Search

Objective: To determine whether use of digital-based screening is a feasible approach to monitoring child development, it is necessary to assess young children's abilities to interface with touch screen technology. The primary objectives of this exploratory feasibility study with a randomized experimental design were to determine (1) whether young children respond differently to developmental tasks on paper versus tablet device and (2) whether responses to items presented digitally differed according to hours of weekly exposure to touch screen technology in the home., Methods: Eighty children attending 18-, 24-, 36-, or 48-month pediatrician well-child checks were randomly assigned to complete a series of 70 examiner-facilitated, developmental tasks across 7 domains (receptive language, expressive language, early literacy, early numeracy, social emotional, cognition, and fine motor) presented either digitally or on paper. Parents provided information about use of technology in the home. A series of t tests assessed for main effects of presentation modality (digital vs paper) on each of the domains., Results: Raw scores across the 7 domains did not differ by presentation modality. Hours of technology use per week was not related to raw scores among children in the digital condition., Conclusion: Young children do not respond differentially to items when presented in a digital format in comparison to a paper-based format. Use of manipulatives for assessing developmental skills may be needed for children 2 years and younger, as they displayed a limited range of responses to items in both conditions at these age groups.

Background: Responding to one's own name (RtN) has been reported as atypical in children with developmental disorders, yet comparative studies on RtN across syndromes are rare., Aims: We aim to (a) overview the literature on RtN in different developmental disorders during the first 24 months of life, and (b) report comparative data on RtN across syndromes., Methods and Procedures: In Part 1, a literature search, focusing on RtN in children during the first 24 months of life with developmental disorders, identified 23 relevant studies. In Part 2, RtN was assessed utilizing retrospective video analysis for infants later diagnosed with ASD, RTT, or FXS, and typically developing peers., Outcomes and Results: Given a variety of methodologies and instruments applied to assess RtN, 21/23 studies identified RtN as atypical in infants with a developmental disorder. We observed four different developmental trajectories of RtN in ASD, RTT, PSV, and FXS from 9 to 24 months of age. Between-group differences became more distinctive with age., Conclusions and Implications: RtN may be a potential parameter of interest in a comprehensive early detection model characterising age-specific neurofunctional biomarkers associated with specific disorders, and contribute to early identification., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

This synthesis paper summarizes research literature addressing challenging behaviours in children and youth with autism spectrum disorders and developmental disabilities in school settings. We conducted a comprehensive literature review to identify relevant peer-reviewed articles published between the years 2000 and 2011. The methodological quality of all studies was screened following a standard quality assessment checklist. Intervention effects were assessed quantitatively. Results of quality analysis and intervention effectiveness were integrated to identify interventions with strong support and evidence of effectiveness. We discuss results in terms of implications for intervention choice and implementation in school settings, limitations, and directions for future re-search.

Background: Study of frailty in adults with intellectual and developmental disabilities (IDD) is relatively new. To build the body of literature, an international consensus statement on how to support adults with IDD as they become frail was developed based on fictional cases. This study examined the face validity and applicability of the consensus statement to real-world care planning. Method: Twenty-three care plans for adults with IDD who were classified along the frailty continuum were reviewed. Documented goals, actions and outcomes were coded according to the consensus statement's principles and recommendations. Results: The recommendations 'Improvement and maintenance are viable goals' and 'Intersectoral collaboration is needed' were documented the most often. Attention to the needs of formal and informal caregivers was mentioned the least often in care plans. Conclusions: This study provides some support for the face validity of the consensus statement and its applicability to supporting adults with IDD who are frail.

