Severe Developmental Disabilities Research Articles

Changes in Psychiatric Medication Use During the COVID-19 Pandemic in a Pediatric Long-Term Care Facility.

Background: Coronavirus disease 2019 (COVID-19) caused a global pandemic that dramatically altered infection control procedures in long-term care facilities. Mental health decline among residents of geriatric facilities during the pandemic has been described (Ferro Uriguen et al., 2022). Our study aims to evaluate psychological effects of the pandemic on residents of a pediatric long-term care facility, a population comprised of medically complex children. To characterize this, we compared patterns of psychotropic medication use during the COVID-19 pandemic to those of the prepandemic period among residents of a 76-bed pediatric long-term care facility. Methods: We conducted a retrospective study of psychotropic medication use from January 2019 to August 2022 using de-identified monthly facility medication refill data. Linear multivariable regression models were used to estimate the level and trends in the monthly rates of medication refills per 10,000 bed days among resident children before and after the pandemic onset. Six classes of psychotropic medications were analyzed including antipsychotics, antidepressants and anxiety medications, trazodone, clonidine, mood stabilizers, and gabapentin. Results: The pandemic onset was associated with a significant increase in the monthly prescribing rates of antidepressant and anxiety medications (20.83; 95% CI, 3.96-37.71; p = 0.017), mood stabilizers (10.44; 95% CI, 5.79-15.09; p < 0.001), and trazodone (-27.66; 95% CI, -40.44 to 14.88; p < 0.001) above those expected by prepandemic trends. The trend in trazodone use changed significantly during the pandemic from decreasing prepandemic to increasing (2.21; 95% CI, 1.28-3.14; p < 0.001). Antidepressant, anxiety medication, and gabapentin use increased throughout the study. Antidepressant and anxiety medication use surged early in the pandemic, but then continued growth at their prior rates of use. Discussion: Increased use of antidepressant and anxiety medications and trazodone suggests a possible impact of the COVID-19 pandemic on rates of anxiety, depression, sleep disturbance, and agitation among children with severe intellectual and developmental disabilities living in long-term care.

Examining the Changes in Problem Behaviours and Communication of Persons with Intellectual and Developmental Disabilities after Transitioning from an Institutional Setting to the Community

Worldwide, the community transition process away from institutions has increased in the past 30–50 years among persons with severe intellectual and developmental disabilities. This process, also known as “deinstitutionalization”, could potentially impact problem behaviors and communication. This study examined the impacts of community transitions on behavioural and communication outcomes in Canadians with intellectual and developmental disabilities. Data were collected using the Comprehensive Health Assessment Program and medical chart reviews. Descriptive, aggregate-level, and individual-level analyses were conducted for 32 adults who transitioned to community living. Descriptive analyses and the McNemar Chi-Square Test were conducted. Following community transitions, the study group experienced a significant decrease in problem behaviours and changes in communication. The study findings suggest that deinstitutionalization could provide effective strategies for addressing problem behaviors and fostering improvements in communication, promoting the well-being and quality of life of persons with intellectual and developmental disabilities.

Sensory processing abilities in relation to motor capabilities in children with different types of cerebral palsy

Background and purpose. children with cerebral palsy have sensory processing issues as well as motor problems, which lead to severe developmental disability. In this study, we aimed to assess correlation between sensory processing abilities and motor capabilities in children with cerebral palsy and assess the effect of cerebral palsy types on sensory processing abilities and motor capabilities. Materials and methods. One hundred cerebral palsy children of both sex were included in the study; their age ranged from 4-10 years old were selected from pediatric rehabilitation out clinic of faculty of Physical Therapy Cairo University, fulfilling inclusion criteria. All children were assessed by Short sensory profile: to measure sensory processing ability, Gross Motor Function Classification System: to measure the gross motor skills and Manual Ability Classification System: to measure the fine motor skills. Result. there was a significant correlation between GMFCS, MACS and the total score of SSP as well as Low energy weak, tactile sensitivity score, taste smell sensitivity, Movement sensitivity, and Under-responsive seeks sensation (P ≤ 0.05*). There was no significant correlations between both auditory filtering and Visual-auditory sensitivity with GMFCS and MACS (P = 0.676 and 0.266, respectively). There was statistical variation among different CP types regarding SSP and motor assessment (P ≤ 0.05*). Conclusion. the study showed: sensory processing abilities effect on motor capabilities in children with cerebral palsy.

Near-Infrared Fluorescence Tomography and Imaging of Ventricular Cerebrospinal Fluid Flow and Extracranial Outflow in Non-Human Primates.

