Assessing the effectiveness of menstrual health education in Japan: A non-randomized comparative study of adolescent girls with typical development and those with intellectual disabilities and high support needs.

This study elucidates the effectiveness of a menstrual education program with segmented MHM procedure on the MHM skills of girls with intellectual disabilities/HSN compared with those with typical development. Participants in a nonrandomized comparative study included nine adolescent girls with intellectual disabilities/HSN and ten with typical development. They practiced MHM on dolls three times: before, immediately after, and three months after participating in the educational program. Although the total MHM scores were significantly higher after both groups attended the program, the girls with intellectual disabilities/HSN had significantly lower total and mean scores on MHM items than girls with typical development. They still required instruction on the majority of the items after 3 months. Meanwhile, girls with intellectual disabilities/HSN showed a significant improvement in napkin changing skills and maintained post-course scores 3 months later, similar to those with typical development.

Autism and psychopathology - prevalence, identification, and symptoms equivalence: study protocol.

Objective: Despite increasing evidence of high psychopathological vulnerability in people with Autism Spectrum Disorder (ASD) and/or Intellectual disability (ID), comprehensive data on prevalence and presentation of psychiatric disorders (PD) in people with significant cognitive and communication impairment are lacking. The extent to which PD can present with behavioral/observable symptoms and include Problem Behaviors (PB) has also been scarcely evaluated through population-based studies. The paper presents the protocol of a cross-sectional study aimed at filling these gaps, referred to a large multicentric Italian population-based sample of adolescents and adults. Methods: A battery of validated scales, SPAIDD, DASH-II, DiBAS-R, and STA-DI, is used to support and control for clinical diagnoses of PD. Study population is stratified according to different independent variables such as the severity of ID and ASD, gender, age group, and source of recruitment. A network analysis will be carried out to identify the most central behavioral symptoms for the various PD and their relationship with PB. Overlap between psychiatric symptoms and ASD and ID phenotypes is also addressed. Results and Conclusion: This study should provide valuable insight into better diagnostic accuracy, leading to well-informed interventions to improve the quality of life of people with ASD and/or ID.

How differentiated can a new tablet-based reading screening measure the reading proficiency of students with intellectual disabilities? Comparing the impact of disability, disability type and grade level on reading skills.

All people have the right to learn reading. Understanding the factors influencing reading proficiency among students with intellectual disabilities is important for developing effective instructions. To accurately assess reading, suitable assessments that can effectively differentiate between low performance levels are necessary. We analyse results of 400 students (43 students with intellectual disabilities) in a digital reading screening and investigate the influence of disability severity, grade level and special educational needs status on the reading abilities of students with intellectual disabilities. The results indicate that the screening is suitable for assessing students with intellectual disabilities. A newly developed digital screening test for flash reading measures reliably. All presumed factors significantly impact the reading proficiency. However, substantial overlap exists between students with intellectual disabilities and those with other special needs. The necessity for structured reading interventions, irrespective of the disability label, and the importance of appropriate assessments for all students are discussed.

Effects of visual and auditory cognitive tasks on postural balance in adolescents with intellectual Disability: A comparative analysis of trained versus Non-trained individuals.

This study aimed to investigate the influence of visual and auditory cognitive tasks on postural balance in adolescents with intellectual disabilities (ID). Participants included two groups: a trained group (n = 11) with experience in athletic activities and a sedentary group (n = 14). The experiment used a comparative cross-sectional design, with data collection involving single-task (ST) and Visual dual-task (VDT), and auditory dual-task (ADT) conditions in both firm and foam surface conditions. Cognitive tests included the Working Memory Test (WMT) and the Selective Attention Test (SAT). Results revealed that the trained group demonstrated significantly superior balance performance (p < 0.05). During the SAT, VDT conditions had lower center of pressure (CoP) values than ADT conditions in the sedentary group (p < 0.01), this result was observed in the training group only in the WMT, suggesting greater postural instability during ADT. These findings highlight the complex interplay between cognitive function and motor control in adolescents with ID, highlighting the potential benefits of regular physical activity interventions to improve postural balance abilities in this population.

