Journal of Intellectual Disability Research最新文献_第5页

Predictors of Receiving Disability Support Services After Release From Prison in Adults With Intellectual Disability: A Population-Based Linkage Study From New South Wales, Australia 智力残疾成年人出狱后接受残疾支持服务的预测因素：来自澳大利亚新南威尔士州的一项基于人口的联系研究。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-11-15 DOI: 10.1111/jir.70058

Jane Ye In Hwang, Julian Trofimovs, Hulya Sinmaz, Preeyaporn Srasuebkul, Phillip Snoyman, Stephen Hampton, Tony Butler, Samuel R. C. Arnold, Rebecca Reeve, Julian N. Trollor

Background

Individuals with intellectual disability are often reported to be overrepresented in prison populations and to have higher recidivism rates compared to those without intellectual disability, although these patterns vary substantially between countries and jurisdictions. Receiving post-release disability support services have been associated with reduced recidivism, most likely through mechanisms such as improved housing stability, mental health and social integration. This study aimed to further this literature by exploring predictors of receiving disability support after release from prison in adults with intellectual disability.

Methods

This retrospective cohort study analysed linked health and administrative data from New South Wales, Australia, to identify predictors of post-release disability support. Discrete-time survival analysis was used, incorporating variables such as age, gender, Aboriginal status and comorbid conditions. Insights from lived experience consultants with intellectual disability and incarceration histories were integrated to enhance our understanding of the findings and implications.

Results

A total of 1868 individuals with intellectual disability were released from custody in New South Wales between 2005 and 2015 and included in this study. Of these, 49.1% received disability support services in the year following release. Older age, mental illness and substance use were associated with a lower likelihood of receiving support, whilst autism, history of self-harm and higher socio-economic status were linked to increased support. These findings are evident of ‘cycling’ (repeated incarceration), ‘complexity’ (overlapping needs), ‘acuteness’ (health service contact) and ‘resources’ (social and financial) effects in shaping access to post-release support.

Conclusions

The findings reflect the challenge presented by the complex needs of those with intellectual disability who are justice-involved. The harmful and perpetuating nature of repeated incarceration for those with intellectual disability must be recognized and responded to. Targeted release planning is needed to improve disability support service receipt, particularly for those who have served long or repeated sentences and those with complex co-occurring mental health needs, with financial and social resource enhancement being ideal additional targets for intervention.

背景：据报道，与无智力残疾者相比，智力残疾者在监狱人口中的比例往往过高，其再犯率也更高，尽管这些模式在不同国家和司法管辖区之间差异很大。接受释放后残疾支助服务与减少再犯有关，这很可能是通过改善住房稳定性、心理健康和社会融合等机制实现的。本研究旨在进一步探讨智障成人刑满释放后接受残疾支持的预测因素。方法：本回顾性队列研究分析了来自澳大利亚新南威尔士州的相关健康和行政数据，以确定释放后残疾支持的预测因素。采用离散时间生存分析，纳入年龄、性别、原住民身份和合并症等变量。来自有智力残疾和监禁经历的生活经验顾问的见解被整合起来，以增强我们对研究结果和影响的理解。结果：2005年至2015年间，新南威尔士州共有1868名智障人士被释放并纳入本研究。其中，49.1%的人在获释后的一年内获得残疾支助服务。年龄较大、精神疾病和药物使用与获得支持的可能性较低有关，而自闭症、自残史和较高的社会经济地位与获得支持的可能性增加有关。这些发现明显体现了“循环”（反复监禁）、“复杂性”（重叠需求）、“尖锐性”（卫生服务联系）和“资源”（社会和经济）在塑造获得释放后支持方面的影响。结论：研究结果反映了涉及司法的智力残疾人士的复杂需求所带来的挑战。对智力残疾者反复监禁的有害和长期存在的性质必须得到承认和应对。需要有针对性的释放规划，以改善残疾支助服务的接收情况，特别是那些长期服刑或重复服刑的人以及同时存在复杂心理健康需求的人，增加财政和社会资源是理想的额外干预目标。

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引用次数: 0

Parental Feeding Styles, Parental Feeding Practices and Obesity Among Children With and Without Intellectual Disabilities 父母的喂养方式，父母的喂养方式和肥胖的儿童有和没有智力障碍。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-11-02 DOI: 10.1111/jir.70059

