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Journal of Intellectual & Developmental Disability最新文献

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Down syndrome or Rett syndrome in the family: Parental reflections on sibling experience 唐氏综合症或雷特综合症的家庭:父母对兄弟姐妹经历的反思
Journal of Intellectual & Developmental Disability Pub Date : 2023-07-13 DOI: 10.3109/13668250.2023.2225353
Caitlin Gray, H. Leonard, Kingsley Wong, Sally Reed, Kate Schmidt, R. Skoss, Jianghong Li, Alison Salt, J. Bourke, E. Glasson
{"title":"Down syndrome or Rett syndrome in the family: Parental reflections on sibling experience","authors":"Caitlin Gray, H. Leonard, Kingsley Wong, Sally Reed, Kate Schmidt, R. Skoss, Jianghong Li, Alison Salt, J. Bourke, E. Glasson","doi":"10.3109/13668250.2023.2225353","DOIUrl":"https://doi.org/10.3109/13668250.2023.2225353","url":null,"abstract":"","PeriodicalId":444774,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"56 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-07-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"127015037","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Sensory and balance impairments in Special Olympics athletes: An epidemiological study 特奥会运动员感觉和平衡障碍:一项流行病学研究
Journal of Intellectual & Developmental Disability Pub Date : 2023-06-18 DOI: 10.3109/13668250.2023.2220484
Erin N. Jarvis, D. McAuliffe, Mercedes Dayan, J. McDevitt
{"title":"Sensory and balance impairments in Special Olympics athletes: An epidemiological study","authors":"Erin N. Jarvis, D. McAuliffe, Mercedes Dayan, J. McDevitt","doi":"10.3109/13668250.2023.2220484","DOIUrl":"https://doi.org/10.3109/13668250.2023.2220484","url":null,"abstract":"ABSTRACT\u0000 Background Having an intellectual disability increases the likelihood for exhibiting impairments in vision, hearing, and balance. The intersection of these issues has yet to be described in a large cohort. Methods By hosting the largest public health database for individuals with intellectual disability, Special Olympics (SO) offers ∼120,000 assessments completed at competitions between 2007 and 2018. Results Of SO athletes assessed for vision (N = 52,521), hearing (N = 35,073), and balance (N = 31,446), 74%, 28%, and 51% demonstrated a deficit, respectively. Thirteen percent of athletes presenting to three assessments (N = 7,887) showed concurrent impairments. Conclusions The high prevalence of sensory and balance impairments at younger ages (M = 28.8, SD = 14.15) compared to the general population highlights disparities faced by the intellectual disability community and should guide public health policy for improved screening and counselling.","PeriodicalId":444774,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"31 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-06-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"123075864","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
What is ethically required to adapt to intellectual disability in cancer care? A case study of testicular cancer management 在癌症治疗中适应智力残疾的伦理要求是什么?睾丸癌治疗的个案研究
Journal of Intellectual & Developmental Disability Pub Date : 2023-06-15 DOI: 10.3109/13668250.2023.2220486
C. Delany, M. Diocera, J. Lewin
{"title":"What is ethically required to adapt to intellectual disability in cancer care? A case study of testicular cancer management","authors":"C. Delany, M. Diocera, J. Lewin","doi":"10.3109/13668250.2023.2220486","DOIUrl":"https://doi.org/10.3109/13668250.2023.2220486","url":null,"abstract":"ABSTRACT\u0000 Background People with intellectual disability who require cancer services face several barriers and inequities, including delayed or unrecognised cancer diagnosis and inadequate attention paid to their specific concerns, needs and preferences about care. Methods In this case report, we present a case report of a 33-year-old male with severe intellectual disability requiring treatment for metastatic testicular cancer. The patient’s intellectual disability required major adjustments to the delivery of chemotherapy. We also describe the involvement of a clinical ethics committee to analyse the ethical pros and cons of different treatment options for this patient, and to facilitate discussions about collaboration and communication required, between different clinical teams, and with the patient’s family and carers. Results and conclusions We suggest this level of clinical and ethical deliberation sets the bar for what is required for healthcare services to be inclusive of and accessible for all people, especially those with intellectual disability.","PeriodicalId":444774,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"1 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-06-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"129952932","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Single-case evaluation of oral feeding intervention and gastrostomy tube fading in adults with intellectual and multiple disabilities 成人智力和多重残疾患者口服喂养干预和胃造口管消退的单例评价
Journal of Intellectual & Developmental Disability Pub Date : 2023-06-05 DOI: 10.3109/13668250.2023.2206296
Lindsay Bly, M. McBeth, Ibukun Olagunju, Heather Hirst, Dani Block, F. Bird, J. Luiselli
