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Purpose: For children with neurodevelopmental disabilities (CWNDs), early diagnosis that leads to early intervention with regular targeted therapies is critical. In Qatar, private therapy centres that address this demand often have highly exclusive prices restricting families from availing them. This paper examines the challenges faced by families with CWNDs, as well as various financial and systemic obstacles, from the vantage point of these centres, all of which culminate in an extraordinarily high disability price tag for disability families in Qatar. Methods: This study is based on qualitative, semi-structured, and in-depth interviews with private therapy centres and developmental paediatricians. Results: Therapy centre representatives expressed common struggles in lengthy and cumbersome administration and licencing procedures, difficulty in hiring and retaining high quality staff, and expenses that need to be paid to the state. From their experience, families largely struggle with delayed diagnoses that significantly slow down intervention plans and therapies as well as staggeringly high financial costs with a dearth of funding options. Conclusions: We recommend sincere engagement, dialogue, and cooperation between multiple stakeholders; a supportive ecosystem to balance and distribute the demand that includes schools and parents; as well more efficient administrative procedures and recruitment strategies. [ABSTRACT FROM AUTHOR]

Children with neurodevelopmental disabilities are among the most vulnerable to experiencing exclusion from community settings. Informal education settings (IES), such as camps, museums, and zoos, provide rich learning opportunities beyond the classroom, yet inclusion efforts have primarily focused on physical accessibility. A review of research is needed to identify practices that support the participation of children with neurodevelopmental disabilities in these settings. We used a scoping review framework to determine what research exists concerning the participation of individuals with neurodevelopmental disabilities in informal education settings, what practices are used to foster participation in informal education settings for children with neurodevelopmental disabilities and what are the outcomes of these practices on participation. Forty-six studies using quantitative, qualitative, and mixed methods designs were included, with 24 taking place in inclusive settings or programs. The review found that children with neurodevelopmental disabilities continue to experience barriers to inclusion in informal settings, and there are positive outcomes associated with specialized and therapeutic as well as inclusive camps. Moreover, behavioural supports result in increases in social skills and decreases in interfering behaviour in informal settings and caregivers and children with neurodevelopmental disabilities have positive attitudes toward specialized programming. Encouraging and sustaining a variety of options, including inclusive and specialized programs, is likely to support and enhance inclusion. Future studies on inclusive practices in IES should include measures of the degree and quality of participation, including measures of the subjective experiences of participants. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic has strained the resources of the world's healthcare systems. Most individuals with neurodevelopmental disabilities (NDDs) experience significant mental health issues and face substantial barriers in accessing appropriate supports which have been exacerbated during the pandemic. It is unknown the extent to which COVID-19 impacted the demand for and effectiveness of inpatient care for those with NDDs. The impact of COVID-19 on the number of admissions of youth with NDDs to pediatric inpatient psychiatry units, as well as their functioning and length of stay during the first two years of the pandemic was analyzed using Bayesian structural time series models. Admission data of youth with NDDs from four pediatric inpatient units in Alberta, Canada (n = 2144) was examined. Inpatient admissions of youth with NDDs significantly increased following the onset of the pandemic. Compared to the period prior to the pandemic, patients with NDDs had significantly worse overall functioning and received fewer days of treatment. These findings highlight the need for increased resources to support the mental health needs of this vulnerable population and are consistent with other studies in the general population examining the utilization of inpatient psychiatric units during the pandemic. [ABSTRACT FROM AUTHOR]

The current study aims to explore parents and service providers' attitudes towards the social inclusion of people with neurodevelopmental disabilities into society, through exercising their rights in various financial transactions and personal status matters in the State of Qatar. Additionally, the study aims to explore any differences in the participants' attitudes towards social inclusion based on their role, gender and the child's disability type. Eighty-two service providers (46 Female) and sixty-five parents (40 Female) of children with Intellectual Disability or Autism Spectrum Disorder participated in this study. They completed the Attitudes towards social inclusion of people with disabilities (ASIPD) Scale. Findings showed that the participants believe that the Shari'ah (Islamic law) places a high premium on the social inclusion of the people with neurodevelopmental disabilities and predates various modern theories on the subject. In addition, the Islamic law permits the persons with mild neurodevelopmental disabilities to engage in many contracts in the realms of financial transactions and personal status. Parents and service providers have neutral to positive attitudes towards social inclusion of people with neurodevelopmental disabilities in terms of performing some financial transactions and some personal status rights like marriage and divorce according to severity of disability. Results were discussed and further recommendations were provided. [ABSTRACT FROM AUTHOR]

Neurodevelopmental disabilities in children, affecting personal, social, academic, or occupational functioning, present a global challenge. Neurodevelopmental issues contribute significantly to learning disabilities, emphasizing the need for early intervention. The Rashtriya Bal Swasthya Karyakram (RBSK), a government program launched in 2013, is a multidisciplinary initiative addressing child health. This article compares three distinct approaches – multidisciplinary, interdisciplinary, and transdisciplinary – in the context of early intervention. Multidisciplinarity utilizes knowledge from various disciplines, while interdisciplinarity synthesizes links between disciplines, and transdisciplinarity integrates sciences beyond traditional boundaries. Challenges in early intervention, particularly with RBSK, include limited awareness and accessibility, necessitating ongoing efforts and innovations. This study concludes by emphasizing the transformative potential of embracing innovative solutions to create a more inclusive and equitable future for children with neurodevelopmental difficulties and their families. [ABSTRACT FROM AUTHOR]

