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The effect of Transition to Adulthood Training Program for mothers of young adults with intellectual disability on family quality of life and perceived stress level: A pilot randomized controlled study. 针对智障青少年母亲的成年过渡培训计划对家庭生活质量和感知压力水平的影响:随机对照试验研究。
IF 1.5 4区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2024-05-31 DOI: 10.1177/17446295241259100
Eyşan Hanzade Savaş, Ayfer Aydin, İpek Bertan

Families cannot easily identify and cope with the changing health problems and needs of children transitioning into adulthood. This pilot randomized controlled study aims to improve the family's quality of life and reduce mothers' perceived stress levels by implementing an educational program (Transition to Adulthood Training Program - TATP). A total of 33 mothers of children with intellectual disabilities were randomly assigned to the groups. Data were collected using the Personal Information Form, Beach Center Family Quality of Life (BCFQOL), and Perceived Stress Scale. The intervention group showed a significant increase in the BCFQOL mean score rather than the control group (p<.001). There was a significant decrease in the perceived stress scores of the mothers in the intervention group after the TATP training sessions (p<0.05). The TATP intervention not only increased the quality of family life for these mothers but also led to a reduction in their perceived stress levels.

对于即将步入成年期的儿童不断变化的健康问题和需求,家庭很难识别和应对。这项试验性随机对照研究旨在通过实施一项教育计划(向成年过渡培训计划--TATP),提高家庭的生活质量,减轻母亲们的压力。共有 33 位智障儿童的母亲被随机分配到各组。通过个人信息表、海滩中心家庭生活质量(BCFQOL)和感知压力量表收集数据。与对照组相比,干预组的 BCFQOL 平均得分有了明显提高(p
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引用次数: 0
Exploring the lived experiences and care challenges of formal paid caregivers for people with intellectual disability and dementia. 探索智障和痴呆症患者正式有偿护理人员的生活经历和护理挑战。
IF 1.5 4区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2024-05-30 DOI: 10.1177/17446295241259076
Daniel James Acton, Sujeet Jaydeokar, Ruth Taylor, Steven Jones

A greater number of people with intellectual disability are living into older age and are at increased risk of developing conditions such as dementia. Caring for a person with dementia presents several challenges for formal caregivers due to the progressive nature of the disease. An interpretive phenomenological analysis was used to understand the lived experiences of a purposive sample of formal caregivers in caring for people with intellectual disability and dementia. Discussions from 14 individual interviews generated data were analysed. Four key super-ordinate themes emerged which were: (1) recognising early indicators and diagnosis, (2) post diagnostic support, (3) coping with change and (4) need for future development. Themes reflected the experiences, barriers to dementia diagnosis and provide a valuable insight into the challenges faced by formal caregivers in providing aged care services.

越来越多的智障人士步入老年,患痴呆症等疾病的风险也随之增加。由于痴呆症的渐进性,照顾痴呆症患者给正规照护者带来了诸多挑战。本研究采用解释性现象学分析法来了解特定样本的正规照护者在照护智障和痴呆症患者时的生活经历。我们分析了 14 个个别访谈所产生的讨论数据。得出了四个关键的超级主题,分别是(1) 识别早期指标和诊断,(2) 诊断后支持,(3) 应对变化和 (4) 未来发展需求。这些主题反映了老年痴呆症诊断的经验和障碍,并为了解正规照护者在提供老年照护服务时所面临的挑战提供了宝贵的见解。
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引用次数: 0
Family quality of life of parents of children with intellectual disability: Do psychological stress and parental involvement matter? 智障儿童父母的家庭生活质量:心理压力和父母参与是否重要?
IF 1.5 4区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2024-05-21 DOI: 10.1177/17446295241254624
Sanyin Cheng, Jiaqi Li, Qiaoqiao Li, Xuxu Li, Yan Luo

