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Caring for Adults With Significant Levels of Intellectual Disability in Outpatient Settings: Results of a National Survey of Physicians. 在门诊环境中照顾有显著智力残疾水平的成年人:一项全国医生调查的结果。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2023-01-01 DOI: 10.1352/1944-7558-128.1.36
Eric G Campbell, Sowmya R Rao, Julie Ressalam, Dragana Bolcic-Jankovic, Rosa Lawrence, Jaime M Moore, Lisa I Iezzoni
{"title":"Caring for Adults With Significant Levels of Intellectual Disability in Outpatient Settings: Results of a National Survey of Physicians.","authors":"Eric G Campbell,&nbsp;Sowmya R Rao,&nbsp;Julie Ressalam,&nbsp;Dragana Bolcic-Jankovic,&nbsp;Rosa Lawrence,&nbsp;Jaime M Moore,&nbsp;Lisa I Iezzoni","doi":"10.1352/1944-7558-128.1.36","DOIUrl":"https://doi.org/10.1352/1944-7558-128.1.36","url":null,"abstract":"<p><p>Between 1% and 2% of the U.S. population has an intellectual disability (ID) and often experience disparities in health care. Communication patterns and sedation use for routine medical procedures are important aspects of care for this population. We explored physicians' communication patterns and sedation use in caring for patients with significant levels of ID through a mailed survey of 1,400 physicians among seven specialties in outpatient settings (response rate = 61.0%). Among physicians who saw at least one patient with significant levels of ID in an average month, 74.8% reported usually/always communicating primarily with someone other than the patient. Among specialists, 85.5% (95% CI: 80.5%-90.5%) reported doing so, compared to 69.9% (95% CI: 64.4%-75.4%) for primary care physicians (p < 0.001). Also, 11.4% reported sedating at least one patient with significant levels of ID for a routine procedure. Three quarters of physicians reported communicating primarily with persons other than the patient usually or always-an approach that, in some instances, may not align with best medical practice. The percentage of physicians who report sedating at least one individual is associated with significant ID and the physician's volume of patients with significant ID.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10698931","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: 1
The Executive Function Account of Repetitive Behavior: Evidence From Rubinstein-Taybi Syndrome. 重复行为的执行功能解释:来自Rubinstein-Taybi综合征的证据。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2023-01-01 DOI: 10.1352/1944-7558-128.1.49
Jane Waite, Sarah R Beck, Laurie Powis, Chris Oliver
{"title":"The Executive Function Account of Repetitive Behavior: Evidence From Rubinstein-Taybi Syndrome.","authors":"Jane Waite,&nbsp;Sarah R Beck,&nbsp;Laurie Powis,&nbsp;Chris Oliver","doi":"10.1352/1944-7558-128.1.49","DOIUrl":"https://doi.org/10.1352/1944-7558-128.1.49","url":null,"abstract":"<p><p>In this study, we focus on Rubinstein-Taybi syndrome (RTS) to explore the associations between executive function deficits and repetitive behaviors. Thirty individuals with RTS completed direct assessments of inhibition, working memory and set-shifting. Informants completed repetitive behavior and executive function questionnaires. Repetitive questions were associated with poorer inhibition and working memory. Stereotypy was associated with poorer inhibition. Adherence to routines was associated with poorer set-shifting, but only on the parental report measure. No other associations were evident. There is evidence of an association between specific repetitive behaviors and executive functioning in RTS, suggesting executive dysfunction may underpin behavioral difference in RTS. The findings point towards specific associations that are of interest for further research across populations in which repetitive behaviors are present.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10644277","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: 1
FMR1 CGG Repeats and Stress Influence Self-Reported Cognitive Functioning in Mothers. FMR1 CGG重复和压力影响母亲自我报告的认知功能。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2023-01-01 DOI: 10.1352/1944-7558-128.1.1
Nell Maltman, Leann Smith DaWalt, Jinkuk Hong, Mei Wang Baker, Elizabeth M Berry-Kravis, Murray H Brilliant, Marsha Mailick
{"title":"FMR1 CGG Repeats and Stress Influence Self-Reported Cognitive Functioning in Mothers.","authors":"Nell Maltman,&nbsp;Leann Smith DaWalt,&nbsp;Jinkuk Hong,&nbsp;Mei Wang Baker,&nbsp;Elizabeth M Berry-Kravis,&nbsp;Murray H Brilliant,&nbsp;Marsha Mailick","doi":"10.1352/1944-7558-128.1.1","DOIUrl":"https://doi.org/10.1352/1944-7558-128.1.1","url":null,"abstract":"<p><p>Variation in the FMR1 gene may affect aspects of cognition, such as executive function and memory. Environmental factors, such as stress, may also negatively impact cognitive functioning. Participants included 1,053 mothers of children with and without developmental disabilities. Participants completed self-report measures of executive function, memory, and stress (i.e., life events, parenting status), and provided DNA to determine CGG repeat length (ranging from 7 to 192 CGGs). Stress exposure significantly predicted greater self-reported difficulties in executive function and the likelihood of memory problems. Cubic CGG effects independently predicted executive function and memory difficulties, suggesting effects of both genetic variation and environmental stress exposure on cognitive functioning.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10445796/pdf/nihms-1917533.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10065541","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: 4