Background/Aim: It is well known that caregivers of children with neurodevelopmental disabilities (NDD) face challenges. These challenges increased further due to the coronavirus disease 2019 (COVID-19) pandemic and the related restrictions. There was very little data from India on these challenges. This study was done with the primary aim to gain insights about the challenges faced by parents of children with NDD through their personal stories. Methods: Participants were recruited using purposive sampling method and semi-structured interviews were conducted through a telephone or in person. Data saturation was achieved by the sixth participant and 2 more interviews were performed for further confirmation. Interviews were transcribed, and a 7-step Colaizzi's phenomenological method was used to identify different themes. Results: The impact of COVID-19 on caregivers of children with NDD can be summarized into 4 broad themes. First, there were challenges related to "therapy" which included closure of day-care centers and schools, inaccessibility to professionals, and disruption in home-based learning. Second, there were "child" related challenges which included inappropriate behaviors. Third, there were "family" challenges which included misunderstandings between parents and difficulties in adhering to family routines. Lastly, there were "personal" challenges related to physical and psychological health. Conclusion: The personal stories of caregivers of children with NDD highlight the pressing need to provide appropriate support and formulate holistic models to enhance well-being of caregivers during difficult periods. [ABSTRACT FROM AUTHOR]

ObjectivesThe cognitive and social benefits of bilingualism for children, including those with neurodevelopmental disabilities (NDDs), have been documented. The present study was designed to characterize and compare English and Spanish use in Hispanic families with and without NDDs residing in the U.S. as well as to understand parental perceptions of their child's bilingualism and of community and professional support.MethodsWe conducted an online survey of 84 Spanish-speaking parents of 4- to 24-year-olds with (n = 44) and without NDDs (n = 40) who were born in and living in the U.S.ResultsWe found that bilingualism was a desired goal for 95% of our families. We also found, however, that 17.1% of parents of children with NDDs have raised them as monolinguals English-speakers, as they thought there were reasons for that, while all families from the NT group raised their children in both languages. In addition, nearly 40% of the NDD children only speak English, compared to a 5% in the NT group. Finally, parents of children with NDDs cite a lack of support for bilingualism in the community (47.6% do not feel supported, compared to a 7.9% in the NT group) and recommendation from professionals as major factors for not raising their children as bilingual.ConclusionsThe results suggest a need to educate professionals from many disciplines about the benefits of bilingualism for children with NDDs and for implementation of inclusion policies that provide access to dual-language programs.

Neurodevelopmental disabilities in children, affecting personal, social, academic, or occupational functioning, present a global challenge. Neurodevelopmental issues contribute significantly to learning disabilities, emphasizing the need for early intervention. The Rashtriya Bal Swasthya Karyakram (RBSK), a government program launched in 2013, is a multidisciplinary initiative addressing child health. This article compares three distinct approaches – multidisciplinary, interdisciplinary, and transdisciplinary – in the context of early intervention. Multidisciplinarity utilizes knowledge from various disciplines, while interdisciplinarity synthesizes links between disciplines, and transdisciplinarity integrates sciences beyond traditional boundaries. Challenges in early intervention, particularly with RBSK, include limited awareness and accessibility, necessitating ongoing efforts and innovations. This study concludes by emphasizing the transformative potential of embracing innovative solutions to create a more inclusive and equitable future for children with neurodevelopmental difficulties and their families.

Abstract Sleep disorders are very common across neurodevelopmental disorders and place a large burden on affected children, adolescents, and their families. Sleep disturbances seem to involve a complex interplay of genetic, neurobiological, and medical/environmental factors in neurodevelopmental disorders. In this review, we discuss animal models of sleep problems and characterize their presence in two single gene disorders, Rett Syndrome, and Angelman Syndrome and two more commonly occurring neurodevelopmental disorders, Down Syndrome, and autism spectrum disorders. We then discuss strategies for novel methods of assessment using wearable sensors more broadly for neurodevelopmental disorders in general, including the importance of analytical validation. An increased understanding of the mechanistic contributions and potential biomarkers of disordered sleep may offer quantifiable targets for interventions that improve overall quality of life for affected individuals and their families.

Although access to effective medical care for acutely sick children has improved globally, the number of children surviving but who may not be thriving due to disability, is increasing. This study aimed to understand the views of health professionals, educators and caregivers of pre-school children with disabilities in Malawi, Pakistan and Uganda regarding early identification, referral and support. Using applied thematic analysis, we identified themes relating to; limited 'demand' by caregivers for services; different local beliefs and community perceptions regarding the causes of childhood disability. Themes relating to 'supply' of services included inability to respond to community needs, and inadequate training among professionals for identification and referral. Stepwise, approaches provided to the families, community health worker and higher-level services could include training for community and primary care health workers on basic identification techniques and enhanced awareness for families and communities on the importance of early identification of children with disabilities. Lack of collaboration between the community and health services may lead to entrenched pessimistic views of what can be done to support children with disabilities - generating a greater mistrust and low parental take-up of vital health services. If parents do not receive help at the community and clinic level, then, there is a need to move away from trying to provide a 'specific diagnosis' to working more on a level of assessing the child's functioning in terms of what their limitations are and how they can be addressed. Any identification and referral programme needs to consider the varying local beliefs, the stigma of having a child with a disability and feelings of blame, right from the start. A stepwise, incremental approaches, ranging from the provision of basic information, such as using brief materials highlighting 'red flag' milestones and conditions which are linked to guidance for support to families, community health workers, as well as higher levels of medical services, are likely to work best. [ABSTRACT FROM AUTHOR]

