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International Journal of Developmental... 2024Proper treatment of developmental disabilities requires health workers to have adequate knowledge of etiology and referral procedures. There is a dearth of research on...
Proper treatment of developmental disabilities requires health workers to have adequate knowledge of etiology and referral procedures. There is a dearth of research on knowledge of developmental disabilities among health workers in Ghana. The purpose of this study was to document knowledge about developmental disorders, causes, and referral procedures among health workers. Researchers used a successive free-listing method to interview 37 health workers. Developmental disabilities which present with physical symptoms were the most salient disorders identified among health workers, while learning disabilities and attention deficit disorder were largely overlooked. The most commonly listed developmental disabilities were cerebral palsy, Down syndrome, and autism spectrum disorder. Respondents had limited knowledge about the causes of and referral resources for developmental disabilities. Results show the need for continuing medical education, public awareness, and enhanced resources to support the identification and care of children with developmental disabilities in Ghana.
PubMed: 38699501
DOI: 10.1080/20473869.2022.2097413 -
Community Mental Health Journal Aug 2023People with intellectual and developmental disabilities (IDD) have higher incidences of mental health conditions and behavioral support needs than people without IDD but...
People with intellectual and developmental disabilities (IDD) have higher incidences of mental health conditions and behavioral support needs than people without IDD but may not receive needed care from community providers. We examined rates of co-occurring conditions in a representative sample of adults with IDD who use state funded services in Virginia. Using data from two datasets, we identified four categories of mental health and behavioral conditions. We used these categories to examine differences in individual- and system-level factors in people with and without co-occurring conditions. We found high rates of co-occurring conditions in our sample. We found important disability factors and system-level characteristics that were associated with having a diagnosed mental health condition or behavioral support needs. Differing patterns of diagnosis and treatment for co-occurring conditions suggests more work needs to be done to support people with IDD and co-occurring mental health conditions living in the community.
Topics: Adult; Humans; Child; Developmental Disabilities; Intellectual Disability; Mental Health; Virginia
PubMed: 36739327
DOI: 10.1007/s10597-023-01091-4 -
Infectious Diseases and Therapy Sep 2023Individuals with intellectual and developmental disabilities are at increased risk for adverse outcomes from coronavirus disease 2019. Clusters of COVID-19 infections...
INTRODUCTION
Individuals with intellectual and developmental disabilities are at increased risk for adverse outcomes from coronavirus disease 2019. Clusters of COVID-19 infections can be used to track SARS-CoV-2 transmission. This is particularly important in environments frequently used for individuals with intellectual and developmental disabilities, such as schools. The objective of this study was to compare the number of clusters of student and staff cases identified during three distinct periods (pre-Delta, Delta, and Omicron) of the COVID-19 pandemic.
METHODS
Weekly COVID-19 testing occurred from November 23, 2020 to May 27, 2022 during three phases of the COVID-19 pandemic: pre-Delta, Delta, and Omicron. Structured interviews were conducted with positive cases to determine if they contracted COVID-19 in the school environment, and interviews with school administrators responsible for contact tracing determined school-based clusters.
RESULTS
160 cases of COVID-19 were identified and 55 cluster positives were recorded during the study period. 0 (0%) cluster positives were recorded during the pre-Delta variant wave, 3 (5%) cluster positives were recorded during the Delta variant wave, and 52 (95%) cluster positives were recorded during the Omicron variant wave. Additionally, 23 (85%) of all positives during pre-Delta, 12 (50%) of all positives during Delta, 66 (61%) of all positives during Omicron, and 36 (69%) of cluster positives during Omicron did not receive CDC-recommended dosages of the COVID-19 vaccine.
CONCLUSION
The Omicron variant led to an increase in cluster-based transmission, and staying up to date with vaccination guidelines was crucial in limiting transmission.
CLINICAL TRIAL REGISTRATION
Prior to enrollment, this study was registered at ClinicalTrials.gov on September 25, 2020 (identifier NCT04565509; titled "Supporting the Health and Well-being of Children with Intellectual and Developmental Disability During COVID-19 Pandemic").
PubMed: 37704799
DOI: 10.1007/s40121-023-00855-5 -
FEBS Letters Oct 2023Human developmental disorders encompass a wide range of debilitating physical conditions and intellectual disabilities. Perturbation of protein kinase signalling... (Review)
Review
Human developmental disorders encompass a wide range of debilitating physical conditions and intellectual disabilities. Perturbation of protein kinase signalling underlies the development of some of these disorders. For example, disrupted SRPK signalling is associated with intellectual disabilities, and the gene dosage of DYRKs can dictate the pathology of disorders including Down's syndrome. Here, we review the emerging roles of the CMGC kinase families SRPK, CLK, DYRK, and sub-family HIPK during embryonic development and in developmental disorders. In particular, SRPK, CLK, and DYRK kinase families have key roles in developmental signalling and stem cell regulation, and can co-ordinate neuronal development and function. Genetic studies in model organisms reveal critical phenotypes including embryonic lethality, sterility, musculoskeletal errors, and most notably, altered neurological behaviours arising from defects of the neuroectoderm and altered neuronal signalling. Further unpicking the mechanisms of specific kinases using human stem cell models of neuronal differentiation and function will improve our understanding of human developmental disorders and may provide avenues for therapeutic strategies.
