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Views of parents of children with Down syndrome on Alzheimer's disease vaccination. 唐氏综合症患儿家长对阿尔茨海默病疫苗接种的看法
IF 1.5 4区 医学
Journal of Intellectual Disabilities Pub Date : 2024-09-01 Epub Date: 2023-05-24 DOI: 10.1177/17446295231177787
Sarah Batbold, Gabrielle Cummings, Kirsten A Riggan, Marsha Michie, Megan Allyse
{"title":"Views of parents of children with Down syndrome on Alzheimer's disease vaccination.","authors":"Sarah Batbold, Gabrielle Cummings, Kirsten A Riggan, Marsha Michie, Megan Allyse","doi":"10.1177/17446295231177787","DOIUrl":"10.1177/17446295231177787","url":null,"abstract":"<p><p>Individuals with Down syndrome (DS) experience increased risk of Alzheimer's disease (AD). Recent studies suggest that a vaccine against AD may be forthcoming. Parental buy-in is critical to the success of any intervention in this population, as adults with DS often rely on familial support. This study aims to characterize parents' perceptions of a hypothetical vaccine to prevent AD in individuals with DS. A mixed-methods, anonymous survey was distributed via social media. Participants were asked about their experiences with DS and reactions to proposed interventions. Open-ended responses were thematically analyzed using NVivo 12. Of 1,093 surveys initiated, 532 were completed. Of the parents sampled (N = 532), a small majority (54.3%), supported the proposed AD vaccine. All expressed the need for extensive pre-enrollment education and minimal risk. For many, limited research and long-term sequelae were concerns.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"759-772"},"PeriodicalIF":1.5,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9510606","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
Aggressive behaviour and diabetes: A clinical case of atypical metabolic improvement during clozapine treatment. 攻击性行为与糖尿病：一个在氯氮平治疗期间非典型代谢改善的临床病例。
IF 1.5 4区 医学
Journal of Intellectual Disabilities Pub Date : 2024-09-01 Epub Date: 2024-07-23 DOI: 10.1177/17446295241266897
Mauro Scala, Martina Chiera, Biancamaria Bortolotti, Roberto Rodriguez-Jimenez, Marco Menchetti
{"title":"Aggressive behaviour and diabetes: A clinical case of atypical metabolic improvement during clozapine treatment.","authors":"Mauro Scala, Martina Chiera, Biancamaria Bortolotti, Roberto Rodriguez-Jimenez, Marco Menchetti","doi":"10.1177/17446295241266897","DOIUrl":"10.1177/17446295241266897","url":null,"abstract":"<p><p>Aggressive and violent behaviour is a challenging psychiatric emergency to manage, especially among vulnerable categories such as patients with Intellectual Developmental Disorder. Although there is some evidence that clozapine may be useful as an anti-violence compound, its use is limited by common metabolic complications. An adult patient presented with obesity, type II diabetes mellitus, compulsive food intake, severe Intellectual Developmental Disorder, and a treatment-resistant aggressive behaviour. Clozapine was administered resulting in reduced aggressive behaviour. Unexpectedly, a reduction in the food craving as well as a sustained improvement in both anthropometric parameters and glycemic control were observed during the clozapine treatment. Our case report, describes these findings for the first time, highlighting the need for more clinical research to investigate both the efficacy of clozapine in the Intellectual Developmental Disorder populations and its long-term effects with special regard to the metabolic outcomes in this type of patients.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"872-879"},"PeriodicalIF":1.5,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141749191","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
Staff burnout in intellectual disability services and resistance to change. Implications for leadership support. 智障服务机构工作人员的职业倦怠与变革阻力。对领导支持的影响。
IF 1.5 4区 医学
Journal of Intellectual Disabilities Pub Date : 2024-08-29 DOI: 10.1177/17446295241280697
Konstantinos M Ntinas
{"title":"Staff burnout in intellectual disability services and resistance to change. Implications for leadership support.","authors":"Konstantinos M Ntinas","doi":"10.1177/17446295241280697","DOIUrl":"https://doi.org/10.1177/17446295241280697","url":null,"abstract":"<p><strong>Purpose: </strong>This article aims to analyse the relationship between staff burnout and resistance to change as well as the implications for leadership.</p><p><strong>Design/methodology/approach: </strong>The Job Demands Resource Model, the Social Exchange Theory, and the Model of Socially Induced Burnout were used to analyse the relationship of burnout with resistance to change.</p><p><strong>Findings: </strong>Leadership support is essential in reducing the influence of job demands on staff and on overcoming burnout so that resistance to change is prevented.</p><p><strong>Originality/value: </strong>This lies on the development of a leadership approach based on the factors that influence burnouted staff against change.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241280697"},"PeriodicalIF":1.5,"publicationDate":"2024-08-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142113346","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
