Journal of Intellectual Disability Research最新文献_第6页

Characterising repetitive behaviours in children and adolescents with Down syndrome 唐氏综合症儿童和青少年重复行为的特征。

IF 2.1 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-08-06 DOI: 10.1111/jir.13179

E. Fucà, F. Costanzo, S. Vicari

Background

Individuals with intellectual disability, including people with Down syndrome (DS), often exhibit restricted and repetitive behaviours (RRBs). However, RRBs have not been deeply characterised in children and adolescents with DS.

Method

The study encompassed a cohort of 151 participants aged 4 to 18 years with DS. RRBs were assessed utilising the Repetitive Behaviour Scale-Revised. Additionally, data pertaining to cognitive and adaptive functioning, linguistic abilities, sleep patterns and emotional/behavioural issues were gathered.

Results

Self-injurious behaviours were reported less frequently whereas parents most commonly endorsed items related to behaviours associated with the need for sameness and ritualistic behaviours. We observed very few gender differences, whereas some age-related differences emerged, with adolescents exhibiting higher scores in items related with higher-level RRBs. The analysis of the association between RRBs and clinical features revealed that RRBs were associated with parent-reported sleep difficulties, as well as with internalising and externalising problems. We also observed a negative correlation with IQ whereas associations with adaptive skills emerged mainly for lower-level RRBs, such as motor stereotypies. Finally, RRBs were negatively associated with linguistic abilities, both expressive and receptive.

Conclusions

RRBs in children and adolescents with DS are of significant clinical interest due to their associations with various clinical dimensions. Therefore, psychological and neuropsychiatric assessment should include an accurate evaluation of RRBs for young people with DS.

背景：包括唐氏综合征（DS）患者在内的智障人士经常表现出限制性重复行为（RRB）。然而，对患有唐氏综合症的儿童和青少年的限制性重复行为还没有深入研究：研究对象包括 151 名 4 至 18 岁的 DS 患者。RRB 采用重复行为量表（Repetitive Behaviour Scale-Revised）进行评估。此外，还收集了有关认知和适应功能、语言能力、睡眠模式和情绪/行为问题的数据：结果：自伤行为的报告频率较低，而家长最常认可的项目是与同一性需求相关的行为和仪式性行为。我们观察到的性别差异很小，但出现了一些与年龄相关的差异，青少年在与较高层次的 RRB 相关的项目中得分较高。对 RRB 与临床特征之间关系的分析表明，RRB 与家长报告的睡眠困难以及内化和外化问题有关。我们还观察到 RRB 与智商呈负相关，而与适应能力的关联主要出现在较低水平的 RRB 上，如运动刻板印象。最后，RRB 与语言能力（包括表达能力和接受能力）呈负相关：患有DS的儿童和青少年的RRB与不同的临床维度相关，因此具有重要的临床意义。因此，心理和神经精神评估应包括对 DS 青少年 RRB 的准确评估。

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引用次数: 0

IASSIDD 2024 重新认识连接，第 17 届 IASSIDD 世界大会。

IF 2.1 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-07-30 DOI: 10.1111/jir.13166

引用次数: 0

Sexual support and education for adults with mild intellectual disabilities: a Delphi study on multiple perspectives 为轻度智障成人提供性支持和性教育：关于多种观点的德尔菲研究。

IF 2.1 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-07-18 DOI: 10.1111/jir.13172

W. de Wit, N. Frielink, D. Roeg, P. J. C. M. Embregts

Background

Providing appropriate sexual support and education for adults with mild intellectual disabilities (IDs) is a source of considerable debate, resulting in diverse, non-funded and potentially adverse practices. This study aims to identify a consensus among experts regarding what conditions are conducive to successful sexual support and education for adults with mild IDs.

Methods

A Delphi study was conducted with 13 experts, including experts-by-experience, relatives, support staff, psychologists and sexologists. Qualitative data on the conditions for sexual support and education were gathered in the first round and thematically analysed. In the following three quantitative rounds, consensus was achieved using Likert-type response scales and participants' feedback.