Carol Curtin, Aviva Must, Misha Eliasziw, Linda G. Bandini

<div> <section> <h3> Background</h3> <p>Children with intellectual disabilities are at increased risk for obesity compared to their typically developing counterparts. However, little work has been done to determine whether and how parental feeding styles and parental feeding practices may be associated with obesity in this population of children.</p> </section> <section> <h3> Methods</h3> <p>Fifty-nine typically developing children and 56 children with intellectual disabilities ages 3–8 years participated in the Children's Mealtime Study to compare parental feeding styles and practices and their association with obesity. Parents completed a demographic and medical questionnaire, the Caregiver Feeding Styles Questionnaire and the Comprehensive Feeding Practices Questionnaire. Children's height and weight were measured using a portable stadiometer and digital scale.</p> </section> <section> <h3> Results</h3> <p>The prevalence of obesity was higher in children with intellectual disabilities than in typically developing children (31.5% vs. 13.6%, respectively, <i>p</i> = 0.02). There were no differences in parental feeding styles between parents of children with intellectual disabilities and typically developing children. An ‘indulgent’ feeding style (low demandingness/high responsiveness) was associated with obesity in typically developing children but not in children with intellectual disabilities. Relative to feeding practices, parents of children with intellectual disabilities were more likely than parents of typically developing children to restrict food for weight control (<i>p</i> = 0.003), allow child control over eating (<i>p</i> = 0.005) and use food for emotion regulation (<i>p</i> = 0.01). Parents of typically developing children were more likely to encourage balance and variety (<i>p</i> = 0.02), exert pressure to eat (<i>p</i> = 0.007), teach about nutrition (<i>p</i> < 0.001) and involve their children in meal planning/preparation (<i>p</i> < 0.001) than parents of children with intellectual disabilities. Several feeding practices were significantly related to obesity, but none differed between children with intellectual disabilities and typically developing children. In particular, restriction for weight control and restriction for health were positively related to obesity whereas pressure and involvement were inversely related to obesity.</p> </section> <section> <h3> Conclusions</h3> <p>Parental feeding style was not associated with obesity in children with intellectual disabilities, which may suggest that weight status in this population is affected by other factors. Although there were differences between som

背景：与正常发育的儿童相比，智障儿童患肥胖症的风险更高。然而，很少有研究确定父母的喂养方式和喂养方式是否以及如何与这类儿童的肥胖相关。方法：59名正常发育儿童和56名3-8岁的智障儿童参与了儿童进餐时间研究，比较父母的喂养方式和做法及其与肥胖的关系。家长填写了人口统计和医学调查问卷、照料者喂养方式调查问卷和综合喂养方法调查问卷。使用便携式体重计和数字秤测量儿童的身高和体重。结果：智力障碍儿童的肥胖患病率高于正常发育儿童（31.5%比13.6%,p = 0.02）。智力障碍儿童的父母与正常发育儿童的父母在喂养方式上没有差异。“放纵”的喂养方式（低要求/高反应）与正常发育儿童的肥胖有关，但与智力残疾儿童无关。相对于喂养方式，智力残疾儿童的父母比正常发育儿童的父母更有可能限制食物以控制体重（p = 0.003），允许孩子控制饮食（p = 0.005），并使用食物来调节情绪（p = 0.01）。正常发育儿童的父母更有可能鼓励平衡和多样化（p = 0.02），施加饮食压力（p = 0.007），传授营养知识(p)。结论：父母的喂养方式与智力残疾儿童的肥胖无关，这可能表明该人群的体重状况受到其他因素的影响。尽管智力残疾儿童的父母和正常发育儿童的父母在某些喂养方法上存在差异，但与肥胖有关的喂养方法在两组之间没有差异。未来的工作将阐明这一人群的喂养方式和体重状况之间的因果关系。

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引用次数: 0

EAMHID 2025

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-10-31 DOI: 10.1111/jir.70044

引用次数: 0

Implementation of Online Mindfulness With Peer Mentoring for Parent and Sibling Carers of People With Intellectual and Developmental Disabilities 对智力和发育障碍者的父母和兄弟姐妹照顾者实施在线正念与同伴辅导。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-10-20 DOI: 10.1111/jir.70057

Caitlin A. Murray, Nikita K. Hayden, Alex Gordon-Brown, Samantha Flynn, Clare Bonetree, Andrew Harper, Clare Kassa, David Mahon, Catherine McGee, Richard P. Hastings

Background

There is promising evidence for the adaptation of online mindfulness interventions for parent carers of individuals with intellectual and developmental disabilities by including supplementary peer support sessions. However, there remain questions about wider implementation beyond the research setting and the inclusion of more diverse populations of family caregivers, including adult siblings and family carers who less typically receive support and are often under-represented in research.

Method

One hundred and one family carers (n = 58 parents, n = 43 adult siblings) were provided with access to Be Mindful (an online mindfulness intervention) with additional telephone peer mentor support. Participants were asked to complete baseline and follow-up questionnaires before and after the intervention in a pre-post pre-experimental design, and engagement with the intervention and peer support was examined.

