Developmental Disabilities Research Articles

Optimizing Dental Care for Adults With Intellectual and Developmental Disabilities: Challenges, Strategies, and Preventative Approaches

Optimizing Dental Care for Adults With Intellectual and Developmental Disabilities: Challenges, Strategies, and Preventative Approaches

Negative and Positive Experiences During the COVID-19 Pandemic in Canadians With Developmental Disabilities: AOne-Year Ontario-Based Survey.

Understanding the experiences of people with developmental disabilities during the initial period of COVID-19 pandemic. Individuals with developmental disabilities and their caregivers completed baseline and up to five follow-up online surveys using the CRISIS-AFAR measures, between July 2020 and September 2021. We used qualitative (thematic analysis) and quantitative (MANOVA) analytic methods. One hundred and eighteen participants (64 caregivers on individuals 6-62 years, 54 self-reporting individuals aged 17-55 years) completed baseline survey; 46 participants (23 caregivers, 23 self-reporting adults) completed ≥1 follow-up. Qualitative themes included uncertainty, and negative and positive influences on behaviours and routines, daily life and mental wellness. Those experiencing positive impacts did not stably perceive so longitudinally. Despite both negative and positive influences on individuals with developmental disabilities and their families, the prolonged pandemic had wide-ranging repercussions. Emergency preparedness planning should consider the disruptive effects of public health measures on routine and support for this vulnerable population.

Digital motor intervention effects on motor performance of individuals with developmental disabilities: a systematic review.

Individuals (i.e. children/young adults) with developmental disabilities (DDs) and intellectual disabilities (IDs) often display a variety of physical and motor impairments. It is well known that participation in motor activities can positively impact the development of children's cognitive and social skills. Recently, virtual and digital technologies (e.g. video conferencing applications, virtual reality and video gaming) have been increasingly used to promote better physical/motor outcomes. The efficacy of digital technologies in improving motor outcomes for those with DD/ID varies depending on the technology and population, and the comparative effects of various technologies are unknown. The aim of our study is to conduct a systematic review to comprehensively examine the quantitative and qualitative results of current studies reporting the efficacy of digitally based motor interventions on motor outcomes in individuals with DD/ID. Literature published from 1900 to 2024 was searched in four health sciences databases: PubMed, PsycINFO, Scopus and CINAHL. Articles that examined the effects of gross motor/physical activity training using technologies such as exergaming (i.e. exercise through video gaming such as the Wii and Xbox Kinect), virtual reality or telehealth video conferencing applications (i.e. Zoom, Webex or mobile health apps) on the standardised or game-specific gross motor performance of individuals with DD/ID diagnoses that do not typically experience significant walking challenges using experimental or quasi-experimental study designs were included. Thirty relevant articles were retrieved from a search of the databases PubMed (914), PsycINFO (1201), Scopus (1910) and CINAHL (948). Our quantitative synthesis of this published literature suggests strong and consistent evidence of small-to-large improvements in motor skill performance following digital movement interventions. Our review supports the use of digital motor interventions to support motor skill performance in individuals with DD without ID. Digital technologies can provide a more engaging option for therapists to promote motor skill development in individuals with DD or for caregivers to use as an adjunct to skilled therapy.

“I Would Not Change [My] Sibling for the World, Maybe the World Can Change for My Sibling”: The Experiences of Adult Siblings of People With Developmental Disabilities

ABSTRACTThe sibling relationship is complex, unique and important. When one sibling has a developmental disability, siblings can be important sources of care, support, advocacy and friendship for one another. We drew on online survey data from 456 UK adult siblings of people with DD. Siblings provided written responses to a prompt about their sibling experiences (> 80,000 words). These data were analysed using qualitative content analysis and organised using the Siblings Embedded Systems Framework (SESF). The SESF helps us to consider how complex interacting mechanisms and factors surrounding siblings, families and wider systems at a local, national and international level, can influence siblings' outcomes, experiences and relationships. Overall, siblings shared a range of experiences related to their: mental health and wellbeing; personal characteristics; sibling relationships; intra‐familial experiences; caring experiences; experiences accessing support services; community experiences; and views on the discrimination and ableism that their disabled siblings experienced. Siblings reflected on the interconnected and dynamic nature of their experiences. We found the SESF to be a useful way of presenting an account of the data overall, as well as to explore the impact of societal factors on siblings' experiences. Siblings' structural, political and social contexts impacted their personal lives. Please refer to the Supporting Information section to find this article's Community and Social Impact Statement.

Emotional Health Assessment in Students With Intellectual and Developmental Disabilities.