Learning for life, friendships and relationships from the perspective of children and young people with intellectual disabilities: findings from a UK wide qualitative study.

BACKGROUND: Relationships and sexuality education (RSE) programmes are widely taught in schools, however for children and young people with intellectual disabilities, these programmes appear to be limited regarding information on relationships, informed choices and decision making. The purpose of this study was to seek the views and understanding of children and young people with intellectual disabilities, and those involved in their care and education, to identify best practice and approaches to the delivery on relationships and sexuality education. METHODS: This study used a qualitative design with 37 pupils from five special schools from across the United Kingdom (UK) participating. In-depth semi-structured interviews were held online, or in person. All interviews were recorded and transcribed verbatim. Transcripts were anonymised, assigned a pseudonym and subjected to inductive thematic analysis. FINDINGS: Four themes emerged from the data: (i) enthusiasm and inquisitiveness to acquire knowledge; (ii) dynamics of positive friendships; (iii) experiences and understanding of supportive relationships and sexuality; and (iv) valuing the exchange of knowledge and information. The findings highlight that children and young people with intellectual disabilities want education, support and information on matters relating to their relationships and sexuality. CONCLUSIONS: This is the largest study to date providing a voice to children and young people with intellectual disabilities regarding their relationships and sexuality. While special schools provide relationships and sexuality education, there is a requirement for a programme and resources specific to the needs of pupils with intellectual disabilities to be developed and evaluated. Such education should continue beyond school and be embedded in adult services.

Children and adolescents with severe motor and intellectual disabilities who underwent kidney transplantation.

BACKGROUND: Kidney transplantation (KT) in children and adolescents with severe motor and intellectual disabilities (SMID) has been a topic of controversy. A multicenter study in Japan showed that KT was not contraindicated for children with multiple handicaps, but no consensus has been reached on KT for patients with SMID. This study aimed to determine whether KT is a viable treatment option for children and adolescents with SMID. METHODS: A single-center, retrospective study was conducted on children and adolescents with SMID who underwent KT. SMID was defined based on Oshima's classification. Clinical information was collected through a review of medical records. RESULTS: Of 453 children and adolescents who underwent KT between 1983 and 2023 in our institution, six (1.3%) patients with SMID were identified. One patient received KT twice. All patients underwent living KT. Five patients used medical devices, including gastrostomy and a ventriculoperitoneal shunt, prior to KT. Perioperative complications, including hemothorax related to central venous catheter insertion, ventilator-associated pneumonia, and common iliac artery thrombosis requiring graftectomy, occurred in three patients. One patient required vesicostomy owing to refractory urinary tract infection. There was no significant difference in the graft survival rate between patients with SMID and those without SMID. One patient developed graft failure and died after selecting conservative kidney management. CONCLUSION: Our study showed a favorable graft survival in children and adolescents with SMID who underwent KT. Although careful perioperative management and continued medical care are required, KT may be a viable option for these patients.

Item-validity analysis of the SED-S in a multicentre study of adults with intellectual disabilities.

BACKGROUND: Valid and reliable instruments for measuring emotional development are critical for a proper diagnostic assignment in individuals with intellectual disabilities. This exploratory study examined the psychometric properties of the items on the Scale of Emotional Development-Short (SED-S). METHOD: The sample included 612 adults with intellectual disabilities (Mage = 37.35, SDage = 13.27; 59.8% males). Item validity analysis comprising sensitivity and specificity rates and discriminatory power were determined. RESULTS: The relative mean frequency of 'yes' answers to all 200 items was 29.5%. The mean sensitivity rate was 67.5% and the mean specificity rate was 79.3%. Most items (85.0%) showed good discriminatory power with the adjacent stage(s), especially between SED-1, SED-2, SED-3 and SED-4. Particularly in SED-4 some items showed weaknesses in the differentiation between these stages. DISCUSSION: This study adds to previous validation studies by showing that most SED-S items have psychometrically sound properties.

Feasibility and Tolerability of Daily Theta Burst Stimulation in Autistic Youth with Intellectual Disabilities and Minimally Speaking Status: A Pilot Double-Blind Randomized Sham-Controlled Trial.