Results

Recruitment was successful in targeting more diverse groups, including adult siblings. Intervention completion was low overall (n = 37). Parent and sibling carers made differing levels of progress with the intervention and peer support calls, although 81.8% of those who completed the intervention before the end of the project had also received all three support calls. Preliminary follow-up data, though with low retention, indicated improvements in psychological wellbeing for family carers over time.

Conclusions

The intervention and additional telephone-guided support were received well by family carers of people with intellectual and developmental disabilities, although further work is needed to determine the feasibility of future implementation.

背景：有很好的证据表明，通过包括补充同伴支持会议，在线正念干预适用于智力和发育障碍个体的父母照顾者。然而，在研究范围之外的更广泛的实施以及包括更多样化的家庭照顾者人群，包括成年兄弟姐妹和家庭照顾者，这些人通常得不到支持，而且在研究中往往代表性不足，仍然存在问题。方法：为101名家庭照顾者（n = 58名父母，n = 43名成年兄弟姐妹）提供“正念”（一种在线正念干预）和额外的电话同伴导师支持。参与者被要求在干预前后完成基线和随访问卷，并对干预和同伴支持的参与情况进行了检查。结果：招募是成功的针对更多样化的群体，包括成年兄弟姐妹。干预完成率总体较低（n = 37）。父母和兄弟姐妹的照顾者在干预和同伴支持电话方面取得了不同程度的进展，尽管在项目结束前完成干预的人中有81.8%也收到了所有三个支持电话。初步的随访数据显示，尽管保留率较低，但随着时间的推移，家庭照顾者的心理健康状况有所改善。结论：干预和额外的电话指导支持得到了智力和发育障碍者家庭照顾者的良好接受，尽管需要进一步的工作来确定未来实施的可行性。

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引用次数: 0

Codesigning a Neurocognitive Assessment Protocol for Hyperphagia: Perspectives From Stakeholders in Prader–Willi Syndrome 共同设计贪食症的神经认知评估方案：来自Prader-Willi综合征利益相关者的观点。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-10-20 DOI: 10.1111/jir.70053

Sarah-Marie Feighan, Áine McNicholas, Alexandra P. Key, Anastasia Dimitropoulos, Edna Roche, Ciara J. Molloy, Louise Gallagher

Background

Hyperphagia—characterized by an overwhelming drive to consume food—is a core feature of Prader–Willi syndrome (PWS) that profoundly impacts individuals and families. Objective measures of hyperphagia are urgently needed to support therapeutic development and improve clinical outcomes for individuals with PWS. Eye tracking may offer a scalable, noninvasive method for capturing attentional responses to food cues. By capturing visual attentional responses to food before and after eating, eye tracking may offer an indirect, objective method for assessing impairments in satiety that are associated with hyperphagia.

Methods

We adapted a previously developed eye-tracking task—designed to detect attentional bias to food stimuli in hungry versus satiated states—for use with the PWS community. A codesign approach was used, involving focus groups with caregivers and professionals. Stakeholders identified key barriers to participation, including food-related anxiety, sensory sensitivities and the need for predictable routines. Protocol adaptations included flexible scheduling, individualized meal options and ‘food certainty’ to reduce stress and enhance adherence.

Results

The adapted protocol was feasible and acceptable, with a 92.6% completion rate and full adherence to fasting and standardized meal requirements among participants with PWS. Stakeholders reported high engagement and comfort with the revised approach.

Conclusion

This study demonstrates the value of codesign in tailoring neurocognitive protocols for individuals with complex needs. By integrating stakeholder insights, we enhanced feasibility, accessibility and data quality. The adapted eye-tracking protocol shows promise as a scalable, objective method to assess hyperphagia-related cognitive responses and may inform future clinical trials in PWS and related conditions.

背景：嗜食症是普瑞德-威利综合征（PWS）的一个核心特征，它对个人和家庭产生了深远的影响。迫切需要客观的贪食措施来支持治疗发展和改善PWS患者的临床结果。眼动追踪可以提供一种可扩展的、无创的方法来捕捉对食物线索的注意力反应。通过捕捉进食前后对食物的视觉注意力反应，眼动追踪可以提供一种间接、客观的方法来评估与贪食相关的饱腹感损伤。方法：我们采用了先前开发的眼动追踪任务-旨在检测饥饿和饱腹状态下对食物刺激的注意偏向-用于PWS社区。采用了共同设计方法，包括护理人员和专业人员的焦点小组。利益攸关方确定了参与的主要障碍，包括与食物有关的焦虑、感官敏感性和对可预测常规的需求。方案调整包括灵活的日程安排、个性化的膳食选择和“食物确定性”，以减轻压力并提高依从性。结果：调整后的方案是可行和可接受的，PWS患者的完成率为92.6%，完全遵守禁食和标准化膳食要求。利益相关者报告了对修订后的方法的高度参与和满意。结论：本研究证明了协同设计在为具有复杂需求的个体量身定制神经认知方案方面的价值。通过整合利益相关者的见解，我们增强了可行性、可访问性和数据质量。眼动追踪方案有望作为一种可扩展的、客观的方法来评估贪食相关的认知反应，并可能为PWS和相关疾病的未来临床试验提供信息。

