130.2.146
Amanallah Soltani, Deborah J Fidler, Lina Patel, Kellie Voth, Anna J Esbensen
{"title":"Longitudinally Predicting Behavioral Challenges From Executive Functioning in Youth With Down Syndrome.","authors":"Amanallah Soltani, Deborah J Fidler, Lina Patel, Kellie Voth, Anna J Esbensen","doi":"10.1352/1944-7558-130.2.146","DOIUrl":"10.1352/1944-7558-130.2.146","url":null,"abstract":"<p><p>This study explored how caregiver-reported executive functioning domains, assessed by the BRIEF2 at baseline, predicted behavioral challenges reported by caregivers using the CBCL six months later. The sample included 94 youth with Down syndrome, aged 6 to 18 years. Results of hierarchical regression analyses revealed that, after controlling for the effect of IQ, working memory significantly predicted inattentive behaviors, inhibition significantly predicted rule-breaking behaviors, and both inhibition and emotional control significantly predicted aggressive and externalizing behaviors. After controlling for baseline behaviors, only working memory persisted as a significant predictor of inattentive behaviors measured six months later. The findings are discussed by referring to the relevant theories and research and providing clinical implications and recommendations for further studies.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 2","pages":"146-162"},"PeriodicalIF":2.0,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12070328/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143505880","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 Journey for Tuberous Sclerosis Complex-Interviews From a Clinical Trial. 结节性硬化症复合体的诊断之旅——来自临床试验的访谈。
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-01-01 DOI: 10.1352/1944-7558-130-1-63
Carly Hyde, Logan Shurtz, Nicole McDonald, Maria Pizzano, Charles A Nelson, Elizabeth A Thiele, Connie Kasari, Shafali Jeste
{"title":"Diagnostic Journey for Tuberous Sclerosis Complex-Interviews From a Clinical Trial.","authors":"Carly Hyde, Logan Shurtz, Nicole McDonald, Maria Pizzano, Charles A Nelson, Elizabeth A Thiele, Connie Kasari, Shafali Jeste","doi":"10.1352/1944-7558-130-1-63","DOIUrl":"10.1352/1944-7558-130-1-63","url":null,"abstract":"<p><p>Tuberous sclerosis complex (TSC) is a genetic condition characterized by both medical and neuropsychiatric diagnoses that emerge across the lifespan. As part of a clinical trial, caregivers of children with TSC were interviewed about their experiences navigating medical, school, and social services. Semistructured interviews (N = 20) with caregivers of children with TSC (27-60 months) were conducted upon exit from the study. The interviews covered topics related to experiences following diagnosis, interactions with providers, sources of information, and access to services and treatment. The main themes from the caregiver interviews included: (1) sources of information about TSC and treatment; (2) access to high-quality and expert medical care; (3) perception and diagnosis of TAND; (4) impact of epilepsy on daily life, intervention, and schooling; and (5) access to therapeutic services, compatible providers, and evaluations. Additionally, parents provided recommendations for other caregivers navigating their child's early treatment following diagnosis. These results reflect the importance of current research priorities for TSC stakeholders, including implementation of existing clinical guidelines, improved access to TSC expertise, and coordinated and integrated health care.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 1","pages":"63-75"},"PeriodicalIF":2.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142878587","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
Characterizing Automatically Maintained Self-Injury With the Aberrant Behavior Checklist. 用异常行为检查表表征自动维持自残。
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-01-01 DOI: 10.1352/1944-7558-130.1.13
Hunter C King, Patricia F Kurtz, Michelle D Chin, John Michael Falligant
{"title":"Characterizing Automatically Maintained Self-Injury With the Aberrant Behavior Checklist.","authors":"Hunter C King, Patricia F Kurtz, Michelle D Chin, John Michael Falligant","doi":"10.1352/1944-7558-130.1.13","DOIUrl":"10.1352/1944-7558-130.1.13","url":null,"abstract":"<p><p>Multidimensional variables linked to repetitive behavior, hyperactivity, and mood dysregulation are correlated with the prevalence and severity of self-injurious behavior (SIB) in individuals with intellectual and developmental disabilities (IDD). The purpose of this exploratory study was to examine differences in Aberrant Behavior Checklist (ABC) subscales between individuals with socially maintained SIB and automatically maintained SIB (ASIB). Overall, there were not significant differences in ABC subscale elevations between the SIB and ASIB groups. However, when ASIB was stratified into distinct subtypes, notable differences in subscale elevations were observed. Our results indicate the ABC may have utility for further characterizing the neurobehavioral divergence among individuals with IDD who engage in self-injury.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 1","pages":"13-23"},"PeriodicalIF":2.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142878586","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
Caregivers and Coping: Well-Being, Depression, and Coping Strategies Among Caregivers of Young Adults With Developmental Disabilities. 照顾者与应对：发育障碍青少年照顾者的幸福感、抑郁和应对策略。
IF 2.3 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-01-01 DOI: 10.1352/1944-7558-130.1.41
Hannah Singer, Elaine B Clarke, Hillary K Schiltz, Catherine Lord
