Journal of Intellectual Disability Research最新文献

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Ageing in Adults With Mild and Moderate Intellectual Disabilities in Brazil: A Biopsychosocial Comparison of Individuals With and Without Down Syndrome. 巴西轻度和中度智力残疾成人的老龄化:患有和不患有唐氏综合症的个体的生物心理社会比较
IF 2.4 2区 医学
Journal of Intellectual Disability Research Pub Date : 2026-07-28 DOI: 10.1111/jir.70151
Leila Regina de Castro, Rita de Cassia Ernandes, Erika Christina Gouveia E Silva, Luciana Mascarenhas Fonseca, José Maria Montiel, Angelica Castilho Alonso
{"title":"Ageing in Adults With Mild and Moderate Intellectual Disabilities in Brazil: A Biopsychosocial Comparison of Individuals With and Without Down Syndrome.","authors":"Leila Regina de Castro, Rita de Cassia Ernandes, Erika Christina Gouveia E Silva, Luciana Mascarenhas Fonseca, José Maria Montiel, Angelica Castilho Alonso","doi":"10.1111/jir.70151","DOIUrl":"10.1111/jir.70151","url":null,"abstract":"<p><strong>Objectives: </strong>The objective of this study is to investigate functional, cognitive, physical and nutritional outcomes in adults with intellectual disabilities (IDs), comparing individuals with and without Down syndrome from São Paulo, Brazil, and to evaluate the associations of group, degree of disability, age and sex with these outcomes. Additionally, we hypothesized that individuals with Down syndrome would present greater vulnerability to cognitive and physical decline compared to those with ID of other aetiologies.</p><p><strong>Method: </strong>This cross-sectional observational study included 52 adults with ID divided into two groups: (1) 24 participants with Down syndrome (ID-DS) and (2) 28 participants with non-DS aetiologies (ID-nonDS). Assessments included sociodemographic and clinical data; functional independence measure (FIM); physical performance (handgrip strength, 30-s sit-to-stand test, gait speed test and MiniBESTest); nutritional status (Mini Nutritional Assessment [MNA]); cognitive function (Cambridge Cognitive Examination for Mental Disorders of the Elderly-Down Syndrome [CAMCOG-DS]); cognitive decline (Informant Questionnaire on Cognitive Decline in the Elderly [IQCODE]); and functional activities (Pfeffer Questionnaire [QPAF]). Data were obtained through self-report whenever possible, and proxy report (caregivers) when necessary, based on participants' communication abilities.</p><p><strong>Results: </strong>Compared with the ID-nonDS group, the ID-DS group demonstrated significantly poorer learning (β = -2.56; p = 0.049) and remote memory performance (β = -1.18; p = 0.011), a nonsignificant trend towards lower handgrip strength (β = -4.68; p = 0.051) and more falls (β = -0.39; p = 0.050). Sex and degree of disability were associated with several outcomes, whereas age showed no significant effect.</p><p><strong>Conclusion: </strong>Adults in the ID-DS group exhibited cognitive and physical profiles suggestive of increased vulnerability to age-related functional impairment compared with adults with other forms of ID. These findings should be interpreted cautiously due to the cross-sectional design and sample size limitations. Replication in larger samples will be necessary to confirm these observations.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-07-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148604200","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Effectiveness and Cost-Effectiveness of Models of Healthcare for People With Intellectual Disability in Australia: A Scoping Review. 澳大利亚智力残疾者医疗保健模式的有效性和成本效益:范围审查。
IF 2.4 2区 医学
Journal of Intellectual Disability Research Pub Date : 2026-07-18 DOI: 10.1111/jir.70148
Jenny Downs, Dragana Prodanovic, Ruth Leong, Katie Brooker, Helen Leonard, Julian N Trollor, Kitty-Rose Foley
{"title":"Effectiveness and Cost-Effectiveness of Models of Healthcare for People With Intellectual Disability in Australia: A Scoping Review.","authors":"Jenny Downs, Dragana Prodanovic, Ruth Leong, Katie Brooker, Helen Leonard, Julian N Trollor, Kitty-Rose Foley","doi":"10.1111/jir.70148","DOIUrl":"https://doi.org/10.1111/jir.70148","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;People with intellectual disability experience significant gaps in healthcare delivery resulting in poor health outcomes. Appropriately designed healthcare is required to meet the needs of this population and achieve better health outcomes. Little is known about the structure of healthcare delivery for people with intellectual disability and whether it is effective or cost-effective. To improve health services, this scoping review sought to describe how models of healthcare are structured and summarise evidence for their effectiveness and cost-effectiveness for people with intellectual disability in Australia.