Journal of Intellectual Disability Research最新文献_第2页

Antipsychotic Use Among Intellectually Disabled Individuals With Rare Genetic Variants That Confer Risk for Schizophrenia. 具有罕见遗传变异的精神分裂症风险的智力残疾个体的抗精神病药物使用。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-11-30 DOI: 10.1111/jir.70065

Mark Ainsley Colijn

Background: Rare genetic variation can predispose individuals to the development of schizophrenia, with certain genes and copy number variants (CNVs) conferring risk at the exome/genome-wide level. Despite this strong association, little is known about antipsychotic effectiveness and tolerability among individuals with most of these disorders. As such, this retrospective chart review sought to gather more data regarding the real-world use of antipsychotics in this context.

Methods: This largely descriptive, cross-sectional and retrospective chart review took place at a developmental disabilities mental health clinic. Clinical information was primarily derived from electronic medical records. Individuals with a history of psychosis and antipsychotic exposure identified as having a genetic variant known to confer exome/genome-wide risk for schizophrenia were included in the study.

Results: Of the 1196 charts reviewed, 24 individuals with a relevant genetic variant were identified, 11 of whom had experienced psychotic symptoms that were treated with antipsychotic medication. Six have 22q11.2 deletion syndrome, two have 15q11-q13 duplication syndrome and one individual each has a 16p11.2 duplication, a 7q11.23 duplication and a missense variant in TRIO. Overall, antipsychotic therapy tended to be reasonably effective and well tolerated (particularly among those individuals who do not have 22q11.2 deletion syndrome), despite side effects of some kind occurring in most cases.

Conclusion: While this study had numerous limitations that prevent firm conclusions from being drawn, it provides preliminary evidence that antipsychotics may be relatively safe and effective in at least some of the genetic disorders most strongly associated with schizophrenia.

背景：罕见的遗传变异可使个体易患精神分裂症，某些基因和拷贝数变异（CNVs）在外显子组/全基因组水平上赋予风险。尽管存在这种强烈的关联，但对大多数这些疾病患者的抗精神病药物有效性和耐受性知之甚少。因此，本回顾性图表综述试图收集更多关于在此背景下抗精神病药物在现实世界中使用的数据。方法：在一家发育障碍心理健康诊所进行了描述性、横断面和回顾性的图表回顾。临床信息主要来源于电子病历。有精神病史和抗精神病药物暴露的个体被确定为具有已知的赋予精神分裂症外显子组/全基因组风险的遗传变异的个体被纳入研究。结果：在审查的1196份图表中，确定了24名具有相关遗传变异的个体，其中11人曾经历过精神病症状，并接受了抗精神病药物治疗。6人有22q11.2缺失综合症，2人有15q11-q13重复综合症，每个人都有一个16p11.2重复，一个7q11.23重复和一个错义变异。总的来说，抗精神病药物治疗是相当有效和耐受性良好的（特别是在那些没有22q11.2缺失综合征的个体中），尽管在大多数情况下会出现某种副作用。结论：虽然这项研究有许多局限性，无法得出确切的结论，但它提供了初步证据，表明抗精神病药物至少在一些与精神分裂症最密切相关的遗传疾病中可能相对安全有效。

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引用次数: 0

Young People With and Without Intellectual Disability Accessing Mental Health Services: Evaluating Psychosocial Functioning Outcomes Using Electronic Health Records 有和没有智力残疾的年轻人获得精神卫生服务：使用电子健康记录评估心理社会功能结果。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-11-29 DOI: 10.1111/jir.70066

Z. Sienna Pan, Carlo Schuengel, Barry Coughlan, Lianne Bakkum, Matt Woolgar, Sarah Carman, Robbie Duschinsky

Background

There is growing recognition that many young people (<18 years) with intellectual disability (ID) may benefit from psychosocial support provided by mental health services, yet intervention outcomes have not been robustly evaluated.

Method

Data from 1986 episodes of care for young people with ID and 3968 matched episodes for those without ID were extracted from electronic health records of the South London and Maudsley NHS Foundation Trust (2001–2023). Psychosocial functioning was assessed using the Children's Global Assessment Scale (CGAS).