Background: People with intellectual and developmental disabilities are among the most underserved in an inequitable healthcare system., Methods: Using Arksey and O'Malley's methodology and a social determinants of health framework, we conducted a scoping review of literature on the state of practice in education of healthcare professionals in the health and healthcare needs of this population., Results: Searches found 4948 articles, with 182 included in the final review. Themes identified included gaps of not being informed by workforce needs, continued use of the medical model of care, not addressing intersectionality with racial/ethnic and other discriminations, and lack of involvement of the population in developing/evaluating programs and promising trends of development of competency-based interprofessional programs with experiential learning., Conclusion: We provide recommendations for best practices in a concerted effort to educate a healthcare workforce equipped with the knowledge and skills to address the health needs of this population., (© 2024 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Children develop dynamically, and when a child fails to reach age-appropriate developmental milestones compared to their peers, it is considered a developmental delay. In developing nations like Nigeria, several demographics, socioeconomic, childcare and external factors may influence the highly individualised process. This study assessed the prevalence and pattern of developmental delay, across Nigeria's geopolitical zones including identified factors associated with developmental delay, providing insight for appropriate interventions to prevent disability in affected children., Methods: This was a secondary analysis of data from the Multiple Indicator Cluster Survey (MICS), which was carried out in rounds 4 (2011) and 5 (2016/2017). Every 5 years, the UNICEF-supported MICS cross-sectional household survey is carried out using the cluster sampling method. A semi-structured, questionnaire administered by the interviewer was used to obtain individual and household-level data. This study comprised a weighted sample of 17,373 under-5 children who had complete data from both survey rounds on characteristics deemed significant for the study. Data were analysed using SPSS version 23. Using the Chi-square test and multivariate binomial logistic regression, factors linked to developmental delay were identified, with 95% confidence intervals (CIs) provided and the significance level set at 5%., Results: The mean age and sex distribution of the children surveyed in both rounds was comparable, with a male preponderance of 51.2% in round 4 and 50.4% in round 5. In both round 4 (51.2%) and round 5 (49.0%), the Northeast zone had the highest prevalence of overall developmental delay while the least prevalence was seen in the Southwest zone (20.3%) and the Southeast zone (14.7%) in round 4 and round 5, respectively. Across all the zones, delay in the literacy-numeracy domain of development was the most prevalent, with the highest (91.3% and 86.7%, respectively) in the Northeast zone during both rounds of the survey. Delay in the physical domain was, however, the least prevalent form of developmental delay across the zones, with the least in South South (20.6%) and Southeast (5.4%) in rounds 4 and 5. The odds of developmental delay were 1.5 and 1.7 times higher amongst children 4 years old than 3 years old in both rounds of the survey. The likelihood of having developmental delay was found to increase with the severity of stunting amongst the children during both rounds of the survey (odds ratio [OR] =1.5; 95% CI = 1.20-1.78 in round 4 and OR = 1.4; 95% CI = 1.16-1.58 in round 5). Children from the poorest wealth index had higher odds of developmental delay (OR = 5.8; 95% CI = 4.92-6.82 in round 4 and OR = 2.5; 95% CI = 1.99-3.10 in round 5)., Conclusion: The prevalence of developmental delay is high across all zones; however, the burden varies amongst them. The age of the child, nutritional status and wealth index were indicators of developmental delay in Nigerian under-5 children. This underscores the need for surveillance and interventions focussed on improving child literacy, nutritional status and household standard of living across the zones., (Copyright © 2024 Copyright: © 2024 Nigerian Postgraduate Medical Journal.)

Ms. Todd's paper illustrates both the value of the analytic frame and the relevance of a flexible approach in response to the external reality. In this case, the impingement of the outside environment became an ongoing threat to the analyst's thinking and to the development of a safe and predictable therapeutic relationship. Ms. Todd's narrative of Joey's three-and-a-half-year analysis emphasizes the impact of external interference on the analyst's capacity to experience difficult affects with and for the patient. In addition, it highlights the importance of recognizing and working through one's countertransference resistance. This commentary focuses on Ms. Todd's work with Joey, so I will only refer to her work with his parents and other providers as it is reflected in her analysis.