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;A preliminary search of literature describing models of healthcare for people with intellectual disability in Australia was conducted to generate a description of how healthcare is delivered for people with intellectual disability. Following PRISMA-ScR guidelines, an electronic search of peer-reviewed literature of four databases (MEDLINE, CINAHL, PsycINFO and Cochrane Library) was undertaken in August 2024 and updated in February 2025, and websites of government departments of health across Australia were searched for grey literature. All study designs conducted in any healthcare setting in Australia were included if evaluation data were available. Outcome data related to the person with intellectual disability, carers, clinicians/service providers or health services were extracted. Data were synthesised qualitatively.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Fifteen publications were identified including 10 peer-reviewed articles and five reports in the grey literature. The following components of healthcare delivery were described: reasonable adjustments, person-centred care, capacity building, care coordination, cross-sectoral coordination and specialist multidisciplinary teams. Each model of care was associated with some evidence of effectiveness. Cost-effectiveness was found with models that used cross-sectoral care coordination.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;The models of care were heterogeneous, and evaluations indicated positive outcomes including better health outcomes and reduced costs. The scope of evaluations and therefore generalisability of findings was limited. More high-quality research and suitable measures of outcome are needed to guide the design of best practice healthcare for people with intellectual disability. These findings provide important guidance for the implementation of the National Roadmap for Improving the Health of People with Intellectual Disability, a current policy initiative in Australia. The effectiveness and cost-effectiveness of cross-sectoral care coordination suggest that coordinated care at the intersection of the health and disability sectors could improve health outcomes. We suggest that strategies for effective delivery of healthcare are structured and standardised to enable more widespread implementation and evaluation by policy make","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148471181","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Psychosocial Well-Being and Caregiving Challenges Among Parents of Children With 1p36 Deletion Syndrome. 1p36缺失综合征患儿父母的心理社会健康和照料挑战
IF 2.4 2区 医学
Journal of Intellectual Disability Research Pub Date : 2026-07-18 DOI: 10.1111/jir.70147
Motoko Watanabe, Chieko Kibe, Masumi Sugawara, Toshiyuki Yamamoto, Hidehiko Miyake
{"title":"Psychosocial Well-Being and Caregiving Challenges Among Parents of Children With 1p36 Deletion Syndrome.","authors":"Motoko Watanabe, Chieko Kibe, Masumi Sugawara, Toshiyuki Yamamoto, Hidehiko Miyake","doi":"10.1111/jir.70147","DOIUrl":"https://doi.org/10.1111/jir.70147","url":null,"abstract":"<p><strong>Background: </strong>The 1p36 deletion syndrome is a subtelomeric deletion syndrome characterized by developmental delay, epilepsy, and distinctive facial features. The diagnostic rate has improved with advances in genetic testing, including chromosomal microarray analysis. However, little is known about the psychosocial impact of a child's diagnosis on parents. This study aimed to explore the psychosocial experiences related to parenting among parents of children with 1p36 deletion syndrome.</p><p><strong>Methods: </strong>The questionnaire survey was conducted among parents of children with 1p36 deletion syndrome, through the Japanese family association related to the syndrome. The questionnaire included items on the characteristics of parents and their children, information sources for 1p36 deletion syndrome, and complications and issues related to this syndrome. Parental mental health was assessed using measures of psychological distress and subjective well-being, with affiliate stigma examined as a key factor associated with mental health outcomes, along with other psychological variables including parental strain and self-esteem.</p><p><strong>Results: </strong>Thirty-nine parents (mean age: 43.1 years) responded to the questionnaire. The mean age of the child at diagnosis was 1.9 years. Most parents obtained information from the internet, and information from medical and genetic specialists was limited. Parental challenges in medical and welfare aspects were diverse and varied by the child's developmental stage. Exploratory path analysis suggested that the association between affiliate stigma and mental health may be mediated by parental strain and self-esteem. Furthermore, affiliate stigma was significantly higher in parents of children with 1p36 deletion syndrome than in those with Down syndrome.