Students with intellectual and developmental disabilities (IDD) are likely to experience psychiatric symptoms, like depression, anxiety, and distress, throughout their lifetime. Due to communication differences and minimal use of specialized diagnostic assessments for anxiety and depression, emotional pain can often be overlooked or underestimated in students with IDD. This is often complicated by atypical presentations of anxiety and depression, such as externalized aggression, self-injurious behaviors, or other behavioral dysregulation, that can indicate emotional distress, physical pain, or other medical complications. School nurses play an important role in assessing for emotional and physical pain in students with IDD using assessment tools currently available and clinical judgment. Tools that have been created for use in this population may account for the diversity of communication, sensory, and developmental differences in students with IDD. Through leading education and advocacy for the interprofessional school team, school nurses can increase the access that students with IDD have to equitable emotional health evaluations and services. School nurses can also promote emotional wellness for students with IDD through the incorporation of mindful and community activities in the care plan.

Acoustic features of vocalizations in typically developing and autistic infants in the first year

We describe acoustic patterns across the five most prominent vocal types in typically developing infants (TD) and compare them with patterns in infants who develop autism (ASD) or a developmental disability (DD) not related to autism. Infant-directed speech (IDS) is a potentially important influence on such vocal acoustic patterns. Both acoustic patterns and effects of IDS are important for understanding the earliest origins of communication disorders. To compare duration, pitch and loudness of infant vocalizations for three groups of infants (TD, ASD, DD) in circumstances with high or low amounts of IDS. Two five-minute segments from each of 1259 all-day recordings across the first year were coded and acoustically analyzed for three groups of infants (130 TD, 44 ASD, 21 DD). Duration, mean fundamental frequency, and root mean square amplitude were determined for >162,000 infant utterances. Cries were longest and loudest, and vowel-like sounds were shortest of the five vocal types in all groups. TD infants showed significant alterations in vocal acoustics during periods of high IDS. Strong similarities in acoustic patterns occurred across the three groups, but only the TD group showed significant acoustic effects of IDS.

Airway management in infants with Robin sequence in the United Kingdom and Ireland: A prospective population-based study.

There is currently no consensus about managing upper airway obstruction (UAO) in infants with Robin sequence (RS), in terms of treatment efficacy or clinical outcomes. This study describes UAO management in UK/Ireland, and explores relationships between patient characteristics, UAO management, and clinical outcomes in the first 2 years of life. Active surveillance of RS throughout UK/Ireland via the British Paediatric Surveillance Unit and nationally commissioned cleft services. Clinical data were collected at initial notification and 12-month follow-up. 173 infants with RS were identified, of which 47% had additional congenital anomalies or an underlying syndrome (non-isolated RS). Two-thirds (n = 119) required an airway intervention other than prone positioning: non-surgical in 84% and surgical (tracheostomy) in 16%. Nasopharyngeal airway (NPA) was the most common intervention, used in 83% (n = 99) for median 90 days (IQR 136). Surgical UAO management was associated with prolonged hospital admission, higher prevalence of neurodevelopmental delay (NDD), lower weight-for-age z-scores, and delayed oral feeding. These findings were not attributable to a higher prevalence of non-isolated RS in this group. Although more commonly associated with non-isolated RS, growth faltering was also identified in 48%, and NDD in 18%, of cases of isolated RS. In UK/Ireland, most infants with RS are managed with NPA, and tracheostomy is reserved for refractory severe UAO. Clinical outcomes and duration of use indicate that NPA is a safe and feasible first-line approach to UAO. Longitudinal assessment of neurodevelopment and growth is imperative, including in children with isolated RS. Current variations in practice reinforce the need for evidence-based treatment guidelines.

Social entrepreneurship – inclusive disability employment in the UAE

This paper explored the transition of a disability inclusive employment programme in a private landscaping company into a standalone social enterprise ENABLE, offering horticultural training and sustainable jobs for individuals with intellectual and developmental disabilities (IDD). The research question that guided this study is: How did ENABLE evolve from a sheltered employment programme into a social enterprise that provides sustainable employment for persons with IDD? And what is the prevailing influence on the employees and the society at large? Through qualitative descriptive analysis, we explored ENABLE's development, operations, and community influence. Multiple data collection methods were utilized including semi-structured interviews with key employers, observation of employees with IDD during their working hours, and analysis of related documents. By critically analysing this journey, this study contributes to the literature on entrepreneurial inclusive employment for individuals with IDD, addressing challenges faced by organisations that support disability employment in the UAE and beyond.