Scarce clinical trials involving autistic people with intellectual disability (ID) and minimally speaking (MS) status have been a substantial unmet research need in the field. Although earlier studies have demonstrated the feasibility and beneficial potentials of repetitive transcranial magnetic stimulation (rTMS) over the dorsolateral prefrontal cortex (DLPFC) in intellectually able autistic people, the feasibility and tolerability of applying rTMS in autistic people with ID/MS has never been studied. We conducted the world-first 4-week randomized, double-blind, sham-controlled pilot trial to investigate the feasibility, tolerability, and safety of intermittent theta burst stimulation (iTBS, a variant of excitatory rTMS) over the left DLPFC in autistic youth with ID/MS. 25 autistic youth with ID/MS (aged 8-30 years) were randomized to a 20-session 4-week daily iTBS (n = 13) vs. sham stimulation (n = 12) with follow-up 4 and 8 weeks, respectively, after the last stimulation. A retention rate was 100% in our study. Adverse events of local pain (38%) and dizziness (8%) were only noted in the active group. All adverse events were mild and transient. There were no seizures, new behavioral problems, or other severe/serious adverse events noted. No participants dropped out due to adverse events. With a small sample size, we did not find any beneficial signal of DLPFC iTBS. Our pilot data suggest regular daily TBS treatment for four weeks is feasible, well tolerated and safe in autistic youth with ID/MS. Future randomized controlled trials with sufficiently powered samples are needed to investigate the beneficial potential of rTMS/TBS for autistic people with ID/MS.

Attitudes of support people: a key element when implementing technologies for people with intellectual and visual disabilities.

AIM: The degree to which people with intellectual and visual disabilities can use technology relies on the level of support they receive. However, there is a lack of knowledge about the relationship between the constructs effort expectancy, attitudes, and behavioural intentions of support people (i.e. relatives and healthcare professionals) regarding the use of such technologies for people with intellectual and visual disabilities. The aim of this study was to gain insight into how these constructs are connected and to explore their relationship with support person's characteristics and the support need levels of people with intellectual and visual disabilities. METHODS: In total, 186 support people from a Dutch healthcare organisation focusing on people with intellectual and visual disabilities participated in an online questionnaire. We used a regression analysis to explore how the constructs, the characteristics, and the level of support needs were related. RESULTS: Both effort expectancy (ß = .35; t(185) = 5.04; p < .001) and attitude (ß = .75; t(185) = 15.55; p < .001) of support people were related to the intention to use technologies. The effect of effort expectancy (ß = .04; t(177) = .74; p = .462) on the intention to use technologies was mediated through attitude (ß = .74; t(177) = 13.28; p < .001). Younger support people scored higher on attitude than older support people. CONCLUSIONS: Support people's effort expectancy and attitude play a significant role in their intention to use technologies when supporting people with intellectual and visual disabilities, with attitude emerging as pivotal factor.

A better understanding of the relationship between effort expectancy, attitude, and the intention to use technologies in support people may facilitate the implementation of technologies.The intentions of support people to use technologies is not related to the level of support needs of people with intellectual and visual disabilities.Younger support people have a more positive attitude towards technology for people with support needs compared to older support people.A positive attitude has a strong and positive relationship to a higher behavioural intention. Therefore, when implementing technologies, healthcare organisations should pay special attention to the attitude of support people towards the use of technologies for people with support needs.

Stressful life events, post-traumatic stress disorder symptoms and mental health in individuals with intellectual disabilities: a scoping review.