A Personal Narrative Intervention for Adults With Autism and Intellectual Disability. 成人自闭症和智力障碍的个人叙事干预。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2023-01-01 DOI: 10.1352/1944-7558-128.1.21
Nicole L Birri, Christina R Carnahan, Carla Schmidt, Pamela Williamson
{"title":"A Personal Narrative Intervention for Adults With Autism and Intellectual Disability.","authors":"Nicole L Birri,&nbsp;Christina R Carnahan,&nbsp;Carla Schmidt,&nbsp;Pamela Williamson","doi":"10.1352/1944-7558-128.1.21","DOIUrl":"https://doi.org/10.1352/1944-7558-128.1.21","url":null,"abstract":"<p><p>Due to the unique social cognitive profiles of individuals with autism spectrum disorder (ASD) with and without intellectual disability (ID) sharing coherent and complex personal narratives can be challenging. To address these challenges research has focused on teaching macrostructure components using visual supports and repeated opportunities to practice. Despite success by young children with ASD and ID, the application of this instruction for adults with ASD with and without ID is still largely unknown. An ABAB single case withdrawal design was used to determine the effects of a personal narrative intervention to teach macrostructure within participant-generated personal narratives. Results indicate all participants demonstrated more coherent and complex personal narratives with the intervention. The results and implications for practice are discussed.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10698930","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. 英文摘要。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2022-12-01 DOI: 10.1352/1944-7558-122.3.282
{"title":"Résumés en Français.","authors":"","doi":"10.1352/1944-7558-122.3.282","DOIUrl":"https://doi.org/10.1352/1944-7558-122.3.282","url":null,"abstract":"","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76387648","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 Phenotypic Differences in Gaze Avoidance Between Autism Spectrum Disorder and Fragile X Syndrome. 自闭症谱系障碍和脆性X综合征凝视回避的表型差异研究。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2022-11-01 DOI: 10.1352/1944-7558-127.6.435
Ellen H Wilkinson, Tobias C Britton, Scott S Hall
{"title":"Examining Phenotypic Differences in Gaze Avoidance Between Autism Spectrum Disorder and Fragile X Syndrome.","authors":"Ellen H Wilkinson,&nbsp;Tobias C Britton,&nbsp;Scott S Hall","doi":"10.1352/1944-7558-127.6.435","DOIUrl":"https://doi.org/10.1352/1944-7558-127.6.435","url":null,"abstract":"<p><p>We examined potential phenotypic differences in eye gaze avoidance exhibited by boys with autism spectrum disorder (ASD) and boys with fragile X syndrome (FXS). In Study 1, the Eye Contact Avoidance Scale (ECAS) was administered to caregivers of boys aged 7-18 years with FXS (n = 148), ASD (n = 168), and mixed developmental disabilities (MDD; n = 128). In Study 2, subsets of boys with FXS (n = 31) and boys with ASD (n = 25) received a brief behavioral treatment probe to improve eye contact. Results showed that boys with FXS obtained significantly higher scores on the ECAS compared to boys with ASD and MDD. Exposure to the brief behavioral treatment probe resulted in significant decreases in scores for boys with FXS, but not for boys with ASD.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9667749/pdf/nihms-1846616.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9203809","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: 2
Public Stigmatization of People With Intellectual Disability During the COVID-19 Pandemic. 2019冠状病毒病大流行期间智障人士的公众污名化
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2022-11-01 DOI: 10.1352/1944-7558-127.6.485
Maria R Dekker, Alexander H C Hendriks, Noud Frielink, Petri J C M Embregts
{"title":"Public Stigmatization of People With Intellectual Disability During the COVID-19 Pandemic.","authors":"Maria R Dekker,&nbsp;Alexander H C Hendriks,&nbsp;Noud Frielink,&nbsp;Petri J C M Embregts","doi":"10.1352/1944-7558-127.6.485","DOIUrl":"https://doi.org/10.1352/1944-7558-127.6.485","url":null,"abstract":"<p><p>This study aimed to examine the level of discrimination against people with intellectual disability during COVID-19, and assessed stereotypes, levels of familiarity with people with intellectual disability, and personal experiences with COVID-19 as potential correlates. A cross-sectional study was conducted using a large sample from the Dutch population (n = 1,797). Salient stereotype factors of people with intellectual disability were \"friendly\" and \"in need of help,\" but not \"give nuisance.\" Those respondents who were unfamiliar with people with intellectual disability in real life demonstrated higher levels of discrimination, perceiving them as more of a nuisance and as being less in need of help, in comparison to those who were more familiar. People with intellectual disability were judged by an ambivalent set of stereotypes during the COVID-19 pandemic that were in line with pre-COVID-19 findings and as such seemed to be fairly persistent and robust. There is a pressing need to both raise awareness of stereotypes towards and discrimination against people with intellectual disability via advocacy and education, and to facilitate positive encounters.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9203807","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: 2