Mapping the diagnostic odyssey of congenital disorders of glycosylation (CDG): insights from the community

BackgroundCongenital disorders of glycosylation (CDG) are a group of rare metabolic diseases with heterogeneous presentations, leading to substantial diagnostic challenges, which are poorly understood. Therefore, this study aims to elucidate this diagnostic journey by examining families’ and professionals’ experiences.Results and discussionA questionnaire was designed for CDG families and professionals, garnering 160 and 35 responses, respectively. Analysis revealed the lack of seizures as a distinctive feature between PMM2-CDG (11.2%) with Other CDG (57.7%) at symptom onset. Hypotonia and developmental disability were prevalent symptoms across all studied CDG. Feeding problems were identified as an early onset symptom in PMM2-CDG (Cramer’s V (V) = 0.30, False Discovery Rate (FDR) = 3.8 × 10− 9), and hypotonia in all studied CDG (V = 0.34, FDR = 7.0 × 10− 3). The average time to diagnosis has decreased in recent years (now ~ 3.9 years), due to advancements namely the increased use of whole genome and exome sequencing. However, misdiagnoses remain prevalent (PMM2-CDG – 44.9%, non-PMM2-CDG – 64.8%). To address these challenges, we propose adapting medical training to increase awareness of CDG and other rare diseases, ongoing education for physicians, the development of educational resources for relevant medical units, and empowerment of families through patient organizations and support networks.ConclusionThis study emphasizes the crucial role of community-centered research, and the insights families can offer to enhance CDG management. By pinpointing existing gaps and needs, our findings can inform targeted interventions and support systems to improve the lives of those impacted by CDG.

Transfers Among Vulnerable Long-Term Nursing Home Residents

ObjectivesTo determine whether the risk of nursing home-to-nursing home transfer is higher among long-term nursing home residents with intellectual and developmental disabilities (IDD), or serious mental illness (SMI), and/or Alzheimer's disease and related dementias (ADRD), relative to residents without these clinical diagnoses, and to assess the factors associated with transfer overall and for residents with these diagnoses. DesignCross-sectional cohort study of nursing home residents in 2019. Setting and ParticipantsMichigan long-term nursing home residents identified from the Minimum Data Set. MethodsResidents who had a nursing home-to-nursing home transfer were allocated into 5 groups: IDD, SMI and ADRD, ADRD, SMI, and all others. We examined transfer rates for each group. We assessed the odds of transfer for each group, adjusting for resident and nursing home characteristics, and behavioral issue and clinical indicators. We used stratified logistic regression to determine factors associated with transfers within each group. ResultsAmong 37,638 long-term nursing home residents, 2.3% had a nursing home-to-nursing home transfer. Transfers varied across diagnosis groups: 1.9% in IDD, 2.8% in SMI and ADRD, 1.9% in ADRD, 2.6% in SMI, and 2.5% in all others. After adjustment, residents in the SMI and ADRD group were 39% more likely to transfer than those in the all others group (adjusted odds ratio, 1.39; 95% CI, 1.14–1.68). Age ≥75 years, moderate to severe cognitive impairment, and falls were associated with a lower odds of transfer. Being married and wandering were associated with a higher odds of transfer. Factors associated with transfers varied within each group. Conclusions and ImplicationsAmong Michigan long-term nursing home residents, residents with both SMI and ADRD are at the highest risk for transfer to another nursing home when compared with residents with SMI or ADRD alone and with IDD and none of these diagnoses. Understanding the drivers of transfer of this vulnerable group warrants further investigation.

Antisense oligonucleotides as a precision therapy for developmental and epileptic encephalopathies.

Developmental and epileptic encephalopathies (DEEs) comprise a complex spectrum of neurological disorders characterized by neurodevelopmental delay and early-onset seizures primarily caused by diverse genetic mutations. Traditional treatments have largely been symptomatic, focusing on seizure control without addressing the underlying genetic causes. The advent of gene therapy, particularly through antisense oligonucleotides (ASOs), offers a promising avenue toward targeted therapeutic interventions. ASOs by virtue of their ability to modulate gene expression at the mRNA level represent a sophisticated approach to counteract the effects of pathogenic mutations. This review delves into the recent advancements in ASO technology, highlighting its application in preclinical and clinical settings for DEEs. We present evidence of the efficacy of ASOs in ameliorating disease phenotypes invitro and invivo, alongside promising outcomes from ongoing clinical trials. The therapeutic landscape for DEEs is on the cusp of significant transformation, underscored by the potential of ASOs to offer precise, personalized, treatments that extend beyond symptomatic relief to potentially rectify the genetic underpinnings of these disorders.

