Research in Developmental Disabilities最新文献_第7页

The relation between Down syndrome and co-occurring conditions in children and young adults: A population-based cohort in Denmark, 1977–2016 唐氏综合征与儿童和年轻人并发疾病之间的关系：1977-2016年丹麦基于人群的队列研究

IF 2.6 2区医学 Q1 EDUCATION, SPECIAL

Research in Developmental Disabilities

Pub Date : 2025-11-21 DOI: 10.1016/j.ridd.2025.105167

Cheng Yin , Chuanjie Deng , Catherine M. Crespi , Sari Bar , Chandra D. Carey , M. Elizabeth Brickner , Eugenia Chock , Erin C. Schafer , Igor Barjaktarevic , Kosuke Inoue , Johnni Hansen , Julia E. Heck

Background and objective

Recognizing the common co-occurring conditions among individuals with Down syndrome (DS) is essential for maintaining appropriate screening and optimizing healthcare resources. However, many previous studies relied on hospital- or community-based convenience samples with small sample sizes, limiting their generalizability. This study aimed to investigate the association between DS and co-occurring conditions in a large cohort of children and young adults.

Methods

We conducted a population-based retrospective cohort study using Danish national registers. The cohort had 1779912 participants born from 1977 to 2013 including 1385 with DS. For congenital conditions, we estimated inverse-probability-weighted (IPTW) absolute prevalence and prevalence difference. Time to event analyses (proportional hazard regression and IPTW cumulative incidence function estimation) were utilized to estimate the association between DS and risk for non-congenital co-occurring conditions. Sub-analyses examined risks among individuals with leukemia and sex-specific differences.

Results

Analyses showed very large prevalence ratios for many congenital conditions, including atrioventricular septal defects (PD=0.181, 95 % CI: 0.162, 0.203; PR=489, 95 % CI: 425–562), atrial septal defects (PD=0.215, 95 % CI: 0.194, 0.238; PR=94, 95 % CI: 84–105), and tetralogy of Fallot (PD=0.020, 95 % CI: 0.014, 0.029; PR=67, 95 % CI: 45–99). Individuals with DS had higher risks for cardiovascular disorders: pulmonary hypertension (HR=103.44, 95 % CI: 71.26–150.15), and stroke (HR=6.50, 95 % CI: 3.09–13.65). Additionally, the diagnosis was associated with increased risks of autoimmune diseases including celiac disease (HR=14.03, 95 % CI: 10.65–18.49) and type 1 diabetes (HR=3.40, 95 % CI: 2.08–5.54). Positive associations were also found for cerebral palsy (HR=9.77, 95 % CI: 7.32–13.06), and respiratory failure (HR=12.97, 95 % CI: 9.30–18.10). At 30 years of follow-up, IPTW absolute risks illustrated the clinical burden: e.g., pulmonary hypertension (AR₁=0.028 vs AR₀=0.0002, RD=0.026, RR=138.50), keratoconus (AR₁=0.025 vs AR₀=0.006, RD=0.025, RR=43.19), and respiratory failure (AR₁=0.034 vs AR₀=0.002, RD=0.031, RR=13.98).

Discussion and conclusion

Individuals with DS have notably higher risks of many co-occurring conditions. Our findings suggest that attention should be given to the management of autoimmune and ophthalmologic conditions, particularly regarding their incidence patterns over time and by gender.