Sleep disorders are very common across neurodevelopmental disorders and place a large burden on affected children, adolescents, and their families. Sleep disturbances seem to involve a complex interplay of genetic, neurobiological, and medical/environmental factors in neurodevelopmental disorders. In this review, we discuss animal models of sleep problems and characterize their presence in two single gene disorders, Rett Syndrome, and Angelman Syndrome and two more commonly occurring neurodevelopmental disorders, Down Syndrome, and autism spectrum disorders. We then discuss strategies for novel methods of assessment using wearable sensors more broadly for neurodevelopmental disorders in general, including the importance of analytical validation. An increased understanding of the mechanistic contributions and potential biomarkers of disordered sleep may offer quantifiable targets for interventions that improve overall quality of life for affected individuals and their families. [ABSTRACT FROM AUTHOR]

Investigating asthma as an effect modifier between adverse birth outcomes and neurodevelopmental disabilities (NDDs) across different races is crucial for tailored interventions and understanding variable susceptibility among diverse populations. Data were collected through the National Survey of Children's Health. This cross-sectional study included 131,774 children aged 0 to 17 years. Study exposures comprised adverse birth outcomes including preterm birth and low birth weight. Weighted prevalence estimates and odds ratios with 95% confidence intervals (CIs) among children with and without adverse birth outcomes were calculated for NDDs including attention-deficit/hyperactivity disorder, autism spectrum disorder, cerebral palsy, seizure, and several others including behavior problems. Adjusted odds ratios were stratified by asthma status and separate interactions were assessed for each outcome. Of 131,774 participants, 10,227 were born low birth weight (9.12%; 95% CI: 8.77% to 9.49%), 14,058 were born preterm (11.35%; 95% CI: 10.94% to 11.76%), and 16,166 participants had asthma (11.97%; 95% CI: 11.58% to 12.37%). There were 68,100 males (51.11%), 63,674 females (48.89%), 102,061 non-Hispanic Whites (NHW) (66.92%), 8,672 non-Hispanic Blacks (NHB) (13.97%), and 21,041 participants (19.11%) categorized as other. NHB children with adverse birth outcomes had higher prevalence of several NDDs compared to NHW children. Asthma was not shown to be an effect modifier of the association between adverse birth outcomes and NDDs. Nevertheless, these results suggest that NDDs are more prevalent within US children with adverse birth outcomes, with higher rates among NHB compared to NHW children. These findings support screening for NDDs in pediatric health care settings among patients with adverse birth outcomes, particularly among those from ethnic minority backgrounds. [ABSTRACT FROM AUTHOR]

IntroductionTelehealth is an important tool in helping to provide services for hard-to-reach populations. One population that might benefit from telehealth are individuals with fragile X syndrome (FXS). Although FXS is the leading inherited cause of intellectual disability, it is nonetheless a low incidence disorder. Individuals with FXS and their families are involved in research studies, clinical trials and receive interventions - many of which are only offered in a few locations in the United States and thus, not easily accessible to many families. The current project explored the feasibility of using telehealth procedures to collect multimodal behavioural and psychological assessment data from these families.MethodsParticipation in the current study involved online surveys, measures of physiological indices of stress, live interviews and observations of mother-child interactions conducted via distance videoconferencing using the family's own technology when possible. Across all modes of data collection, we obtained information regarding the feasibility of participating entirely via distance by documenting missing data as well as each mother's overall impression of participating via distance.ResultsOur telehealth procedures were successfully implemented across a wide range of technology platforms with limited difficulty, and we documented little missing data due to technology-related challenges. Perhaps most importantly, however, our sample of mothers reported high satisfaction with participating via distance.DiscussionThese findings suggest that a wide range of services and types of assessments may be amenable to telehealth procedures. Further, the findings have immediate applications as the field shifts towards telehealth due to the coronavirus disease 2019 (COVID-19) pandemic.

Angelman Syndrome is a rare neurodevelopmental disorder characterized by developmental delay, lack of speech, seizures, intellectual disability, characteristic behavior, and movement disorders. Clinical gait analysis provides the opportunity for movement quantification to investigate an observed maladaptive change in gait pattern and offers an objective outcome of change. Pressure-sensor-based technology, inertial and activity monitoring, and instrumented gait analysis (IGA) were employed to define motor abnormalities in Angelman syndrome. Temporal-spatial gait parameters of persons with Angelman Syndrome (pwAS) show deficiencies in gait performance through walking speed, step length, step width, and walk ratio. pwAS walk with reduced step lengths, increased step width, and greater variability. Three-dimensional motion kinematics showed increased anterior pelvic tilt, hip flexion, and knee flexion. PwAS have a walk ratio more than two standard deviations below controls. Dynamic electromyography showed prolonged activation of knee extensors, which was associated with a decreased range of motion and the presence of hip flexion contractures. Use of multiple gait tracking modalities revealed that pwAS exhibit a change in gait pattern to a flexed knee gait pattern.  Cross-sectional studies of individuals with AS show a regression toward this maladaptive gait pattern over development in pwAS ages 4-11. PwAS unexpectedly did not have spasticity associated with change in gait pattern. Multiple quantitative measures of motor patterning may offer early biomarkers of gait decline consistent with critical periods of intervention, insight into appropriate management strategies, objective primary outcomes, and early indicators of adverse events.