BACKGROUND: Stressful life events are events that do not fulfil the A criterion of PTSD in the DSM-5(TR) but are perceived as negative by the person. There is an ongoing debate about the usefulness of the A criterion as a gate criterion for PTSD, and especially regarding which events qualify as traumatic or stressful life events. This debate is particularly important for individuals with intellectual disabilities (ID) or borderline intellectual functioning (BIF), as they seem to be more likely to experience traumatic and stressful life events than their peers without ID-BIF and appear to be more susceptible to the disruptive effects of these events. As a result, people with ID-BIF are more likely to develop mental health and behavioural problems. There is insufficient knowledge about how the relationship between stressful life events and PTSD symptoms should be interpreted, how traumatic and stressful life events are defined and distinguished in people with ID, and whether the A criterion should be broadened for individuals with ID-BIF. The aim of this scoping review was to understand stressful life events and their relationship with PTSD symptoms, other mental health and/or behavioural problems in individuals with ID-BIF. METHODS: The scoping review was conducted in accordance with the JBI methodology for scoping reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR). RESULTS: Thirty-eight studies were included. Five studies focused on stressful life events and PTSD symptoms. The other studies examined associations between stressful life events and other mental health and/or behavioural problems. Most of the studies did not clearly differentiate between stressful and traumatic events according to the A criterion of PTSD in the DSM-IV (TR) or DSM-5(TR). Of the six studies in which stressful life events were specified and could be distinguished from traumatic events, one found a positive association between PTSD symptoms and stressful life events and five showed weak to strong positive associations with other mental health and/or behavioural problems. CONCLUSIONS: PTSD symptoms following stressful life events in individuals with ID-BIF are underrepresented in the literature. The lack of a clear definition of stressful life events leads to a gap in the knowledge on whether and how stressful life events may lead to PTSD symptoms, other mental health and/or behavioural problems in individuals with ID-BIF. Therefore, no general conclusions or recommendations can be made regarding the appropriateness of the PTSD A criterion for individuals with ID-BIF. Further research is needed to establish the role of stressful life events in relation to PTSD symptoms and to inform the assessment and effective treatment in people with ID-BIF, as expert clinical experience studies suggest that broadening the PTSD A criterion should be considered for people with ID-BIF.

The Efficacy of a Ketogenic Diet in a Case With Febrile Infection-Related Epilepsy Syndrome in the Chronic Phase: A Case Report.

Although the treatment strategy for febrile infection-related epilepsy syndrome (FIRES) is improving, current research focuses on acute management. Evidence for the management of the chronic phase is limited. We present the case of a 19-year-old woman with FIRES who showed excellent response to a ketogenic diet (KD) administered in the chronic phase. At the age of four years, she presented with new-onset super-refractory status epilepticus after a febrile episode. She was diagnosed with FIRES and had profound motor and cognitive deterioration and drug-resistant epilepsy. From the age of 17, she experienced numerous seizures that often led to status epilepticus with respiratory failure, necessitating laryngotracheal separation and nocturnal mechanical ventilation. To improve seizure control, we planned a KD for the first time 15 years after the onset of FIRES. We introduced a classic KD (ketogenic ratio, 3:1) using blended meals through gastrotomy. Two months after starting the KD, she experienced a decrease in seizure frequency and duration. Moreover, as unexpected stabilization of respiration was achieved, mechanical ventilation was stopped. Our case implies that KD may be a promising treatment option for patients with FIRES in the chronic phase, as is believed to be the case in the acute phase.

Easy read health information for people with intellectual disabilities: A linguistic discourse analysis. What happens to language when it is simplified?

INTRODUCTION: Easy Read health documents prepared for people with intellectual disabilities are often generated from Standard Texts. Language in Easy Read versions is typically assumed to be simpler. However, simplification of language may have unintended consequences. This study aimed to explore the differences in language used between Easy Read health material and the Standard Text versions of the same material produced for the general population. METHODS: Five Easy Read/Standard Text pairs were sampled and analysed using Systemic Functional Linguistics. This addressed: how people with intellectual disabilities and others were represented by language, the author stance in relation to the reader and the overall organisation of the text. RESULTS: The Easy Read versions often used language that was less empowering and inclusive. CONCLUSION: Increased awareness of author power and better knowledge of the impact of language choice could help to redress these issues.

Understanding how organizational culture shapes the experiences of direct support professionals: A qualitative meta-synthesis from an organizational justice perspective.

Direct support professionals (DSPs) are critical to the quality of life of people with intellectual and developmental disabilities, yet high turnover rates significantly affect the quality and consistency of their services. A qualitative meta-synthesis could help understand how organizational culture shapes the experiences of DSPs. A systematic search found six articles that met all inclusion criteria. The initial findings show that although DSPs perceived their work as worthy and rewarding, they did not feel valued or supported by management either monetarily or professionally. The analysis revealed an overarching theme with elements congruent with the organizational justice literature. Findings suggest that cultivating a culture of justice and fairness is vital to retaining quality DSPs, promoting organizational outcomes, and improving the quality of life of people with intellectual and developmental disabilities.