{"title":"Caregivers and Coping: Well-Being, Depression, and Coping Strategies Among Caregivers of Young Adults With Developmental Disabilities.","authors":"Hannah Singer, Elaine B Clarke, Hillary K Schiltz, Catherine Lord","doi":"10.1352/1944-7558-130.1.41","DOIUrl":"10.1352/1944-7558-130.1.41","url":null,"abstract":"<p><p>This 10-year study followed 134 caregivers of young adults with autism and intellectual disabilities, examining the effects of caregivers' coping strategies, sociodemographic features, and young adult symptomatology on caregiver well-being and depression. Lower caregiver education and higher young adult externalizing behaviors predicted lower well-being and higher depression among caregivers. Caregivers who were Black or mixed-race experienced higher depression than White caregivers. All five coping strategies investigated predicted changes in caregiver well-being and/or depression, with some effects moderated by young adult externalizing behaviors and sociodemographic features. Notably, higher use of positive coping among caregivers of adults with high externalizing behaviors predicted higher caregiver well-being and lower depression. Findings highlight the importance of effective coping strategies for improving caregiver mental health.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 1","pages":"41-62"},"PeriodicalIF":2.3,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142878526","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
Resilience in Families of Autistic Children and Children With Intellectual Disability During the COVID-19 Pandemic. 2019冠状病毒病大流行期间自闭症儿童和智力残疾儿童家庭的复原力
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-01-01 DOI: 10.1352/1944-7558-130.1.24
Elizaveta Dimitrova, Athanasia Kouroupa, Vasiliki Totsika
{"title":"Resilience in Families of Autistic Children and Children With Intellectual Disability During the COVID-19 Pandemic.","authors":"Elizaveta Dimitrova, Athanasia Kouroupa, Vasiliki Totsika","doi":"10.1352/1944-7558-130.1.24","DOIUrl":"10.1352/1944-7558-130.1.24","url":null,"abstract":"<p><p>Resilience in families of autistic children and children with intellectual disability is associated with factors such as family functioning, social support, and financial strain. Little is known about family resilience during the COVID-19 pandemic when many resources were limited. This study examined the association of family resilience with child characteristics, family resources, and socioecological factors during the pandemic. Data collected during the COVID-19 pandemic from 734 United Kingdom parents/caregivers of children who are autistic and/or have intellectual disability were analyzed using path analysis. Greater family resilience was significantly associated with fewer child behavior problems, absence of intellectual disability, higher financial status, and greater family functioning, though not school support. These factors might guide future research and practices to support vulnerable families at risk of low resilience.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 1","pages":"24-40"},"PeriodicalIF":2.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142878637","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
Challenges in Using Parent-Reported Bed and Wake Times for Actigraphy Scoring in Rett-Related Syndromes. 在rett相关综合征中使用父母报告的睡觉和醒来时间进行活动描记评分的挑战。
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-01-01 DOI: 10.1352/1944-7558-130.1.1
Breanne J Byiers, Alyssa M Merbler, Chantel C Burkitt, Frank J Symons
{"title":"Challenges in Using Parent-Reported Bed and Wake Times for Actigraphy Scoring in Rett-Related Syndromes.","authors":"Breanne J Byiers, Alyssa M Merbler, Chantel C Burkitt, Frank J Symons","doi":"10.1352/1944-7558-130.1.1","DOIUrl":"10.1352/1944-7558-130.1.1","url":null,"abstract":"<p><p>Sleep problems are common in Rett syndrome and other neurogenetic syndromes. Actigraphy is a cost-effective, objective method for measuring sleep. Current guidelines require caregiver-reported bed and wake times to facilitate actigraphy data scoring. The current study examined missingness and consistency of caregiver-reported bed and wake times from paper sleep diaries and actigraphy event mark button presses in a sample of 38 individuals with Rett and related syndromes (aged 2-36 years, mean = 13.1) across two 14-day collection time points. Rates of missingness and discrepancy between the 2 sources were relatively high and correlated with clinical severity and quality of life. Overall, the results suggest a need for alternative actigraphy scoring methods that do not rely on caregiver report in this population.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 1","pages":"1-12"},"PeriodicalIF":2.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12096462/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142878572","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
Providing Care to People With Intellectual and Developmental Disabilities in Medical Education. 在医学教育中为智力和发育障碍者提供护理。
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-11-01 DOI: 10.1352/1944-7558-129.6.476
Isis Olivia Lunsky, Gilmar Gutierrez, Olivier Rabu, Meg Gemmill, Debra Hamer