Purpose For children with neurodevelopmental disabilities (CWNDs), early diagnosis that leads to early intervention with regular targeted therapies is critical. In Qatar, private therapy centres that address this demand often have highly exclusive prices restricting families from availing them. This paper examines the challenges faced by families with CWNDs, as well as various financial and systemic obstacles, from the vantage point of these centres, all of which culminate in an extraordinarily high disability price tag for disability families in Qatar. Methods This study is based on qualitative, semi-structured, and in-depth interviews with private therapy centres and developmental paediatricians. Results Therapy centre representatives expressed common struggles in lengthy and cumbersome administration and licencing procedures, difficulty in hiring and retaining high quality staff, and expenses that need to be paid to the state. From their experience, families largely struggle with delayed diagnoses that significantly slow down intervention plans and therapies as well as staggeringly high financial costs with a dearth of funding options. Conclusions We recommend sincere engagement, dialogue, and cooperation between multiple stakeholders; a supportive ecosystem to balance and distribute the demand that includes schools and parents; as well more efficient administrative procedures and recruitment strategies.

Introduction: Neuronal migration disorders comprise a heterogeneous group of neurological conditions caused by abnormal neuronal positioning during brain development. We aimed to study the clinical profile, neuroimaging features, genetics, and treatment of neuronal migration disorders. Materials & Methods: This was a retrospective case series of 15 pediatric patients diagnosed with neuronal migration disorders at a tertiary care hospital over a 5 year period. Detailed clinical evaluation, neuroimaging, EEG, and genetic analysis were performed. Results: Global developmental delay and epilepsy were the most common presenting features. Neuroimaging revealed spectrum of cortical dysgenesis including pachygyria, polymicrogyria, lissencephaly, heterotopia, and schizencephaly, predominantly involving fronto-parietal regions. MRI coupled with clinical findings enabled definitive diagnosis. Genetic analysis identified mutations in PAFAH1B1, ADGRG1, DHDDS, TMTC3, and other genes. Anti-seizure medications like valproate, levetiracetam, and clobazam were the mainstay of therapy. Non-pharmacological interventions including physiotherapy, occupational therapy, and speech therapy were employed. Conclusion: This study demonstrates the diverse clinical, genetic, and radiological spectrum of neuronal migration disorders. Comprehensive evaluation along with neuroimaging and genetic analysis enables accurate diagnosis and guides management. A multimodal approach is required focusing on seizures, neurodevelopmental disabilities, and improving quality of life. [ABSTRACT FROM AUTHOR]

Children with congenital heart disease (CHD) have a higher prevalence of motor impairment secondary to brain injury, resulting in cerebral palsy (CP). The purpose of this study is to determine the prevalence of CP in CHD in a single-center cohort, stratify risk based on surgical mortality using Society of Thoracic Surgeons-European Association for Cardio-Thoracic Surgery (STAT) categories and identify risk factors. Retrospective cohort study of pediatric patients registered in the University of Florida (UF) Society of Thoracic Surgeons Congenital Heart Surgery database from 2006 to 2017 with a diagnosis of CHD who continued follow-up for more than two years at UF. A total of 701 children with CHD met inclusion criteria. Children identified to have CP were 54 (7.7%). Most common presentation was spastic hemiplegic CP with a Gross Motor Function Classification System of level 2. Analysis of surgical and intensive care factors between the two groups showed that children with CHD and CP had longer time from admission to surgery (P = 0.003), higher STAT categories 4 and 5 (P = 0.038), and higher frequency of brain injury and seizures (P < 0.001). Developmental disabilities and rehabilitation needs were significantly greater for children with CHD and CP when compared with those with CHD alone (P < 0.001). In our cohort, 7.7% children with CHD develop CP; this is significantly higher than the 2010 US population estimate of 0.3%. Our study suggests higher STAT categories, brain injury, and seizures are associated with developing CP in children with CHD. [ABSTRACT FROM AUTHOR]

Preterm birth is the leading cause of neonate mortality and the second cause of death for children under 5 years of age in the world. The neonates born with very low birth weight (

Background: Children and youth with neurodevelopmental disabilities (NDDs) and their caregivers are at a high risk of experiencing mental health challenges, that in turn can significantly affect their functioning, productivity, and quality of life. In this already vulnerable population, mental health difficulties are now more frequently reported and pronounced secondary to the isolation and uncertainties experienced during the pandemic. Our previous work has shown important mental health services' gaps for children/youth with NDDs and their families, highlighting the need to optimize and tailor existing practices. Objective: To explore mental health services' barriers, facilitators, impact, and solutions from the perspectives of HCPs and CGs, and to describe common precursors to mental health challenges in children with NDDs from the perspectives of these two groups. Methods: In a triangulation mixed-method study design embedding quantitative and qualitative approaches, participants completed a survey and a semistructured interview. Descriptive statistics and a hybrid inductive/deductive thematic approach were used for data analysis. Results: Over 700 utterances were analyzed (247 from caregivers [n = 10], 531 from clinicians [n = 16]) and included 143 and 173 statements related to the precursors and barriers/facilitators, respectively. Common precursors to mental health challenges (n = 7 categories) were identified and included reported feelings/perception of self, behavioral and physical manifestations, emotional dysregulation, and school-related factors, among others. Clinicians reported a widespread need for pediatric, family-centered mental health services and conveyed lacking mental health resources/training to meet the demand. Caregivers indicated being only moderately satisfied when care was received. Salient facilitators identified by clinicians were having an interdisciplinary team and caregiver's engagement in the therapeutic processes. Participants recommended improvements to increase accessibility to mediate the existing discrepancy between the emergence of precursors and care received; that services must target a broader population and be more comprehensive (e.g., family-centered care, addressing high-risk transition periods); and training/toolkits to support clinicians' evidencebased practice. [ABSTRACT FROM AUTHOR]