Image perception and reception in wordless picture books: Eye movements of children with intellectual disabilities. 无字图画书中的图像感知和接收：智障儿童的眼球运动
IF 1.5 4区 医学
Journal of Intellectual Disabilities Pub Date : 2024-08-28 DOI: 10.1177/17446295241276030
Ruth Sarimski, Manuel M Schwartze, Christian Müller, Peter Zentel
{"title":"Image perception and reception in wordless picture books: Eye movements of children with intellectual disabilities.","authors":"Ruth Sarimski, Manuel M Schwartze, Christian Müller, Peter Zentel","doi":"10.1177/17446295241276030","DOIUrl":"https://doi.org/10.1177/17446295241276030","url":null,"abstract":"<p><p>Wordless picture books enhance comprehension and vocabulary growth and motivate children with intellectual disabilities (ID) to participate in literary activities. However, the reception of picture books can be challenging because deliberate selective attention processes and recognition of the image's meaning are often delayed. Examining eye movements may help explore these cognitive processes. Therefore, we examined eye movements in 29 children with mild and moderate ID as they explored a wordless picture book, presented on a screen and compared them to 14 typically developing children using a Tobii Pro X3-120 eye tracker. The findings showed that children with moderate ID had shorter fixation duration, fixated less often, and revisited regions of interest less frequently. Our results suggest that children with moderate ID have greater difficulties in selectively directing their attention toward regions of visual input with a high level of informativeness and expend less cognitive effort to understand their meaning.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241276030"},"PeriodicalIF":1.5,"publicationDate":"2024-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142082223","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 how organizational culture shapes the experiences of direct support professionals: A qualitative meta-synthesis from an organizational justice perspective. 了解组织文化如何影响直接支持专业人员的经历：从组织公正的角度进行定性元综合。
IF 1.5 4区 医学
Journal of Intellectual Disabilities Pub Date : 2024-08-28 DOI: 10.1177/17446295241278826
Amy Pei-Lung Yu
{"title":"Understanding how organizational culture shapes the experiences of direct support professionals: A qualitative meta-synthesis from an organizational justice perspective.","authors":"Amy Pei-Lung Yu","doi":"10.1177/17446295241278826","DOIUrl":"https://doi.org/10.1177/17446295241278826","url":null,"abstract":"<p><p>Direct support professionals (DSPs) are critical to the quality of life of people with intellectual and developmental disabilities, yet high turnover rates significantly affect the quality and consistency of their services. A qualitative meta-synthesis could help understand how organizational culture shapes the experiences of DSPs. A systematic search found six articles that met all inclusion criteria. The initial findings show that although DSPs perceived their work as worthy and rewarding, they did not feel valued or supported by management either monetarily or professionally. The analysis revealed an overarching theme with elements congruent with the organizational justice literature. Findings suggest that cultivating a culture of justice and fairness is vital to retaining quality DSPs, promoting organizational outcomes, and improving the quality of life of people with intellectual and developmental disabilities.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241278826"},"PeriodicalIF":1.5,"publicationDate":"2024-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142082225","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 impact of a virtual wellness course for adults with intellectual and developmental disabilities in the third year of COVID-19. 在 COVID-19 的第三年，针对智力和发育障碍成人的虚拟健康课程的影响。
IF 1.5 4区 医学
Journal of Intellectual Disabilities Pub Date : 2024-08-28 DOI: 10.1177/17446295241272508
Laura St John, Gregory Borschneck, Tiziana Volpe, Anupam Thakur, Johanna Lake, Heidi Mallet, Victor Pereira, Yona Lunsky