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引用次数: 0

Transition From Children's to Adults' Healthcare for Youth With (Genetic) Intellectual Disabilities: An ERN-ITHACA Guideline 从儿童到成人的青少年（遗传）智力残疾的医疗保健过渡：ERN-ITHACA指南。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-10-20 DOI: 10.1111/jir.70049

Mirthe J. Klein Haneveld, Katarzyna Świeczkowska, Tomasz Grybek, Kinga Labunets, Thérèse A. M. J. van Amelsvoort, Maria F. Bedeschi, Claire Behan, Andreas Dufke, Juliette Dupont, Charlotte M. W. Gaasterland, Livia Garavelli, Sissel B. Helverschou, Susan McAnallen, Katarzyna A. Milska-Musa, AnneLoes van Staa, Ioana Streață, Connie T. R. M. Stumpel, Federica Tamburrino, Mary Vasseghi, Klea Vyshka, Jolanta M. Wierzba, ERN-ITHACA Guideline Working Group, Agnies M. van Eeghen

Background

For young people with rare genetic neurodevelopmental disorders associated with intellectual disabilities, the transfer from paediatric to adult healthcare providers is often complicated. The European Reference Network ERN-ITHACA (Intellectual disability, TeleHealth, Autism and Congenital Anomalies) on Rare Congenital Malformations and Rare Intellectual Disability aims to improve this transition through the development of a guideline.

Method

Population-specific recommendations for the optimal transition to adult healthcare were developed by an interdisciplinary consortium, representing clinical, scientific and lived experience experts from nine European countries. Recommendations of the 2016 National Institute for Health and Care Excellence (NICE) guideline ‘Transition From Children's to Adults' Services for Young People Using Health or Social Care Services’ (NG43) were adapted, based on a literature review, expert opinion and lived experiences gathered through a survey, focus groups and discussions with self-advocates. A consensus meeting was held in Gdańsk, Poland, in October 2024.

Results

NICE guideline recommendations were adopted or adapted to the target population where necessary. New recommendations were formulated regarding the involvement of and assistance for young people and their families/caregivers, the coordination of interdisciplinary care, the role of centres of expertise, recommended interventions and psychosocial support.

Conclusions

Planned, coordinated, specialised, individualised and interdisciplinary healthcare is required to support young people with (genetic) intellectual disabilities. Active collaboration between healthcare providers, researchers and individuals with lived experience is essential both to improve current healthcare and to build a stronger evidence base for successful transition interventions going forward.

背景：对于患有与智力残疾相关的罕见遗传性神经发育障碍的年轻人，从儿科到成人医疗保健提供者的转移通常是复杂的。关于罕见先天性畸形和罕见智力残疾的欧洲参考网络ERN-ITHACA（智力残疾、远程保健、自闭症和先天性异常）旨在通过制定指南来改善这种转变。方法：一个跨学科的联盟，代表来自9个欧洲国家的临床、科学和生活经验专家，为向成人医疗保健的最佳过渡制定了针对特定人群的建议。根据文献综述、专家意见和通过调查、焦点小组和与自我倡导者的讨论收集的生活经验，改编了2016年国家健康和护理卓越研究所（NICE）指南“使用健康或社会护理服务的年轻人从儿童服务过渡到成人服务”（NG43）的建议。2024年10月，在波兰Gdańsk举行了共识会议。结果：NICE指南建议在必要时被采纳或适应目标人群。就青年人及其家庭/照料者的参与和援助、跨学科照料的协调、专门知识中心的作用、建议的干预措施和社会心理支助等问题拟订了新的建议。结论：需要有计划、协调、专业化、个性化和跨学科的医疗保健来支持（遗传）智力残疾的年轻人。医疗保健提供者、研究人员和有生活经验的个人之间的积极合作对于改善当前的医疗保健和为未来成功的过渡干预建立更强有力的证据基础至关重要。

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引用次数: 0

Navigating Conviviality and Co-Viviality: Persons With Intellectual Disabilities and Mental Health Problems' Home Making in Residential Care 欢愉与共同生活：智障人士与精神健康问题人士在安老院的家居服务。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-10-14 DOI: 10.1111/jir.70056

Toon Benoot, Laurine Bourgonjon, Dries Cautreels, Griet Roets

Background

Recent numbers of the share of residential services in the Flemish care reveal that implementing personal budgets did not ignite a large-scale departure from residential care and that the use of full-time residential care even increased. Despite incentives to leave residential care, people with intellectual disabilities and mental health problems (PIDMHP) in particular continue to keep living there (or choose to keep living there). Gaining insight into the possibilities PIDMHP living in residential care have for making a home is of importance in the ever-continuing inquiry and discussion of how to contribute to enhancing service quality and spatial living conditions for PIDMHP.