Background: The purpose of this study was to assess deep hypothermic circulatory arrest (DHCA) as a modifier of neurodevelopmental (ND) outcomes in preschool children after cardiac surgery in infancy for repair of congenital heart defects (CHD)., Methods: This is a planned analysis of infants enrolled in a prospective study of apolipoprotein E polymorphisms and ND outcome after cardiac surgery. The effect of DHCA was assessed in patients with single or biventricular CHD without aortic arch obstruction. Neurodevelopmental assessment at 4 years of age included cognition, language, attention, impulsivity, executive function, social competence, and visual-motor and fine-motor skills. Patient and procedural variables were evaluated in univariate and multivariate models., Results: Neurodevelopmental testing was completed in 238 of 307 eligible patients (78%). Deep hypothermic circulatory arrest was used at the discretion of the surgeon at least once in 92 infants (38.6%) with a median cumulative duration of 36 minutes (range, 1 to 132 minutes). By univariate analysis, DHCA patients were more likely to have single-ventricle CHD (p = 0.013), lower socioeconomic status (p < 0.001), a higher incidence of preoperative ventilation (p < 0.001), and were younger and smaller at the first surgery (p < 0.001). By multivariate analysis, use of DHCA was not predictive of worse performance for any ND outcome., Conclusions: In this cohort of children undergoing repair of CHD in infancy, patients who underwent DHCA had risk factors associated with worse ND outcomes. Despite these, use of DHCA for repair of single-ventricle and biventricular CHD without aortic arch obstruction was not predictive of worse performance for any ND domain tested at 4 years of age., (Copyright © 2010 The Society of Thoracic Surgeons. Published by Elsevier Inc. All rights reserved.)

This paper explains why social work practice does not seem to play as strong a role as other professions in enhancing the dignity of lives of individuals with developmental disabilities. Social workers are urged to give the same validity to case management of individuals with disabilities as has been given to improving services to poor people. (JDD)

In the Round Table discussion after the keynote lecture given by anthropologist Laura Lakshmi Fjord, presentations were given by Anna-Lena Tvingstedt, psychologist, PhD and research fellow, Malmö University College, Sweden; by Brita Edlund, Sign Language teacher and chair of the Finnish/Swedish association for parents of deaf children, Finland; by Dusan Kuhar, psychologist and family therapist at the Education center for deaf and hard-of-hearing children in Ljubljana, Slovenia and by Felicity Gifford, teacher of the deaf, State Coordinator of Services to Deaf and Hearing Impaired students, Department of Education, Tasmania, Australia. The focus of the session was set on needs and processes in a family when the diagnosis of a deaf child has just been given. This paper is a summary of the four presentations.

Background: Children and young people (CYP) with intellectual and developmental disabilities (IDDs) have significant additional educational needs compared with the general population. In England, the government has established a system of education, health and care plans (EHCPs) to support children with special educational needs and disabilities, but disparities exist between the degree of need and the availability of support. We conducted a prospective UK national cohort study (IMAGINE) of children with rare pathogenic genomic variants, all of which are associated with IDD, to investigate associated neuropsychiatric risk. Subsequently, we obtained information from the UK's National Pupil Database on their educational progress through the state school system. We aimed to identify whether they had received EHCP provision and whether that support was associated with their family's socioeconomic status, region of domicile, ethnicity, sex, primary special educational needs (SEN) type, academic performance and mental health well-being., Methods: We recruited 2738 CYP from England into the IMAGINE study between 2014 and 2019. The educational histories of the participants (6-28 years old, mean ± standard deviation = 14 ± 4 years, 56% male) were obtained from the Department for Education's National Pupil Database in 2021. Educational data included attainment scores from the Early Year Foundation Stage (<5 years) to key stage 4 (15-16 years). Each family was assigned an index of multiple deprivation (IMD) score based on their home address postcode. Parents or carers rated their child's emotional and behavioural adjustment on the Strengths and Difficulties Questionnaire (SDQ). The association between receiving an EHCP and the child's IMD score, eligibility for free school meals, English region of domicile, ethnicity, sex, primary SEN type, academic attainment and SDQ score was investigated., Results: In this cohort, 78% of participants had received an EHCP. CYP living in the most deprived IMD deciles were substantially less likely to receive EHCP support than those in the least deprived decile, irrespective of their degree of intellectual developmental disability, academic performance or associated mental health problems. There were no sex differences. Children of Asian heritage were more likely to have been granted an EHCP than White children from equivalent IMD deciles. There were striking regional disparities. Participants living in London were significantly more likely to have been awarded an EHCP than participants living anywhere else in England, regardless of their IMD decile; those in the least deprived decile had almost 100% EHCP provision., Conclusions: This study found evidence for nationwide regional inconsistencies in the awarding of EHCP to CYP with significant intellectual impairments of known genetic aetiology. Disparities in funds available to education authorities could be a contributory factor. EHCP support was potentially influenced by how strongly a parent advocates for their child., (© 2024 The Authors. Journal of Intellectual Disability Research published by John Wiley & Sons and MENCAP.)