背景与目的认识唐氏综合征（DS）患者共同发生的疾病对于维持适当的筛查和优化医疗资源至关重要。然而，许多先前的研究依赖于医院或社区的便利样本，样本量小，限制了它们的普遍性。本研究旨在调查在儿童和年轻人的大队列中退行性椎体滑移和并发疾病之间的关系。方法：我们使用丹麦国家登记册进行了一项基于人群的回顾性队列研究。该队列有1779912名出生于1977年至2013年的参与者，其中1385名患有DS。对于先天性疾病，我们估计了逆概率加权（IPTW）绝对患病率和患病率差异。使用事件时间分析（比例风险回归和IPTW累积发生率函数估计）来估计DS与非先天性共同发生疾病风险之间的关系。亚分析检查了白血病个体的风险和性别差异。结果分析显示，许多先天性疾病的患病率非常高，包括房室间隔缺损（PD=0.181, 95 % CI: 0.162, 0.203； PR=489, 95 % CI: 425-562），房间隔缺损（PD=0.215, 95 % CI: 0.194, 0.238； PR=94, 95 % CI: 84-105）和法洛四联症（PD=0.020, 95 % CI: 0.014, 0.029； PR=67, 95 % CI: 45-99）。DS患者发生心血管疾病的风险更高：肺动脉高压（HR=103.44, 95 % CI: 71.26-150.15）和中风（HR=6.50, 95 % CI: 3.09-13.65）。此外，诊断与自身免疫性疾病的风险增加相关，包括乳糜泻（HR=14.03, 95 % CI: 10.65-18.49）和1型糖尿病（HR=3.40, 95 % CI: 2.08-5.54）。脑瘫（HR=9.77, 95 % CI: 7.32-13.06）和呼吸衰竭（HR=12.97, 95 % CI: 9.30-18.10）也存在正相关。在30年的随访中，IPTW绝对风险显示了临床负担：例如肺动脉高压（AR1=0.028 vs AR0=0.0002， RD=0.026， RR=138.50），圆锥角膜（AR1=0.025 vs AR0=0.006， RD=0.025， RR=43.19）和呼吸衰竭（AR1=0.034 vs AR0=0.002， RD=0.031， RR=13.98）。讨论与结论退行性椎体滑移患者的许多并发疾病的风险明显增高。我们的研究结果表明，应重视自身免疫和眼科疾病的管理，特别是其随时间和性别的发病率模式。

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引用次数: 0

Diagnostic accuracy of AI-based models for autism spectrum disorder: A systematic review and meta-analysis with a focus on Arab populations 基于人工智能的自闭症谱系障碍模型的诊断准确性：一项以阿拉伯人群为重点的系统综述和荟萃分析。

IF 2.6 2区医学 Q1 EDUCATION, SPECIAL

Research in Developmental Disabilities

Pub Date : 2025-11-20 DOI: 10.1016/j.ridd.2025.105166

Ali Fahad Aldakhil , Khalid N. Alasim

Background

Autism Spectrum Disorder (ASD) is a prevalent neurodevelopmental condition globally, including in Arab countries, where stigma, limited awareness, and scarce specialized services often delay diagnosis and care. Artificial intelligence (AI) offers scalable solutions for screening, early diagnosis, and intervention programmes.

Aims

To evaluate the diagnostic accuracy of AI-based models for ASD with a specific focus on Arab cohorts, and to appraise methodological quality and potential cultural influences on model performance.

Methods

We searched PubMed, Scopus, and Web of Science for studies published between January 2019 and September 2025. Eligible studies evaluated supervised AI systems, machine learning (ML), or deep learning (DL) that classify individuals as ASD versus non-ASD against a clinician-confirmed reference standard. Study quality was assessed using QUADAS-2. Diagnostic accuracy metrics (sensitivity, specificity, likelihood ratios, diagnostic odds ratio) were pooled using a bivariate random-effects model.

Results

Fifteen studies were included in the systematic review; ten studies were eligible for meta-analysis (59 model evaluations; 26,569 instances), comparing AI models against clinician-confirmed autism diagnoses. Pooled sensitivity was 91.8 % (95 % CI [89.0, 94.2]) and specificity 90.7 % (95 % CI [87.6, 93.5]), yielding a diagnostic odds ratio (DOR) of 109.0 (95 % CI [59.5, 227.9]), positive likelihood ratio (LR⁺) of 9.8, and negative likelihood ratio (LR⁻) of 0.09. Subgroup analysis revealed hybrid models (deep feature extractors with classical classifiers) achieved the highest accuracy (sensitivity 95.2 %, specificity 96.0 %), followed by conventional ML (sensitivity 91.6 %, specificity 90.3 %), and DL alone (sensitivity 87.3 %, specificity 86.0 %). In Arab-only cohorts, models showed higher sensitivity (94.2 %) but lower specificity (87.6 %), suggesting stronger rule-out potential but more false positives.