{"title":"Single-case evaluation of oral feeding intervention and gastrostomy tube fading in adults with intellectual and multiple disabilities","authors":"Lindsay Bly, M. McBeth, Ibukun Olagunju, Heather Hirst, Dani Block, F. Bird, J. Luiselli","doi":"10.3109/13668250.2023.2206296","DOIUrl":"https://doi.org/10.3109/13668250.2023.2206296","url":null,"abstract":"","PeriodicalId":444774,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"5 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134110140","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
A systematic review on attachment and down syndrome 依恋与唐氏综合症的系统综述
Journal of Intellectual & Developmental Disability Pub Date : 2023-05-28 DOI: 10.3109/13668250.2023.2208744
S. Vanwalleghem, R. Miljkovitch
{"title":"A systematic review on attachment and down syndrome","authors":"S. Vanwalleghem, R. Miljkovitch","doi":"10.3109/13668250.2023.2208744","DOIUrl":"https://doi.org/10.3109/13668250.2023.2208744","url":null,"abstract":"ABSTRACT\u0000 Background To document whether the sociocognitive peculiarities of people with Down Syndrome impact the construction of attachment at different ages, a systematic review of the literature was carried out. Method This review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses, was conducted on three databases: psycINFO, MEDLINE, and Psychology and Behavioural Sciences Collection (1975–2021). Twelve studies were included. Results Most children with Down syndrome develop specific attachment patterns in infancy and childhood, and around half of them become secure. However, the risk of exhibiting atypical/unclassifiable or disorganised attachment is higher among children with Down syndrome compared to typically developing children. Findings are mixed regarding the specific role of cognitive disability. Conclusion These findings highlight the fact that Down syndrome does not preclude the establishment of secure attachment. However, more research is needed to understand what the unclassifiable category represents in terms of attachment.","PeriodicalId":444774,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"1 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"130673735","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Socio-demographic and clinical profiles of adults with an intellectual disability admitted to acute general psychiatric wards in a Singapore hospital 新加坡一家医院急性普通精神病病房收治的智力残疾成人的社会人口统计学和临床概况
Journal of Intellectual & Developmental Disability Pub Date : 2023-04-25 DOI: 10.3109/13668250.2023.2192399
S. Sajith, K. Wei, Giles Ming Yee Tan
{"title":"Socio-demographic and clinical profiles of adults with an intellectual disability admitted to acute general psychiatric wards in a Singapore hospital","authors":"S. Sajith, K. Wei, Giles Ming Yee Tan","doi":"10.3109/13668250.2023.2192399","DOIUrl":"https://doi.org/10.3109/13668250.2023.2192399","url":null,"abstract":"","PeriodicalId":444774,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"44 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-04-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"122721743","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Parental role in intimate relationships: Comparing adults with and without intellectual disabilities 父母在亲密关系中的角色:比较有智力障碍和没有智力障碍的成年人
Journal of Intellectual & Developmental Disability Pub Date : 2023-04-23 DOI: 10.3109/13668250.2023.2198344
Rebecca R. Kammes, Sarah N. Douglas, R. Black
{"title":"Parental role in intimate relationships: Comparing adults with and without intellectual disabilities","authors":"Rebecca R. Kammes, Sarah N. Douglas, R. Black","doi":"10.3109/13668250.2023.2198344","DOIUrl":"https://doi.org/10.3109/13668250.2023.2198344","url":null,"abstract":"ABSTRACT\u0000 Background Adults with intellectual disabilities experience higher rates of exploitative intimate relationships. Parents of these adults play important roles in their lives. This study examined the role of parents in the intimate relationship experiences of adults with intellectual disabilities. Method A mixed methods design was utilised. Parents compared experiences between their adult child with intellectual disabilities and typically developing adult child. An online survey was completed by 50 parents in the United States, and follow-up phone/video interviews were completed concurrently with a subset of 20 parents. Results Parents reported increased involvement in relationships of their adults with intellectual disabilities. They discussed different barriers and expectations for these relationships compared to typically developing children. Parents struggled to determine appropriate levels of involvement in the romantic relationships of their children with intellectual disabilities. Conclusion This study highlights the need for coaching and mentoring for parents to help them navigate experiences successfully.","PeriodicalId":444774,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"24 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-04-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"114875260","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Families’ perspectives on the process of community transitions of individuals with severe intellectual and developmental disabilities 家庭对重度智力和发育障碍个体社区过渡过程的看法