Method

This contribution is built around shadowing activities with 20 PIDMHP living in a residential care facility in Flanders (Belgium), as a form of one-on-one ethnography, coupled with go-along interviews with 12 professional carers.

Results

PIDMHP showcases a myriad of socio-spatial strategies relating to co-viviality and conviviality to make sense of ‘a good home’ in residential care. These strategies emerge within power dynamics and, in the process, are not always recognised by professionals as meaningful/significant or supported to come into being.

Conclusions

The conducts of the residents and support workers are not passive by-products of the building design but constitute active shaping of that living environment themselves by means of socio-spatial strategies. The strategies employed by residents are embedded within rules and structures established by professionals. These power dynamics within which ‘home-making’ takes shape are especially relevant when considering the transformation of residential care facilities and challenging prevailing institutional logics.

背景：最近佛兰德护理中住宿服务份额的数字表明，实施个人预算并没有引发大规模离开住宿护理，而且使用全职住宿护理甚至有所增加。尽管有离开寄宿照料的激励措施，特别是有智力残疾和精神健康问题的人继续住在那里（或选择住在那里）。在不断探讨和讨论如何为提高PIDMHP的服务质量和空间生活条件做出贡献的过程中，深入了解PIDMHP居住在住宿护理中的可能性是非常重要的。方法：这一贡献是建立在对居住在佛兰德斯（比利时）的一家寄宿护理机构的20名PIDMHP进行跟踪活动的基础上的，作为一种一对一的人种志形式，加上对12名专业护理人员的随车采访。结果：PIDMHP展示了无数与共同生活和欢乐相关的社会空间策略，以理解寄宿护理中的“好家”。这些策略出现在权力动力学中，在这个过程中，并不总是被专业人士认为有意义/重要或支持形成。结论：居民和工作人员的行为不是建筑设计的被动副产品，而是通过社会空间策略主动塑造生活环境。居民所采用的策略嵌入在由专业人士建立的规则和结构中。当考虑到住宅护理设施的转型和对现行制度逻辑的挑战时，“家庭制造”形成的这些权力动态尤其相关。

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引用次数: 0

Criterion Validity, Scalability and Stability of Scoring on the Bayley-III in Children With Angelman Syndrome Angelman综合征儿童Bayley-III评分标准的效度、可扩展性及稳定性。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-10-13 DOI: 10.1111/jir.70026

Maartje ten Hooven-Radstaake, Sabine Herrman-Mous, Anjali Sadhwani, Anne Wheeler, Margaret DeRamus, Gwen Dieleman, Cindy Navis, Jeroen Legerstee, Leontine ten Hoopen, Jan van der Ende, Casey Okoniewski, Laura Hiruma, ENCORE group, André Rietman

Background

The Bayley Scales of Infant Development is used in many studies and clinical trials in children with developmental disabilities, including children with Angelman syndrome (AS).

Method

We assessed 142 children with AS in an international multicentre study with the Bayley Scales of Infant Development III, of which 52 children were tested more than once. We assessed criterion validity using proportion analysis, scalability using Mokken analyses and stability of scoring by counting pass-to-fail and fail-to-pass items.

Results

Results revealed good scalability in all scales but the expressive language scale, indicating that the items of these scales measured one underlying trait. In the expressive language scale, the AS-related speech difficulties invalidated scoring. Scoring within children across assessments was unstable for all scales except the gross motor scale, as more than half of the children made one or more errors in previously correct items. Loss or regression of skills does not fully explain this finding. Alternative explanations including motivation, concentration, on-task behaviour and anxiety should also be considered when scores decline.

Conclusions

This study shows that caution should be taken when interpreting single and successive scores of children with AS on the Bayley-III and that other forms of assessment should complement assessment in children with AS.

背景：Bayley婴儿发育量表被用于许多发育障碍儿童的研究和临床试验，包括Angelman综合征（AS）儿童。方法：在一项国际多中心研究中，我们使用Bayley婴儿发育量表III评估了142名AS儿童，其中52名儿童进行了不止一次的测试。我们使用比例分析来评估标准的有效性，使用Mokken分析来评估可扩展性，并通过计算合格和不合格项目来评估评分的稳定性。结果：除表达性语言量表外，其他量表均具有良好的可扩展性，表明这些量表的项目测量了一个潜在的特质。在表达语言量表中，与阿斯伯格综合症相关的言语困难使得分无效。除了大运动量表外，儿童在所有量表上的得分都不稳定，因为超过一半的儿童在之前正确的项目中犯了一个或多个错误。技能的丧失或退化并不能完全解释这一发现。当分数下降时，还应该考虑其他解释，包括动机、注意力、任务行为和焦虑。结论：本研究表明，在解释单一和连续的Bayley-III评分时应谨慎，其他形式的评估应补充对AS儿童的评估。