Results

ID frequently co-occurred with other neurodevelopmental conditions and behavioural difficulties (prevalence > 50%). CGAS scores at service entry positively predicted CGAS scores at discharge; however, this association weakened in the presence of ID and co-occurring pervasive developmental disorders or hyperkinetic disorders. ID was associated with lower CGAS scores at discharge than those without ID. Within the ID group, young people with severe/profound ID and comorbidities demonstrated greater rates of improvement than those with severe/profound ID only. 20% of young people with ID showed clinically significant improvement at discharge (reliable change index ≥ 1.96). Despite this improvement, 80% of the same group continued to experience substantial impairment (CGAS < 61).

Conclusions

Most young people with ID remained substantially impaired at discharge, highlighting the complexity of their needs and the importance of sustained, targeted support. Further research should examine specific intervention types and treatment trajectories in this population.

背景：越来越多的人认识到许多年轻人（方法：从南伦敦和莫兹利NHS基金会信托（2001-2023）的电子健康记录中提取了1986年对有身份证的年轻人的护理数据和3968次对没有身份证的年轻人的匹配数据）。使用儿童整体评估量表（CGAS）评估心理社会功能。结果：ID经常与其他神经发育疾病和行为困难共同发生（患病率为50%）。入职时CGAS评分正预测出院时CGAS评分；然而，这种关联在存在ID和共同发生的广泛性发育障碍或多动障碍时减弱。与没有ID的患者相比，ID患者出院时的CGAS评分较低。在ID组中，患有严重/深度ID和合并症的年轻人比仅患有严重/深度ID的年轻人表现出更大的改善率。20%的年轻ID患者出院时表现出显著的临床改善（可靠变化指数≥1.96）。尽管有这种改善，但同一组中80%的人继续经历严重的损害(CGAS结论：大多数患有ID的年轻人在出院时仍然严重受损，突出了他们需求的复杂性和持续的、有针对性的支持的重要性。进一步的研究应该检查这一人群的具体干预类型和治疗轨迹。

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引用次数: 0

Perceived Vulnerability and Parents' Views on Intimate Relationships: Adults With Intellectual Disabilities Versus Their Siblings 感知脆弱性与父母对亲密关系的看法：智障成人与兄弟姐妹。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-11-25 DOI: 10.1111/jir.70061

Rebecca R. Kammes, Elizabeth Liffley, Marisa H. Fisher

Background

Adults with intellectual disabilities (ID) face unique barriers in forming romantic/intimate relationships, including being labelled as ‘vulnerable adults’. Parents are often more involved in the lives of their adult children with ID including with intimate relationships. This involvement can both support and restrict the development of autonomy and intimacy. Understanding how parents perceive and respond to their child's vulnerability is essential, as these perceptions can directly influence the opportunities and support their children receive in navigating romantic and intimate relationships. The aim of this study was to explore how parents' perceptions of vulnerability impact their involvement in the intimate relationship experiences of their adult children with ID compared to their adult child without ID.

Methods

As part of a larger convergent mixed methods research study, 20 parents who had an adult child with ID and an adult child without ID participated in semistructured interviews. Secondary data analysis of qualitative data from these interviews was conducted to examine themes related to the impact of vulnerability on experiences.

Results

Parents described perceiving their adult children with ID as more vulnerable, leading to delayed discussions about sexuality, heightened concerns and more direct involvement in their relationship experiences compared to their adult children without ID. They also described struggling to balance protective behaviours with fostering independence.

Conclusion

Findings highlight the nuanced challenges parents face due to societal norms, communication barriers and their adult child's cognitive and adaptive functioning—all of which contribute to heightened perceptions of vulnerability. These perceptions, in turn, shape the level and nature of parental involvement in their adult child's romantic and intimate relationships. This study emphasises the need for parental support, resources and programming to facilitate safe and fulfilling romantic and intimate relationship experiences for adults with ID.