Topics: Child; Humans; Developmental Disabilities; Dyrk Kinases; Intellectual Disability; Phosphorylation; Protein Serine-Threonine Kinases; Protein-Tyrosine Kinases; Stem Cells
PubMed: 37607329
DOI: 10.1002/1873-3468.14723 -
Behavior Modification Mar 2024Self-injurious behavior (SIB) among children and youth with developmental disabilities has not diminished in prevalence despite the availability of effective... (Meta-Analysis)
Meta-Analysis Review
Self-injurious behavior (SIB) among children and youth with developmental disabilities has not diminished in prevalence despite the availability of effective interventions, and the impact on quality of life for people and their families is devastating. The current meta-analysis reviews SIB intervention research between 2011 and 2021 using single-case experimental designs with children and youth up to 21 years old and provides a quantitative synthesis of data from high-quality studies including moderator analyses to determine effects of participant and study characteristics on intervention outcomes. Encouraging findings include a high level of effectiveness across studies in the decrease of SIB (Tau- = -0.90) and increase of positive behavior (Tau- = 0.73), as well as an increase in studies (relative to prior reviews) reporting intervention fidelity, generalization, maintenance, and social validity. However, our findings shed limited light on potential moderating variables in the development of interventions for children and youth who exhibit SIB. Of the potential moderators of intervention effects, only implementer (researcher/therapist vs. parent/caregiver) and setting (clinic vs. home) were significantly associated with improved outcomes. We discuss the need for more robust involvement of natural communities of implementers in SIB intervention research to better equip them to effectively and sustainably meet the needs of people they care for. We also discuss the importance of creating systems enabling broad access for children with SIB to effective interventions in service of reducing burden for people, families, and society over time.
Topics: Child; Humans; Adolescent; Developmental Disabilities; Quality of Life; Parents; Self-Injurious Behavior
PubMed: 38197303
DOI: 10.1177/01454455231218742 -
BMC Oral Health Oct 2023People with Intellectual and developmental disabilities (IDDs) experience oral health inequality due to myriad of risk factors and complex needs. Sensory processing... (Meta-Analysis)
Meta-Analysis
Effectiveness of sensory adaptive dental environments to reduce psychophysiology responses of dental anxiety and support positive behaviours in children and young adults with intellectual and developmental disabilities: a systematic review and meta-analyses.
BACKGROUND
People with Intellectual and developmental disabilities (IDDs) experience oral health inequality due to myriad of risk factors and complex needs. Sensory processing difficulties, maladaptive behaviours and dental anxiety contribute to difficulties in receiving preventive and routine dental treatments. This study aimed to systematically review the evidence on the effectiveness of sensory adaptive dental environments (SADE) for children and young adults (up to the ages 24 years) with IDD to address cooperation and dental anxiety.
METHODS
This review was reported according to The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. MEDLINE (Ovid), The Cochrane Library, Embase, Google Scholar, Web of Science and OT Seeker were searched using appropriate terms to identify Randomised Control Trails (RCTs) that matched inclusion criteria. Screening was conducted by two reviewers after de-duplication based on titles and abstracts followed by full text retrieval. Quality of the included studies was assessed using Cochrane Risk of Bias (ROB)-2 for crossover trials and data extracted by two reviewers. The details of the interventions and effectiveness were compared and discussed narratively, and comparable outcomes were included to meta-analyses using R software.
RESULTS
A total of 622 articles were identified and five articles met eligibility for inclusion. Three studies used multi-sensory adaptations and one used single sensory adaptation of music. Narrative synthesis showed some evidence of SADE reducing magnitude and duration, although, questionable for reducing the number of maladaptive behaviours. Two studies demonstrated conflicting evidence of the effect of SADE on cooperation. Three studies demonstrated significant positive impact of SADE on psychophysiological outcomes. Despite an overall tendency to favour SADE, no statistically significant difference of maladaptive behaviours was found between SADE and regular dental environment (RDE) (Standardised mean change (SMC) = 0.51; 95% Confidence Interval (CI) -0.20 to 1.22; p = 0.161). SADE was superior to RDE (SMC -0.66; 95% CI -1.01 to -0.30; p = < 0.001) in reducing psychophysiological responses of dental anxiety.
CONCLUSION
Current evidence suggests that adapting visual, tactile, and auditory aspects of the dental environment in a single or multi-sensory approach demonstrates small positive effects on psychophysiological responses and maladaptive behaviours of dental anxiety for people with IDD.
TRIAL REGISTRATION
The title of this review was registered with PROSPERO (CRD42022322083).