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引用次数: 0

Clinical Models of Care for Adults With Intellectual Disabilities in Forensic Mental Health Services: A Scoping Review 司法精神卫生服务机构对智力残疾成人护理的临床模式：范围综述

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-10-13 DOI: 10.1111/jir.70048

Alina Haines-Delmont, Dineesha Georgeena Rajan, Sian Cooper, Faye McLoughlin, Sahrish Ali, Katie Goodall, Joy Duxbury, Faith Hurley, Camilla Lindekilde, Michaela Thomson, Rachel Whyte, Erica Hateley, Tella Lantta

Background

People with intellectual disabilities (ID) and forensic histories face significant health inequalities, including reduced quality of life and prolonged stays in mental health hospitals. This is a global health issue, and there is an urgent need for evidence-based specific forensic interventions, models of care and service models to allow for effective discharge in the community, improve long-term outcomes and reduce healthcare costs.

Method

This scoping review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Extension for Scoping Reviews. We have adapted Morrisey's framework to report outcomes of clinical models of care to include (i) effectiveness of treatment; (ii) patient safety; (iii) patient and family experience of care; and (iv) staff outcomes, skills and attributes.

Results

Fifty-six studies were included in this review, reporting on 49 interventions, models of care and service models (referred to as ‘models’). Four forensic models of care were identified as best practice: the Discharge Pathway Protocol, the Care Pathway-Based Approach, the Psychological Treatment Pathway and the Forensic Intellectual Disability Secure Services (FIDSS) Model of Care. The first three have demonstrated effectiveness in reducing length of stay, facilitating timely discharges and improving patient outcomes for individuals with ID, while the FIDSS Model of Care represents a holistic and culturally sensitive approach emphasising person-centred care, rehabilitation and quality of life. The findings underscore the need for larger studies to explore predictors of successful discharge and long-term outcomes.

Conclusions

This is the first review to bring together ‘clinical effectiveness’ studies and those reporting on patient and family experience, as well as staff's needs, attributes and experiences. Policymakers and practitioners should consider the models identified here as frameworks for developing effective, person-centred care pathways, ensuring appropriate staff training and support, meaningful communication and work with the patient and their family/peers/support network and integrating community services to address the complex needs of this vulnerable population.

背景：智力残疾者（ID）和有法医史的人面临着严重的健康不平等，包括生活质量下降和在精神卫生医院的住院时间延长。这是一个全球性的健康问题，迫切需要以证据为基础的具体法医干预措施、护理模式和服务模式，以便在社区有效出院，改善长期成果并降低医疗保健费用。方法：根据系统评价和荟萃分析首选报告项目（PRISMA）扩展范围评价进行范围评价。我们对Morrisey的框架进行了调整，以报告临床护理模式的结果，包括：(1)治疗的有效性；（ii）患者安全；（iii）病人和家属的护理经验；（iv）员工成果、技能和属性。结果：本综述纳入56项研究，报告了49项干预措施、护理模式和服务模式（简称“模式”）。四种法医护理模式被确定为最佳实践：出院途径协议、基于护理途径的方法、心理治疗途径和法医智力残疾安全服务（FIDSS）护理模式。前三种方法在缩短住院时间、促进及时出院和改善ID患者的预后方面已证明有效，而FIDSS护理模式代表了一种整体的、文化敏感的方法，强调以人为本的护理、康复和生活质量。研究结果强调需要更大规模的研究来探索成功出院和长期结果的预测因素。结论：这是第一次将“临床有效性”研究与那些报告患者和家庭经验以及工作人员需求、属性和经验的研究结合起来的综述。政策制定者和从业者应该将这里确定的模式视为框架，以发展有效的、以人为本的护理途径，确保适当的工作人员培训和支持，与患者及其家人/同伴/支持网络进行有意义的沟通和工作，并整合社区服务，以解决这一弱势群体的复杂需求。

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引用次数: 0

Promoting Accessible Research for Children With Intellectual Disabilities; Lessons Learnt From Adaptations Through the Covid-19 Pandemic 促进智障儿童无障碍研究；从Covid-19大流行期间的适应中吸取的教训。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-10-03 DOI: 10.1111/jir.70055