背景：智力残疾的成年人在形成浪漫/亲密关系方面面临独特的障碍，包括被贴上“脆弱成年人”的标签。父母通常更多地参与到有本我的成年子女的生活中，包括亲密关系。这种参与既可以支持也可以限制自主和亲密关系的发展。了解父母如何看待和应对孩子的脆弱性是至关重要的，因为这些看法可以直接影响孩子在恋爱和亲密关系中获得的机会和支持。本研究的目的是探讨父母对脆弱性的感知如何影响他们参与有本我的成年子女与无本我的成年子女的亲密关系体验。方法：作为一项更大的融合混合方法研究的一部分，20名父母参加了半结构化访谈，他们的成年子女患有身份证，而成年子女没有身份证。对这些访谈的定性数据进行了二次数据分析，以检查与脆弱性对经历的影响有关的主题。结果：与没有本我的成年子女相比，父母认为有本我的成年子女更脆弱，导致讨论性行为的时间推迟，担忧加剧，更直接地参与到他们的关系体验中。他们还描述了在保护行为和培养独立性之间取得平衡的努力。结论：研究结果强调了父母面临的微妙挑战，包括社会规范、沟通障碍以及成年子女的认知和适应功能，所有这些都加剧了他们对脆弱性的感知。这些观念反过来又塑造了父母参与成年子女恋爱和亲密关系的程度和性质。这项研究强调需要父母的支持、资源和规划来促进有ID的成年人安全、充实的浪漫和亲密关系体验。

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引用次数: 0

Level 2 Screening for Autism Spectrum Disorder in Young Children: Cross-Cultural Adaptation and Validation of the Behaviour Development Screening for Toddlers (BeDevel) in China 幼儿自闭症谱系障碍的二级筛查：跨文化适应与幼儿行为发展筛查的验证（BeDevel）

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-11-25 DOI: 10.1111/jir.70064

Kaiyan Gan, Bei Sun, Guiyoung Bong, Qian Li, Yuan Chen, Nana Qiu, Anqi Huang, Ziyi Zhang, Zenghe Yue, Hee Jeong Yoo, Xiaoyan Ke

Background

Early screening tools for autism spectrum disorders (ASDs) have made great strides in recent years. The BeDevel is a comprehensive and precise screening instrument that addresses many of the shortcomings found in other screening instruments, including limited cultural adaptability and insufficient sensitivity. Therefore, we further analyzed its cultural adaptability and validity.

Methods

We worked with the original development team to translate and back-translate the BeDevel into Chinese. With the guidance of a committee, we made semantic and cultural modifications to the BeDevel to assess its cross-cultural adaptability. We gathered validation data from 542 participants (9–11 months, n = 24; 12–17 months, n = 61; 18–23 months, n = 136; 24–35 months, n = 217; 36–42 months, n = 104). The study included 191 individuals with ASD, 103 with DD and 248 with TD. Individual items and total scores were analyzed for internal consistency, agreement with clinical diagnosis (yielding optimal cut off numbers of Item, sensitivity, specificity, positive predictive value [PPV] and negative predictive value [NPV]) and consistency with existing diagnostic instruments.

Results

The mean Cronbach's α coefficients of the Chinese version of BeDevel-I/P were all above 0.8 (ranging from 0.872 to 0.93), with correlation coefficients greater than 0.05 (r = 0.061 to 0.834). Metrics of diagnostic accuracy across age groups were as follows: κ coefficient, 0.064–0.722; sensitivity, 0.853–0.962; specificity, 0.429–1.000; PPV, 0.758–1.000; and NPV, 0.700–0.974. κ values for interinstrument consistency ranged from 0.432 to 0.973 and exceeded 60% for all instruments compared.

Conclusions

The Chinese version of the BeDevel has demonstrated high reliability and effectiveness in screening for autism. Therefore, we recommend this validated C-BeDevel for Level 2 ASD screening in both clinical and maternal and child health settings.