Do gender stereotype threats have a spillover effect on motor tasks among children? A mixed-model design investigation

ObjectivesThe stereotype threat effect has captivated social and sports psychology researchers for over two decades. However, many questions remain unanswered. This research was designed to explore the spillover effects of stereotype threat in motor tasks. DesignA mixed model design with within-between-subjects was utilized, with soccer performance and throwing scores serving as the dependent variables. MethodForty-two 10-year-old girls without mental or physical disabilities participated in the study and were randomly assigned into two groups: stereotype threat (ST) and nullified stereotype threat (NST). After measuring baseline performance in throwing and soccer tasks, the participants in the ST group received soccer-based stereotype induction. Afterwards, they performed 20 trials of soccer shooting. Half an hour later, the children were asked to perform 10 throws with the non-dominant hand. ResultsOur results indicated that inducing soccer-based stereotypes towards girls led to underperformance in soccer, however, this negative effect did not spill over onto subsequent task (i.e., throwing) which was unrelated to the induced stereotype. ConclusionsOur finding regarding the stereotype threat spillover effect is novel and provides more insight into the range of effects of stereotype threat within the motor domain. The findings encourage the researcher to practice caution regarding the generalizability of the stereotype threat spillover effect, especially in motor tasks.

Inclusive Strategies for Children With Developmental Disabilities in Mainstream Classrooms in African Countries: A Systematic Review of Stakeholder Experiences, Attitudes, and Perspectives

African children with developmental disabilities (DD), including autism and intellectual disability, are often excluded from mainstream schools. We systematically reviewed 28 qualitative studies conducted in Africa, aiming to synthesize stakeholders’ perspectives on inclusive teaching strategies for supporting children with DD in mainstream classes. Six interrelated themes were developed using thematic analysis. Teachers strived to meet learners’ needs through teaching and task adaptations (Theme 1) and provide targeted support, reinforcement, and feedback (Theme 2). Teachers’ inclusive pedagogies, while sometimes creating divisions, often reflected a whole-class approach (Theme 3), especially in promoting inclusive environments (Theme 4) and engaging teaching (Theme 5). Authors of reviewed studies often discussed how teachers’ strategies fit in with the evidence base (Theme 6). While teachers’ inclusion efforts appeared progressive, they were mostly based on Western pedagogies and challenged by limited resources and training. Training efforts based on indigenous pedagogies could improve use and outcomes of inclusive strategies.

Voluntary Attention Assessing Tests in Children with Neurodevelopmental Disorders Using Eye Tracking

Background/Objectives: The development of techniques for assessing cognitive functions using eye tracking is particularly important for children with developmental disabilities. In this paper, we present pilot results from the validation of two methods for assessing voluntary attention based on eye tracking. Methods: The study involved 80 children aged 3 to 8 years with neurodevelopmental disorders. Children performed two eye-tracking tests in which they had to ‘catch’ a stimulus by looking at it. They also completed the Attention Sustained subtest of the Leiter-3 International Performance Scale. In the first test, the stimuli were presented at different locations on the screen in subtests with stimuli onset asynchrony of 2 s and 1 s. A translucent blue marker marked the position of the gaze on the screen. The number of trials in which the gaze marker approached the stimulus was determined. In the second test, the location of the stimuli on the screen was changed based on gaze fixation in the ROI area. The time taken to complete the task was evaluated. Results: The results of both eye-tracking tests showed significant correlations with scores on the Attention Sustained Leiter-3 subtest and significant test–retest reliability. Conclusions: The results indicate that the present eye-tracking tests can be used for assessing voluntary attention in children with some neurodevelopmental disorders, and further research is warranted to assess the feasibility of these tests for a broader range of developmental disorders. Our findings could have practical implications for the early intervention and ongoing monitoring of attention-related issues.

Review of Regular Exercise Participation on Health Physical Fitness and Exercise Effects in University Students with Developmental Disabilities

Review of Regular Exercise Participation on Health Physical Fitness and Exercise Effects in University Students with Developmental Disabilities