Conclusion

To our knowledge, this is the first systematic meta-analysis of AI-based ASD diagnostics confirms high accuracy, with hybrid models excelling compared to both traditional ML and DL alone. In Arab cohorts, models showed higher sensitivity but lower specificity, highlighting the importance of cultural and linguistic tailoring of assessment tools, diagnostic protocols, and datasets, alongside regional challenges such as stigma and limited resources. These findings support AI as a valuable tool for early detection and screening.

背景：自闭症谱系障碍（ASD）是一种全球普遍存在的神经发育疾病，包括在阿拉伯国家，在这些国家，耻辱感、意识有限和缺乏专业服务往往会延误诊断和护理。人工智能（AI）为筛查、早期诊断和干预规划提供了可扩展的解决方案。目的：评估基于人工智能的ASD模型的诊断准确性，特别关注阿拉伯人群，并评估方法质量和对模型性能的潜在文化影响。方法：我们检索了2019年1月至2025年9月期间发表的PubMed、Scopus和Web of Science。符合条件的研究评估了监督人工智能系统、机器学习（ML）或深度学习（DL），这些系统根据临床医生确认的参考标准将个体分类为ASD与非ASD。采用QUADAS-2评估研究质量。诊断准确性指标（敏感性、特异性、似然比、诊断优势比）采用双变量随机效应模型进行汇总。结果：系统评价纳入了15项研究；10项研究有资格进行荟萃分析（59项模型评估；26,569例），将人工智能模型与临床确诊的自闭症诊断进行比较。合并敏感性为91.8 %(95 % CI[89.0, 94.2])，特异性为90.7 %(95 % CI[87.6, 93.5])，诊断优势比（DOR）为109.0(95 % CI[59.5, 227.9])，阳性似然比（LR⁺）为9.8，阴性似然比（LR⁻）为0.09。亚组分析显示，混合模型（深度特征提取器与经典分类器）的准确率最高（灵敏度95.2 %，特异性96.0 %），其次是传统ML（灵敏度91.6 %，特异性90.3 %）和DL单独（灵敏度87.3 %，特异性86.0 %）。在仅阿拉伯人的队列中，模型显示出更高的敏感性（94.2 %）但较低的特异性（87.6% %），这表明更强的排除潜力但更多的假阳性。结论：据我们所知，这是第一个基于人工智能的ASD诊断的系统荟萃分析，证实了较高的准确性，与传统ML和DL单独相比，混合模型优于传统ML和DL。在阿拉伯队列中，模型显示出更高的敏感性，但特异性较低，突出了评估工具、诊断方案和数据集的文化和语言定制的重要性，以及耻辱感和资源有限等区域挑战。这些发现支持人工智能作为早期检测和筛查的宝贵工具。

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引用次数: 0

Association between parent-reported level of physical activity and mobility performance in children with Down syndrome: A cross-sectional study 唐氏综合症儿童父母报告的身体活动水平与行动能力之间的关系：一项横断面研究。

IF 2.6 2区医学 Q1 EDUCATION, SPECIAL

Research in Developmental Disabilities

Pub Date : 2025-11-17 DOI: 10.1016/j.ridd.2025.105164

Beatriz Helena Brugnaro , Rafaela Campos , Olaf Kraus de Camargo , Robert J. Palisano , Nelci Adriana Cicuto Ferreira Rocha

Background

Children with Down syndrome (DS) often face challenges maintaining adequate levels of physical activity, which might be associated with their mobility performance. Therefore, the objectives of this study were i) to describe parent-reported physical activity level and performance of mobility of children with DS and ii) to explore relationship between parent-reported physical activity level and performance of mobility in children with Down syndrome.