背景：近年来，自闭症谱系障碍（ASDs）的早期筛查工具取得了很大进展。BeDevel是一种全面而精确的筛查工具，它解决了其他筛查工具中的许多缺点，包括文化适应性有限和灵敏度不足。因此，我们进一步分析了它的文化适应性和有效性。方法：我们与原开发团队合作，将BeDevel翻译成中文。在委员会的指导下，我们对BeDevel进行了语义和文化上的修改，以评估其跨文化适应性。我们收集了542名参与者的验证数据（9-11个月，n = 24； 12-17个月，n = 61； 18-23个月，n = 136； 24-35个月，n = 217； 36-42个月，n = 104）。该研究包括191名ASD患者，103名DD患者和248名TD患者。分析单项和总分的内部一致性、与临床诊断的一致性（得出最佳分值、敏感性、特异性、阳性预测值[PPV]和阴性预测值[NPV]）以及与现有诊断工具的一致性。结果：中文版bedev - i /P量表的Cronbach's α平均系数均大于0.8(0.872 ~ 0.93)，相关系数均大于0.05 （r = 0.061 ~ 0.834）。各年龄组诊断准确率指标如下：κ系数为0.064-0.722；敏感性,0.853 - -0.962;特异性,0.429 - -1.000;PPV, 0.758 - -1.000;净现值为0.700 ~ 0.974。仪器间一致性的κ值在0.432 ~ 0.973之间，所有仪器间一致性的κ值均超过60%。结论：中文版BeDevel在筛查自闭症方面具有较高的可靠性和有效性。因此，我们推荐这种经过验证的C-BeDevel用于临床和妇幼保健机构的2级ASD筛查。

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引用次数: 0

Measuring Muscle Mass in Adults With Intellectual Disabilities: The Reliability and Construct Validity of Calf Circumference 智力残疾成人肌肉质量测量：小腿围的信度和结构效度。

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research

Pub Date : 2025-11-15 DOI: 10.1111/jir.70060

Kirsten I. de Oude, Rosalie J. E. Bonnet, Roy G. Elbers, Dederieke A. M. Maes-Festen, Alyt Oppewal

Background

The amount of muscle mass is an important criterion to diagnose sarcopenia. Two feasible methods for measuring muscle mass in adults with intellectual disabilities (ID) are bioelectrical impedance analysis (BIA) and calf circumference (CC). CC measurements are more accessible, cheaper and easier to use than BIA in adults with ID. This study aimed to investigate the construct validity and intrarater reliability of CC to estimate muscle mass compared to BIA in adults with mild and moderate ID and cardiovascular risk factors (CVRF).

Methods

This study was part of the PRET study (NTR, NL8382), which examined the effect of Progressive Resistance Exercise Training on cardiovascular risk factors in 36 adults with ID (55.58 years, SD: 12.89). Construct validity was analysed with Pearson's correlations between CC and BIA measurements (skeletal muscle mass [SMM], segmental muscle mass [SegMM] and skeletal muscle index [SMI]). The intrarater reliability was analysed with the intraclass correlation coefficient (ICC).

Results

The correlation between CC and SMM was 0.19 (95% CI [−0.16, 0.49]), 0.60 (95% CI [0.33, 0.78]) between CC and SegMM and 0.69 (95% CI [0.47, 0.83]) between CC and SMI. The ICC was 0.94 (95% CI [0.89, 0.97]).

Conclusions

The excellent intrarater reliability of CC indicates that CC measurements are reliable within the same assessor for adults with ID and CVRF. However, the use of CC to estimate muscle mass compared to BIA remains questionable.

背景：肌肉量是诊断肌少症的重要标准。两种可行的测量成人智力障碍（ID）肌肉质量的方法是生物电阻抗分析（BIA）和小腿围（CC）。在成年ID患者中，CC测量比BIA更容易获得、更便宜、更容易使用。本研究旨在探讨CC与BIA在轻度和中度ID和心血管危险因素（CVRF）成人中估算肌肉质量的结构效度和内部信度。方法：本研究是PRET研究（NTR, NL8382）的一部分，该研究考察了渐进式阻力运动训练对36例ID成人（55.58岁，SD: 12.89）心血管危险因素的影响。采用CC和BIA测量（骨骼肌质量[SMM]、节段肌质量[SegMM]和骨骼肌指数[SMI]）之间的Pearson相关性分析结构效度。用类内相关系数（ICC）分析类内信度。结果：CC与SMM的相关性为0.19 (95% CI [-0.16, 0.49])， CC与SegMM的相关性为0.60 (95% CI [0.33, 0.78])， CC与SMI的相关性为0.69 （95% CI[0.47, 0.83]）。ICC为0.94 （95% CI[0.89, 0.97]）。结论：CC出色的内部信度表明，对于患有ID和CVRF的成人，CC测量在同一评估器内是可靠的。然而，与BIA相比，使用CC来估计肌肉质量仍然值得商榷。

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引用次数: 0

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