Introduction: The COVID-19 pandemic significantly impacted the way health-related services are delivered, rapidly shifting from in-person to telehealth visits. To ensure that future healthcare providers are fully prepared to deliver services to families of youth with neurodevelopmental disabilities (NDD), understanding telehealth's advantages and barriers is vital. To this end, data were gathered to inform the development of a nationally available telehealth curriculum aimed at training future healthcare professionals from the Leadership Education in Neurodevelopmental Disabilities (LEND) network. Methods: Surveys were sent out nationally to current LEND trainees, practicing healthcare professionals, and family members of youth with NDD in November of 2020. Multiple choice and free response questions were completed and analyzed. A total of N = 208 surveys were completed (88 LEND trainees, 94 practicing professionals, 23 family members). Results: Most survey respondents reported having positive experiences with telehealth. LEND trainees and current healthcare professionals cited increased access to care and engagement as the top benefit of telehealth. Most family members reported using telehealth services (78%) and felt it was superior to in-person visits in terms of location of visit, scheduling, and meeting transportation needs. Trainees and professionals agreed the top barriers to telehealth for families were lack of broadband access and complexity of implementation and use. LEND trainees agreed telehealth basics should be included in LEND curriculum. Discussion: Trainees, professionals, and family members all agreed that knowing the basics of telehealth is essential for effective telehealth service delivery. Emerging healthcare professionals need to understand how those they will be serving engage with technology, their levels of experience in this area, and effective strategies for engaging children and youth with NDD through telehealth. This will bridge the engagement gap many families of children with disabilities face when not meeting in person. Findings from this study contributed to the design of learning materials that currently support LEND trainees across the country in developing these skills. Significance: What is already known? The COVID-19 pandemic forced the increased use of telehealth to deliver essential healthcare services. Families of children and adolescents with disabilities typically have an elevated need for services and little is known about their telehealth experiences. What does this study add? The current study reports on the telehealth experiences of healthcare professionals and families of children and adolescents with disabilities to inform the training of future healthcare professionals. [ABSTRACT FROM AUTHOR]

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Families of children with neurodevelopmental disabilities (NDDs) face specific challenges including limited social support, financial burdens, and elevated risks of psychological distress, notably anxiety and depression. These challenges extend to the well-being of both parents and children. On the positive side, contemporary early behavioral interventions have demonstrated their effectiveness in developing positive outcomes in children with developmental disabilities. This review examines the effectiveness of behavioral interventions, focusing on the role of parental involvement in treatment outcomes for children with DD, including autism spectrum disorder. Review analyzes studies on behavioral parent training (BPT) that emphasize extending parental involvement, considering implementing relationship-building and self-help strategies to mitigate parental stress. Additionally, the review addresses the parallel challenges faced by direct-care staff, highlighting the necessity for integrated training approaches that cater to both parental and staff needs to maintain treatment integrity. This integrative approach is crucial for fostering a supportive environment, enhancing treatment efficacy, and improving outcomes for children with NDD. Findings suggest that multi-component training programs, addressing self-help skills, stress reduction, and parenting skills, are beneficial for both parents and staff, promoting effective collaboration and treatment adherence. The review advocates for continued research and application of combined training methods, including Acceptance and Commitment Therapy (ACT) and Applied Behavior Analysis (ABA), to support families and caregivers of children with NDD." [ABSTRACT FROM AUTHOR]

BackgroundChildren and youth with neurodevelopmental disabilities (NDDs) and their caregivers are at a high risk of experiencing mental health challenges, that in turn can significantly affect their functioning, productivity, and quality of life. In this already vulnerable population, mental health difficulties are now more frequently reported and pronounced secondary to the isolation and uncertainties experienced during the pandemic. Our previous work has shown important mental health services' gaps for children/youth with NDDs and their families, highlighting the need to optimize and tailor existing practices.ObjectiveTo explore mental health services' barriers, facilitators, impact, and solutions from the perspectives of HCPs and CGs, and to describe common precursors to mental health challenges in children with NDDs from the perspectives of these two groups.MethodsIn a triangulation mixed-method study design embedding quantitative and qualitative approaches, participants completed a survey and a semi-structured interview. Descriptive statistics and a hybrid inductive/deductive thematic approach were used for data analysis.ResultsOver 700 utterances were analyzed (247 from caregivers [n = 10], 531 from clinicians [n = 16]) and included 143 and 173 statements related to the precursors and barriers/facilitators, respectively. Common precursors to mental health challenges (n = 7 categories) were identified and included reported feelings/perception of self, behavioral and physical manifestations, emotional dysregulation, and school-related factors, among others. Clinicians reported a widespread need for pediatric, family-centered mental health services and conveyed lacking mental health resources/training to meet the demand. Caregivers indicated being only moderately satisfied when care was received. Salient facilitators identified by clinicians were having an interdisciplinary team and caregiver's engagement in the therapeutic processes. Participants recommended improvements to increase accessibility to mediate the existing discrepancy between the emergence of precursors and care received; that services must target a broader population and be more comprehensive (e.g., family-centered care, addressing high-risk transition periods); and training/toolkits to support clinicians’ evidence-based practice.ConclusionOur findings emphasize the necessity of a systematic and standardized approach to mental health services for children with NDDs and their families. Enhancing caregiver support, addressing barriers, and adopting a proactive, family-centered approach are crucial for improving accessibility and quality. These proposed solutions provide valuable insights for shaping policies and practices in pediatric mental health services.