Results

Round 1 resulted in 82 conditions on six themes: ‘the necessary attitude’, ‘requirements’, ‘approach to delivering sexual support and education’, ‘appropriate providers’, ‘settings and timing’ and ‘effective collaboration with the network’. In the following three quantitative rounds, the experts reached consensus on 68 conditions distributed across the six themes.

Conclusions

The six themes highlight conducive conditions for successful sexual support and education for adults with mild IDs, emphasising the significance of a safe and supportive environment, comprehensive educational programmes, and the promotion of autonomy and protection. The consensus-based findings have distinct implications for practice and future research.

背景：为轻度智障（IDs）成人提供适当的性支持和性教育是一个引起大量争论的问题，导致了不同的、无资金支持的和潜在的不利做法。本研究旨在确定专家们的共识，即哪些条件有利于为轻度智障成人提供成功的性支持和教育：方法：与 13 位专家（包括经验专家、亲属、支持人员、心理学家和性学家）进行了德尔菲研究。第一轮研究收集了有关性支持和性教育条件的定性数据，并进行了专题分析。在随后的三轮定量分析中，使用李克特式反应量表和参与者的反馈意见达成了共识：第一轮共收集到 82 项条件，涉及六个主题："必要的态度"、"要求"、"提供性支持和教育的方法"、"适当的提供者"、"环境和时间 "以及 "与网络的有效合作"。在随后的三轮定量分析中，专家们就分布在六个主题中的 68 个条件达成了共识：这六个主题强调了为轻度智障成人提供成功的性支持和性教育的有利条件，强调了安全和支持性环境、全面的教育计划以及促进自主和保护的重要性。以共识为基础的研究结果对实践和未来研究具有独特的意义。

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引用次数: 0

Feasibility study of a parent-driven intervention for youth with Down syndrome 针对患有唐氏综合症的青少年开展的一项以家长为主导的干预措施的可行性研究。

IF 2.1 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-07-09 DOI: 10.1111/jir.13171

M. Stone-Heaberlin, A. Blackburn, E. K. Hoffman, A. J. Esbensen

Background

Children with Down syndrome present with behavioural and emotional difficulties, including noncompliance, rule-breaking, emotion dysregulation and delays in executive functioning. Few behavioural interventions have been designed specifically for children with Down syndrome. The Research Units in Behavioral Intervention (RUBI) Parent Training for Disruptive Behaviors is a structured empirically supported parent training programme developed for caregivers of children with autism. This feasibility trial explored the feasibility and acceptability of an abbreviated RUBI intervention with caregivers of children with Down syndrome and identified promising outcome measures to target in future larger clinical trials.

Method

A double-blind randomised feasibility pilot clinical trial allocated participants to a behavioural intervention (BEH) or educational (EDU) group. BEH and EDU consisted of five individual sessions over the course of 5 to 8 weeks. Measures were administered to 20 caregivers and their youth with Down syndrome at three time points.

Results

Both BEH and EDU were rated as feasible with high parental adherence and acceptable with high treatment satisfaction. Both BEH and EDU demonstrated decreased externalising behaviours, irritability and hyperactivity and improved behavioural regulation in executive functioning over time. No impact was noted on caregiver functioning.

Conclusion

The feasibility trial has strong findings regarding feasibility and satisfaction and has promising findings regarding the selection of measures for future trials testing an adapted RUBI programme and an education programme to reduce behavioural challenges in children with Down syndrome. Larger scale clinical trials are needed to confirm promising findings of these feasible treatments.