</p><p><strong>Conclusions: </strong>Parents of children with 1p36 deletion syndrome experience limited access to information from medical and genetic specialists, diverse medical and welfare challenges across developmental stages, and potentially high levels of affiliate stigma. These findings suggest the need for psychosocial support that considers the potential impact of affiliate stigma and is tailored to the evolving challenges experienced across the child's developmental stages.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-07-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148471203","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Prevalence of Psychotropic Use and Psychotropic Polypharmacy in a Finnish National Cohort of Persons With Intellectual Disabilities. 芬兰国家智力残疾者队列中精神药物使用和精神药物综合用药的流行情况。
IF 2.4 2区 医学
Journal of Intellectual Disability Research Pub Date : 2026-07-15 DOI: 10.1111/jir.70145
Ville Virtanen, Leena Saastamoinen, Maria Arvio, Hannu T Vesala, Sonja Miettinen, Antti Teittinen, Anna-Maija Tolppanen
{"title":"Prevalence of Psychotropic Use and Psychotropic Polypharmacy in a Finnish National Cohort of Persons With Intellectual Disabilities.","authors":"Ville Virtanen, Leena Saastamoinen, Maria Arvio, Hannu T Vesala, Sonja Miettinen, Antti Teittinen, Anna-Maija Tolppanen","doi":"10.1111/jir.70145","DOIUrl":"https://doi.org/10.1111/jir.70145","url":null,"abstract":"<p><strong>Background: </strong>Psychotropic use and psychotropic polypharmacy are common in people with intellectual disabilities, but representative population-based studies on this topic are scarce. We evaluated the prevalence of psychotropic use and psychotropic polypharmacy in a Finnish nationwide cohort of people with intellectual disabilities aged 0-97 years.</p><p><strong>Methods: </strong>The annual prevalence of psychotropic use in 2019 was studied among 37 196 individuals with intellectual disabilities and an age- and sex-matched comparison cohort with no diagnosis of intellectual disabilities. Psychotropics included antipsychotics, antidepressants, anxiolytics, hypnotics and sedatives and antiepileptics indicated for bipolar disorder (carbamazepine, valproic acid, lamotrigine, pregabalin and clonazepam). Prevalence of interclass psychotropic polypharmacy (use from ≥ 2 different psychotropic groups) was evaluated in a 4-month time window at the end of 2019.</p><p><strong>Results: </strong>Prevalence of psychotropic use was higher in the intellectual disability cohort (42.3%) than comparison cohort (15.0%). Antipsychotics were the most common psychotropic group in the intellectual disability cohort (28%), with lower prevalence in the comparison cohort (3.3%). The prevalence of antidepressant use was 19.4% in the intellectual disability cohort and 9.7% in the comparison cohort. A likely indication was identified for 52.9% of psychotropic users with intellectual disability (major psychiatric comorbidity 38.1%, challenging behaviour 22.1%). Psychotropic polypharmacy was more common in the intellectual disability cohort (18.2%), than in the comparison cohort (3.6%).</p><p><strong>Conclusions: </strong>Our findings highlight concerns about psychotropic polypharmacy and potential overmedication. Using a comprehensive, nationwide cohort, this study emphasises the need for more evidence-based, person-centred approaches, including careful diagnostics, non-pharmacological interventions and regular treatment reviews.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148447502","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
What Constitutes Effective Support and Provision Within Day Service Centres for People With Intellectual Disabilities? A Systematic Review of Qualitative Research. 什么是日间服务中心为智障人士提供的有效支援?质性研究的系统回顾。
IF 2.4 2区 医学
Journal of Intellectual Disability Research Pub Date : 2026-07-15 DOI: 10.1111/jir.70146
James Belsey, Rachel Harrison
{"title":"What Constitutes Effective Support and Provision Within Day Service Centres for People With Intellectual Disabilities? A Systematic Review of Qualitative Research.","authors":"James Belsey, Rachel Harrison","doi":"10.1111/jir.70146","DOIUrl":"https://doi.org/10.1111/jir.70146","url":null,"abstract":"<p><strong>Background: </strong>This review aimed to investigate the effectiveness and quality of support and provision within day service centres for people with intellectual disabilities.</p><p><strong>Method: </strong>The International Bibliography of the Social Sciences, Scopus and PsycInfo databases were searched in August 2024, and the results were reported according to the PRISMA guidelines. Peer-reviewed, English-language, qualitative studies that investigated the effectiveness of day service provision for people with intellectual disabilities in non-residential settings were considered for review. Methodological quality of the included studies was assessed using the JBI Critical Appraisal Tool for qualitative research. Qualitative themes were identified through thematic analysis and synthesised using the ConQual approach.