Methods

For this observational and cross-sectional study, 48 children with DS (mean age: 10.50 ± 3.30) were assessed using the IPAQ-short version (parent-reported physical activity level) and the PEDI-CAT mobility (performance in mobility). Data were analyzed using the Spearman correlation test with a significance level of p < 0.05 using SPSS-V24.0 software.

Results

A significant positive association was found between parent-reported physical activity level and mobility performance (ρ (rho) = .323; p = .025).

Conclusion

Higher physical activity level was associated with better mobility performance in daily living activities. Therefore, this finding supports the importance of promoting both aspects of functioning in children with DS.

背景：患有唐氏综合症（DS）的儿童经常面临保持足够的身体活动水平的挑战，这可能与他们的行动能力有关。因此，本研究的目的是：1)描述家长报告的身体活动水平与唐氏综合症儿童的行动能力表现；2)探讨家长报告的身体活动水平与唐氏综合症儿童行动能力表现之间的关系。方法：在这项观察性和横断面研究中，48名DS儿童（平均年龄：10.50 ± 3.30）采用ipaq短版（父母报告的身体活动水平）和PEDI-CAT活动能力（活动表现）进行评估。数据分析采用Spearman相关检验，p显著性水平为 结果：父母报告的体育活动水平与活动能力之间存在显著正相关(ρ (rho) = .323；p = .025)。结论：较高的体力活动水平与较好的日常生活活动能力相关。因此，这一发现支持了促进退行性痴呆儿童两方面功能的重要性。

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引用次数: 0

Evaluating quality of life for people with intellectual disabilities in Saudi Arabia: Guardian perspectives 评估沙特阿拉伯智障人士的生活质量：卫报的观点。

IF 2.6 2区医学 Q1 EDUCATION, SPECIAL

Research in Developmental Disabilities

Pub Date : 2025-11-17 DOI: 10.1016/j.ridd.2025.105165

Sohil Alqazlan

Background

The concept of quality of life (QoL) is comprehensive and complex, particularly when considering people with intellectual disabilities (ID). Such individuals often face numerous challenges in their lives, which adversely affect their overall QoL.

Objectives

The primary aim of this research was to evaluate the QoL that Saudi children and young people with ID experience in terms of interpersonal relationships, self-determination, social inclusion, personal development, and emotional well-being. Additionally, the research considered several factors that could potentially influence these areas, including gender, family income, parents' education, and geographical location.

Methodology

A cross-sectional study was carried out among 142 children and young people with ID representing various regions of Saudi Arabia.

Results

The study established that Saudi Arabian children and adolescents with ID have, in general, a moderate QoL, with difficulties in social integration and emotional well-being. Self-determination and interpersonal relationships were found to be influenced by demographic characteristics, including the parents' educational background and gender, with girls exhibiting a higher level of self-determination.

Implications

The results of this study have important implications for stakeholders, such as policymakers and parents, particularly regarding the areas where the QoL of individuals with ID may be enhanced. Furthermore, the results draw attention to the need for targeted interventions for boys, who were shown to have lower QoL.

背景：生活质量（QoL）的概念是全面而复杂的，特别是当考虑到智障人士（ID）时。这些人在生活中经常面临许多挑战，这会对他们的整体生活质量产生不利影响。目的：本研究的主要目的是评估沙特儿童和青少年在人际关系、自我决定、社会包容、个人发展和情感幸福感方面的生活质量。此外，该研究还考虑了可能影响这些领域的几个因素，包括性别、家庭收入、父母的教育程度和地理位置。方法：对代表沙特阿拉伯不同地区的142名儿童和青少年进行了横断面研究。结果：本研究确定了沙特阿拉伯患有ID的儿童和青少年的总体生活质量为中等，存在社会融合和情感健康方面的困难。自决和人际关系受到人口特征的影响，包括父母的教育背景和性别，女孩表现出较高的自决水平。启示：本研究的结果对利益相关者（如政策制定者和家长）具有重要意义，特别是关于可能提高ID个体生活质量的领域。此外，研究结果引起了人们对男孩有针对性干预的关注，因为男孩的生活质量较低。