背景：患有唐氏综合症的儿童在行为和情绪方面存在困难，包括不遵守规则、破坏规则、情绪失调和执行功能迟缓。很少有专门针对唐氏综合症儿童设计的行为干预措施。行为干预研究单位（RUBI）针对破坏性行为的家长培训是一项结构化的家长培训计划，该计划专为自闭症儿童的照顾者开发，并得到了经验的支持。这项可行性试验探讨了针对唐氏综合症儿童看护者的简略RUBI干预的可行性和可接受性，并确定了有希望在未来更大规模临床试验中作为目标的结果测量指标：双盲随机可行性试点临床试验将参与者分配到行为干预组（BEH）或教育组（EDU）。BEH和EDU包括5至8周的5次单独治疗。在三个时间点对 20 名护理人员及其患有唐氏综合症的青少年进行了测量：BEH和EDU均被评为可行，家长的依从性高，治疗满意度高。随着时间的推移，BEH 和 EDU 的外化行为、易怒和多动均有所减少，执行功能方面的行为调节也有所改善。结论：该可行性试验在可行性和满意度方面都有很好的结果，在为未来试验选择措施方面也有很好的结果，这些试验测试了经过调整的 RUBI 计划和教育计划，以减少唐氏综合症儿童的行为挑战。需要进行更大规模的临床试验，以确认这些可行疗法的预期结果。

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引用次数: 0

Cardiac autonomic modulation and exercise capacity in older adults with intellectual disability: A 6-month randomised control trial 智障老年人的心脏自主神经调节和运动能力：为期 6 个月的随机对照试验。

IF 2.1 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-07-03 DOI: 10.1111/jir.13162

M. Font-Farré, M. Guerra-Balic, A. C. Farche, A. C. de Medeiros Takahashi, S. Simón-Siles, G. R. Oviedo

Background

Despite reported physical and functional improvements with aerobic and sprint interval training (SIT) protocols in individuals with intellectual disability (ID), it is not known if these interventions' effectivity would promote improvements in cardiac autonomic modulation. This study aimed to investigate if a 6-month SIT or a continuous aerobic programme could enhance physical performance and cardiac autonomic modulation at rest, during physical activity (PA) and after it in older adults with an ID.

Methods

This is a randomised control trial. Participants with ID (age: 50.58 ± 7.25) were allocated to one of three groups [multicomponent aerobic training group (MATG), multicomponent interval sprint training group (MISTG) and control group (CG)]. The programmes lasted 24 weeks, with three sessions/week, 75–90 min per session. The HRV was analysed at rest and recovery, the delta of heart rate (HR) was analysed during 6MWT, and the HR t-off kinetics was analysed in recovery after 6MWT.

Results

There were not found differences between groups, moments, or interaction for cardiac autonomic modulation at rest and recovery. During exercise, only MSITG showed a significant increase of HR between rest and the first 30 s of exercise (P < 0.05). Physical performance increased only in MSITG (P < 0.05), while CG showed a significant reduction (P < 0.01).

Conclusions

The MSITG improved the physical performance and the vagal withdrawal at the beginning of the submaximal exercise. These findings suggest that high-intensity exercise may positively impact baroreflex function, mitigating the decline in autonomic reflex response capacity associated with aging in individuals with ID.

背景：尽管有报道称，有氧训练和短跑间歇训练（SIT）方案可改善智障人士的体能和功能，但这些干预措施的效果是否能促进心脏自主神经调节的改善尚不清楚。本研究旨在调查为期 6 个月的短跑间歇训练或持续有氧训练方案是否能提高智障老年人在休息时、体力活动（PA）期间和活动后的体能表现和心脏自律调节能力：这是一项随机对照试验。患有智障的参与者（年龄：50.58 ± 7.25）被分配到三组中的一组[多组分有氧训练组（MATG）、多组分间歇短跑训练组（MISTG）和对照组（CG）]。训练计划持续 24 周，每周三次，每次 75-90 分钟。分析了休息和恢复时的心率变异，分析了6MWT期间的心率(HR)δ，分析了6MWT后恢复时的心率t-off动力学：结果：在静息和恢复期的心脏自律神经调节方面，没有发现组间差异、时刻差异或相互作用差异。在运动过程中，只有 MSITG 在休息和运动的前 30 秒之间显示出心率的显著增加（P 结论：MSITG 改善了运动表现：MSITG 改善了亚极限运动开始时的体能表现和迷走神经抑制。这些研究结果表明，高强度运动可能会对气压反射功能产生积极影响，从而缓解智障人士随着年龄增长而出现的自律神经反射能力下降。

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引用次数: 0

Strength of relationship between body mass index and gross motor capacity in youth with intellectual disabilities 智障青少年体重指数与粗大运动能力之间的关系强度。

