Temporal-sampling theory suggests that lexical stress discrimination plays an important role in language disorders. This study explored whether this is also the case in Down syndrome (DS) and, particularly, whether lexical stress discrimination could contribute to accounting for the phonological and grammatical skills of teenagers with this syndrome.
Method
Lexical stress discrimination, along with a range of phonological and grammatical skills, was assessed in a group of 27 teenagers with DS. The differential predictive role of lexical stress discrimination in phonology and grammar was studied, taking into account the potential effect of other relevant variables, namely, hearing thresholds, verbal short-term memory, chronological age and non-verbal cognition.
Results
Regression models revealed that, for the phonological measurements, only verbal short-term memory emerged as a significant predictor. For grammatical integration and sentence repetition, both verbal short-term memory and lexical stress discrimination played a predictive role. For grammar comprehension, lexical stress discrimination was the only significant predictor.
Conclusions
The results regarding grammar are consistent with a temporal-sampling framework. Given the observed predictive role of lexical stress discrimination in the grammatical skills of teenagers with DS, this prosodic skill could potentially be examined and incorporated as a prospective target in intervention programmes.
{"title":"Exploring the Predictive Role of Lexical Stress Discrimination in the Phonological and Grammatical Skills of Teenagers With Down Syndrome","authors":"Elena López-Riobóo, Pastora Martínez-Castilla","doi":"10.1111/jir.70050","DOIUrl":"10.1111/jir.70050","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Temporal-sampling theory suggests that lexical stress discrimination plays an important role in language disorders. This study explored whether this is also the case in Down syndrome (DS) and, particularly, whether lexical stress discrimination could contribute to accounting for the phonological and grammatical skills of teenagers with this syndrome.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Lexical stress discrimination, along with a range of phonological and grammatical skills, was assessed in a group of 27 teenagers with DS. The differential predictive role of lexical stress discrimination in phonology and grammar was studied, taking into account the potential effect of other relevant variables, namely, hearing thresholds, verbal short-term memory, chronological age and non-verbal cognition.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Regression models revealed that, for the phonological measurements, only verbal short-term memory emerged as a significant predictor. For grammatical integration and sentence repetition, both verbal short-term memory and lexical stress discrimination played a predictive role. For grammar comprehension, lexical stress discrimination was the only significant predictor.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The results regarding grammar are consistent with a temporal-sampling framework. Given the observed predictive role of lexical stress discrimination in the grammatical skills of teenagers with DS, this prosodic skill could potentially be examined and incorporated as a prospective target in intervention programmes.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 1","pages":"48-57"},"PeriodicalIF":2.0,"publicationDate":"2025-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70050","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145206699","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}
Carly Moser, Ryan Adams, Shuting Zheng, Somer Bishop, Julie Lounds Taylor
Background
Previous research has shown that autistic transition-aged youth with low IQ experience low rates of integrated employment and postsecondary education (PSE) enrolment. Notably, much of this work was conducted over a decade ago, and the landscape of opportunities has changed since that time. Therefore, the present study described the rate of involvement in vocational and PSE activities among a contemporary sample of autistic youth with low IQ residing in the United States.
Method
Online survey responses were collected from 91 caregivers of autistic youth with low IQ residing in the United States. The survey gathered demographic information and assessed the behavioural functioning of the youth, along with their vocational and educational experiences.
Results
Thirty-five per cent of autistic youth with low IQ were not involved in any vocational/PSE activity. Approximately 15% of youth were participating in integrated employment (with or without supports), and 5% were enrolled in a range of degree- and non-degree-seeking PSE programmes. In a follow-up analysis, we found that youth who were engaged in vocational/PSE activities had higher family incomes, higher daily living skills, and lower rates of borderline-to-clinical levels of internalising and externalising behaviours than those who were not engaged in any vocational or PSE activity.
Conclusions
Our findings indicate low participation (~20%) in integrated employment and PSE programmes, despite national efforts to increase these types of activities, and highlight the continued need to remove barriers that prevent engagement in vocational and PSE activities among autistic youth with low IQ.