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引用次数: 0

RIDD DCD-14 special issue commentary RIDD cd -14特刊评论

IF 2.6 2区医学 Q1 EDUCATION, SPECIAL

Research in Developmental Disabilities

Pub Date : 2025-11-15 DOI: 10.1016/j.ridd.2025.105162

Jill G. Zwicker , Helene Polatajko

引用次数: 0

Enhancing quality of life: Insights from a family with inherited cases of blindness 提高生活质量：来自一个遗传性失明家庭的见解

IF 2.6 2区医学 Q1 EDUCATION, SPECIAL

Research in Developmental Disabilities

Pub Date : 2025-11-14 DOI: 10.1016/j.ridd.2025.105159

Faisal Alashal F. Alhusayni, Badr Salman H. Alsoliman

Improving quality of life (QoL) for individuals with blindness and visual impairment (BVI) is integral to encouraging their active participation in society, thereby promoting positive social change and creating a more promising future. This qualitative study adopts an intrinsic case study design to explore a Saudi family comprising five highly educated members (one male and four females) who have inherited blindness. They live with their sighted parents and two siblings in the same house in Riyadh, the capital city of Saudi Arabia, and are professionally active as freelancers, advertisers, teachers, and postgraduate students. This approach was chosen to gain an in-depth understanding of the lived experiences of participants who are blind from birth (BfB), focusing on key factors that impact their QoL. Data were collected using a triangulated methodology, including in-depth semi-structured interviews, live recordings, and analysis of artefacts. Theoretical coding analysis revealed four main themes representing factors that impact QoL: (a) life orientation and mobility, (b) information accessibility, (c) employment opportunities, and (d) loneliness and social isolation. These themes encompassed 15 subthemes and 57 individual codes. Findings indicated that participants who are BfB demonstrate strong adaptive skills, digital independence, and psychological resilience, yet continue to confront barriers related to environmental accessibility, assistive technology, and workplace inclusion. A 3 × 4 conceptual model was developed to illustrate the factors influencing the QoL of BfB individuals. The study concludes by recommending solutions that promote the role of education and implementation to enhance QoL for all individuals with BVI.

改善失明和视力障碍患者的生活质量是鼓励他们积极参与社会，从而促进积极的社会变革和创造更有希望的未来的必要条件。本定性研究采用内在案例研究设计，探讨一个由五名受过高等教育的成员（一男四女）组成的遗传性失明的沙特家庭。他们与视力正常的父母和两个兄弟姐妹住在沙特阿拉伯首都利雅得的同一所房子里，作为自由职业者、广告商、教师和研究生，他们在专业上很活跃。选择这种方法是为了深入了解出生失明（BfB）的参与者的生活经历，重点关注影响他们生活质量的关键因素。数据的收集采用三角法，包括深度半结构化访谈、现场录音和人工制品分析。理论编码分析揭示了影响生活质量的四个主要因素：(a)生活取向和流动性，(b)信息可及性，(c)就业机会，以及(d)孤独和社会隔离。这些主题包括15个分主题和57个单独的守则。研究结果表明，BfB的参与者表现出较强的适应技能、数字独立性和心理弹性，但仍面临与环境可及性、辅助技术和工作场所包容性相关的障碍。建立了一个3 × 4的概念模型来说明影响BfB个体生活质量的因素。研究最后提出了促进教育和实施的解决方案，以提高所有BVI患者的生活质量。