IF 2.1 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-06-24 DOI: 10.1111/jir.13168

K. Pitetti, F. Bertapelli, R. A. Miller, M. Loovis, W. D. do Amaral-Junior, M. M. de Barros-Filho, G. Guerra-Junior

Background

Adequate skill levels of gross motor capacity affect activities of daily living, participation in recreational activities and general physical activity levels of youths (7–21 years). Most studies of typically developing youths have reported significant negative relationships between gross motor capacity and body mass index. The latter findings are especially of concern for youths with intellectual disabilities in that it has been estimated that 61% of children and 66% of adolescents were classified as overweight/obese. Therefore, the purpose of this study was to determine the strength of the relationship between body mass index and gross motor capacity among youths with mild to moderate intellectual disability (ID).

Methods

Components of the Bruininks–Oseretsky Test of Motor Proficiency (BOT-2) were used for designated aspects of gross motor capacity: six items for upper limb coordination (ULC); seven items for balance (BAL); six items for bilateral coordination (BLC); and one item for agility (A-2). Participants consisted of 654 youths (438 men), ages 8–21 years with ID. Participants were divided into pre-puberty and post-puberty men (post ≥12 years) and women (post ≥10 years of age). Body mass index (BMI, kg/m²) was determined by height and weight measurements on the day of testing. A Kendall's tau correlation coefficient (τ) was used to determine the strength of the relationship between body mass index and gross motor capacity (BOT-2 test scores).

Results

The τ values for both pre-puberty and post-puberty for all BAL, BLC, A-2 tests and for three of the six ULC tests were negligible to very weak (τ = 0 to ±0.19). Higher τ values were seen for pre-puberty youths in three of the ULC tests, but they fell within the weak range (τ < 0.24). When combining all pre-puberty and post-puberty participants, τ values were in the negligible to very weak range for all tests.

Conclusion

The strength of relationship between body mass index and gross motor capacity as measured by the BOT-2 subtest item scores used in this study is very weak and suggests that they are not clinically relevant.

背景：适当的粗大运动能力会影响青少年（7-21 岁）的日常生活活动、参与娱乐活动和一般体育活动水平。大多数针对发育正常青少年的研究报告都指出，粗大运动能力与体重指数之间存在显著的负相关关系。据估计，61% 的儿童和 66% 的青少年被归类为超重/肥胖。因此，本研究旨在确定轻度至中度智障青少年的体重指数与粗大运动能力之间的关系强度：方法：使用布鲁宁克斯-奥塞瑞斯基运动能力测试（BOT-2）的部分项目来测试粗大运动能力的指定方面：上肢协调能力（ULC）6 个项目；平衡能力（BAL）7 个项目；双侧协调能力（BLC）6 个项目；敏捷能力（A-2）1 个项目。参与者包括 654 名 8 至 21 岁的智障青少年（438 名男性）。参与者分为青春期前和青春期后的男性（年龄≥12 岁）和女性（年龄≥10 岁）。体重指数（BMI，kg/m2）通过测试当天测量的身高和体重确定。Kendall's tau 相关系数（τ）用于确定体重指数与粗大运动能力（BOT-2 测试得分）之间的关系强度：所有 BAL、BLC、A-2 测试和六项 ULC 测试中的三项测试在青春期前和青春期后的τ 值从可忽略到非常弱（τ = 0 至 ±0.19）。在三项 ULC 测试中，青春期前青少年的 τ 值较高，但都在较弱的范围内（τ 结论）：本研究中使用的 BOT-2 分测验项目得分所测量的体重指数与粗大运动能力之间的关系强度非常弱，表明它们与临床无关。

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引用次数: 0

Organised and non-organised activities contribute to overall physical activity levels in adolescents and young adults with Down syndrome: a cross-sectional study 有组织和无组织活动对患有唐氏综合症的青少年总体体育活动水平的影响：一项横断面研究。

IF 2.1 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-06-18 DOI: 10.1111/jir.13164

R. Izquierdo-Gomez, N. Shields

Background

Participation in organised and non-organised physical activities among adolescents and young adults with Down syndrome is underexplored. This study aimed to examine differences between organised and non-organised physical activities among adolescents and young adults with Down syndrome.

