Autistic pupils' experiences in primary and post-primary schools: A scoping review and consultation with autistic pupils in Ireland.

Background and aims: Autistic pupils have the right to be heard in matters concerning their education and to be active agents in shaping their school experiences. Despite this, educational policies and research have rarely included the voices of autistic children, failing to identify what they consider to be beneficial and meaningful in their own education. This study aimed to (i) summarise existing literature exploring autistic pupils' experiences at school from their own perspectives and (ii) identify gaps for future research through a consultation with autistic pupils. Methods: A scoping review was conducted to identify studies exploring first-person accounts of autistic pupils' school experiences (primary and secondary; aged 4-18 years) published between 2005 and 2023. Thematic analysis was conducted to identify overarching thematic categories across the included studies. Review findings were discussed through a consultation with a Child and Youth Advisory Group (CYAG) comprised of autistic pupils in Ireland (N = 3), to seek feedback and inform a future research agenda. Main contribution: Thirty-six studies were included in the review and six themes were identified: Experiences of feeling misunderstood, of bullying and masking, of feeling excluded, of anxiety, of sensory needs in school, and of being overwhelmed during transitions. Consultation with the CYAG highlighted that these six themes were consistent with autistic pupils' experiences but that reports of positive experiences were missing in the literature. Conclusions: This study identified several gaps in the literature on the school experiences of autistic pupils, based on both the scoping review and consultation with the CYAG. While the CYAG validated the themes identified in existing literature, there is a need for greater diversity in the samples included and increased focus on the potential positive aspects of the school experience. Implications. These findings have important research implications. In particular, further studies are needed with autistic pupils at primary school level, including those who are minimally or non-speaking, as well as ensuring pupils with positive school experiences are also represented. Findings also highlight the need for continued collaboration with autistic pupils themselves in matters concerning their education.

Inflammatory Bowel Disease Disability Index is a valid and reliable measure of disability in an English-speaking hospital practice and predicts long-term requirement for treatment escalation.

Objective: The Inflammatory Bowel Disease Disability Index (IBD-DI) was developed according to WHO standards and has been validated in population-based cohorts. However, there are limited data on its relationship to various psychosocial and economic variables or its relevance to hospital clinical practice. The study aims were to determine the validity and reliability of the IBD-DI in an English-speaking hospital out-patient population and to evaluate its association with short and long-term disease activity. Design/Methods: 329 subjects were enrolled in a cross-sectional and longitudinal study assessing the IBD-DI and a range of quality of life, work impairment, depression, anxiety, body image, interpersonal, self-esteem, disease activity, symptom scoring scales in addition to long-term outcome. Results: The IBD-DI had adequate structure, was internally consistent and demonstrated convergent and predictive validity and was reliable in test-retest study. Disability was related to female sex (p=0.002), antidepressant use (p<0.001), steroid use (p<0.001) and disease activity (p<0.001). Higher IBD-DI scores were associated with long-term disease activity and need for treatment escalation in univariate (p<0.001) and multivariate (p=0.002) analyses. Conclusion: The IBD-DI is a valid and reliable measure of disability in English-speaking hospital populations and predicts long-term requirement for treatment escalation.

Parent-Report Sleep Disturbances and Everyday Executive Functioning Difficulties in Children with Tourette Syndrome.

There is an increasing need to identify and treat sleep disturbances in Tourette syndrome (TS), a neurodevelopmental condition characterized by tics. This study explored sleep, tics, and executive functioning in children with TS (n=136) and neurotypical controls (n=101) through parent-report scales and open-ended questions. 85% of children with TS scored in the clinical range for a sleep disorder. Higher tic severity predicted increased sleep disturbances and executive difficulties. Qualitative insights indicated a bidirectional link between sleep and tics, which warrants consideration in clinical settings. Further research is needed to explore causal links.

Sleep and daytime functioning in children with tourette syndrome: A two-week case-control study with actigraphy and cognitive assessments.

There is increasing recognition of the high prevalence of sleep issues in children with Tourette syndrome (TS), a condition characterised by motor and vocal tics. Overnight polysomnography (PSG) has been the primary mode of sleep assessment in the TS literature, despite the extensive use of actigraphy in other neurodevelopmental populations. As a result, there are existing research gaps surrounding day-to-day variability of sleep in TS and links to daytime functioning. This study adopts a naturalistic, intensive longitudinal design to examine sleep in children with TS while considering potential links to tic severity and daytime functioning. Participants were 34 children aged between 8 and 12 years (12 with TS, 22 neurotypical controls). Wrist actigraphs tracked sleep-wake cycles across two weeks and a battery of scales and cognitive assessments measured sleep disturbances and daytime functioning. Mixed models using N = 476 nights of actigraphy data found that relative to controls, children with TS had significantly increased time in bed, increased sleep onset latency, reduced sleep efficiency, lower subjective sleep quality, but comparable actual sleep time. Higher self-report tic severity at bedtime did not predict increased sleep onset latency. In the sleep disturbance scale, 83.33 % of children with TS met the clinical cut-off for a sleep disorder. Parent-report emotional, behavioural, and executive difficulties were greater in the TS group relative to controls, but performance on cognitive tasks was comparable between groups. Together, findings highlight sleep disturbances as an important clinical factor to consider in the management of TS, though further research is required to substantiate findings in larger-scale studies. This study demonstrates the feasibility of assessing sleep via actigraphy in children with TS, supporting more widespread use in the future.