{"title":"Brief Report: The Vocational and Educational Activities of Transition-Aged Autistic Youth With Low IQ","authors":"Carly Moser, Ryan Adams, Shuting Zheng, Somer Bishop, Julie Lounds Taylor","doi":"10.1111/jir.70054","DOIUrl":"10.1111/jir.70054","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Previous research has shown that autistic transition-aged youth with low IQ experience low rates of integrated employment and postsecondary education (PSE) enrolment. Notably, much of this work was conducted over a decade ago, and the landscape of opportunities has changed since that time. Therefore, the present study described the rate of involvement in vocational and PSE activities among a contemporary sample of autistic youth with low IQ residing in the United States.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Online survey responses were collected from 91 caregivers of autistic youth with low IQ residing in the United States. The survey gathered demographic information and assessed the behavioural functioning of the youth, along with their vocational and educational experiences.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Thirty-five per cent of autistic youth with low IQ were not involved in any vocational/PSE activity. Approximately 15% of youth were participating in integrated employment (with or without supports), and 5% were enrolled in a range of degree- and non-degree-seeking PSE programmes. In a follow-up analysis, we found that youth who were engaged in vocational/PSE activities had higher family incomes, higher daily living skills, and lower rates of borderline-to-clinical levels of internalising and externalising behaviours than those who were not engaged in any vocational or PSE activity.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Our findings indicate low participation (~20%) in integrated employment and PSE programmes, despite national efforts to increase these types of activities, and highlight the continued need to remove barriers that prevent engagement in vocational and PSE activities among autistic youth with low IQ.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 2","pages":"218-224"},"PeriodicalIF":2.0,"publicationDate":"2025-09-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70054","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145191766","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}
Mary-Ann O'Donovan, Nikki Wedgwood, Greta Westermann, Fiona Rillotta, Tess Aitken
Background
Though people with intellectual disability have historically been excluded from university education, over the past three decades programmes facilitating the inclusion of people with intellectual disability in higher education, including university, have been developed in some jurisdictions such as the United States, Canada, Ireland, Europe and Australia. There is limited examination of the full range of potential outcomes for students with intellectual disability participating in such programmes. Such research rarely explores barriers and facilitators in relation to particular programme models and the achievement of the potential outcomes. The current study set out to examine the range of outcomes associated with inclusive university programmes, with a particular focus on autonomy, self-confidence, inclusion and employment.
Method
For this scoping review, six academic databases were searched using broad search terms. Forty-five studies meeting our inclusion criteria were subjected to quality assessment to ensure only high-quality evidence informed data analysis. Twenty-two studies were included in the final review, from which data were extracted to answer our research question.
Results
Students were reported to achieve outcomes related to employment, confidence, autonomy and social skills. Factors reported as either facilitating or impeding positive personal, vocational and/or socio-emotional outcomes for students with intellectual disability participating in inclusive university programmes included accessibility, expectations, supports, attitudes and acceptance, pedagogy and programme design.
Conclusions
Programmes that provide individualised support for the inclusion of people with intellectual disability in university life led to primarily positive outcomes for people with intellectual disability. We argue that a whole-of-university approach to supporting full and genuine inclusion of students with intellectual disability is needed and we provide recommendations for research and practice.