</p><p><strong>Results: </strong>Fourteen studies were included and four key themes emerged: 'perceptions of service quality'; 'community-orientation, integration, and empowerment'; 'challenging behaviours and safety'; and 'staff-centred factors and job satisfaction'. Confidence in the evidence was 'very low' for 3/4 themes, while there was 'moderate' confidence in the evidence related to the theme 'perceptions of service quality'.</p><p><strong>Conclusions: </strong>Day service centres for people with intellectual disabilities may enhance their effectiveness and quality of provision by concentrating on promoting communication, engagement, relationships, social networks and community integration. Addressing the methodological shortcomings and incomplete reporting of related research in future would contribute to improvements in overall confidence in the evidence base. This can then be better used to inform and further enhance day service provision for people with intellectual disabilities.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148447522","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Impact of an Interactive Art Session on Resident Physicians' Views Towards Treating Adults With Intellectual and Developmental Disabilities: A Qualitative Analysis. 互动艺术课程对住院医师治疗成人智力和发育障碍观点的影响:一项定性分析。
IF 2.4 2区 医学
Journal of Intellectual Disability Research Pub Date : 2026-07-09 DOI: 10.1111/jir.70135
Jessica Solomon Sanders, Elizabeth Paschal, Brooke Dorsey
{"title":"The Impact of an Interactive Art Session on Resident Physicians' Views Towards Treating Adults With Intellectual and Developmental Disabilities: A Qualitative Analysis.","authors":"Jessica Solomon Sanders, Elizabeth Paschal, Brooke Dorsey","doi":"10.1111/jir.70135","DOIUrl":"10.1111/jir.70135","url":null,"abstract":"<p><strong>Background: </strong>Many physicians feel uncomfortable caring for patients with intellectual and developmental disabilities (IDD). This discomfort can be a barrier to individuals with IDD accessing age-appropriate and high-quality health care. One well-established strategy for improving comfort with individuals with IDD is based on contact theory: increasing interactions with dissimilar people can lead to decreased negative attitudes towards that population. Drawing on contact theory, we implemented interactive art sessions with medical residents and artists with IDD. The purpose of this study was to explore the impact of these sessions on residents' comfort treating patients with IDD.</p><p><strong>Methods: </strong>Semistructured interviews were conducted with residents who participated in the interactive art sessions, and a qualitative thematic analysis was conducted.</p><p><strong>Results: </strong>Interviews yielded the following four themes: (1) additional exposure to people with IDD helped increase participants' comfort caring for patients with IDD; (2) art sessions helped participants learn how to navigate challenges related to clinical interviewing, assessment, and patient communication; (3) the format of the art sessions created an environment that facilitated connection; and (4) participants were able to acknowledge biases.</p><p><strong>Conclusions: </strong>Utilizing contact theory led to a successful program where resident physicians gained the opportunity to engage with adults with IDD in a unique way, allowing them to gain experience communicating with this population and see them as dynamic individuals rather than solely patients. This led to increased comfort treating patients with IDD.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13460630/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148412139","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Belonging in Reduced-Size Classrooms: Student Outcomes Among Chinese Upper Secondary Students With Intellectual and Other Documented Disabilities. 在小班教室中的归属感:中国高中生智力残疾和其他残疾学生的学习成绩。
IF 2.4 2区 医学
Journal of Intellectual Disability Research Pub Date : 2026-07-08 DOI: 10.1111/jir.70142
Peizhu Shang, Yuxi Wu, Lizi Chen