Methods

Forty participants with Down syndrome (27 woman; mean age 21.4 ± 4.9 years) were recruited. Data on physical activity participation were collected by self- or proxy-reported questionnaires about attendance, involvement and type of physical activity.

Results

Adolescents and young adults with Down syndrome participated in more organised than non-organised activities (P < 0.05), more often (P < 0.05), but there was no difference in the total time spent participating in these activities overall. Participants spent more time in vigorous physical activity during organised activities (P < 0.05) and spent more time in light physical activity during non-organised physical activities (P < 0.05). Dancing (organised activity) and walking (non-organised activity) were the most reported activities.

Conclusions

Participation in both organised and non-organised physical activities is important to increase overall physical activity levels of adolescents and young adults with Down syndrome. Future research exploring physical activity preferences may help guide the planning and adaption of community programmes for this group.

背景：对患有唐氏综合症的青少年和年轻成人参加有组织和无组织体育活动的情况尚未进行充分调查。本研究旨在探讨患有唐氏综合症的青少年有组织和无组织体育活动之间的差异：招募了 40 名患有唐氏综合征的参与者（27 名女性；平均年龄为 21.4 ± 4.9 岁）。参与体育活动的数据通过自我或委托人报告的问卷收集，问卷内容包括参加体育活动的次数、参与程度和类型：结果：患有唐氏综合征的青少年参加有组织活动的比例高于无组织活动（P参加有组织和无组织的体育活动对于提高患有唐氏综合症的青少年的总体体育活动水平非常重要。未来对体育活动偏好的探索研究可能有助于指导针对这一群体的社区计划的规划和调整。

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引用次数: 0

The cumulative impact of attention deficit hyperactivity disorder, autism and intellectual disability for young people 注意缺陷多动障碍、自闭症和智障对青少年的累积影响。

IF 2.1 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-06-17 DOI: 10.1111/jir.13170

J. Hollingdale, E. Woodhouse, M. S. Tibber, E. Simonoff, M. J. Hollocks, T. Charman

Background

Neurodevelopmental conditions frequently co-occur. The aim of this paper was to determine whether there is a cumulative association between (1) the number of neurodevelopmental conditions, specifically hyperkinetic disorder (hereafter referred to as attention deficit hyperactivity disorder), autism spectrum disorder (hereafter referred to as autism) and intellectual disability, and (2) behavioural and socio-emotional problems and the level of clinician-rated functioning for young males and females.

Methods

In this cross-sectional study, diagnostic information, caregiver-rated behavioural and socio-emotional data (as conceptualised by the Strengths and Difficulties Questionnaire) and clinician-rated functioning scores (as conceptualised by the Children's Global Assessment Scale) were extracted from electronic patient records for 2768 young people aged 3–17 years (mean = 11.55, SD = 3.46). All data were extracted at baseline, that is, at the time the young person was diagnosed with attention deficit hyperactivity disorder, autism and/or an intellectual disability. Ordinal regression analyses tested associations between the number of neurodevelopmental conditions met (i.e. 1, 2 or 3) and behavioural and socio-emotional outcomes and functioning.

Results

After controlling for age and biological sex, the number of neurodevelopmental conditions was associated with higher levels of inattention/hyperactivity and peer problems, lower levels of prosocial behaviour and poorer clinician-rated functioning. Although these findings were consistent for males, a cumulative association was not identified for females, except for clinician-rated functioning.

Conclusions

For young people, the presence of multiple neurodevelopmental conditions may have a cumulative impact across domains, but this may differ between males and females.