This study is intended to determine, from a systematic review, the importance and effectiveness of different interventions aimed at improving social skills in people with autism spectrum disorder (ASD) through theatrical techniques. For this purpose, a systematic review of the literature published from 2011 to 2021 in the ERIC, Web of Science, EuropePMC, PubPsych, Índices-Csic, Redalyc, Roderic, Scopus, PubMed, Scielo, and Dialnet databases was carried out, and a total of 29 articles were reviewed. The results indicate an improvement in socioemotional functioning, self-esteem, emotion management, empathy and listening, communication and social interaction, adaptive skills, as well as an increase in body awareness in people with ASD. It can be concluded that theater creates a safe environment in which people with ASD can engage with their own emotions and those of others, thereby offering a therapeutic setting in which to promote mental health in different aspects of both prevention and treatment. [ABSTRACT FROM AUTHOR]

This pilot study examined associations between transdiagnostic symptoms and parent-perceived parent-child relationship quality in treatment-seeking families of children with neurodevelopmental disabilities, and interactions among clinical symptoms and cognitive functioning. Sixty-three children between 8 to 13 years of age and their caregivers were assessed at baseline while seeking cognitive behaviour therapy for emotion regulation and mental health difficulties. Diagnoses included autism, ADHD, cerebral palsy, and learning disability, with 52% of children having multiple diagnoses. Parent-perceived parent-child relationship quality was assessed by the Positive Affect Index, autism symptoms (e.g., social communication, repetitive behaviours) by the Social Responsiveness Scale, Second Edition, mental health (i.e., internalizing problems, externalizing problems, behavioural symptoms) by the Behaviour Assessment Scale for Children, Third Edition, and IQ by the Weschler Abbreviated Scale of Intelligence, Second Edition. Results revealed that higher IQ scores and greater social communication challenges, externalizing problems, and behavioural symptoms, were associated with lower parent-child relationship quality. Interaction effects were found between IQ and social communication challenges, reflecting significantly stronger relationships between social communication challenges and lower parent-child relationship quality in the context of higher IQ. Understanding the interactions between cognitive functioning and social communication challenges can help to inform individualized supports, and advocate for a transdiagnostic approach to intervention. Highlights: We examined associations between transdiagnostic symptoms and parent-perceived parent-child relationship quality in families of children with neurodevelopmental disabilities. Social communication challenges, IQ, externalizing problems, and behavioural symptoms were negatively associated with parent-child relationship quality. The strength of the relationship between social communication challenges and parent-child relationship quality was inversely related to IQ levels. [ABSTRACT FROM AUTHOR]

Purpose of Review: Migraine is a common condition affecting an estimated billion people across the world. The incidence in individuals with neurodevelopmental disorders or intellectual disabilities like those seen in severe autism spectrum disorder (ASD) is unknown. This is likely due to the limited capacity to communicate the specifics of pain. The expression of pain with maladaptive behaviors, such as self-injurious behavior (SIB), has been described and can alert the clinician to the presence of untreated pain. This review article serves to educate the reader about clinical and treatment considerations when managing headaches in individuals with severe or non-verbal neurodevelopmental disorders given their communication challenges. It will include some clinical experiences and the gaps in our current knowledge. Recent Findings: A comprehensive literature review was conducted using scientific databases, including PubMed, Medline, and Google Scholar. Only 1 article addressed the consideration for headaches in this population. The search was conducted using a combination of the following keywords: headache, intellectual disabilities, autism, pain, and behavior. Summary: Headache pain is likely underestimated and represents a disservice to this population of people. The consideration for headache pain should be explored when maladaptive behaviors are otherwise unexplainable. Further studies are needed in the area. [ABSTRACT FROM AUTHOR]

Purpose/Objective: Personal disability identity (PDI) refers to disability self-concept and includes various attitudes toward disability. In this study, we examined whether the PDI attitudes of disability self-worth and personal meaning were predictors of psychosocial functioning. Method/Design: Using hierarchical regression to control for sociodemographic and disability characteristics, we examined the unique contributions of these two PDI attitudes to life satisfaction, anxiety/depression, and general self-efficacy in a sample of 1,203 employed U.S. adults with LD and/or ADHD. Results: PDI attitudes (disability self-worth and personal meaning) explained significant additional variance on both outcomes, after accounting for control variables. Results indicated that (a) self-worth (β = −.25, p <.001) and personal meaning (β = −.24, p <.001) were negatively associated with anxiety/depression, (b) self-worth was positively associated with general self-efficacy (β =.31, p <.001), and (c) personal meaning was positively associated with life satisfaction (β =.30, p <.001). Conclusions/Implications: Present findings suggest that disability identity is worthy of attention in research on neurodevelopmental disabilities. Impact and Implications: Disability self-worth and personal meaning scores were found to predict life satisfaction, anxiety/depression, and general self-efficacy in adults with LD and/or ADHD, indicating that PDI measurement and scholarship are relevant to invisible, neurodevelopmental disabilities. Practitioners and researchers who work with these populations should consider the disability-related feelings and cognitions of those they serve. [ABSTRACT FROM AUTHOR]

Caregivers of a child with a neurodevelopmental disability are more vulnerable to mental health difficulties. These difficulties are influenced by the child's challenging behaviours, and the caregiver's coping strategies; factors impacted by the COVID-19 pandemic. An online mixed methods survey was conducted on caregivers of children with neurodevelopmental disabilities (n = 43) and children who are typically developing (n = 67). The results showed that presence of challenging behaviours related to neurodevelopmental disability, and caregiver coping strategies predicted caregiver psychological distress during lockdown. Themes that emerged included 'confusing messages and guidance', 'loss of freedom' and 'unsupported and forgotten'. The results demonstrate the pressing need for the implementation of appropriate support to protect the mental health of caregivers across the UK. [ABSTRACT FROM AUTHOR]