{"title":"The impact of a virtual wellness course for adults with intellectual and developmental disabilities in the third year of COVID-19.","authors":"Laura St John, Gregory Borschneck, Tiziana Volpe, Anupam Thakur, Johanna Lake, Heidi Mallet, Victor Pereira, Yona Lunsky","doi":"10.1177/17446295241272508","DOIUrl":"https://doi.org/10.1177/17446295241272508","url":null,"abstract":"<p><p>The current study examines how a virtual wellness intervention may improve health outcomes in adults with intellectual and developmental disabilities. Thirty-six adults with intellectual and developmental disabilities participated in the wellness intervention. Outcome measures related to satisfaction, mental health, wellbeing, health behaviours and overall health were completed at three time points (pre, post and follow-up). Participants reported high levels of satisfaction and had significant improvements in outcomes related to mental health and wellbeing. Changes in sleep, sedentary behaviour and overall health were not reported, though qualitative evidence suggests that some changes were implemented. The study provides evidence to support the use of virtual interventions to address health concerns in individuals with intellectual and developmental disabilities.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241272508"},"PeriodicalIF":1.5,"publicationDate":"2024-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142082224","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
A qualitative analysis of expert interviews on safety and risk. 对安全与风险问题专家访谈的定性分析。
IF 1.5 4区 医学
Journal of Intellectual Disabilities Pub Date : 2024-08-24 DOI: 10.1177/17446295241277920
Natalie M Driscoll, Peter F Gerhardt, Mary Jane Weiss, Lisa M Tereshko, Mark R Dixon, Ellie Kazemi, David J Cox
{"title":"A qualitative analysis of expert interviews on safety and risk.","authors":"Natalie M Driscoll, Peter F Gerhardt, Mary Jane Weiss, Lisa M Tereshko, Mark R Dixon, Ellie Kazemi, David J Cox","doi":"10.1177/17446295241277920","DOIUrl":"https://doi.org/10.1177/17446295241277920","url":null,"abstract":"<p><p>Safety is a significant clinical challenge in settings serving adults with developmental disabilities. Few resources exist to guide clinical teams in this realm; this study explored safety elements through interviews with experts in critical areas of safety management. The present study aimed to gather knowledge and insights regarding assessing risk among individuals with disabilities. Due to gaps in the available safety literature in adult services, interviews in related areas were conducted and analyzed for thematic content. This paper focuses on the extracted safety themes' categorization, summarization, and implications. The safety themes extracted from the interviews included environmental arrangements, medical, independent living skills, historical indicators of risk, family life skills, challenging behavior, and communication. The interviews identified areas of concern that might guide assessment and inform providers about the most individually relevant contexts to consider when supporting clients.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241277920"},"PeriodicalIF":1.5,"publicationDate":"2024-08-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142047334","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
Trust, respect, and training: Principles of care for service professionals supporting adults with intellectual disabilities in community residential programs. 信任、尊重和培训：在社区寄宿项目中为智障成人提供支持的专业服务人员的护理原则。
IF 1.5 4区 医学
Journal of Intellectual Disabilities Pub Date : 2024-08-23 DOI: 10.1177/17446295241276029
Ryan DeCarsky, Heather D Evans, Hannah Kaufman, Kurt Johnson, Mark Harniss
{"title":"Trust, respect, and training: Principles of care for service professionals supporting adults with intellectual disabilities in community residential programs.","authors":"Ryan DeCarsky, Heather D Evans, Hannah Kaufman, Kurt Johnson, Mark Harniss","doi":"10.1177/17446295241276029","DOIUrl":"https://doi.org/10.1177/17446295241276029","url":null,"abstract":"<p><p><b>Background:</b> Adults with intellectual disabilities in community residential programs receive services from direct support professionals (DSPs) intended to facilitate community engagement. As part of a rate study for Washington State's Developmental Disabilities Administration on community residential services, adults in these programs were asked to provide their perspective on the quality and effectiveness of their care.<b>Method:</b> Twenty-five adults with intellectual disabilities were interviewed focusing on daily activities, staffing, and living situations. Interview transcripts were coded and analyzed for dominant themes.