背景：神经发育疾病经常并发。本文旨在确定：(1) 神经发育疾病的数量，特别是过度运动障碍（以下简称 "注意缺陷多动障碍"）、自闭症谱系障碍（以下简称 "自闭症"）和智力障碍；(2) 行为和社会情感问题与临床医生评定的男女青少年功能水平之间是否存在累积关联：在这项横断面研究中，我们从 2768 名 3-17 岁青少年（平均值 = 11.55，标准差 = 3.46）的电子病历中提取了诊断信息、护理人员评定的行为和社会情感数据（以优势和困难问卷为概念）以及临床医生评定的功能得分（以儿童全面评估量表为概念）。所有数据均在基线时提取，即在青少年被诊断为注意力缺陷多动障碍、自闭症和/或智力障碍时提取。序数回归分析检验了符合神经发育条件的数量（即 1、2 或 3）与行为和社会情感结果和功能之间的关联：结果：在控制了年龄和生理性别后，神经发育状况的数量与注意力不集中/多动和同伴问题水平较高、亲社会行为水平较低以及临床医生评定的功能较差有关。虽然这些发现在男性中是一致的，但在女性中，除了临床医生评定的功能外，没有发现累积性关联：结论：对于青少年来说，多种神经发育状况可能会在各个领域产生累积性影响，但男女之间可能会有所不同。

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引用次数: 0

The prospective associations between autonomy support, basic psychological needs, motivation and well-being among people with a mild to borderline intellectual disability: a two-wave study 轻度至边缘智障人士的自主支持、基本心理需求、动机和幸福感之间的前瞻性关联：两波研究。

IF 2.1 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-06-17 DOI: 10.1111/jir.13163

N. Frielink, C. Schuengel, S. H. G. van der Ven, P. J. C. M. Embregts

Background

This study, grounded in self-determination theory, examined how satisfaction of the needs for autonomy, relatedness and competence in people with mild to borderline intellectual disability (MBID) changed over a 4.5-year period. Additionally, it explored the association between life events across various domains (i.e. health, support and living situation, crime, relationships and freedom and finance) and these changes and explored the prospective associations between these needs, perceptions of support from direct support staff and the well-being and ill-being of people with MBID.

Methods

Based on a sample of 117 adults with MBID, multiple regression analyses were conducted to determine correlations between constructs at both time points and the impact of autonomy support on need satisfaction and motivation, taking into account life events.

Results

The analyses showed that, at both time points, most constructs were statistically significantly correlated and remained so despite a time lag of 4.5 years. Autonomy support emerged as a significant positive predictor, of medium size, for satisfying autonomy and relatedness needs. Its association with competence need satisfaction was not statistically significant after Bonferroni correction. For type of motivation, autonomy support statistically predicted increased autonomous motivation, irrespective of life events.

Conclusions

Findings underline the potential of autonomy supportive direct support in the lives of individuals with MBID. Some unexpected null findings underscore the need for further study into the interplay between autonomy support, life events and the well-being of people with MBID.

研究背景本研究以自我决定理论为基础，探讨了轻度至边缘智障人士（MBID）在 4.5 年的时间里对自主性、相关性和能力需求的满足程度是如何变化的。此外，该研究还探讨了各个领域（即健康、支持和生活状况、犯罪、人际关系以及自由和财务）的生活事件与这些变化之间的关联，并探讨了这些需求、对直接支持人员提供的支持的感知以及轻度至边缘型智障人士的幸福与不幸之间的前瞻性关联：方法：以 117 名成年 MBID 患者为样本，在考虑到生活事件的情况下，进行多元回归分析，以确定两个时间点的构建之间的相关性，以及自主支持对需求满足和动机的影响：分析结果表明，在两个时间点上，大多数构念在统计学上都有显著相关性，而且尽管相隔了 4.5 年，这种相关性依然存在。自主性支持对自主性和相关性需求的满足具有中等程度的积极预测作用。经过 Bonferroni 校正后，自主支持与能力需求满足之间的关系在统计学上并不显著。在动机类型方面，自主支持在统计学上预测了自主动机的增加，与生活事件无关：结论：研究结果强调了自主支持性直接支持在 MBID 患者生活中的潜力。一些意料之外的无效研究结果强调，有必要进一步研究自主支持、生活事件和 MBID 患者福祉之间的相互作用。

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引用次数: 0

17th IASSIDD World Congress: reviewers list 第 17 届 IASSIDD 世界大会：审稿人名单。

IF 2.1 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2024-06-09 DOI: 10.1111/jir.13167

引用次数: 0