The role of the lymphatics in the clearance of cerebrospinal fluid (CSF) from the brain has been implicated in multiple neurodegenerative conditions. In premature infants, intraventricular hemorrhage causes increased CSF production and, if clearance is impeded, hydrocephalus and severe developmental disabilities can result. In this work, we developed and deployed near-infrared fluorescence (NIRF) tomography and imaging to assess CSF ventricular dynamics and extracranial outflow in similarly sized, intact non-human primates (NHP) following microdose of indocyanine green (ICG) administered to the right lateral ventricle. Fluorescence optical tomography measurements were made by delivering ~10 mW of 785 nm light to the scalp by sequential illumination of 8 fiber optics and imaging the 830 nm emission light collected from 22 fibers using a gallium arsenide intensified, charge coupled device. Acquisition times were 16 seconds. Image reconstruction used the diffusion approximation and hard-priors obtained from MRI to enable dynamic mapping of ICG-laden CSF ventricular dynamics and drainage into the subarachnoid space (SAS) of NHPs. Subsequent, planar NIRF imaging of the scalp confirmed extracranial efflux into SAS and abdominal imaging showed ICG clearance through the hepatobiliary system. Necropsy confirmed imaging results and showed that deep cervical lymph nodes were the routes of extracranial CSF egress. The results confirm the ability to use trace doses of ICG to monitor ventricular CSF dynamics and extracranial outflow in NHP. The techniques may also be feasible for similarly-sized infants and children who may suffer impairment of CSF outflow due to intraventricular hemorrhage.

Parental reflective functioning and coping among parents of toddlers with severe developmental disabilities: An early integrative bio-psycho-social rehabilitative intervention in daycare facilities

BackgroundParental reflective functioning has a positive effect on parents' wellbeing. It is associated with positive outcomes for their children. However, there is little research on it among parents of toddlers with severe developmental disabilities. AimsWe examined an early bio-psycho-social rehabilitative intervention with parents of toddlers with severe developmental disabilities in daycare programs and its contribution to their parental reflective functioning and coping. Methods and proceduresSeventy parents of children (ages 3 months to two and half years) responded to measures before and after the intervention in their children's daycare programs. Structural equation modeling of the mediation model revealed that the therapeutic inputs were associated with more adaptive coping strategies by increasing parental reflective functioning. Outcomes and resultsParents who participated in an intervention of 13 sessions or more significantly increased their reflective functioning. The path analysis showed that parental reflective functioning after the intervention mediated the association between its prior level and the therapeutic inputs, and the parents’ proactivity and search for support. Conclusions and implicationsParental reflective functioning positively affects parents’ adaptive coping styles. A bio-psycho-social intervention targeting parental reflective functioning benefits parents of toddlers with severe developmental disabilities.

The advantages of the magnetic resonance image compilation (MAGiC) method for the prognosis of neonatal hypoglycemic encephalopathy.

To explore the prognostic value of magnetic resonance image compilation (MAGiC) in the quantitative assessment of neonatal hypoglycemic encephalopathy (HE). A total of 75 neonatal HE patients who underwent synthetic MRI were included in this retrospective study. Perinatal clinical data were collected. T1, T2 and proton density (PD) values were measured in the white matter of the frontal lobe, parietal lobe, temporal lobe and occipital lobe, centrum semiovale, periventricular white matter, thalamus, lenticular nucleus, caudate nucleus, corpus callosum and cerebellum, which were generated by MAGiC. The patients were divided into two groups (group A: normal and mild developmental disability; group B: severe developmental disability) according to the score of Bayley Scales of Infant Development (Bayley III) at 9-12 months of age. Student's t test, Wilcoxon test, and Fisher's test were performed to compare data across the two groups. Multivariate logistic regression was used to identify the predictors of poor prognosis, and receiver operating characteristic (ROC) curves were created to evaluate the diagnostic accuracy. T1 and T2 values of the parietal lobe, occipital lobe, center semiovale, periventricular white matter, thalamus, and corpus callosum were higher in group B than in group A (p < 0.05). PD values of the occipital lobe, center semiovale, thalamus, and corpus callosum were higher in group B than in group A (p < 0.05). Multivariate logistic regression analysis showed that the duration of hypoglycemia, neonatal behavioral neurological assessment (NBNA) scores, T1 and T2 values of the occipital lobe, and T1 values of the corpus callosum and thalamus were independent predictors of severe HE (OR > 1, p < 0.05). The T2 values of the occipital lobe showed the best diagnostic performance, with an AUC value of 0.844, sensitivity of 83.02%, and specificity of 88.16%. Furthermore, the combination of MAGiC quantitative values and perinatal clinical features can improve the AUC (AUC = 0.923) compared with the use of MAGiC or perinatal clinical features alone. The quantitative values of MAGiC can predict the prognosis of HE early, and the prediction efficiency is further optimized after being combined with clinical features.