Catherine Laverty, Caroline Richards

<p>The intellectual disability (ID) research landscape has seen a considerable transformation over the past decade, with a new emphasis on inclusive and open research practices being prioritised (de Haas et al. <span>2022</span>). Inclusivity in research is an umbrella construct that at its heart requires research to be truly collaborative, accessible and driven by the interests of the population for whom it is about (Garratt et al. <span>2022</span>; Walmsley and Johnson <span>2003</span>), with evidence of inclusivity in practice increasing throughout the field of ID research. Concomitant with this transformation in ID research have been paradigmatic shifts to the wider research landscape over the past 4 years, with many research studies requiring wholesale redesign to be compatible with the remote, restricted environment conferred by the Covid-19 pandemic. Common adaptations include research studies moving online (Song et al. <span>2020</span>), utilising remote technology to collate data (eye tracking—[Vos et al. <span>2022</span>; Fraser et al. <span>2025</span>]; video conferencing software—[Humphries et al. <span>2022</span>]; mobile apps—[Wijesooriya et al. <span>2020</span>]) and adopting a citizen science approach to minimise researcher contact with participants (Dow et al. <span>2022</span>). We discuss how these research design adaptations, necessary for research to be compatible with a remote context, may have inadvertently had widescale benefit for children with ID for whom traditional research practices were often inaccessible. First, we will highlight adaptations necessary for ID research to be compatible with the remote context of the pandemic, before discussing how these approaches may support wider research adaptations seen across the research landscape to promote more replicable and open science. Finally, we will provide practical suggestions for ID researchers, discussing how these two approaches are compatible to promote better research practices. ID researchers designing future studies should endeavour to incorporate some of the lessons learned from research designs created within the context of the Covid-19 pandemic to promote a more accessible and inclusive environment for people with ID overall.</p><p>Adapting research protocols to be inclusive and accessible for children with ID is not a new idea. Historically, the traditional approach has been to subtly adapt research paradigms to be more suitable for the specific needs of children with ID. Examples of such adaptations include the addition of easy-read information sheets into existing protocols (Chinn and Homeyard <span>2017</span>), transformation of ‘traditional’ psychological tasks such as the ‘tower of London’ (Masson et al. <span>2010</span>) and creating alternate survey instruments specifically for people with ID (Nicolaidis et al. <span>2020</span>). These subtle shifts in research design reflect a direct challenge that cuts across ID research; that of ensuring