Topics: Child; Humans; Young Adult; Dental Anxiety; Developmental Disabilities; Oral Health; Psychophysiology; Risk Factors
PubMed: 37858057
DOI: 10.1186/s12903-023-03445-6 -
Journal of Family Psychology : JFP :... Sep 2023Longitudinal, prospective analyses of marital status in parents of individuals with autism are needed to better understand the types and timing of supports needed to...
Longitudinal, prospective analyses of marital status in parents of individuals with autism are needed to better understand the types and timing of supports needed to mitigate the impact of divorce on the family. We describe the timing of divorce and the factors that contribute to divorce in a longitudinal sample of families of individuals with autism and other developmental disabilities. Participants included parents of 219 children initially referred for autism and other developmental delays followed to age 30 years. Approximately 36% of individuals in our sample experienced a parental divorce by age 30. Higher rates of divorce were associated with lower maternal education and families of color and moderately associated with younger maternal age at child's birth, autism symptom severity, and ASD diagnosis. Divorces were most common in children's early years (under age 5) and also in the teenage years and beyond (over age 15). After age 15, higher risk was associated with the child's higher cognitive ability and daily living skills, and being a multiplex family. Results suggest that divorce risk in families of children with autism remains high through childhood into early adulthood. Understanding factors related to changes in marital status may help support families across time. (PsycInfo Database Record (c) 2023 APA, all rights reserved).
Topics: Child; Adolescent; Humans; Adult; Child, Preschool; Autistic Disorder; Prospective Studies; Developmental Disabilities; Marital Status; Divorce; Parents
PubMed: 37126032
DOI: 10.1037/fam0001093 -
Research in Developmental Disabilities Sep 2023Developmental disabilities have been widely studied in higher-income countries. However, most individuals with these conditions live in low- and middle-income countries... (Review)
Review
Developmental disabilities have been widely studied in higher-income countries. However, most individuals with these conditions live in low- and middle-income countries and they are reportedly under-represented in the scientific literature. To tackle this issue, previous research has provided insight into the thematic developments in the research on developmental disabilities in Africa by means of a scientometric approach to reviews. The current work aims to extend the scientometric approach to investigate the main interests in the literature on developmental disabilities conducted in Middle Eastern countries. A total of 1110 documents were retrieved from Scopus and their patterns of co-citation were analysed with the CiteSpace software. Research in Developmental Disabilities emerged to be the main source in the sample of downloaded documents. Furthermore, a total of six main thematic domains and the four most impactful documents in the literature were identified. Results showed that research on developmental disabilities in the Middle East has been mainly focused on uncovering the genetic basis of this group of conditions. The study of clinical profiles, diagnosis, management, and treatment of individuals with developmental disabilities have been so far under-investigated and represents material for future studies.
Topics: Humans; Developmental Disabilities; Bibliometrics; Middle East
PubMed: 37473627
DOI: 10.1016/j.ridd.2023.104551 -
Neuron Sep 2023Genetic association studies have made significant contributions to our understanding of the etiology of neurodevelopmental disorders (NDDs). However, these studies...
Genetic association studies have made significant contributions to our understanding of the etiology of neurodevelopmental disorders (NDDs). However, these studies rarely focused on the African continent. The NeuroDev Project aims to address this diversity gap through detailed phenotypic and genetic characterization of children with NDDs from Kenya and South Africa. We present results from NeuroDev's first year of data collection, including phenotype data from 206 cases and clinical genetic analyses of 99 parent-child trios. Most cases met criteria for global developmental delay/intellectual disability (GDD/ID, 80.3%). Approximately half of the children with GDD/ID also met criteria for autism. Analysis of exome-sequencing data identified a pathogenic or likely pathogenic variant in 13 (17%) of the 75 cases from South Africa and 9 (38%) of the 24 cases from Kenya. Data from the trio pilot are publicly available, and the NeuroDev Project will continue to develop resources for the global genetics community.
Topics: Humans; Child; Neurodevelopmental Disorders; Phenotype; Intellectual Disability; Autistic Disorder; Exome; Developmental Disabilities
PubMed: 37463579
DOI: 10.1016/j.neuron.2023.06.010 -
Intellectual and Developmental... Oct 2023Through focus groups, adults with intellectual and developmental disabilities (IDD) provided their priorities for health equity data, surveys, and information...
Through focus groups, adults with intellectual and developmental disabilities (IDD) provided their priorities for health equity data, surveys, and information dissemination by U.S. federal agencies. Participants reported privacy concerns about sharing information, need for better data to promote access to quality health care and services, and need for information on social contexts that influence quality of life. Data should include functional limitations, health risks, and priorities for health care, and should support choice and self-determination. Adults with IDD believe parents or support persons do not always share their views, raising concerns about proxy reporting. Surveys and information need to use clear language, visual aids, and provide neutral supports. Information should be shared broadly, including to persons with IDD and families, health care professionals, and policy makers.
Topics: Adult; Child; Humans; Health Equity; Quality of Life; Developmental Disabilities; Intellectual Disability; Policy; Disabled Persons
PubMed: 37770052
DOI: 10.1352/1934-9556-61.5.368