Background: Attitudes toward childhood disability have historically focused on biomedical efforts on 'fixing'. The introduction of WHO's ICF framework for health and Canadian researchers' 'F-words' (functioning, fitness, fun, friends, family and future) have significantly changed the field. To explore whether the F-words ideas influenced parents' perspectives on their child's abilities and rehabilitation goals, this qualitative pilot study introduced the F-words to Iranian parents with a child with a developmental disability., Methods: This study was conducted in Tabriz, Iran, in 2023, using Iranian educational F-words materials built on ideas available on the CanChild F-words Knowledge Hub. Data were collected through semistructured interviews with five mothers of children <5 years old with a developmental disability before and after attending an 'F-words Awareness Session' and analysed using thematic analysis., Results: In the preinterviews, six themes (and 20 subthemes) were identified: (i) routines (5); (ii) challenges (4); (iii) parental concerns (3); (iv) child's needs and priorities (3); (v) the role of parents in satisfying needs and challenges (2); and (vi) expectations of rehabilitation (3). In the postinterview, the same six themes and four additional subthemes emerged., Conclusion: Findings from the pilot study showed that the intervention had an impact on the attitudes and behaviours of participants. Specifically, teaching about the F-words reduced parents' emphasis on the concept of 'normality'. Families' positive response to the 'F-words Awareness Session' indicates their openness to incorporating this approach into their daily lives. These findings highlight the potential benefits of utilizing the F-words in rehabilitation in Iran. Studies like these can serve as a foundation for developing effective strategies for integrating the F-words into existing rehabilitation practices in Iran., (© 2024 John Wiley & Sons Ltd.)

Background: Maternal folic acid intake has been associated with decreased risk for neurodevelopmental disorders including autism spectrum disorder (ASD). Genetic differences in folate metabolism could explain some inconsistencies. To our knowledge, newborn folate concentrations remain unexamined., Methods: We measured folate in archived newborn dried blood spots of children from the CHARGE (Childhood Autism Risks from Genetics and the Environment) case-control study who were clinically confirmed at 24-60 months to have ASD (n = 380), developmental delay (n = 128), or typical development (n = 247). We quantified monthly folic acid intake from maternally-reported supplements and cereals consumed during pregnancy and 3 months prior. We assessed associations of newborn folate with maternal folic acid intake and with ASD or developmental delay using regression. We stratified estimates across maternal and child MTHFR genotypes., Results: Among typically developing children, maternal folic acid intake in prepregnancy and each pregnancy month and prepregnancy prenatal vitamin intake were positively associated with newborn folate. Among children with ASD, prenatal vitamin intake in pregnancy months 2-9 was positively associated with newborn folate. Among children with developmental delay, maternal folic acid and prenatal vitamins during the first pregnancy month were positively associated with neonatal folate. Associations differed by MTHFR genotype. Overall, neonatal folate was not associated with ASD or developmental delay, though we observed associations with ASD in children with the MTHFR 677 TT genotype (odds ratio: 1.76, 95% CI = 1.19, 2.62; P for interaction = 0.08)., Conclusion: Maternal prenatal folic acid intake was associated with neonatal folate at different times across neurodevelopmental groups. Neonatal folate was not associated with reduced ASD risk. MTHFR genotypes modulated these relationships., Competing Interests: Disclosure: The authors report no conflicts of interest., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