The impact of the COVID-19 pandemic on sleep in children with Tourette syndrome in Ireland and the United Kingdom.

STUDY OBJECTIVES: The aim of this mixed-methods study was to gain an insight through qualitative and quantitative means into the impact of the coronavirus disease 2019 (COVID-19) pandemic on children with and without Tourette syndrome (TS). METHODS: Parents/guardians of children and adolescents with TS (n = 95; mean age = 11.2 years, standard deviation = 2.68 years) and typically developing controls (n = 86; mean age = 10.7 years, standard deviation = 2.8 years) in the United Kingdom and Ireland completed an online questionnaire examining sleep, with open-ended questions pertaining to their perceived impact of COVID-19 on the sleep of their children. Nine items from the Sleep Disturbance Scale for Children were used to supplement qualitative data. RESULTS: A negative impact of the pandemic on the sleep of both groups was observed, including exacerbated tics, sleep deprivation, and anxiety, with particular disruption for children with TS. Parents of children with TS reported poorer sleep patterns than parents of typically developing children on the Sleep Disturbance Scale for Children. Analyses showed that group and age predicted 43.8% of variance in sleep duration: F (4, 176) = 34.2, P < .001. CONCLUSIONS: Findings suggest that sleep patterns of children with TS may be more impacted by the pandemic than the average child. Given that there are generally more sleep issues reported in children with TS, further research is warranted in relation to the sleep health of children with TS in a postpandemic era. By identifying sleep issues potentially persisting after COVID-19, the true impact of the pandemic on the sleep of children and adolescents with Tourette syndrome may be ascertained. CITATION: Colreavy E, Keenan L, Downes M. The impact of the COVID-19 pandemic on sleep in children with Tourette syndrome in Ireland and the United Kingdom. J Clin Sleep Med. 2023;19(8):1485-1493.

Links between Daytime Napping, Night-Time Sleep Quality and Infant Attention: An Eye-Tracking, Actigraphy and Parent-Report Study.

The current study explored the potential influence of infant sleep, measured by parental report and actigraphy, and family functioning on attention development using eye tracking. The use of actigraphy in parallel with parental report, has the advantage of measuring participant's sleep throughout the night without parental observation and the ability to objectively assess sleep quality. An eye-tracking version of the Gap-Overlap task was used to measure visual attention. Questionnaires and behavioural assessment were used to assess family function, and general cognitive development. Fifty infants (Mean age = 13.44 months, SD = 3.10) participated in the study, 23 of which had full final datasets. Results show that daytime sleep duration, as measured by parental report, and proportion of light sleep at night, as measured by actigraphy, are linked to visual attention. A higher proportion of light sleep, a marker of poorer sleep quality, and less daytime sleep were negatively linked with facilitation and disengagement on the Gap-Overlap task. Family functioning was not associated with attention. The results provide initial evidence that in addition to the amount of daytime sleep; quality of night-time sleep as measured by proportion of light sleep, is a potentially useful sleep variable which requires further focus in the study of attention development.

Academic attainment following pediatric epilepsy surgery: A systematic review.

Academic skills, such as reading, spelling and arithmetic, are central to meaningful engagement with society throughout adolescence and into adulthood. The disruption caused by on-going seizure activity places children with drug-resistant epilepsy at a particularly high risk of poor academic attainment. Though epilepsy surgery during childhood has long-been associated with various cognitive changes, less is known of the extent to which pediatric epilepsy surgery impacts academic attainment. The aim of the present systematic review was to identify the nature of the effect of pediatric epilepsy surgery on the core academic skills of reading, writing, and arithmetic. The electronic databases Embase, Medline, PubMed, PsychInfo, OpenAire, and the ISRCTN registry were searched for studies examining academic attainment following epilepsy surgery in childhood, over the last three decades. Two thousand three-hundred and sixty-eight articles were screened for relevance. Thirteen studies met the inclusion criteria. Study quality and reliability were independently assessed by two reviewers. Results indicate that academic attainment primarily stabilizes in the first year following epilepsy surgery. Though changes to learning ability would not be expected in this early recovery phase, this review indicates that children do not, at least, lose the academic skills they have acquired before surgery. Postoperative declines in performance were most notably recorded in assessments of arithmetic, suggesting an area of potential vulnerability in this cohort. These declines were noted in cohorts with the longest periods between seizure onset and surgery. While older age at onset and seizure freedom correlated with improved academic attainment, further research is necessary to fully understand the specific effect of epilepsy surgery on academic attainment. Still, the present review provides valuable information regarding the likely academic outcomes in the early years following surgical treatment for drug-resistant epilepsy.

Overlapping sleep disturbances in persistent tic disorders and attention-deficit hyperactivity disorder: A systematic review and meta-analysis of polysomnographic findings.