{"title":"Belonging in Reduced-Size Classrooms: Student Outcomes Among Chinese Upper Secondary Students With Intellectual and Other Documented Disabilities.","authors":"Peizhu Shang, Yuxi Wu, Lizi Chen","doi":"10.1111/jir.70142","DOIUrl":"https://doi.org/10.1111/jir.70142","url":null,"abstract":"<p><strong>Background: </strong>International debates on inclusive education often position reduced-size or specialized classrooms as either supportive provision or potentially segregating placement. Student-perspective evidence remains limited, particularly for upper secondary students with intellectual and other documented disabilities.</p><p><strong>Methods: </strong>This sequential explanatory mixed-methods study examined associations between reduced-size classroom (RSC) placement and academic and socio-emotional outcomes among 153 upper secondary students with documented disabilities in Wuhan, China. Students were enrolled in RSCs of no more than eight students (n = 47) or mainstream classrooms with resource-room support (n = 106). Structural equation modelling estimated direct and indirect associations involving social integration, teacher support and academic self-efficacy, with prior special education experience treated as a key covariate. Semistructured interviews with nine RSC students explained and contextualized the quantitative patterns.</p><p><strong>Results: </strong>After adjustment, RSC placement remained statistically associated with social integration, teacher support and academic self-efficacy, although estimates were attenuated. Bootstrap estimates supported indirect associations with subjective well-being through social integration and teacher support, and with academic achievement through teacher support and academic self-efficacy. Interviews highlighted belonging, personalized instruction, teacher closeness, reduced anxiety and academic confidence, while showing that students valued support quality more than placement labels.</p><p><strong>Conclusions: </strong>Reduced-size placement was associated with more favourable student-reported outcomes when students perceived stronger relational security, individualized instruction and teacher support. Because placement was nonrandom and the quantitative data were cross-sectional, findings should be interpreted as associational rather than causal. The study shifts attention from a simple inclusion-versus-segregation binary toward placement quality and support processes that may be especially relevant for students with substantial support needs in upper secondary education.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-07-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148412122","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Securing Educational Support for Children With Rare Genetic Conditions: Mothers' Experiences and Impacts on the Family. 为患有罕见遗传病的儿童提供教育支持:母亲的经历及其对家庭的影响。
IF 2.4 2区 医学
Journal of Intellectual Disability Research Pub Date : 2026-07-08 DOI: 10.1111/jir.70141
Lowri O'Donovan, Anne-Marie Burn, Tamsin Ford, Marianne van den Bree
{"title":"Securing Educational Support for Children With Rare Genetic Conditions: Mothers' Experiences and Impacts on the Family.","authors":"Lowri O'Donovan, Anne-Marie Burn, Tamsin Ford, Marianne van den Bree","doi":"10.1111/jir.70141","DOIUrl":"https://doi.org/10.1111/jir.70141","url":null,"abstract":"<p><strong>Background: </strong>Children with rare genetic conditions are more likely to experience neurodevelopmental challenges requiring additional educational support. Although the governments in the United Kingdom and Ireland are committed to providing such support, securing it can be challenging for parents, with potential adverse implications for their mental health. Children who do not receive the educational support they need are at greater risk of poorer educational outcomes. This study aimed to remedy the lack of empirical data about the experiences of parents of children with rare genetic conditions in obtaining educational support and how these experiences affect them and their families.</p><p><strong>Method: </strong>Sixteen mothers were interviewed about their experiences of securing educational support for their child(ren) with a rare genetic condition. Qualitative data were collected during the Covid-19 pandemic. Participants reflected on experiences both prior to and during this period. Data were analysed using Framework Analysis.</p><p><strong>Results: </strong>Five main themes were identified: (1) fighting for access into 'the system', (2) a lengthy process to secure support, (3) factors enabling access, (4) challenges after securing support and (5) impact of experience on mothers.</p><p><strong>Conclusions: </strong>Accessing educational support was challenging, lengthy and stressful, with negative effects on mothers' mental health and relationships with wider family members. Parents of children with rare genetic conditions may face additional challenges securing support.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-07-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148412044","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Perceived Autonomy in People With Intellectual Disabilities: Psychometric Properties of an Easy-to-Read Self-Administered Scale. 智障人士的感知自主性:易读自我管理量表的心理测量特性。
IF 2.4 2区 医学