Background: The psychological stress of parents and improving family quality of life (FQoL) are continuing concerns for families of children with intellectual disability. We need to identify further ways to reduce their stress and improve their FQoL in China. Method: Examine the interrelations between psychological stress, parental involvement, and FQoL for parents with intellectual disability in mainland China. 467 parents of children with intellectual disability completed instruments measuring variables. Structural equation modelling (SEM) was employed to examine the interrelations. Results: Psychological stress, directly and indirectly, influenced parental involvement in FQoL. Physical and mental response (PMR) and risk awareness (RA) had a positive direct effect on FQoL, and optimistic hope (OH) had a negative effect on FQoL. Conclusions: Psychological stress affects FQoL of parents with children with intellectual disability in complex ways. Policies should be developed to help parents with children with disability decrease stress and develop scientific parental involvement.

背景:家长的心理压力和改善家庭生活质量(FQoL)是智障儿童家庭持续关注的问题。在中国,我们需要找到进一步减轻家长压力和改善其家庭生活质量的方法。研究方法研究中国大陆智障儿童家长的心理压力、家长参与和 FQoL 之间的相互关系。467名智障儿童家长填写了测量变量的问卷。采用结构方程模型(SEM)来研究两者之间的相互关系。结果显示心理压力直接或间接地影响了家长对 FQoL 的参与。身心反应(PMR)和风险意识(RA)对 FQoL 有直接的积极影响,而乐观希望(OH)对 FQoL 有消极影响。结论心理压力以复杂的方式影响智障儿童父母的 FQoL。应制定相关政策,帮助残疾儿童的父母减轻压力,培养父母的科学参与。
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引用次数: 0
Young children with intellectual disabilities and their mathematical attainments: Do parents' attitudes toward mathematics, home numeracy, and literacy practices matter? 智障幼儿及其数学成绩:父母对数学的态度、家庭算术和识字方法重要吗?
IF 1.5 4区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2024-05-17 DOI: 10.1177/17446295241254625
Garyfalia Charitaki, Anastasia Alevriadou

This study explored potential factors of numeracy acquisition in young children with intellectual disabilities (IDs). Those factors are determined to assess parents' academic expectations and home practices that they use with their children daily. The sample consisted of 187 Greek-speaking couples, comprising a total number of 374 parents. All of them had a child with mild IDs aged between 4 and 7 years old. Since Greece is placed among European countries with the lowest median disposable income it is significant to assess the potential effects of each family's socioeconomic status. We employed structural equation modeling to identify potential factors affecting a child's with IDs numeracy outcomes. Analysis of moments structures (AMOS) revealed that there is a good fit for the suggested second-order structural equation model. Results are discussed regarding their practical implications.

本研究探讨了智障幼儿学习算术的潜在因素。这些因素是通过评估家长对孩子的学业期望和日常家庭实践确定的。样本包括 187 对讲希腊语的夫妇,共计 374 名家长。他们都有一个患有轻度智障的孩子,年龄在 4 至 7 岁之间。由于希腊是欧洲可支配收入中位数最低的国家之一,因此评估每个家庭的社会经济状况的潜在影响意义重大。我们采用结构方程模型来确定影响智障儿童计算能力结果的潜在因素。矩结构分析(AMOS)显示,建议的二阶结构方程模型具有良好的拟合度。本文就结果的实际意义进行了讨论。
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引用次数: 0
Challenges and best practices for recruiting families of children with intellectual disabilities for health research. 招募智障儿童家庭参与健康研究的挑战和最佳实践。
IF 1.5 4区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2024-05-16 DOI: 10.1177/17446295241255178
Morgan MacNeil, Britney Benoit, Timothy Disher, Aaron J Newman, Marsha Campbell-Yeo

Research focused on children with intellectual disabilities has been of increasing interest over the last two decades. However, a considerable lag in the amount of research that is representative and generalizable to this population in comparison to neurotypical children remains, largely attributed to issues with participant engagement and recruitment. Challenges and barriers associated with engaging and recruiting this population include lack of research to provide a sound foundation of knowledge, ethical considerations, parental attitudes, family commitments, and organizational gatekeeping. Researchers can engage children and their families using participatory research methods, honouring the child's right to assent, and collaborating with parents. Recruitment strategies include partnering with organizations, working with parent and patient partners, and using remote methods. Employing evidence-informed engagement and recruitment strategies may provide substantial social and scientific value to the research field by ensuring that this underrepresented population benefits equitably from research findings.