INTRODUCTION: Persistent tic disorders (PTDs) and attention-deficit hyperactivity disorder (ADHD) are common neurodevelopmental conditions which tend to co-occur. Both diagnoses are associated with sleep problems. This systematic review and meta-analysis investigates overlaps and distinctions in objective sleep parameters based on diagnosis (PTD-only, PTD + ADHD, and ADHD-only). METHODS: Databases were searched to identify studies with objective sleep measures in each population. Meta-analyses were conducted using a random effects model. RESULTS: Polysomnography was the only measure included in all three groups. Twenty studies met final inclusion criteria, combining PTD-only (N = 108), PTD + ADHD (N = 79), and ADHD-only (N = 316). Compared to controls (N = 336), PTD-only and PTD + ADHD groups had significantly lower sleep efficiency and higher sleep onset latency. PTD + ADHD also had significantly increased time in bed and total sleep time. No significant differences were observed between ADHD-only groups and controls. DISCUSSION: Different sleep profiles appear to characterise each population. PTD + ADHD was associated with more pronounced differences. Further research is required to elucidate disorder-specific sleep problems, ensuring appropriate identification and monitoring of sleep in clinical settings.

NavWell: A simplified virtual-reality platform for spatial navigation and memory experiments.

Being able to navigate, recall important locations, and find the way home are critical skills, essential for survival for both humans and animals. These skills can be examined in the laboratory using the Morris water maze, often considered the gold standard test of animal navigation. In this task, animals are required to locate and recall the location of an escape platform hidden in a pool filled with water. Because animals can not see the platform directly, they must use various landmarks in the environment to escape. With recent advances in technology and virtual reality (VR), many tasks originally used in the animal literature can now be translated for human studies. The virtual water maze task is no exception. However, a number of issues are associated with these mazes, including cost, lack of flexibility, and lack of standardization in terms of experimental designs and procedures. Here we present a virtual water maze system (NavWell) that is readily downloadable and free to use. The system allows for the easy design of experiments and the testing of participants on a desktop computer or fully immersive VR environment. The data from four independent experiments are presented in order to validate the software. From these experiments, a set of procedures for use with a number of well-known memory tests is suggested. This potentially can help with the standardization of navigational research and with navigational testing in the clinic or in an educational environment. Finally, we discuss the limitations of the software and plans for its development and future use.

Family environments of women seeking BRCA1/BRCA2 genetic mutation testing: an exploratory analysis.

Although there is some understanding of the shared characteristics and predictors of psychological distress of women participating in hereditary breast and ovarian cancer registries, these same characteristics are only beginning to be identified in research on community women seeking genetic testing for BRCA1/BRCA2 gene mutations. This study provides an initial exploration of characteristics associated with family environments for 51 community women waiting to receive such genetic testing results. Thirty-four of the 36 women classified on family environment type of the Family Environment Scale (FES) were from Personal Growth-Oriented families. Comparisons of women with and without personal cancer histories resulted in a trend for women with personal cancer histories to be classified as from Independence-Oriented families. Reported distress appears to vary for different family emphases based on family and personal cancer history. A moral-religious family emphasis consistently appeared to be associated with decreased psychological distress. Preliminary analyses comparing these community women (who were not part of a hereditary registry but were self- or physician-referred) seeking genetic testing with normal and distressed family means found that increased cohesion and expressiveness may be related to decreased conflict, indicative of potentially supportive family environments for these women. When compared with normative data, a subset consisting of the Ashkenazi Jewish women showed a trend of less cohesion than normal families, but similar cohesion levels as distressed families.

Extension of the behavioral model of healthcare utilization with ethnically diverse, low-income women.

OBJECTIVE: Psychosocial vulnerabilities were added to a model of healthcare utilization. This extension was tested among low-income women with ethnicity addressed as a moderator. DESIGN: Structured interviews were conducted at 2 points in time, approximately 1 year apart. The constructs of psychosocial vulnerability, demographic predisposing, barriers, and illness were measured by multiple indicators to allow use of Structural Equation Modeling to analyze results. The models were tested separately for each ethnic group. SETTING: Community office. PARTICIPANTS: African-American (N = 266), Euro-American (N = 200), and Mexican-American (N = 210) women were recruited from the Dallas Metropolitan area to participate in Project HOW: Health Outcomes of Women, a multi-year, multi-wave study. Face-to-face interviews were conducted with this sample. Participants had been in heterosexual relationships for at least 1 year, were between 20 and 49 years of age, and had incomes less than 200% of the national poverty level. MAIN OUTCOME MEASURES: Healthcare utilization, defined as physician visits and general healthcare visits. RESULTS: Illness mediated the effect of psychosocial vulnerability on healthcare utilization for African Americans and Euro-Americans. The model for Mexican Americans was the most complex. Psychosocial vulnerability on illness was partially mediated by barriers, which also directly affected utilization. CONCLUSIONS: Psychosocial vulnerabilities were significant utilization predictors for healthcare use for all low-income women in this study. The final models for the 2 minority groups, African Americans and Mexican Americans, were quite different. Hence, women of color should not be considered a homogeneous group in comparison to Euro-Americans.