{"title":"Providing Care to People With Intellectual and Developmental Disabilities in Medical Education.","authors":"Isis Olivia Lunsky, Gilmar Gutierrez, Olivier Rabu, Meg Gemmill, Debra Hamer","doi":"10.1352/1944-7558-129.6.476","DOIUrl":"10.1352/1944-7558-129.6.476","url":null,"abstract":"<p><p>Medical professionals commonly report having inadequate training providing care for individuals with intellectual and developmental disabilities (IDD). This pilot study aimed to address this gap through a virtual Objective Structured Clinical Examinations (OSCE) with individuals with IDD as patient educators for 25 first- and second-year medical students (OSCE participants). Quantitative data through the Prediger competency scale and qualitative data through a semistructured interview were analyzed. OSCE participants reported a significant increase (p < 0.05) in self-perceived competency scores when comparing pre- and post-OSCE scores. Qualitative analysis yielded themes corresponding to improving skills, practice considerations, and perspectives and biases changes. These results suggested that this virtual OSCE promoted the development of self-perceived clinical competency and comfort providing care for individuals with IDD.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 6","pages":"476-489"},"PeriodicalIF":2.0,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142523576","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
Examining Sociodemographic Variability in the Amount and Type of Interventions for Children With Autism. 研究自闭症儿童干预措施的数量和类型的社会人口差异。
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-11-01 DOI: 10.1352/1944-7558-129.6.490
Hannah S Durham, Karrah L Bowman, Ashley J Harrison
{"title":"Examining Sociodemographic Variability in the Amount and Type of Interventions for Children With Autism.","authors":"Hannah S Durham, Karrah L Bowman, Ashley J Harrison","doi":"10.1352/1944-7558-129.6.490","DOIUrl":"10.1352/1944-7558-129.6.490","url":null,"abstract":"<p><p>Various intervention usage is associated with positive outcomes for children with autism. However, the intensity of these interventions tends to be below recommendations, especially for minoritized children. This study aimed to examine how average weekly intervention hours among children vary by sociodemographic factors. Regression analyses were conducted using data from 2,857 participants with autism included in the Simons Simplex Collection. Findings indicated the amount and type of intervention received varied by race, ethnicity, family income, and maternal education. This study marks an important step in documenting the extent of sociodemographic intervention disparities; and, helps to elucidate which therapy types are most readily underused and by which groups to help inform approaches to increase more equitable access.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 6","pages":"490-500"},"PeriodicalIF":2.0,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142523574","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 Key Role of Gestures in Spatial Tasks for Students With Intellectual Disability. 手势在智障学生空间任务中的关键作用
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-11-01 DOI: 10.1352/1944-7558-129.6.460
Noémie Lacombe, Thierry Dias, Geneviève Petitpierre
{"title":"The Key Role of Gestures in Spatial Tasks for Students With Intellectual Disability.","authors":"Noémie Lacombe, Thierry Dias, Geneviève Petitpierre","doi":"10.1352/1944-7558-129.6.460","DOIUrl":"10.1352/1944-7558-129.6.460","url":null,"abstract":"<p><p>The gestures produced by children with intellectual disability (ID) in spatial tasks are rarely considered, although they have a supporting role in the formation of thought. In this research study, we analyzed the number of gestures, the type of gestures, and their role in the expression of knowledge of students with ID. Twenty students (12-17 years old) with ID and 40 students with typical development (TD) matched on visual-spatial level (n = 20) and on language level (n = 20) participated in the research. Students with ID made significantly more gestures in relation to the number of words spoken compared to their peers with TD. Thirty percent of the expressive communication of students with ID came from gestures alone, and 60% of the responses contained at least one gesture. Finally, the higher the level of task difficulty, the more gestures the students made.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 6","pages":"460-475"},"PeriodicalIF":2.0,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142523579","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
Bone Mineral Density Screening in People With Epilepsy and Intellectual Disability. 癫痫和智障人士的骨矿密度筛查。
IF 2 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2024-11-01 DOI: 10.1352/1944-7558-129.6.453
Revital Gandelman-Marton, Jacques Theitler
{"title":"Bone Mineral Density Screening in People With Epilepsy and Intellectual Disability.","authors":"Revital Gandelman-Marton, Jacques Theitler","doi":"10.1352/1944-7558-129.6.453","DOIUrl":"10.1352/1944-7558-129.6.453","url":null,"abstract":"<p><p>Vitamin D measurements and dual energy x-ray absorptiometry (DXA) scans are recommended in people with intellectual disability and/or epilepsy in order to prevent bone-linked harm. The prevalence of vitamin D supplementation and bone mineral density screening were evaluated in 68 people with epilepsy and intellectual disability (EID) and 68 matched controls with epilepsy without intellectual disability. DXA scans were not performed in any of the people with EID but were performed in 11.8% of the people in the control group. People with EID had a higher vitamin D supplementation rate and were treated with more antiepileptic drugs (AEDs) and more AED combinations, including first generation AEDs. Increased awareness of bone health screening in people with epilepsy and especially EID is warranted.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 6","pages":"453-459"},"PeriodicalIF":2.0,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142523653","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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