在过去十年中，智障（ID）研究领域发生了相当大的变化，新的重点是包容和开放的研究实践（de Haas et al. 2022）。研究中的包容性是一个伞形结构，其核心要求研究真正具有协作性、可访问性，并受研究对象的利益驱动（Garratt et al. 2022; Walmsley and Johnson 2003），在整个ID研究领域，实践中的包容性越来越多。在过去4年里，与ID研究的这种转变相伴随的是向更广泛的研究领域的范式转变，许多研究需要全面重新设计，以适应Covid-19大流行带来的偏远、受限的环境。常见的调整包括在线研究（Song等人，2020），利用远程技术整理数据（眼动追踪- [Vos等人，2022；Fraser等人，2025]；视频会议软件- [Humphries等人，2022]；移动应用程序- [Wijesooriya等人，2020]），并采用公民科学方法尽量减少研究人员与参与者的接触（Dow等人，2022）。我们讨论了这些研究设计的适应，对于研究与远程环境相兼容是必要的，可能无意中对具有ID的儿童产生了广泛的好处，因为传统的研究实践通常是无法获得的。首先，我们将强调ID研究与大流行的远程背景相兼容所需的适应，然后讨论这些方法如何支持整个研究领域中看到的更广泛的研究适应，以促进更具可复制性和开放性的科学。最后，我们将为ID研究人员提供实用建议，讨论这两种方法如何兼容以促进更好的研究实践。设计未来研究的ID研究人员应努力从2019冠状病毒病大流行的背景下创建的研究设计中吸取一些经验教训，为ID患者提供一个更容易获得和包容的环境。调整研究方案，使其对患有身份证的儿童具有包容性和可及性，并不是一个新想法。从历史上看，传统的方法是巧妙地调整研究范式，使其更适合患有ID的儿童的特定需求。这种调整的例子包括在现有协议中添加易于阅读的信息表（Chinn and Homeyard 2017），改造“传统”心理任务，如“伦敦塔”（Masson et al. 2010），以及专门为ID患者创建替代调查工具（Nicolaidis et al. 2020）。这些研究设计上的微妙变化反映了贯穿ID研究的直接挑战；确保适应保持任务的有效性，同时使研究能够满足患有ID的儿童的个人需求。这种考虑通常意味着，尽管一些研究确实适用于某些患有ID的儿童，但通常结果并不完全适用于所有患有ID的儿童。对于有最严重的智力障碍或更复杂的个人需求的人来说，微妙的设计变化并不总是足够容易实现的。对于患有ID和并发疾病（如自闭症、多动症、癫痫或罕见遗传综合征）的儿童，这种困难会加剧，因此这些儿童往往被排除在研究之外（Russell et al. 2019）。这些任务管理的微妙变化并没有减少在参加面对面研究（通常被认为是参与者研究的“黄金标准”）的旅行中隐含的情感、身体和感官障碍。因此，尽管知情且有力的研究的证据基础不断增长，但如果这项研究仅代表能够切实参与的ID儿童的比例，则潜在的偏见也会增加。与研究设计的细微变化形成鲜明对比的是，为使研究与Covid-19大流行相兼容，必须进行调整。这场大流行影响了全球生活的方方面面，从医疗保健、教育、经济到日常研究的开展（世界卫生组织，2020年）。在此期间，研究人员面临着一个决定，要么暂停与必要的社会距离和流行病限制不相容的“传统”研究设计，要么完全重新设计和调整计划以适应新的环境。许多研究人员选择进行调整，通常的做法是成为完全在线交付的协议（Torrentira 2020），设计优先考虑视频会议软件而不是面对面的评估，并尽量减少有形的研究设备，例如转向使用移动应用程序而不是参与者的文书工作（Tiersma et al. 2022）。设计了进行直接临床评估的全新方法（例如，创建“BOSA”作为黄金标准“ADOS”的替代方法[Dow et al. 2022]）。这些方法的主要目的是确保研究能够在大流行带来的新的限制性环境中继续进行。然而，应该承认，这些变化的另一个无意的影响是向无法进入传统研究环境的儿童开放研究参与。因此，向远程交付研究的转变可能反映了研究方法的缩小，但为那些偏好和唯一的访问方法是在自己熟悉的环境中参与的人开辟了研究。更广泛地说，在整个研究领域，向预注册和开放研究设计的转变（因Covid-19大流行而加速）意味着所有人都可以看到研究人员做出的许多调整。大力鼓励并越来越广泛地采用研究注册（Simmons et al. 2021），允许研究人员在开始数据收集之前记录精确的计划和假设。这一过程对科学领域和ID研究有两个直接的好处。首先，研究人员在数据收集和随后的科学文章之前清楚地记录了原始假设和分析方法，减少了不良研究实践的风险，增加了研究结果的可信度。糟糕的研究实践，如在结果已知后进行假设（“HARKing”）、寻找重要结果（p-hacking）或缺乏说服力的分析，可以巧妙地渗透到研究设计中，损害研究结果的有效性和可靠性。这在临床和罕见人群中尤其令人担忧，如患有ID的儿童，其结果具有相当大的临床意义。其次，预注册的使用允许更广泛的科学领域看到并从其他研究人员描述的当前适应中学习，赋予进步渐进的优势，并促进更多的合作方法来解决复杂的科学问题。例如，表1提供了在开放科学框架[OSF]网站上提供的用于研究患有ID的儿童的远程研究设计预注册的一些示例的非详尽列表。专门针对ID儿童的研究的注册数量每年都在增加，这表明ID研究越来越倾向于采用开放和可复制的研究实践。最后，使用包含“公民科学”方法的协议是一个关键的创新，它使患有ID的儿童能够特别容易地进行研究。公民科学方法可以通过非专业公众成员的参与（例如，患有ID的儿童的主要照顾者）与科学家合作管理研究协议来实施（Bonney et al. 2009）。在整个大流行期间，这种方法往往是必要的，因为偏远地区有时是收集符合社交距离限制的数据的唯一途径。然而，公民科学方法现在正被越来越广泛地采用，特别是作为对普遍存在的普遍性和可复制性问题的潜在解决方案，这些问题已经给心理学研究带来了危机（Yarkoni 2022）。在对典型发育儿童的研究中，公民科学方法现在得到了很好的利用，例如，父母提交婴儿的视频片段供研究人员研究笑声（Addyman and Addyman 2013），获得大型数据集来描述婴儿的发声（Semenzin et al. 2021），并探索课堂内短暂活动的价值（Booth et al. 2020）。通常，这些方法将科学协议带入日常环境。因此，这种方法似乎完全有利，并且与旨在对患有身份证的人更具包容性的研究相兼容，然而，在大流行的必要远程研究背景之外，很少对患有身份证的儿童采用公民科学方法。当然，非专业人员参与科学设计也会带来挑战，其中最明显的两个问题是缺乏潜在的严谨性和控制力（Nov et al. 2014）。然而，当考虑到迄今为止提到的更广泛的问题（传统研究设计缺乏可及性，研究的普遍性和可靠性的更广泛问题）时，将公民科学方法纳入ID研究是研究人员考虑提高研究的可及性和可靠性的一个令人兴奋的领域。在整个心理学研究中，人们普遍认为可复制和开放的研究确实推动了科学发展，改善了理论发展，增强了研究的稳健性（Nosek et al

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引用次数: 0