Occupational Therapy Services for Transition-Age Youth with Moderate to Severe Disabilities: A Scoping Review

Purpose: This scoping review seeks to identify specific services, assessments, and interventions utilized by school-based occupational therapy (OT) practitioners working with transition-age youth with moderate to severe developmental disabilities. Methods: A search was conducted in CINAHL, Medline, APA PsychINFO, Education Research Complete, and Academic Search Complete databases. Articles were screened for inclusion and relevant data extracted. Included articles were peer reviewed, referred to any inclusion of occupational therapy services in school-based practice, English-language, and focused on individuals 12-30 years old with moderate to severe disabilities. Results: Twenty articles met criteria for inclusion in the review. All articles included occupational therapy services whether providing direct or indirect services. The top two intervention types used were occupation-based interventions and advocacy-based interventions. The top two assessment types used were task-based and transition-based assessments. Occupational therapists most frequently provided direct services for transition-age youth (78.2%). Conclusions: This review provides a guide for occupational therapy practitioners to advocate for occupational therapy’s role in transition services and overcome the barriers identified: lack of understanding of occupational therapy’s role, lack of resources, lack of measurable assessments, and lack of individualized interventions. This review provides an extensive variety of assessments, interventions, and service delivery approaches available and relevant for occupational therapists working with adolescents and young adults with moderate to severe disabilities.

Long-term consequences of neonatal encephalopathy in the hypothermia era: protocol for a follow-up cohort study at 9 years of age

IntroductionTherapeutic hypothermia (TH) became the standard of care treatment for neonates with moderate and severe neonatal encephalopathy (NE) in most industrialized countries about 10 years ago. Although TH is effective...

Families’ perspectives on the process of community transitions of individuals with severe intellectual and developmental disabilities

ABSTRACT Background Deinstitutionalisation refers to the transition of individuals with intellectual and developmental disabilities from large institutions to smaller homes in the community. The purpose of this study was to explore how family members of persons with intellectual and developmental disabilities perceived their loved ones’ community transition process. Method Eight family members of persons with severe or profound intellectual and developmental disabilities formerly residing at the complex care facility of St.Amant participated in semi-structured interviews. Interview transcripts were analysed thematically using an iterative inductive process and constant comparative method. Results Three main themes emerged from the family members’ accounts of their loved ones’ community transitions process: 1) families’ initial reactions, 2) strengths, and 3) challenges. Conclusions Initial reactions of family members to learning about the community transitions process were varied. Family members’ perspectives inform deinstitutionalisation efforts by highlighting facilitators such as adequate involvement, and barriers such as, unanticipated delays, to the community transitions process.

Blenderized food tube feeding in very young pediatric patients with special healthcare needs.

Up to 85% of children with severe developmental disabilities have feeding disorders and require enteral tube feeding. Many caregivers desire blenderized tube feeding (BTF) instead of commercial formula (CF) for their child, citing a desire for a more physiologic feeding, to reduce gastrointestinal (GI) symptoms and/or promote oral intake. In this retrospective, single-center study, medical records (n = 34) of very young children (aged ≤36 months) with severe developmental disabilities were reviewed. Comparisons of growth parameters, GI symptoms, oral feeding, and GI medication use were made between the initial introduction of BTF and again at the last patient encounter when the children aged out of the program. Of the 34 charts reviewed (16 male and 18 female patients), comparisons between baseline BTF introduction and the last patient encounter indicated reductions in adverse GI symptoms, significant GI medication reduction (P = 0.000), increased oral food intake, and nonsignificant improvements in growth parameters. These positive outcomes were realized whether children received full or partial BTF or type of BTF formulation. Consistent with similar research studies, transitioning very young children with significant special healthcare needs from CF to BTF resulted in improvement in GI symptoms, reduced need for GI medications, supported growth goals, and contributed to improved oral feeding.

A selectivity filter mutation provides insights into gating regulation of a K+ channel.