在过去二十年里,人们对智障儿童的研究越来越感兴趣。然而,与神经正常儿童相比,对智障儿童群体具有代表性和普遍性的研究数量仍然相当滞后,这主要归因于参与者的参与和招募问题。与吸引和招募这类人群相关的挑战和障碍包括:缺乏可提供坚实知识基础的研究、伦理考虑、家长态度、家庭承诺和组织把关。研究人员可以使用参与式研究方法、尊重儿童的同意权并与家长合作,让儿童及其家庭参与其中。招募策略包括与组织合作、与家长和患者伙伴合作以及使用远程方法。采用有实证依据的参与和招募策略,可为研究领域带来巨大的社会和科学价值,确保这一代表性不足的人群公平地受益于研究成果。
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引用次数: 0
Information needs of caregivers of adults with intellectual and/or developmental disabilities in India. 印度智障和/或发育障碍成人照顾者的信息需求。
IF 1.5 4区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2024-05-15 DOI: 10.1177/17446295241254933
Sumithra Murthy, Sarah Parker Harris, Kelly Hsieh

Many families of adults with intellectual and/or developmental disabilities in India experience difficulty in accessing services/supports, due to lack of awareness/knowledge of disability rights/laws and available services, and in accessing the services. There remains insufficient research on the information needs of these caregivers and on designing interventions that aim to increase their awareness/knowledge about human rights and supports/services. A strengths-based mixed methods needs assessment was conducted to understand the information needs of these family caregivers. Results showed that caregivers ≥50 years had significantly higher information needs than younger caregivers. Specifically, caregivers with no proficiency in English needed more information on the available services for the care recipients (n = 100). Qualitative results showed that very few caregivers had any awareness or access to information on human rights, disability-related laws/policies or available supports/services (n = 15). Study findings underscore the government's role in improving awareness-raising initiatives and imparting the information in multiple Indian languages.

在印度,许多有智力和/或发育障碍的成年人的家庭在获得服务/支持方面遇到困难,原因是缺乏对残疾人权利/法律和现有服务的认识/了解,以及在获得服务方面的困难。关于这些照顾者的信息需求以及设计旨在提高他们对人权和支持/服务的认识/知识的干预措施的研究仍然不足。为了了解这些家庭照顾者的信息需求,我们开展了一项以优势为基础的混合方法需求评估。结果显示,年龄≥50 岁的照顾者对信息的需求明显高于年轻的照顾者。具体来说,不熟练掌握英语的照顾者需要更多关于照顾对象可用服务的信息(n = 100)。定性研究结果显示,很少有照顾者了解或获得有关人权、残疾相关法律/政策或可用支持/服务的信息(n = 15)。研究结果强调了政府在改进提高认识活动和以多种印度语言传播信息方面的作用。
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引用次数: 0
A three-years follow-up of extra intensive support for individuals with intellectual disability and severe challenging behaviour in the Netherlands. 对荷兰智障者和有严重挑战行为者的额外强化支持进行为期三年的跟踪调查。
IF 1.5 4区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2024-05-09 DOI: 10.1177/17446295241252918
Linda Verhaar, Yvette M Dijkxhoorn, Leo de Sonneville, Hanna Swaab

Adults with Intellectual Disability who show severe challenging behaviour need intensive individual support. If intensive support proves to be insufficient, extra intensive support can be provided in the Netherlands, which is characterized by more time for individual care. The present study evaluates the impact of extra intensive support over time. Client characteristics of adults receiving intensive support (IS, N=70) or extra intensive support (IS+, N=35) are compared and the impact of provided support on challenging behaviour (Developmental Behaviour Checklist-Adults), adaptive behaviour (Vineland II), and Quality of Life (San Martin Scale) is evaluated over a three years period. Compared to adults receiving intensive support, those receiving extra intensive support initially showed higher intensity of challenging behaviour, higher number of mental health diagnoses and stronger focus on goals to reduce challenging behaviour. Over time, intensity of challenging behaviour decreased in adults receiving extra intensive support, although Quality of Life and adaptive functioning did not improve. Results show that the indications for receiving extra intensive support are clear and that the extra support is effective over time. It is concluded that extra individual support is serving those who need this support.