Health Promotion for Stroke Patients at Grandmed Lubuk Pakam Hospital

Stroke is a major health problem for modern society today. Nowadays, stroke is increasingly becoming a serious problem faced almost all over the world. This is because a sudden stroke can result in death, physical and mental disability in both productive and elderly age. This research is to determine the role of health promotion on the motivation of stroke patients in receiving physiotherapy services at Grandmed Lubuk Pakam Hospital. This research is qualitative research which aims to explore a problem with detailed limitations, as well as collecting in-depth data. The number of informants in this study was 4 people. Data collection was carried out using an in-depth interview method equipped with a voice recording device with 4 informants. The principle of health promotion here is that the patient and the patient's family are able to understand or understand what is conveyed by the promotion officer which can then influence interest in doing or coming to health services. every patient or patient's family who is targeted can receive the promotion well. Grandmed Lubuk Pakam Hospital health promotion is emerging as a forum that leads or guides towards health prosperity for patients and their families. By emphasizing knowledge about the impact of stroke until post-stroke and how to function, the body can move freely as before. providing more interesting and creative methods or means so as to attract the attention and interest of patients and the patient's family to listen and understand more easily and more pleasantly.

Family Support and Disability Policies: Perspectives of Siblings of People With Intellectual and Developmental Disabilities

Given the critical shortage of community providers and a growing aging population of individuals with intellectual and developmental disabilities, siblings are expected to provide caregiving for their brothers and sisters with intellectual and developmental disabilities. However, family support and disability policies often do not acknowledge siblings as caregivers who need support, and thus, do not include siblings’ voices. In this study, we conducted a national, web-based survey to examine the perspectives of 611 siblings of individuals with intellectual and developmental disabilities. Specifically, we examined their perceptions toward family support and disability policy as well as their knowledge and relevance of such legislation. Overall, siblings were not well-informed with relevant family support and disability policies. Furthermore, the knowledge of policies was only associated with their feelings of connectedness to the disability community. Based on these findings, it seems necessary that siblings are included in future efforts to shape family support and disability policy.

Long COVID Is Associated with Decreased Quality of Life and Increased Mental Disability

COVID-19’s impact on quality of life (QoL) has been studied; however, data on the effects of long COVID on QoL and mental disability remain limited. This study aimed to investigate whether long COVID is associated with decreased QoL and increased mental disability. We analyzed data from adults (≥18 years) in the 2022 Medical Expenditure Panel Survey (MEPS). Physical and mental QoL were assessed using the Veterans RAND 12-Item Health Survey, while mental disability was measured with the Kessler Index. Long COVID was defined as experiencing COVID-related symptoms for over 3 months. To account for skewness in the outcome variables, the study employed survey-weighted generalized linear regression with a log link and gamma distribution. The analysis included 153,330,408 subjects (unweighted n = 10,975). The average age of those with and without long COVID was similar (51 vs. 52 years, p = 0.46). Subjects with long COVID had a 3% lower physical QoL (β = −0.03, p = 0.02), a 4% lower mental QoL (β = −0.04, p < 0.01), and a 26% higher mental disability score (β = 0.26, p < 0.01) compared to those without long COVID. These findings highlight the urgent need for targeted strategies to address long COVID and support patients in recovering their pre-COVID QoL and mental health.

A New Diversion Model Linking the Criminal Justice Process and Treatment Services for Offenders with Developmental Disabilities in South Korea

A New Diversion Model Linking the Criminal Justice Process and Treatment Services for Offenders with Developmental Disabilities in South Korea

Paediatric cerebral palsy in South Africa: Prevention and care gaps at hospital level.

Population-based data show high proportions of severe cases of cerebral palsy (CP) in resource-poor regions such as sub-Saharan Africa, where most children have potentially preventable risk factors (factors that may increase the likelihood of CP occurrence but can be mitigated through medical interventions). This study aimed to describe the demographic and clinical profile of children living with CP accessing services at Tygerberg Hospital over a period of 10 years (2010-2020), identify the potential gaps in care (proportion of individuals in a country requiring but not receiving suboptimal or inadequate care), and comparison with a similar study at the same centre two decades ago. This 10-year retrospective study investigated causes and morbidities in children with CP, attending a central hospital in the Western Cape, South Africa. A total of 613 children with CP were identified. Perinatal causes were predominant, especially in 57.7% (n = 354) of the cohort: perinatal asphyxia (41.1%) and preterm birth (16.6%). Postnatal causes constituted 15.2% (n = 93), which included tuberculous meningitis (3.6%) and bacterial meningitis (3.6%). The most common complications were intellectual impairment (61.8%; n = 379); epilepsy (30.8%; n = 189) and visual impairment (54.7%; n = 234). A third of the cohort had severe CP, classified as Gross Motor Function Classification System IV and V (38%). Most of the previously documented main drivers of CP are still present and the implementation of healthcare prevention strategies remains inadequate. This study provides longitudinal evidence to confirm that CP in a South African setting is associated with a high burden of potentially preventable causes.