{"title":"Personal, Social and Vocational Outcomes of Inclusive University for People With Intellectual Disability","authors":"Mary-Ann O'Donovan, Nikki Wedgwood, Greta Westermann, Fiona Rillotta, Tess Aitken","doi":"10.1111/jir.70042","DOIUrl":"10.1111/jir.70042","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Though people with intellectual disability have historically been excluded from university education, over the past three decades programmes facilitating the inclusion of people with intellectual disability in higher education, including university, have been developed in some jurisdictions such as the United States, Canada, Ireland, Europe and Australia. There is limited examination of the full range of potential outcomes for students with intellectual disability participating in such programmes. Such research rarely explores barriers and facilitators in relation to particular programme models and the achievement of the potential outcomes. The current study set out to examine the range of outcomes associated with inclusive university programmes, with a particular focus on autonomy, self-confidence, inclusion and employment.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>For this scoping review, six academic databases were searched using broad search terms. Forty-five studies meeting our inclusion criteria were subjected to quality assessment to ensure only high-quality evidence informed data analysis. Twenty-two studies were included in the final review, from which data were extracted to answer our research question.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Students were reported to achieve outcomes related to employment, confidence, autonomy and social skills. Factors reported as either facilitating or impeding positive personal, vocational and/or socio-emotional outcomes for students with intellectual disability participating in inclusive university programmes included accessibility, expectations, supports, attitudes and acceptance, pedagogy and programme design.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Programmes that provide individualised support for the inclusion of people with intellectual disability in university life led to primarily positive outcomes for people with intellectual disability. We argue that a whole-of-university approach to supporting full and genuine inclusion of students with intellectual disability is needed and we provide recommendations for research and practice.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 12","pages":"1448-1473"},"PeriodicalIF":2.0,"publicationDate":"2025-09-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70042","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145186212","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}
Jill Bradshaw, Beckie Whelton, Julie Beadle-Brown, Lisa Richardson, Jennifer Leigh
Introduction
Outcomes for people with intellectual and developmental disabilities, particularly those with more severe and complex needs, depend on the quality of support they receive from staff. This paper explores staff perspectives on skilled support and relationships with training and experience.
Methods
Questionnaires were received from 93 staff working in 28 supported accommodation services in which observations of the quality of support had also been conducted. Staff were asked about experience, training and views on skilled support. Content analysis was used to code written responses. Statistical analysis explored relationships between staff responses, and the quality of support was observed.
Results
Staff perceived improving the quality of life of people they supported as key. All staff considered themselves as being at least partially skilled, with the majority associating being skilled with length of experience and attendance at training. Specific training was rarely mentioned, and receipt of training was not associated with the provision of better quality of support. Practice leadership was rarely mentioned.
Conclusions
In most cases, staff showed awareness of the principles set out in policy, but their reflections did not match observed practice.
{"title":"Exploring Staff Perceptions and Experiences in Services Providing Different Levels of Active Support","authors":"Jill Bradshaw, Beckie Whelton, Julie Beadle-Brown, Lisa Richardson, Jennifer Leigh","doi":"10.1111/jir.70047","DOIUrl":"10.1111/jir.70047","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Outcomes for people with intellectual and developmental disabilities, particularly those with more severe and complex needs, depend on the quality of support they receive from staff. This paper explores staff perspectives on skilled support and relationships with training and experience.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Questionnaires were received from 93 staff working in 28 supported accommodation services in which observations of the quality of support had also been conducted. Staff were asked about experience, training and views on skilled support. Content analysis was used to code written responses. Statistical analysis explored relationships between staff responses, and the quality of support was observed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Staff perceived improving the quality of life of people they supported as key. All staff considered themselves as being at least partially skilled, with the majority associating being skilled with length of experience and attendance at training. Specific training was rarely mentioned, and receipt of training was not associated with the provision of better quality of support. Practice leadership was rarely mentioned.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>In most cases, staff showed awareness of the principles set out in policy, but their reflections did not match observed practice.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 12","pages":"1486-1495"},"PeriodicalIF":2.0,"publicationDate":"2025-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70047","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145124895","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}
Eleftherios Savvas, Emmanouela Dimitrakopoulou, Harald A. Euler, Frans Coninx, Felix Bluemel, Anne Krieger, Karolin Schaefer, Philipp Mathmann, Corinna Gietmann, Katrin Neumann
Background
People with intellectual disabilities often have undetected hearing loss.
Methods
In this prospective observational study featuring 110 adults with intellectual disabilities, hearing evaluations based on objective hearing threshold estimation using distortion-product otoacoustic emission growth functions (DPOAEgfs) were performed in a sheltered workshop. Results were compared with thresholds obtained by conventional subjective pure-tone audiometry (cPTA) and the adaptive self-test PTA Multiple-Choice-Auditory-Graphical-Interactive-Check (MAGIC).