Image perception and reception in wordless picture books: Eye movements of children with intellectual disabilities.

Wordless picture books enhance comprehension and vocabulary growth and motivate children with intellectual disabilities (ID) to participate in literary activities. However, the reception of picture books can be challenging because deliberate selective attention processes and recognition of the image's meaning are often delayed. Examining eye movements may help explore these cognitive processes. Therefore, we examined eye movements in 29 children with mild and moderate ID as they explored a wordless picture book, presented on a screen and compared them to 14 typically developing children using a Tobii Pro X3-120 eye tracker. The findings showed that children with moderate ID had shorter fixation duration, fixated less often, and revisited regions of interest less frequently. Our results suggest that children with moderate ID have greater difficulties in selectively directing their attention toward regions of visual input with a high level of informativeness and expend less cognitive effort to understand their meaning.

Understanding capabilities, opportunities and motivations to engage in physical activity for adults with intellectual disabilities: A qualitative evidence synthesis.

BACKGROUND: There is a paucity of theory-informed physical activity research with adults with intellectual disabilities. This study aimed to address this by synthesising existing literature and applying the COM-B model to understand capabilities, opportunities and motivations. METHODS: A qualitative evidence synthesis was conducted and reported in accordance with PRISMA guidelines and the ENTREQ. Three databases were systematically searched up to and including February 2022. Qualitative research relating to the physical activity of adults with intellectual disabilities were included. Thematic synthesis was conducted with themes mapped onto the COM-B model. RESULTS: Twenty-five studies were included. Influences of physical activity were identified and mapped onto the COM-B model, which also included COM-B influences of social support provided by caregivers. CONCLUSIONS: There are many complex influences of physical activity for adults with intellectual disabilities. Researchers should consider the influences contributing to caregivers' capacity to support physical activity.

Ecobehavioural analysis of academic engagement of children with intellectual disabilities in Chinese mainstream schools.

This study examined teacher behaviours, students' academic engagement, and classroom ecology in mainstream classrooms including children with intellectual disabilities, and examined the differences in academic engagement for students with and without intellectual disabilities. A mixed-method research methodology was employed. The study demonstrated that children with intellectual disabilities exhibited high level of engagement in the following situations: the classroom layout used grouping, the classroom organisation combined groups and independent learning, the learning tasks included reading aloud, copying, watching videos, and doing homework, and teachers paid attention to all students or to children with intellectual disabilities individually and walked around the classroom during lesson time. English was the discipline with most active engagement among children with intellectual disabilities, followed by music, art, science, Chinese, sports, social studies, and mathematics. Finally, academic engagement of children with and without intellectual disabilities was mostly passive. We discuss the factors related to academic engagement of children with intellectual disabilities and provide suggestions for improving their self-management skills and classroom organisation.

Much more than just being present: participation of children with intellectual disabilities in mainstream schools.

Although school engagement is crucial to child development, research on children with intellectual disabilities in mainstream schools is scant. This sequential, explanatory mixed-methods study examined the ways in and extent to which children with intellectual disabilities participate in mainstream school activities, as well the personal and environmental factors that affect their participation. A total of 101 general teachers provided quantitative data, while eight children with intellectual impairments and their teachers and peers provided qualitative data. In the quantitative survey, no significant differences were observed between children with and those without intellectual disabilities regarding school absence, but a low similarity existed in their extent of participation. Children with intellectual disabilities engaged most frequently in life-skills and after-school activities and least frequently in social and volunteer activities. School participation was affected by the degree of disability and environmental variables. We derived two themes from qualitative research: (1) school participation of children with intellectual disabilities; and (2) factors associated with school participation of children with intellectual disabilities. The results suggest strategies that may promote the participation of children with intellectual disabilities in mainstream schools.

Exploring the experience of working relationships for support workers of adults with intellectual disabilities.