Many health professional students have insufficient general knowledge about individuals with neurodevelopmental disabilities. Students lack the expertise required to work with this population and their families. Interprofessional practice education (IPE) programs, designed for working with individuals with specialized needs and their families, are needed to improve overall care provided. An IPE program related to neurodevelopmental disabilities for health professional students was implemented focusing on applied learning and community engagement to develop competencies for students related to neurodevelopmental disabilities at a state university in the U.S. The purpose of this research was to describe the development and implementation of an IPE program and to examine the effectiveness of the IPE program aimed at developing identified competencies and increase awareness related to care of individuals with ND for health professional students. The findings suggest the IPE program enhanced health professional students' perceived competencies to identify and provide culturally sensitive and family-centered care for individuals with neurodevelopmental disabilities and their families. This experience also provided an opportunity for personal/professional growth and increased awareness of the unique needs of these individuals with neurodevelopmental disabilities and their families. [ABSTRACT FROM AUTHOR]

Abstract Background The use of tele-rehabilitation in children was limited before the COVID-19 pandemic, due to culture, technology access, regulatory and reimbursement barriers. Methods The study was conducted according to the CHERRIES (Checklist for reporting results of internet E-surveys) guidelines in order to provide quantitative and qualitative data about experience of patients with disabilities and their caregivers during Phase 1 of the COVID-19 pandemic, and their level of satisfaction. An online survey was developed using Google Forms and sent via email. The outcome measures were rated using a 5-point Likert Scale. Two additional open-ended questions were used to collect qualitative data. Results One hundred twenty-eight out of 261 families responded to the survey: 80.5% of the caregivers reported they were satisfied with the tele-rehabilitation. More than a half (53%) of the families reported a high level of satisfaction with the involvement they received in defining and sharing of rehabilitation goals. Conclusions The implementation of telehealth during the COVID-19 lockdown has allowed us to gain more information about the potential of tele-rehabilitation, and resulted in an excellent satisfaction of caregivers. With appropriate education and consistent models of care, an increased use of telehealth may provide advances in remote patient care. Trial registration Not applicable.

Advances in medicine have increased the life expectancy of adults with neurodevelopmental disabilities (ND). These individuals often reside with aging family caregivers, who also experience age-related health issues. However, many caregivers lack future care plans for their adult children. Thus, there is a pressing need for practical solutions for family-centered future care planning (FCP). To summarize the literature on the key components of FCP for adults with ND and their familial caregivers. This scoping review adhered to the Joanna Briggs Institute guidelines. It utilized search terms related to ND and FCP and conducted searches in four databases. Data were analyzed thematically. The initial search generated over unique 9000 articles. The review identified facilitators, such as preferences, family-centered approaches, advocacy, and formal support, which promote effective FCP. Barriers to FCP included caregiver hesitancy, limited resources, the emotional nature of future care planning. Recommendations for addressing these challenges included policy and practice support, healthcare professional education and training, and the active involvement of clients and caregivers in FCP discussions. This review contributes to the understanding of FCP for adults with ND and offers insights for improving family-centered care planning processes. This paper contributes to the literature by highlighting the pressing need for comprehensive future care planning (FCP) for adults with neurodevelopmental disabilities (ND) and their aging caregivers. With increasing life expectancy for adults with ND, there is a growing population of aging caregivers who often lack proactive FCP. The review identifies common FCP facilitators, barriers, and recommendations, emphasizing the emotional and financial challenges caregivers face. On the macro level, distrust of the public sector, a crisis-driven healthcare system, and a lack of funding and information present significant challenges. On the micro level, emotional attachment to adult children with ND can lead to family instabilities, uncertainties about the "right decision," and feelings of helplessness and guilt among caregivers. It underscores the importance of taking a family-centered approach, involving the adult with ND, and providing healthcare professionals with the necessary education and support to guide caregivers through the FCP process. The paper also highlights the limited existing interventions and calls for further research to address this critical issue. By reviewing a broad range of studies, the paper sets the stage for future research and practice in this area. It offers valuable insights into the components of FCP that can inform recommendations for healthcare professionals, caregivers, and individuals with ND to enhance the continuity of care. In doing so, it aims to address the gaps in the existing literature, particularly the lack of caregiver-informed recommendations for comprehensive FCP. [ABSTRACT FROM AUTHOR]

Caregivers of children with neurodevelopmental disorders and medical complexities (NDD-MC) coordinate care across complex multisectoral systems. Often NDD-MC children have complex behaviors, however there is limited information on coordination needs for families. Aim: The objective of this mixed methods study was to understand the needs of families with NDD-MC children. Methods and Procedures: This sequential exploratory study obtained the perspectives of 67 caregivers of NDD-MC children using semi-structured interviews and validated questionnaires to measure family quality of life, care integration, and resource use. An adapted model using Maslow's hierarchy of needs was integrated, to understand the impacts of caregiving on quality of life. Outcomes and Results: Lack of support in caring for NDD-MC children negatively impacted family quality of life, resulting in various unmet needs, including caregiver burden, behavioural challenges, financial losses, and mental health issues. Caregivers dealt with a fragmented healthcare system that offered limited support to address coordination challenges. Conclusions and Implications: The implementation of a needs-based care coordination program is recommended to consider the health, educational, and social needs of NDD-MC children and their families. Effective care for children with complex needs should tailor support for families using Maslow's hierarchy to enhance quality of life. • Families reported lack of access to NDD services reduced family quality of life. • Families experienced improved NDD services when their perspectives were integrated. • Maslow's hierarchy was used recognizing physical, psychological and social needs related to quality of life. • Most medically complex children lack access to needed NDD services. • Families reported limited support from care teams to navigate services. [ABSTRACT FROM AUTHOR]