Results
The differences between the lowest thresholds obtained by cPTA and MAGIC for the frequencies 1, 2, 4 and 6 kHz (LPTATs) and the estimated distortion-product thresholds (EDPTs) were calculated. Four hundred twenty-seven of 880 (48.5%) pairs of measurements did not differ by any more than 5 dB. With LPTATs as reference criterion, for a favourable four-frequency average over 1.0, 2.0, 4.0 and 6.0 kHz with a cutoff of 20 dB HL, the sensitivity of the EDPTs was 92% and the specificity 62%; a cutoff of 30 dB HL increased the respective values to 98% and 77%.
Conclusions
DPOAEgfs are acceptable for estimating hearing thresholds in individuals with intellectual disability who may have limitations in performing conventional audiometry.
背景：智力残疾者往往有未被发现的听力损失。方法：对110名智力残疾成人进行前瞻性观察研究，采用畸变积耳声发射生长函数（dpoagf）对客观听力阈值进行评估。将结果与传统主观纯音听力学（cPTA）和自适应自测PTA多项选择-听觉-图形-交互-检查（MAGIC）获得的阈值进行比较。结果：计算了cPTA和MAGIC在1、2、4和6 kHz频率下获得的最低阈值（LPTATs）与估计的失真乘积阈值（EDPTs）之间的差异。880对测量中有427对（48.5%）的差异不超过5 dB。以LPTATs为参考标准，对于1.0、2.0、4.0和6.0 kHz以上的有利四频平均值，截止值为20 dB HL， EDPTs的灵敏度为92%，特异性为62%；30 dB HL的截止值分别提高到98%和77%。结论：dpoagf可用于估计智力残疾患者的听力阈值，这些患者在进行常规听力测量时可能受到限制。
{"title":"Hearing Threshold Estimation With Distortion Product Otoacoustic Emission Growth Functions in People With Intellectual Disabilities in an Outreach Setting","authors":"Eleftherios Savvas, Emmanouela Dimitrakopoulou, Harald A. Euler, Frans Coninx, Felix Bluemel, Anne Krieger, Karolin Schaefer, Philipp Mathmann, Corinna Gietmann, Katrin Neumann","doi":"10.1111/jir.70043","DOIUrl":"10.1111/jir.70043","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disabilities often have undetected hearing loss.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>In this prospective observational study featuring 110 adults with intellectual disabilities, hearing evaluations based on objective hearing threshold estimation using distortion-product otoacoustic emission growth functions (DPOAEgfs) were performed in a sheltered workshop. Results were compared with thresholds obtained by conventional subjective pure-tone audiometry (cPTA) and the adaptive self-test PTA Multiple-Choice-Auditory-Graphical-Interactive-Check (MAGIC).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The differences between the lowest thresholds obtained by cPTA and MAGIC for the frequencies 1, 2, 4 and 6 kHz (LPTATs) and the estimated distortion-product thresholds (EDPTs) were calculated. Four hundred twenty-seven of 880 (48.5%) pairs of measurements did not differ by any more than 5 dB. With LPTATs as reference criterion, for a favourable four-frequency average over 1.0, 2.0, 4.0 and 6.0 kHz with a cutoff of 20 dB HL, the sensitivity of the EDPTs was 92% and the specificity 62%; a cutoff of 30 dB HL increased the respective values to 98% and 77%.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>DPOAEgfs are acceptable for estimating hearing thresholds in individuals with intellectual disability who may have limitations in performing conventional audiometry.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 12","pages":"1474-1485"},"PeriodicalIF":2.0,"publicationDate":"2025-09-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70043","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145113345","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}
Susanna Zielonkowski, Philipp Mathmann, Awa Naghipour, Susanne Wasmuth, Lukas Prein, Ross Parfitt, Werner Brannath, Martin Scharpenberg, Vincent Jankovic, Anja Neumann, Katharina Schwarze, Karolin Schäfer, Christian Speckemeier, Corinna Gietmann, Katrin Neumann
Background
People with intellectual disabilities are more likely to have hearing loss than the general population, but in most cases, it remains unrecognised and unmanaged. The aims of this study were to determine whether the hearing status of people with intellectual disabilities can be correctly evaluated by themselves and/or their caregivers, and whether hearing loss compromises the hearing-related quality of life of people with intellectual disabilities.