表现出严重挑战行为的智障成人需要强化个人支持。如果强化支持被证明是不够的,在荷兰可以提供额外的强化支持,其特点是个人护理时间更长。本研究评估了额外强化支持随着时间推移所产生的影响。研究比较了接受强化支持(IS,人数=70)或额外强化支持(IS+,人数=35)的成年人的客户特征,并评估了所提供的支持在三年内对挑战行为(发育行为检查表-成人)、适应行为(文兰II)和生活质量(圣马丁量表)的影响。与接受强化支持的成人相比,接受额外强化支持的成人最初表现出较高的挑战性行为强度、较高的心理健康诊断数量以及对减少挑战性行为目标的更强关注。随着时间的推移,接受额外强化支持的成年人挑战行为的强度有所下降,但生活质量和适应功能并未得到改善。结果表明,接受额外强化支持的指征是明确的,而且随着时间的推移,额外支持是有效的。结论是,额外的个别支持正在为那些需要这种支持的人服务。
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引用次数: 0
A scoping review investigating the perspectives of people with mild to moderate intellectual disabilities on experiences of cyberbullying victimisation and its subtypes. 调查轻度至中度智障人士对网络欺凌受害经历及其亚型的看法的范围界定研究。
IF 1.5 4区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2024-05-08 DOI: 10.1177/17446295241252214
Fiona A Clements, Lisa J Orchard, Darren D Chadwick

This scoping review examines cyberbullying victimisation in people with mild to moderate intellectual disabilities, focusing on specific types of cyberbullying behaviours, such as flaming, harassment, and stalking. A five-stage review of empirical research was conducted using 15 electronic databases, covering publications from October 1969 to January 2024. Twelve studies were selected, reporting cyberbullying victimisation rates ranging from 5% to 64%. Harassment was the most common behaviour experienced. However, flaming, cyber-stalking, griefing, and shaming have not been thoroughly investigated. The impact and coping strategies, including support mechanisms, also lack research. Further investigation is needed to understand the various types of cyberbullying experienced by people with intellectual disabilities and to develop coping and resilience strategies. Recommendations for future research and practice are provided.

本范围界定综述研究了轻度至中度智障人士遭受网络欺凌的情况,重点关注特定类型的网络欺凌行为,如辱骂、骚扰和跟踪。我们利用 15 个电子数据库对实证研究进行了五个阶段的综述,涵盖了 1969 年 10 月至 2024 年 1 月期间的出版物。共选取了 12 项研究,报告的网络欺凌受害率从 5% 到 64% 不等。骚扰是最常见的行为。然而,对辱骂、网络跟踪、悲痛和羞辱等行为的调查还不够深入。对包括支持机制在内的影响和应对策略也缺乏研究。要了解智障人士所经历的各种类型的网络欺凌,并制定应对和复原策略,还需要进一步的调查。本文对未来的研究和实践提出了建议。
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引用次数: 0
People with intellectual disability and their risk of exposure to violence: Identification and prevention - a literature review. 智障人士及其遭受暴力的风险:识别和预防--文献综述。
IF 1.5 4区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2024-05-07 DOI: 10.1177/17446295241252472
Mikaela Starke, Anneli Larsson, Elisabeth Punzi

The aim of the literature review was to identify knowledge and knowledge gaps concerning risks of violence toward children, youth, adults and elderly with intellectual disabilities, and how risks can be identified and prevented. The research revealed that children, youths and adults labelled with intellectual disabilities are more exposed to violence than others and that the target group lack knowledge about risks of violence and what it means to be exposed to violence. It was also found that professionals who work with people with intellectual disabilities may lack knowledge about violence, and those who work with violence lack knowledge about intellectual disabilities. There is thus a need to further elaborate routines to identify exposure to violence, and to identify the target group and a need to create collaborative teams with professionals who have in-depth knowledge of violence, and those who have in-depth knowledge about the target group.