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引用次数: 0

Bridging the intention-behavior gap: The role of action planning in parental support for physical activity in children and adolescents with autism spectrum disorder 弥合意向-行为差距：行动计划在父母对自闭症谱系障碍儿童和青少年体育活动支持中的作用。

IF 2.6 2区医学 Q1 EDUCATION, SPECIAL

Research in Developmental Disabilities

Pub Date : 2025-11-13 DOI: 10.1016/j.ridd.2025.105161

Xinzhi Hu , Jiafu Huang , Byungmo Ku , Healy Sean , Chunxiao Li

Background

Parental support constitutes a critical determinant of physical activity (PA) engagement in children and adolescents with autism spectrum disorder (ASD), yet its predictors remain understudied. Grounded in an extended Theory of Planned Behavior (TPB) framework, this study examines the sequential relationships between parental support intention, parental action planning, parental support, and PA in this population.

Methods

A cross-sectional survey was conducted with 164 parents/caregivers of children and adolescents with ASD in China. The parents/caregivers completed a survey form measuring key TPB constructs of interest.

Results

Only 18.3 % of children and adolescents with ASD met the WHO’s recommended guideline of at least 60 min of daily PA. Path analysis revealed that parental support intentions directly predicted parental action planning (β = 0.52) and parental support (β = 0.34), while action planning mediated the intention-behavior relationship. Further, parental support mediated the intention-PA association (β = 0.41) and served as the critical pathway linking intention to children's PA through a chain mediation model (support intention → action planning → parental support → PA).

Conclusion

The extended TPB model elucidates the mechanisms underlying parental support for children and adolescents with ASD. These findings underscore the necessity to strengthen parental intentions, develop actionable plans, and implement integrated support strategies for promoting PA in this population.

背景：父母支持是自闭症谱系障碍（ASD）儿童和青少年身体活动（PA）参与的关键决定因素，但其预测因素仍未得到充分研究。本研究以扩展的计划行为理论（TPB）框架为基础，考察了这一人群中父母支持意向、父母行动计划、父母支持和PA之间的顺序关系。方法：采用横断面调查方法对164名中国儿童和青少年ASD的家长/照顾者进行调查。家长/照顾者完成一份调查表格，测量感兴趣的关键TPB构念。结果：只有18.3% %的ASD儿童和青少年达到了WHO推荐的每日至少60 分钟的PA指南。通径分析显示，父母支持意向直接预测父母行为计划（β = 0.52）和父母支持（β = 0.34），而行为计划介导意愿-行为关系。父母支持通过支持意愿→行动计划→父母支持→行为行为这一链式中介模型，在意向与儿童行为行为之间起着重要的中介作用（β = 0.41）。结论：扩展的TPB模型阐明了父母对儿童和青少年ASD的支持机制。这些发现强调了加强父母意愿、制定可行计划和实施综合支持策略以促进这一人群PA的必要性。

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引用次数: 0

Economic inclusion and quality of life: Assessing the impact of integrating people with disabilities into Saudi Arabia’s labor market 经济包容和生活质量：评估残疾人融入沙特阿拉伯劳动力市场的影响。