Method
In the prospective cohort study, HörGeist, 1053 individuals with intellectual disabilities received hearing screening and, where necessary, diagnostic assessment and intervention within their living environment. A self-developed multipart questionnaire, including items regarding hearing-related quality of life, was answered by caregivers of the participants and was cross-checked with the results of the hearing tests. A multivariable regression was performed to verify an association between the hearing-related quality of life score and the degree of hearing loss.
Results
Hearing loss was diagnosed in 463 (44.0%) participants; thereof, only 120 (25.9%) cases were known beforehand. In 404 participants (59.0%) and 580 caregivers (61.5%), hearing status was rated correctly; it was overestimated in 34.6% and 33.4%, respectively (sensitivity: 0.223/0.271, respectively). The mean hearing-related quality of life score was 3.0 of 4 possible points. The multivariable regression revealed a small but significant association between the degree of hearing loss and hearing-related quality of life (β = −0.069; p < 0.001; adjusted R2 = 0.081).
Conclusions
Regular audiometric tests are recommended for improving the hearing-related quality of life in people with intellectual disabilities.
背景：智力残疾者比一般人群更容易出现听力损失，但在大多数情况下，这种情况仍未被认识和管理。本研究的目的是确定智力残疾者的听力状况是否可以由他们自己和/或他们的照顾者正确评估，以及听力损失是否会损害智力残疾者的听力相关生活质量。方法：在前瞻性队列研究中，HörGeist， 1053名智力残疾患者接受了听力筛查，必要时在其生活环境中进行诊断评估和干预。参与者的护理人员自行编写了一份由多个部分组成的问卷，其中包括与听力相关的生活质量问题，并与听力测试结果进行了交叉核对。采用多变量回归验证听力相关生活质量评分与听力损失程度之间的关联。结果：463名（44.0%）参与者被诊断为听力损失；其中，事先知道的病例只有120例（25.9%）。404名参与者（59.0%）和580名照顾者（61.5%）的听力状况评价正确；高估率分别为34.6%和33.4%（敏感性分别为0.223/0.271）。听力相关生活质量平均得分为3.0分（满分4分）。多变量回归显示听力损失程度与听力相关生活质量之间存在小而显著的相关性（β = -0.069; p 2 = 0.081）。结论：建议定期进行听力测试以改善智力残疾者的听力相关生活质量。
{"title":"Evaluating the Hearing-Related Quality of Life in People With Intellectual Disabilities","authors":"Susanna Zielonkowski, Philipp Mathmann, Awa Naghipour, Susanne Wasmuth, Lukas Prein, Ross Parfitt, Werner Brannath, Martin Scharpenberg, Vincent Jankovic, Anja Neumann, Katharina Schwarze, Karolin Schäfer, Christian Speckemeier, Corinna Gietmann, Katrin Neumann","doi":"10.1111/jir.70036","DOIUrl":"10.1111/jir.70036","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disabilities are more likely to have hearing loss than the general population, but in most cases, it remains unrecognised and unmanaged. The aims of this study were to determine whether the hearing status of people with intellectual disabilities can be correctly evaluated by themselves and/or their caregivers, and whether hearing loss compromises the hearing-related quality of life of people with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>In the prospective cohort study, HörGeist, 1053 individuals with intellectual disabilities received hearing screening and, where necessary, diagnostic assessment and intervention within their living environment. A self-developed multipart questionnaire, including items regarding hearing-related quality of life, was answered by caregivers of the participants and was cross-checked with the results of the hearing tests. A multivariable regression was performed to verify an association between the hearing-related quality of life score and the degree of hearing loss.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Hearing loss was diagnosed in 463 (44.0%) participants; thereof, only 120 (25.9%) cases were known beforehand. In 404 participants (59.0%) and 580 caregivers (61.5%), hearing status was rated correctly; it was overestimated in 34.6% and 33.4%, respectively (sensitivity: 0.223/0.271, respectively). The mean hearing-related quality of life score was 3.0 of 4 possible points. The multivariable regression revealed a small but significant association between the degree of hearing loss and hearing-related quality of life (<i>β</i> = −0.069; <i>p</i> < 0.001; adjusted <i>R</i><sup><i>2</i></sup> = 0.081).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Regular audiometric tests are recommended for improving the hearing-related quality of life in people with intellectual disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 12","pages":"1413-1424"},"PeriodicalIF":2.0,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70036","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145080871","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}
Emma Scripps, Paul Thompson, Peter E. Langdon, Richard P. Hastings, Bruce J. Tonge, Stewart L. Einfeld, Matthew R. Sanders, Kate Sofronoff, Kylie M. Gray
Background
Parents of children with developmental disabilities report higher levels of psychological distress. Parenting interventions may reduce parental psychological distress. Our aim was to investigate the psychological distress trajectories of parents receiving a parenting intervention.