Individuals with disabilities have been less involved in school activities than their peers of the same age and this includes career preparation in science and math (Agran et al., 2019; Eriksson et al., 2007; Jackson et al., 2022). Students with disabilities often lack access to facilities, programs, and equipment, and acceptance by educators, employers, and co-workers (Burgstahler, 1994). The effects of a virtual reality (VR) human anatomy application as the means of teaching science vocabulary definitions and locations acquisition for three different human anatomy systems (digestive, respiratory, and integumentary) to college-age students with intellectual disability (ID) are reviewed. This single subject, multiple baseline study included two transition age youth with ID. The intervention package included both a guided and exploratory portion. Data were collected on the participants' accuracy on the definitions and locations of ten vocabulary words for each of the three body systems on a paper assessment. Findings indicated that a functional relation existed between the implementation of the intervention package and an increase in the accuracy of scores in both definitions and locations for each of the three body systems for each participant.

Background: Transition for young people with intellectual disabilities from paediatric or adolescent services into adult health care services remains a difficult process for all stakeholders. The study assessed the type of interventions, the methodological approaches, study designs and location of existing published evidence in health care transitions. Methods: A systematic review utilising the PRISMA protocol with an amended quality appraisal tool to explore the nature of published evidence on health care transitions for young people. Results: Findings demonstrate that health transition research for this population lacks a robust evidence base and researchers favour exploratory studies investigating the experiential dimension of transition. The lack of involvement of young people in the studies indicates a problematic absence of genuinely participatory research. Conclusion: The study is the first systematic review of empirical studies in health transition of young people with intellectual disabilities exploring the nature of existing evidence. The results will support setting priorities for future research.

In 2022, the International League Against Epilepsy revised their classification of epilepsy syndromes for clinicians to better understand the relationships between different epilepsy syndromes, their underlying causes, and their associated developmental and behavioral features. This review highlights portions of the current classification with an emphasis on epilepsy syndromes that readily present with developmental challenges and provides a unique framework, based on electroencephalography, to easily identify and understand these syndromes. Included in this review are a helpful categorization scheme with visual aid, descriptions of updated epilepsy syndromes, figures of relevant identifiers of syndrome and information regarding future directions toward treatment and research. Covered syndromes include developmental and epileptic encephalopathy, Dravet syndrome, Rasmussen syndrome, and infantile epileptic spasm syndrome, among others. WHAT THIS PAPER ADDS: The revised epilepsy syndrome classification by the International League Against Epilepsy aims to improve the outcomes for children with epilepsy. The electroencephalography features of epilepsy syndromes are grouped based on a categorization model. This model allows clinicians to understand overlapping phenotypes and aid with both identification and diagnosis., (© 2023 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

Background: Tailored sexuality education for adolescents with intellectual and developmental disabilities is a crucial, yet unmet, need as this population is particularly at risk for sexual abuse and victimisation. However, there are no evidence-based interventions to specifically address this need. This paper presents the development of an intervention framework to address equity in sexuality education and support adolescents with intellectual and developmental disabilities to understand and provide sexual consent, a foundational aspect of sexuality education and sexual health. Methods: The Sexual Health Equity Project team used a Community-Based Participatory Research approach to develop a four-module sexual consent intervention for adolescents with intellectual and developmental disabilities. We leveraged a diverse, interdisciplinary team in a suburban Midwestern school district, and used Backward Design to create objectives and assessments which were rooted in findings from qualitative data by special education teachers. Results: The resulting sexual consent intervention, "Ask Me First--Choices," is comprised of four modules covering topics including definition of sexual consent; decision-making strategies and practice; communicating consent and refusal, identifying situations of consent and non-consent; and legal issues surrounding consent. Each module is divided into five components for content delivery: (1) introduction, (2) lecture, (3) supplemental activity, (4) assessment, and (5) conclusion. We detail the intervention's unique aspects, emphasising areas where we used Universal Design for Learning principles to support teachers' instruction and students' learning. Conclusion: Our efforts to create a sexual consent intervention directly address sexuality education equity issues. We offer commentary on our design process and decisions, as well as recommendations for future groups who want to develop sexual health interventions in similar contexts for students with intellectual and developmental disabilities. Next steps include further testing and validation of the sexual consent intervention to build the evidence-base of sexuality education for adolescents with intellectual and developmental disabilities.