Journal of Intellectual & Developmental Disability Pub Date : 2023-04-19 DOI: 10.3109/13668250.2023.2193135
M. Baranowski, Margherita Cameranesi, J. Mignone, L. McCombe, Kayla Kostal, Jenna Heschuk, S. Shooshtari
{"title":"Families’ perspectives on the process of community transitions of individuals with severe intellectual and developmental disabilities","authors":"M. Baranowski, Margherita Cameranesi, J. Mignone, L. McCombe, Kayla Kostal, Jenna Heschuk, S. Shooshtari","doi":"10.3109/13668250.2023.2193135","DOIUrl":"https://doi.org/10.3109/13668250.2023.2193135","url":null,"abstract":"","PeriodicalId":444774,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"2 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-04-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"128897484","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Adaptive profiles within a broad clinical sample from a transdiagnostic point of view 从跨诊断的角度来看，广泛临床样本中的适应性概况
Journal of Intellectual & Developmental Disability Pub Date : 2023-04-13 DOI: 10.3109/13668250.2023.2184089
Bea Kreemers, J. Maljaars, Kris Evers, B. Maes, I. Noens
{"title":"Adaptive profiles within a broad clinical sample from a transdiagnostic point of view","authors":"Bea Kreemers, J. Maljaars, Kris Evers, B. Maes, I. Noens","doi":"10.3109/13668250.2023.2184089","DOIUrl":"https://doi.org/10.3109/13668250.2023.2184089","url":null,"abstract":"ABSTRACT Background Current literature mainly focuses on adaptive profiles from a categorical perspective but yields inconclusive results. The present study puts a transdiagnostic approach next to a “classical” categorical approach. Methods In this study, 222 children (5–18 years old) with autism and/or intellectual disability participated. Variance analyses, based on standard scores from ABAS-3 at group-level, were conducted in order to compare adaptive domains within categories. A K-Means cluster analysis was used to delineate empirically derived clusters with a similar profile of difference scores at an individual level. Chi-square tests and variance analyses were used to investigate the distribution of variables across clusters. Results From a categorical perspective, results were in line with current literature. A transdiagnostic perspective revealed three adaptive profiles (Homogeneous, Social, and Practical). No perfect match was found between specific adaptive profiles and diagnostic categories. Conclusions A transdiagnostic perspective sheds light on the heterogeneity within and the overlap across diagnostic categories.","PeriodicalId":444774,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"139 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-04-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"132414134","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The construct validity and reliability of the Motor Development List for the assessment of motor skills in children with profound intellectual and multiple disabilities: The next step? 运动发展量表对深度智力和多重残疾儿童运动技能评估的结构效度和信度:下一步?
Journal of Intellectual & Developmental Disability Pub Date : 2023-03-28 DOI: 10.3109/13668250.2023.2188877
Marleen D. Wessels, Arjen van Assen, W. Post, A. V. D. van der Putten
{"title":"The construct validity and reliability of the Motor Development List for the assessment of motor skills in children with profound intellectual and multiple disabilities: The next step?","authors":"Marleen D. Wessels, Arjen van Assen, W. Post, A. V. D. van der Putten","doi":"10.3109/13668250.2023.2188877","DOIUrl":"https://doi.org/10.3109/13668250.2023.2188877","url":null,"abstract":"ABSTRACT Background: There are no psychometrically validated instruments available to measure motor skills of children with profound intellectual and multiple disabilities (PIMD). In this study, the construct validity and reliability (Rho) of the Motor Development List for children with PIMD (MDL-PIMD), a proxy-reported measure, was investigated. Methods: The MDL-PIMD was filled in by parents of 52 children with PIMD every six months over a period of two years. The items of the original MDL were categorised into subscales. A Mokken scale analysis for polytomous items was conducted for five subscales (Posture, Locomotion, Reaching, Grabbing and Facial Actions). Results: Several items were deleted to improve scalability. All scales showed good scalability (range scale H .66-.78) and reliability (range Rho .92-.98). Conclusions: The MDL-PIMD seems to be a valid and reliable instrument for assessing the motor skills of children with PIMD, although more research is needed to confirm the factorial structure.","PeriodicalId":444774,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"17 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-03-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"125350143","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","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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