Inwardly rectifying potassium (Kir) channels are essential for numerous physiological processes, including neuronal and cardiac excitability. Recently, the rare Keppen-Lubinsky syndrome (KPLBS), caused by de novo heterozygous mutations in the Kir3.2 (GIRK2) channel, has been described. KPLBS leads to severe developmental and intellectual disabilities, microcephaly, tightly adherent skin, and generalized lipodystrophy. We performed multi-µs molecular dynamics simulations of the WT and mutant GIRK2, which carries a KPLBS-causing point mutation in the selectivity filter. Our simulations provide insights into the structural changes evoked by the KPLBS mutation, as well as the associated molecular mechanisms leading to the loss of K+ selectivity. Furthermore, we reveal aberrant selectivity filter dynamics in the mutant to be correlated with motions in the binding site of the channel activator Gβγ. This coupling is corroborated by electrophysiological experiments, revealing that GIRK2wt activation by Gβγ reduces the affinity of Ba2+ block. We further present a functional characterization of the human GIRK2G154S mutant, validating our computational findings.

The Savant Syndrome: a Gift or a Disability? A Deeper Look into Metabolic Correlates of Hidden Cognitive Capacity.

Savant syndrome is a rare and unusual condition that occurs in the presence of severe developmental disabilities, disorders, and injuries. The syndrome can be congenital from birth to childhood or acquired as a result of a brain injury or damage to the central nervous system. There are several findings that indicate that savant syndrome usually occurs with significant brain metabolism alterations resulting in critical brain network changes. These types of changes in the brain are usually explained by the "tyranny of the left hemisphere" theory, which indicates the inhibition of the left hemisphere to allow the right hemisphere to develop savant abilities. Another way to temporarily simulate these types of changes in the brain can be through different neuromodulation techniques such as transcranial magnetic stimulation and transcranial direct current stimulation. Such neuromodulation techniques might help us discover the "hidden talent" potential through modulating the brain network metabolism. We herein discussed the types of savant syndrome along with its relation to specific neurometabolic network alterations. Furthermore, we provide a perspective on how newly developed neuromodulation and cognitive rehabilitation techniques can help simulate savant syndrome in healthy individuals through modulating the brain network activity.

Navigating the broken road: A call to strengthen access, equity, and inclusivity in the care of children with developmental disabilities and neurobehavioral disorders.

There is a significant scarcity of resources to achieve behavioral stabilization among children and adolescents with moderate to severe developmental disabilities and neurobehavioral disorders. In total, there are currently 76 inpatient pediatric neurobehavioral programs to support these patients across the United States. Many states do not currently have programs of this nature. Across existing programs, there are substantial waiting lists. In addition, non-public school, intensive day program, in-home and additional outpatient services are not reaching these patients fast enough which further exacerbate the sequalae of suboptimal outcomes and future quality of life implications for these patients. In addition, disparities remain in how the chronicity of developmental disabilities and neurobehavioral disorders are addressed within our healthcare system. It is crucial to categorize this constellation of specialized conditions as chronic illnesses which warrant continued care and treatment, similar in nature to lifelong medical conditions. Further time and priority are warranted in increasing accessibility, equity, and inclusivity in our U.S. healthcare system to optimize a range of health and developmental outcomes for these patients. Future work in this domain could also contribute towards the larger goal of the World Health Organization, Healthy People 2030, and the Sustainable Development Goals of the United Nations in securing delivery of healthcare services that are inclusive, equitable and accessible for individuals with disabilities.

ASD detection using an advanced deep neural network

Autism Spectrum Disorder (ASD) is a neurological disorder which at present has become one of the most severe developmental disabilities causing social and behavioral changes in individuals. During the first 6 to 18 months of a person’s life, early indicators of ASD can be seen as further regression in development with ageing up to 36 months. Early recognition of the disorder is one of the solutions to the problem so that precautionary measures can be adopted against the disorder. In this proposed work, along with all categories, major emphasis is given to the unbalanced toddler data set. The original data sets are first, pre-processed following splitting of the pre-processed data into training and test data. For classification, a deep network model is implemented which is trained by the training data. The trained model then got tested by the test data for validating the performance of the classifier model to detect ASD class.

Effects of video-prompting using iPad on teaching leisure activities to students with multiple disabilities: A single-case experimental design study

Video-prompting has been found to be effective for teaching skills to students with severe developmental disabilities. However, there has been little research on the effectiveness of video-promoting for teaching leisure activities to students with multiple disabilities. This study evaluated the efficacy of iPad-based video-prompting for the teaching of leisure activities to high school students with multiple disabilities. A multiple-baseline design across three participants was employed to evaluate intervention effectiveness. The findings indicated that all participants were able to successfully and independently perform the leisure activity after the intervention, and the students maintained their knowledge of the learned skills after two weeks. While using video-prompting in teaching the leisure activity (listening to music), there was an immediate positive change in the three students’ performance levels in the independent completion and acquisition of the steps of listening to music activity. Therefore, it was concluded this video-prompting iPad-based instructional method was effective for teaching leisure activities to students with multiple disabilities.