IF 2.6 2区医学 Q1 EDUCATION, SPECIAL

Research in Developmental Disabilities

Pub Date : 2025-11-11 DOI: 10.1016/j.ridd.2025.105153

Irfan Ahmed , Khadija Mehrez , Stefano Deriu , Claudio Socci

The objective of this study is to examine the macroeconomic effects of disability-inclusive labor regulations in Saudi Arabia. A dynamic Computable General Equilibrium (CGE) model is calibrated to a commodity-disaggregated Social Accounting Matrix (SAM). The study simulates two policy scenarios: a general employment quota and a service-sector-specific quota for persons with disabilities (PWDs). Each scenario is evaluated under different elasticity of substitution parameters (σ = 0.8, 1.0, 1.5) to capture the sensitivity of the economy to production flexibility. The findings indicate that both regulatory policies produce positive macroeconomic impacts, particularly in scenarios of low substitution elasticity, reflecting limited capacity of firms to replace PWD labor with alternative inputs. Under such conditions, increased PWD employment enhances real GDP, amplifies household consumption, stimulates investment, and yields GDP multipliers exceeding 2.0. Nevertheless, when production flexibility rises (σ = 1.5), the beneficial economic impacts diminish, resulting in GDP multipliers falling below 1.0, indicating less responsiveness and constrained supplementary employment or investment. The study highlights the importance of labor market structure in determining the effectiveness of inclusive employment policies. In less flexible production systems, disability inclusion fosters robust and sustainable economic benefits. In contrast, adaptable systems may necessitate supplementary measures to sustain the progress of labor inclusion and its impact on economic inclusion and quality of life.

本研究的目的是考察沙特阿拉伯残疾人包容劳动法规的宏观经济效应。一个动态的可计算一般均衡（CGE）模型被校准到一个商品分类的社会会计矩阵（SAM）。这项研究模拟了两种政策情景：残疾人士的一般就业配额和特定服务行业的配额。在不同的替代参数弹性（σ = 0.8, 1.0, 1.5）下对每种情景进行了评估，以捕捉经济对生产灵活性的敏感性。研究结果表明，这两项监管政策都产生了积极的宏观经济影响，特别是在替代弹性较低的情况下，这反映了企业用替代投入替代PWD劳动力的能力有限。在这种情况下，就业岗位的增加提高了实际GDP，扩大了家庭消费，刺激了投资，GDP乘数超过2.0。然而，当生产灵活性上升（σ = 1.5）时，有益的经济影响减弱，导致GDP乘数降至1.0以下，表明响应性降低，补充就业或投资受到限制。该研究强调了劳动力市场结构在决定包容性就业政策有效性方面的重要性。在不太灵活的生产系统中，残疾包容促进了强劲和可持续的经济效益。相比之下，适应性系统可能需要补充措施来维持劳动包容的进展及其对经济包容和生活质量的影响。

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引用次数: 0

Gender-specific insights on parenting children with rare diseases through multiple mediation analyses within the double ABCX model 双ABCX模型多重中介分析对罕见病儿童养育的性别洞察

IF 2.6 2区医学 Q1 EDUCATION, SPECIAL

Research in Developmental Disabilities

Pub Date : 2025-11-10 DOI: 10.1016/j.ridd.2025.105160

Johannes Boettcher , Holger Zapf , Sarah Hohmann , Anne Daubmann , Jonas Denecke , Ania C. Muntau , Silke Wiegand-Grefe

Background

While the double ABCX model has been evaluated in various contexts, large-scale studies on gender among parents of children with rare diseases remain scarce.

Objective

To examine the applicability of the double ABCX model within a large-scale sample of mothers and fathers of children diagnosed with rare diseases.

Methods

The potential predictors of parental mental health in a multicenter study of n = 668 mothers and n = 461 fathers of children with rare diseases were investigated. Factors contributing to parental adaptation (GAD-7 and PHQ-9) within the double ABCX model were investigated cross-sectionally using multiple mediation modeling.

Results

In mothers, relevant associations were found among stressor pile-up, social support, parental relationships, coping, stress, and mental health. Similar relevant associations were observed in fathers, except for coping. For mothers, the association between stressor pile-up and symptoms of anxiety was fully mediated by coping and stress. In contrast, the association with symptoms of depression was fully mediated by social support, coping, and stress. For fathers, the association between stressor pile-up and symptoms of anxiety as well as depression was complementary mediated through stress.

Conclusion

Our findings contribute to the existing literature by illuminating gender-specific differences in parental symptoms of anxiety and depression, suggesting that tailored emotion regulation programs could effectively alleviate these issues. By emphasizing these dynamics, we highlight the importance of personalized approaches in addressing the unique challenges faced by parents of different genders.