Journal of Intellectual Disability Research Pub Date : 2026-07-07 DOI: 10.1111/jir.70144
Rómulo J González-García, Daniel Ordiñana-Bellver, Carlos Pérez-Campos, Gabriel Martínez-Rico
{"title":"Perceived Autonomy in People With Intellectual Disabilities: Psychometric Properties of an Easy-to-Read Self-Administered Scale.","authors":"Rómulo J González-García, Daniel Ordiñana-Bellver, Carlos Pérez-Campos, Gabriel Martínez-Rico","doi":"10.1111/jir.70144","DOIUrl":"10.1111/jir.70144","url":null,"abstract":"<p><strong>Background: </strong>The concept of intellectual disability has evolved into a multidimensional approach. This approach recognises the importance of contextual and environmental factors, highlighting autonomy as essential for the well-being and quality of life of people with intellectual disabilities (ID).</p><p><strong>Method: </strong>The study was designed to assess the psychometric properties of a new measure of perceived autonomy in people with ID, adapted to an Easy-to-Read (E2R) format for self-administration. The study was conducted in Spain. A total of 492 adults with ID attending occupational centres completed the scale. Exploratory (EFA) and Confirmatory Factor Analysis (CFA) were conducted on independent subsamples to examine its internal structure, together with reliability and validity evidence.</p><p><strong>Results: </strong>Participants reported moderate levels of perceived autonomy. The EFA yielded a two-factor structure-autonomy in future planning and autonomy in daily activities-accounting for 50.1% of the variance. The CFA corroborated this structure with an adequate fit (CFI = 0.949, TLI = 0.930, RMSEA = 0.084, SRMR = 0.083). Internal consistency was good (ω = 0.83; α = 0.79), and the two factors showed evidence of convergent and discriminant validity.</p><p><strong>Conclusions: </strong>The findings support the reliability and validity of the E2R scale as a self-report measure of perceived autonomy in people with ID. The two-factor structure indicates that this population distinguishes between autonomy in daily activities and autonomy in future planning, and that, when adequately adapted, people with ID can report their own perceived autonomy directly.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-07-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148396946","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Are Bioimpedance Parameters Altered in Adults With Down Syndrome? A Cross-Sectional Study. 成人唐氏综合症患者的生物阻抗参数会改变吗?横断面研究。
IF 2.4 2区 医学
Journal of Intellectual Disability Research Pub Date : 2026-07-07 DOI: 10.1111/jir.70143
Anselmo de Athayde Costa E Silva, María Carbó-Carreté, Casimiro Javierre, Joan Guàrdia-Olmo, Stamatis Agiovlasitis, Guillermo R Oviedo
{"title":"Are Bioimpedance Parameters Altered in Adults With Down Syndrome? A Cross-Sectional Study.","authors":"Anselmo de Athayde Costa E Silva, María Carbó-Carreté, Casimiro Javierre, Joan Guàrdia-Olmo, Stamatis Agiovlasitis, Guillermo R Oviedo","doi":"10.1111/jir.70143","DOIUrl":"https://doi.org/10.1111/jir.70143","url":null,"abstract":"<p><strong>Background: </strong>Individuals with Down syndrome (DS) exhibit altered body composition that could be assessed through bioelectrical impedance analysis (BIA). This study aims to compare the BIA measures and bioelectrical impedance vector analysis (BIVA) between individuals with and without DS.</p><p><strong>Methods: </strong>We evaluated 46 individuals with and 46 without DS through BIA and BIVA. We employed generalized linear models (GLM) to assess the effects of group and sex on BIA, adjusting by age and height.</p><p><strong>Results: </strong>Individuals with DS had lower whole-body resistance/height (DS: 332.1 ± 51.1; non-DS: 349.0 ± 57.5 Ω/m), reactance/height (DS: 36.4 ± 5.0; non-DS: 41.9 ± 4.9 Ω/m) and impedance/height (DS: 334.1 ± 51.2; non-DS: 351.4 ± 57.6 Ω/m), while men with DS showed lower phase angle (DS: 6.4 ± 0.7; non-DS: 7.0° ± 0.5°) and lower bioimpedance index (DS: 50.8 ± 6.1; non-DS: 55.2 ± 6.5 Ω/m<sup>2</sup>); men and women with DS had higher total body water (males p = 0.030; females p = 0.006) and intracellular water (males p = 0.020; females p = 0.010) compared with individuals without DS; women had lower extracellular water (males p = 0.090; females p = 0.004) compared with individuals without DS; the bioelectrical vectors for individuals with DS were different from the population ellipses (p < 0.050), and showed overhydration compared with non-DS.</p><p><strong>Conclusions: </strong>Adults with DS showed a distinct hydration pattern in comparison with non-DS adults, as shown in BIA and BIVA analysis.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2026-07-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148397002","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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