文献综述的目的是确定有关针对智障儿童、青少年、成人和老年人的暴力风险的知识和知识差距,以及如何识别和预防风险。研究表明,被贴上智障标签的儿童、青少年和成年人比其他人更容易遭受暴力侵害,而且目标群体缺乏有关暴力风险以及遭受暴力侵害的含义的知识。研究还发现,从事智障人士工作的专业人员可能缺乏有关暴力的知识,而从事暴力工作的专业人员则缺乏有关智障的知识。因此,有必要进一步细化例行程序,以确定接触暴力的风险和目标群体,并有必要与对暴力有深入了解的专业人员和对目标群体有深入了解的专业人员建立合作团队。
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引用次数: 0
Home- vs gym-based exercise delivery modes of two multicomponent intensity training regimes on cardiorespiratory fitness and arterial stiffness in adults with intellectual and developmental disability during the COVID-19 pandemic - a randomized controlled trial. COVID-19大流行期间,两种多成分强度训练的家庭与健身房运动模式对智力和发育障碍成人心肺功能和动脉僵化的影响--随机对照试验。
IF 1.5 4区 医学 Q2 EDUCATION, SPECIAL Pub Date : 2024-03-27 DOI: 10.1177/17446295241242507
Xavier Melo, Bruno Simão, Catarina Catela, Isabel Oliveira, Sara Planche, Ana Louseiro, João Luís Marôco, Guillermo R Oviedo, Bo Fernhall, Helena Santa-Clara

Background: We compared the effects of home- vs gym-based delivery modes of two 8-week supervised multicomponent intensity training regimes on cardiorespiratory fitness and arterial stiffness in 17 adults with intellectual and developmental disability during the COVID-19 pandemic. Methods: Participants were assigned to sprint interval training or continuous aerobic training, both incorporating resistance training. The intervention started with 8-weeks of online training (M1-M2), 1-month of detraining, plus 8-weeks of gym-based training (M3-M4). Results: Peak oxygen uptake decreased from M1-M2 and increased from M2-M4. Central arterial stiffness decreased between M1-M2, and M1-M4, along with peripheral arterial stiffness. Central systolic blood pressure decreased from M1-M2 only with sprint interval training. Conclusion: Home-based training minimized the negative impact of the lockdown on central arterial stiffness and central blood pressure, but it did not match the benefits on cardiorespiratory fitness and peripheral arterial stiffness of a gym-based intervention, irrespective of the multicomponent intensity training regime. Registered in ClinicalTrials.gov NCT05701943.

背景:在 COVID-19 大流行期间,我们比较了家庭与健身房两种为期 8 周的监督多成分强度训练方法对 17 名智力和发育障碍成人的心肺功能和动脉僵化的影响。训练方法参与者被分配进行短跑间歇训练或持续有氧训练,两者都包含阻力训练。干预措施包括为期 8 周的在线训练(M1-M2)、1 个月的脱离训练以及为期 8 周的健身房训练(M3-M4)。结果显示峰值摄氧量从 M1 到 M2 有所下降,从 M2 到 M4 有所上升。中心动脉僵硬度在 M1-M2 和 M1-M4 之间有所下降,外周动脉僵硬度也有所下降。只有在短跑间歇训练时,中心收缩压才会在 M1-M2 期间下降。结论是家庭训练最大程度地减少了禁闭对中心动脉僵化和中心血压的负面影响,但无论采用哪种多成分强度训练方法,家庭训练都无法比拟健身房干预对心肺功能和外周动脉僵化的益处。已在 ClinicalTrials.gov NCT05701943 登记。
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引用次数: 0
期刊
Journal of Intellectual Disabilities
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