Method
Data were drawn from a state-wide trial of Stepping Stones Triple P (SSTP) in Queensland and Victoria, Australia (n = 365 parents). Growth mixture modelling was used to describe psychological distress trajectories of parents of children with developmental disabilities and examine associations with the level of SSTP intervention received, child characteristics and financial hardship.
Results
Three groups of parents/caregivers were identified, two of which presented a significant decline in psychological distress over time and one group presented no significant change. Additionally, higher child behavioural and emotional problems and lower adaptive skills were associated with poorer parent psychological distress over time. Level 4 of the SSTP intervention was also associated with steeper declines in psychological distress over time.
Conclusions
Over a period of 18 months, with the implementation of the SSTP, parents' psychological distress tended to improve. Distinct groups of parents were identified based on different psychological distress trajectories. Findings indicate the significant role of child behavioural and emotional problems, children's adaptive behaviour and the level of SSTP in parent psychological distress trajectories.
{"title":"Psychological Distress Trajectories of Parents of Children With Developmental Disabilities Participating in a Parenting Intervention","authors":"Emma Scripps, Paul Thompson, Peter E. Langdon, Richard P. Hastings, Bruce J. Tonge, Stewart L. Einfeld, Matthew R. Sanders, Kate Sofronoff, Kylie M. Gray","doi":"10.1111/jir.70037","DOIUrl":"10.1111/jir.70037","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Parents of children with developmental disabilities report higher levels of psychological distress. Parenting interventions may reduce parental psychological distress. Our aim was to investigate the psychological distress trajectories of parents receiving a parenting intervention.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Data were drawn from a state-wide trial of Stepping Stones Triple P (SSTP) in Queensland and Victoria, Australia (<i>n</i> = 365 parents). Growth mixture modelling was used to describe psychological distress trajectories of parents of children with developmental disabilities and examine associations with the level of SSTP intervention received, child characteristics and financial hardship.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Three groups of parents/caregivers were identified, two of which presented a significant decline in psychological distress over time and one group presented no significant change. Additionally, higher child behavioural and emotional problems and lower adaptive skills were associated with poorer parent psychological distress over time. Level 4 of the SSTP intervention was also associated with steeper declines in psychological distress over time.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Over a period of 18 months, with the implementation of the SSTP, parents' psychological distress tended to improve. Distinct groups of parents were identified based on different psychological distress trajectories. Findings indicate the significant role of child behavioural and emotional problems, children's adaptive behaviour and the level of SSTP in parent psychological distress trajectories.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 10","pages":"1051-1060"},"PeriodicalIF":2.0,"publicationDate":"2025-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70037","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145033532","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}
This qualitative systematic review aimed to synthesise research on the experiences of people with an intellectual disability on autonomy and decision-making in their everyday lives.
Method
A systematic review was completed of studies published between 2012 and 2024 that included qualitative data exploring perceptions of people with an intellectual disability aged 18 and over on autonomy and decision-making in their lives, excluding quantitative studies and those only including carers. Searches (conducted April–August 2022, updated June 2024) were based on terms linked to intellectual disability, autonomy and decision-making. Databases included PsycINFO, PsycARTICLES, PubMed, Social Sciences Full Text, SocINDEX, CINAHL, MEDLINE and Scopus. The review protocol was registered on Prospero ID: CRD42022333120.
Results
A total of 15 studies, including 246 people with an intellectual disability, met the inclusion criteria. Quality was assessed using the Critical Appraisal Skills Programme criteria. Thematic synthesis generated four primary analytical themes: ‘We know what's best for you’, ‘The loudest voice gets heard’, ‘The meaning of autonomy’ and ‘Conflicting views on service role’.