<b>Results:</b> Participants emphasized the desire for trustworthy, caring, and respectful DSPs; DSPs trained in behavioral management techniques made participants feel safe and supported. Nearly all participants called for greater staffing stability.<b>Conclusions:</b> People living in community residential programs are profoundly impacted by the stress and uncertainty of DSPs facing limited resources and high staff turnover. Stable, consistent support makes it easier for participants to engage in community integration.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241276029"},"PeriodicalIF":1.5,"publicationDate":"2024-08-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142044181","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
A distinctive profession? Building professional identity and knowledge for intellectual disability nursing education. 与众不同的专业？为智障护理教育建立专业身份和知识。
IF 1.5 4区 医学
Journal of Intellectual Disabilities Pub Date : 2024-08-23 DOI: 10.1177/17446295241276637
Liz Hartnett, Martin McNamara
{"title":"A distinctive profession? Building professional identity and knowledge for intellectual disability nursing education.","authors":"Liz Hartnett, Martin McNamara","doi":"10.1177/17446295241276637","DOIUrl":"10.1177/17446295241276637","url":null,"abstract":"<p><p>Intellectual disability nursing students can struggle to build a professional identity and make sense of their extensive curriculum and its application to practice. In this article Legitimation Code Theory (LCT) and Critical Discourse Analysis (CDA) are used to facilitate an examination of the organising principles underlying intellectual disability nursing and the relationships agents construct between intellectual disability and other nursing divisions. In particular this paper explores the relationship with general nursing, and examines the connections and boundaries that intellectual disability nursing builds with general nursing, and their implications. LCT and CDA are used to examine how access to theory for intellectual disability nursing students, as compared to their general nursing peers, is facilitated. The bases of specialisation in intellectual disability nursing are also explored. This article considers how these findings can contribute to strengthening the professional identity of the intellectual disability nurse and building the related knowledge base.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241276637"},"PeriodicalIF":1.5,"publicationDate":"2024-08-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142047333","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
Attitudes towards the sexuality of adults with intellectual disabilities: Family, staff, community and student perspectives. 对智障成人性行为的态度：家庭、员工、社区和学生的观点。
IF 1.5 4区 医学
Journal of Intellectual Disabilities Pub Date : 2024-08-19 DOI: 10.1177/17446295241276028
Ana Belén Correa, Ángel Castro, María Dolores Gil-Llario
{"title":"Attitudes towards the sexuality of adults with intellectual disabilities: Family, staff, community and student perspectives.","authors":"Ana Belén Correa, Ángel Castro, María Dolores Gil-Llario","doi":"10.1177/17446295241276028","DOIUrl":"https://doi.org/10.1177/17446295241276028","url":null,"abstract":"<p><p><b>Background:</b> The sexual expression of adults with intellectual disabilities can be hindered by negative attitudes towards their sexuality. This study aims to examine current attitudes of staff, family, community and students towards the sexuality of adults with intellectual disabilities and how sociodemographic variables may influence these attitudes. <b>Methods</b>: 305 participants completed an online questionnaire, including the ASEXID scale. <b>Results</b>: Scores were highest for the normalising attitude and lowest for the negative attitude, with intermediate scores for the paternalistic attitude. Staff and university students exhibited a more normalising attitude than families and community. Community participants exhibited a more negative attitude than staff and students. Older age was associated with less normalising and more paternalistic attitudes. Being male with a more negative attitude. <b>Discussion</b>: These findings should be taken into account by professionals. Intermediate scores on the paternalistic attitude may mediate difficulties in supporting adults with intellectual disabilities in their sexuality.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241276028"},"PeriodicalIF":1.5,"publicationDate":"2024-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142001008","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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