Social inclusivity for children with severe intellectual and developmental disabilities: development of a 1950s school community programme

ABSTRACTThis study examines the development of a 1950s educational programme for the inclusion of children with severe intellectual and developmental disabilities (IDD) – those with IQ scores of less than 50, referred to as “trainable” or “dependent” children – into community life. Conducted by the American Association of Parents of Retarded Children (AHRC) in New York City, the programme clarified the social life expectancies of children with severe IDD who had historically been segregated from society. The programme aimed to have these children be accepted within their communities and families, broaden their lives, and help their parents understand them appropriately. It affirmed the notion that children with severe IDD and their families could live in society with support. In other words, the goal was not just vocational independence but also the pursuance of a social life while receiving community services. The intended outcomes of the programme included personal independence, housework, good relations with others, physical movement, and literacy, among others. Although the programme was unique and thus different from traditional academic learning content, it was emphasised that the original goals of education for children with severe IDD and that of mainstream education are the same in the sense of realising democracy. The education and guidance necessary for them to grow to their fullest potential and integrate into community life could also lead to academic and vocational outcomes. The development of the school programme represented the beginning of what became known as social inclusion, thereby bringing diversity to social life and education.

Respect for conscientious judgement in health care.

Respect for conscientious judgement in health care.

특수학교 학부모의 발달장애 자녀 양육 경험과 지원 요구 탐색: 일상생활기술을 중심으로

This study involves a focus group interview(FGI) conducted to explore the experiences and support needs of parents of children with developmental disabilities(DD) in a special school, with particular emphasis on daily living skills(DLS). Eight parents participated in the interviews using Zoom, a live online video conferencing program. We transcribed the content from the two interviews into a 36-page Hancom Hanword(hwp) document and analyzed them using thematic analysis. The analysis results derived 3 domains, 11 subordinate domains, and 34 meaning units. First, the difficulties of raising a child with developmental disabilities were mainly related to growth, developmental problems, unacceptable behavioral characteristics, and non-consistent surroundings. Second, in terms of family’s ability to access education, the main focus was on mental health clinic medications, special education related services, and practical experience and feedback on the implementation of ABA in families. Third, as suggested by parenting experiences, the support needs included consistent teaching of DLS from an early age and strengthening ‘special education’ such as support for severe developmental disabilities, as well as specifying parental education, improving teacher professionalism, and developing a system of cooperation and support. Based on the results of the study, a discussion and suggestions for the practical improvement of DLS for children with DD are discussed.

Comparing Health Status and Access to Preventive Healthcare in Persons with Severe Intellectual and Developmental Disabilities by Age

Comparing Health Status and Access to Preventive Healthcare in Persons with Severe Intellectual and Developmental Disabilities by Age

Transverse Vaginal Septum Resection: Technique, Timing, and the Utility of Dilation. A Scoping Review of the Literature.

Transverse vaginal septae (TVS) are congenital, obstructive anomalies of the vagina typically presenting with abdominal pain and amenorrhea. Currently, the literature about surgical management is sparse. Postoperative complications are common. Vaginal dilation either pre- or postoperatively is sometimes recommended, the outcomes of which are poorly described. The aim of this scoping review was to guide surgical planning, namely, timing and postoperative care, to improve surgical outcomes. This scoping review followed the Joanna Briggs Institute framework. The population of interest was patients 21 years of age or younger with a TVS. MEDLINE, OVID and CINAHL databases were searched using the subject headings listed herein. Literature written in English and French were included. Excluded were reports on patients with concurrent urogenital anomalies or severe developmental disabilities. The resultant articles were reviewed by 2 independent researchers. A third researcher was used in cases of disagreement. Using a descriptive analytical method, data were extracted from the included articles. We screened 1441 articles for eligibility; 41 articles met criteria, which described 152 cases of TVS. The most common management was simple vaginal excision. Five studies included outcomes from preoperative dilation, and 11 from postoperative dilation. There were 21 cases of postoperative vaginal stenosis; half (11/21) occurred without postoperative dilation. The goal of this review was to describe how TVS are managed and provide guidance for management options. Although the literature was sparse, the authors believe that management in a tertiary center, and surgical delay until the patient is ready to participate in vaginal dilation will improve outcomes for patients with TVS. Further prospective studies are needed to guide surgical planning.