Conclusion
The findings of this synthesis suggest that people with an intellectual disability often feel that their autonomy is not prioritised and that decisions are often made for them without their input. The findings highlight the need for person-centred approaches and systemic change to support the autonomy of people with an intellectual disability. Included studies often neglected to consider the researcher–participant relationship and used varied data collection and analytic methods, which produced heterogeneity in the review findings. Future research is needed to explore the impact of societal attitudes and beliefs on the autonomy of people with an intellectual disability, as well as the effectiveness of person-centred approaches in promoting autonomy.
背景：本定性系统综述旨在综合研究智障人士在日常生活中的自主和决策经验。方法：对2012年至2024年间发表的研究进行系统回顾，其中包括探讨18岁及以上智障人士对生活中自主性和决策的看法的定性数据，不包括定量研究和仅包括护理人员的研究。搜索（进行于2022年4月至8月，更新于2024年6月）基于与智力残疾、自主和决策相关的术语。数据库包括PsycINFO、PsycARTICLES、PubMed、Social Sciences Full Text、SocINDEX、CINAHL、MEDLINE和Scopus。审查协议已在Prospero上注册，ID: CRD42022333120。结果：共有15项研究，包括246名智障患者，符合纳入标准。使用关键评估技能计划标准评估质量。主题综合产生了四个主要的分析主题：“我们知道什么最适合你”、“最响亮的声音会被听到”、“自治的意义”和“对服务角色的冲突观点”。结论：这一综合研究的结果表明，智障人士经常觉得他们的自主权没有被优先考虑，决策往往是在没有他们参与的情况下为他们做出的。研究结果强调需要采取以人为本的方法和系统性变革，以支持智障人士的自主性。纳入的研究往往忽略了研究者与参与者之间的关系，并使用了不同的数据收集和分析方法，这导致了综述结果的异质性。未来的研究需要探索社会态度和信仰对智障人士自主性的影响，以及以人为本的方法在促进自主方面的有效性。
{"title":"Perceptions of People With Intellectual Disabilities on Autonomy and Decision-Making in Daily Life: A Systematic Review and Synthesis of Qualitative Studies","authors":"James Sheerin, Fionnuala Larkin, Samantha Dockray","doi":"10.1111/jir.70035","DOIUrl":"10.1111/jir.70035","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This qualitative systematic review aimed to synthesise research on the experiences of people with an intellectual disability on autonomy and decision-making in their everyday lives.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A systematic review was completed of studies published between 2012 and 2024 that included qualitative data exploring perceptions of people with an intellectual disability aged 18 and over on autonomy and decision-making in their lives, excluding quantitative studies and those only including carers. Searches (conducted April–August 2022, updated June 2024) were based on terms linked to intellectual disability, autonomy and decision-making. Databases included PsycINFO, PsycARTICLES, PubMed, Social Sciences Full Text, SocINDEX, CINAHL, MEDLINE and Scopus. The review protocol was registered on Prospero ID: CRD42022333120.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A total of 15 studies, including 246 people with an intellectual disability, met the inclusion criteria. Quality was assessed using the Critical Appraisal Skills Programme criteria. Thematic synthesis generated four primary analytical themes: ‘We know what's best for you’, ‘The loudest voice gets heard’, ‘The meaning of autonomy’ and ‘Conflicting views on service role’.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The findings of this synthesis suggest that people with an intellectual disability often feel that their autonomy is not prioritised and that decisions are often made for them without their input. The findings highlight the need for person-centred approaches and systemic change to support the autonomy of people with an intellectual disability. Included studies often neglected to consider the researcher–participant relationship and used varied data collection and analytic methods, which produced heterogeneity in the review findings. Future research is needed to explore the impact of societal attitudes and beliefs on the autonomy of people with an intellectual disability, as well as the effectiveness of person-centred approaches in promoting autonomy.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 3","pages":"225-241"},"PeriodicalIF":2.0,"publicationDate":"2025-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12872376/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145040357","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}
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