背景：虽然双ABCX模型已经在各种情况下进行了评估，但关于罕见病儿童父母性别的大规模研究仍然很少。目的：探讨双ABCX模型在罕见病患儿父母大样本中的适用性。方法：对n = 668例罕见病患儿的母亲和n = 461例罕见病患儿的父亲进行多中心研究，探讨父母心理健康的潜在预测因素。采用多重中介模型对双ABCX模型中影响亲本适应的因子（GAD-7和PHQ-9）进行了横断面研究。结果：在母亲中，压力源堆积、社会支持、父母关系、应对、压力与心理健康存在相关关系。在父亲中也观察到类似的相关关联，除了应对。对于母亲来说，压力源堆积和焦虑症状之间的联系完全由应对和压力介导。相反，与抑郁症状的关联完全由社会支持、应对和压力介导。对于父亲来说，压力源堆积与焦虑和抑郁症状之间的联系是通过压力介导的互补关系。结论：我们的研究结果有助于阐明父母焦虑和抑郁症状的性别差异，表明量身定制的情绪调节程序可以有效缓解这些问题。通过强调这些动态，我们强调了个性化方法在解决不同性别父母面临的独特挑战方面的重要性。

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引用次数: 0

Exploring the usefulness of companion pet ownership in the everyday functioning of children with Autism Spectrum Disorder in the United Arab Emirates: A qualitative focus-group study 在阿拉伯联合酋长国探索伴侣宠物在自闭症谱系障碍儿童日常功能中的有用性：一项定性焦点小组研究。

IF 2.6 2区医学 Q1 EDUCATION, SPECIAL

Research in Developmental Disabilities

Pub Date : 2025-11-10 DOI: 10.1016/j.ridd.2025.105154

Shamsa Ali Almarzooqi , Maria Efstratopoulou , Hawraa Habeeb , Maxwell Opoku

Purpose

Despite the global recognition of the benefits of companion pet ownership, there is a lack of research exploring this phenomenon in an Arabic-speaking context such as the United Arab Emirates (UAE). This study fills the knowledge gap by exploring the usefulness of pet ownership on the social skills, communication, emotional and physical well-being of children with Autism Spectrum Disorder (ASD) in the UAE.

Materials and methods

The study employs a phenomenological research design, utilizing focus-group discussions with 12 mothers of children diagnosed with ASD who own pets. The parents participated in the focus group discussions to understand the usefulness of pet ownership to their children with ASD.

Results

Findings are categorized into three primary themes: enhancement of social interaction and communication skills, improvement in emotional well-being, and encouragement of physical activity. For instance, the presence of pets, especially dogs, significantly boosts social engagement and non-verbal communication, reduces anxiety and stress, and increases physical activity among children with ASD.

Conclusion

Companion pet ownership may inform family-centered routines for children with ASD in the UAE. Future work should assess the feasibility of structured animal-assisted interventions (AAI), which are distinct from household pet ownership.

目的：尽管全球都认识到陪伴宠物的好处，但在阿拉伯联合酋长国（UAE）等讲阿拉伯语的国家，却缺乏对这一现象的研究。这项研究通过探索养宠物对阿联酋自闭症谱系障碍（ASD）儿童的社交技能、沟通、情感和身体健康的影响，填补了这一知识空白。材料和方法：本研究采用现象学研究设计，利用焦点小组讨论，与12名被诊断为ASD的孩子的母亲进行讨论，这些母亲拥有宠物。父母参加了焦点小组讨论，以了解养宠物对患有自闭症的孩子的有用性。结果：研究结果分为三个主要主题：增强社会互动和沟通技巧，改善情绪健康，鼓励体育锻炼。例如，宠物，尤其是狗的存在，显著促进了自闭症儿童的社会参与和非语言交流，减少了焦虑和压力，并增加了他们的身体活动。结论：陪伴宠物可能会影响阿联酋ASD儿童以家庭为中心的日常生活。未来的工作应该评估结构化动物辅助干预（AAI）的可行性，这与家庭宠物饲养不同。

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