Mental State Language Development in Children With Down Syndrome Versus Typical Development. 唐氏综合症儿童的精神状态语言发展与典型发展。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2022-11-01 DOI: 10.1352/1944-7558-127.6.495
Marie Moore Channell, Linnea E Sandstrom, Danielle Harvey
{"title":"Mental State Language Development in Children With Down Syndrome Versus Typical Development.","authors":"Marie Moore Channell,&nbsp;Linnea E Sandstrom,&nbsp;Danielle Harvey","doi":"10.1352/1944-7558-127.6.495","DOIUrl":"https://doi.org/10.1352/1944-7558-127.6.495","url":null,"abstract":"<p><p>This study compared mental state language (talk about emotions, thoughts, intentions, etc.) used by 6- to 11-year-old children with Down syndrome (DS) to a younger typically developing (TD) comparison group matched by nonverbal cognition. We aimed to determine (1) whether mental state language use is delayed in DS relative to developmental expectations, and (2) if there are differences between groups in the association between mental state language and developmental factors (emotion knowledge, expressive language). Rate of mental state language use was significantly lower in the group with DS, but the number of different mental state terms was not significantly different. Nuanced patterns of similarity and difference emerged between groups regarding the association between mental state language and other developmental factors.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9203808","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: 1
Using a Delphi Process to Update the Nisonger Child Behavior Rating Form. 用德尔菲法更新大儿童行为评定表。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2022-11-01 DOI: 10.1352/1944-7558-127.6.455
Kelsey B Shively, Marc J Tassé
{"title":"Using a Delphi Process to Update the Nisonger Child Behavior Rating Form.","authors":"Kelsey B Shively,&nbsp;Marc J Tassé","doi":"10.1352/1944-7558-127.6.455","DOIUrl":"https://doi.org/10.1352/1944-7558-127.6.455","url":null,"abstract":"<p><p>The Nisonger Child Behavior Rating Form (NCBRF) was developed to specifically screen psychopathology and problem behavior in children and adolescents with IDD. This study aimed to update the NCBRF to the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) and screen for the most prevalent psychopathologies that affect children and adolescents with IDD. The authors re-aligned the existing items to fit within a DSM-5 framework, and then used the Delphi method with a panel of experts in IDD to evaluate the NCBRF items. The revision process included deleting and revising existing items and formulating new items. We obtained a final item pool after three iterations. The Delphi process and resulting item pool are described in this article.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10637884","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
NIH Toolbox Cognition Battery Feasibility in Individuals With Williams Syndrome. 美国国立卫生研究院工具箱认知电池在威廉姆斯综合征患者中的可行性。
IF 2.1 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2022-11-01 DOI: 10.1352/1944-7558-127.6.473
Emma E Condy, Lindsey Becker, Cristan Farmer, Aaron J Kaat, Colby Chlebowski, Beth A Kozel, Audrey Thurm
{"title":"NIH Toolbox Cognition Battery Feasibility in Individuals With Williams Syndrome.","authors":"Emma E Condy,&nbsp;Lindsey Becker,&nbsp;Cristan Farmer,&nbsp;Aaron J Kaat,&nbsp;Colby Chlebowski,&nbsp;Beth A Kozel,&nbsp;Audrey Thurm","doi":"10.1352/1944-7558-127.6.473","DOIUrl":"https://doi.org/10.1352/1944-7558-127.6.473","url":null,"abstract":"<p><p>The NIH Toolbox Cognition Battery (NIHTB-CB) was developed for epidemiological and longitudinal studies across a wide age span. Such a tool may be useful for intervention trials in conditions characterized by intellectual disability (ID), such as Williams syndrome (WS). Three NIHTB-CB tasks, including two executive functioning (Flanker, Dimensional Change Card Sort) and one episodic memory (Picture Sequence Memory) task, were given to 47 individuals with WS, ages 4 to 50, to evaluate feasibility (i.e., proportion of valid administrations) in this population. Findings indicated that NIHTB-CB tests showed good feasibility. Flanker and DCCS age-corrected scores were negatively correlated with age and showed floor effects, indicating these scores may not be useful for quantifying performance on these NIHTB-CB tests in ID.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10637883","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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