BACKGROUND: Research suggests that a better awareness of how staff who directly support people with intellectual disabilities experience their working relationships, will contribute to understanding staff wellbeing and the quality of care they offer. This study aimed to gain insights into the lived experiences of support workers in supported living services in England. METHOD: Six support workers participated in semi-structured interviews, about their working relationships with service-users and colleagues. Data was analysed using interpretative phenomenological analysis. RESULTS: Six interconnected themes emerged: The essence of good relationships; a trusting relationship as the vehicle for meeting service-users' needs; belonging to the support team; the organisational context of relationships; the social context of relationships; 'a fine balancing act'. CONCLUSIONS: The findings provide insights into staff wellbeing, indicating that developing supportive, trusting relationships with both service-users and colleagues, plays an important role in delivering effective care. Potential implications for service providers are discussed.

A Genotype/Phenotype Study of KDM5B-Associated Disorders Suggests a Pathogenic Effect of Dominantly Inherited Missense Variants.

Bi-allelic disruptive variants (nonsense, frameshift, and splicing variants) in KDM5B have been identified as causative for autosomal recessive intellectual developmental disorder type 65. In contrast, dominant variants, usually disruptive as well, have been more difficult to implicate in a specific phenotype, since some of them have been found in unaffected controls or relatives. Here, we describe individuals with likely pathogenic variants in KDM5B, including eight individuals with dominant missense variants. This study is a retrospective case series of 21 individuals with variants in KDM5B. We performed deep phenotyping and collected the clinical information and molecular data of these individuals' family members. We compared the phenotypes according to variant type and to those previously described in the literature. The most common features were developmental delay, impaired intellectual development, behavioral problems, autistic behaviors, sleep disorders, facial dysmorphism, and overgrowth. DD, ASD behaviors, and sleep disorders were more common in individuals with dominant disruptive KDM5B variants, while individuals with dominant missense variants presented more frequently with renal and skin anomalies. This study extends our understanding of the KDM5B-related neurodevelopmental disorder and suggests the pathogenicity of certain dominant KDM5B missense variants.

Challenging behaviour, the application of restrictive measures and psychotropic drug prescription in people with intellectual disabilities.

BACKGROUND: Prescribing of psychotropic drugs (PDs) and applying restrictive measures are both frequently used in managing challenging behaviour of people with intellectual disabilities (ID), which is not always according to guidelines or good clinical practice. AIMS: This study aimed to investigate the potential triangular relationship between challenging behaviour, the application of restrictive measures and PD prescription. METHODS AND PROCEDURES: In this cross-sectional study, data on challenging behaviour, PD prescription and restrictive measures were collected. We defined and compared four mutually exclusive groups of participants. OUTCOMES AND RESULTS: Challenging behaviour in the group in whom one or more PD were prescribed as a restrictive measures (PDRM) was more severe than in the other three groups. More severe challenging behaviour, a higher number of antipsychotics, antidepressants and anxiolytics/hypnotics prescriptions, a lower dosage, and more application of domotics as restrictive measure was shown in the PDRM compared to the group in whom PDs were prescribed according to guidelines (PDNRM). CONCLUSIONS AND IMPLICATIONS: We did not find indications for a triangular relationship of challenging behaviour, the application of restrictive measures and PD prescriptions. Future longitudinal research is needed to better understand this complex relationship and should investigate the indication and the effect of treatment. WHAT THIS PAPER ADDS?: This study is a first exploration of the potential triangular relationship between symptoms of challenging behaviour, psychotropic drug (PD) prescription, and the application of restrictive measures. Prescribing PDs and applying restrictive measures are two interventions which are commonly used to manage challenging behaviour in people with intellectual disabilities. Both have been subject of research separately in recent years. However, it is conceivable that the PD prescription in treatments for challenging behaviour could be a substitute for another form of a restrictive measure, for example a physical or mechanical restraint. For this purpose, we defined and compared four mutually exclusive groups of participants. We found no indication for this triangular relationship. On the other hand, we found the highest severity of challenging behaviour in the group who used PDs as restrictive measure next to other restrictive measures. Our results may suggest that both prescribing PDs and applying non-pharmacological restrictive measures are used simultaneously in managing challenging behaviour, are not sufficiently implemented or effective.