Abstract Background The aim of the study is to determine that Glycopirrolate is safe and effective in decreasing drooling in children with medical complexity under 3 years of age. Medical treatment is based on anticholinergic drugs as transdermal scopolamine, benzotropine and GLY. GLY (Glycopyrronium bromide) is a synthetic quaternary ammonium anticholinergic agent with poor blood–brain barrier penetration and consequently has limited central effects. Actually, the oral GLY formulation was approved by the United States Food and Drug Administration (FDA) to treat drooling in children aged 3–16 years. Five studies reported on GLY use for the treatment of drooling in children with cerebral palsy and other conditions with neurological impairment; four are prospective studies while one a retrospective review. Methods this is a case report of eighteen children (sex ratio 11/8, median age 17 months, range 2–36 months) under three years of age, followed by a multidisciplinary team at the Bambino Gesù Children Hospital. The median follow-up was of 31.5 months (range 1–69 months). Response to treatment was assessed according to the Drooling Impact Scale administered at time 0 and after 1 month. All patients have an important neurological impairment: nine patients have a cerebral palsy (Gross Motor Function Classification System class V) and nine a genetic/malformative syndrome. Twelve patients have a tracheostomy and two need mechanical ventilation. Gastrostomy is present in 16 out of 18 patients. All patients received Glycopirrolate. The median starting daily dose was 0.065 mg/kg/die (range 0.02–0.21 mg/kg/die) three times a day. The drooling impact scale was administered at time O and after 1 month. Results Four out 18 patients stopped treatment for adverse event, lack of efficacy or parental decision. The mean Drooling Impact Scale at time 0 was 89 (range 81–100) and after 1 month 61(range 43–78); the difference was statistically significant (P

Objectives: The aim of this study is to assess the efficacy and side effects of melatonin use in a population of children with neurodevelopmental disabilities who had sleep disorders. Methods: This is a cross-sectional study conducted in the pediatric neurology clinic at King Abdulaziz Medical City. A designed questionnaire was given to the parents to inquire about the sleep characteristics of their children before and after using melatonin. The patients' demographic data were collected and different parameters before and after starting melatonin were compared. Categorical variables were summarized and reported in terms of frequency and percent (n%). Continuous variables were reported in terms of mean and standard deviation. Results: A total of 23 patients were enrolled in our study, of which 15 (65.22%) were male. The mean age was 5.83 ± 3.07 years. For melatonin dose, 9 (39.13%) received 1 mg, 8 (34.78%) received 2 mg, and 6 (26.09%) received over 3 mg. Regarding melatonin duration of use, 7 (30.43%) received melatonin for 0 to 6 months, 7 (30.43%) received it for 7 to 12 months, and 9 (39.13%) received it for over a year. Significant differences were observed in time taken to fall asleep (P =0.046), the number of times the child woke up at night (P =0.071), total sleep time within 24 hours (P =.011), and time taken to wake up (P =.007), while no significant difference was observed in the number of naps taken during the daytime (P =.801). There were no major side effects reported. Conclusion: Melatonin had a significant impact on total sleep time and quality during the pre and post assessment of children with neurodevelopmental disabilities and sleep disorders.

BackgroundAlthough children with neurodevelopmental disability (NDD) present with several deficits, they partially share developmental impairments in prelinguistic intersubjective and socio-communicative skills, which are not easily assessed by conventional tests during the first years of life.AimThe current paper presents a new procedure to assess the prelinguistic intersubjective and socio-communicative skills of NDD children aged 0–36 months. A specific observation form template, called the Observation of Prelinguistic Intersubjective and Socio-Communicative Skills (OPISCoS) form, has been designed to systematically detect infant skills during daily routines (e.g., mealtime, playtime, desk activities). The OPISCoS form helps speech therapists to provide parents support to better perceive and understand early communicative signals from their children, avoiding the risk of excessive or reduced social stimulation.MethodsThe OPISCoS form is composed of three sections, namely, “Pragmatics and Communication,” “Decoding,” and “Expression,” which are useful to delineate the communication abilities of children with NDD and are not tapped by traditional batteries. Vignettes from clinical practice illustrate and provide exemplifications for using the OPISCoS form with NDD infants and their parents.ResultsThe OPISCoS form was reported for two children and showed potential in detecting disrupted communicative behaviors and planning specific early interventions. Further, we observed an improvement not only in children's communicative abilities improve but also in their interactions with parents. From a clinical point of view, the OPISCoS form (1) offers an observational perspective of prelinguistic intersubjective and socio-communicative skills in infants with NDD and (2) may be useful to practitioners to enhance parents’ sensitivity to their infants’ communicative behavior.ConclusionThe OPISCoS form was developed in clinical practice and is based on a very preliminary description of a new observational procedure as integration for the assessment of NDD children. The OPISCoS form appears to be a useful tool for the clinical assessment of prelinguistic intersubjective and socio-communicative skills in NDD infants as well as for promoting the quality of early parenting.

Providing treatment to children with autism is a global health priority, and research demonstrates that caregivers can be trained in techniques to promote their child's social interaction, communication, play, positive behavior and skills. These caregiver-mediated interventions have been shown to promote a number of positive outcomes in children with autism, as well as their caregivers. When provided by telehealth, data indicate that caregiver training is acceptable and feasible, and associated with similar positive outcomes as live face-to-face training. Telehealth innovations, which have accelerated during the COVID-19 era, have demonstrated advantages over in-person delivery of services in terms of cost effectiveness and increased accessibility, however, more research is needed on feasibility, acceptability and effectiveness for different populations in different contexts. This brief review will highlight recent caregiver skills training interventions for autism that have been successfully adapted or designed for telehealth delivery. Telehealth interventions that are scalable, adaptable, caregiver-mediated, open-access, and delivered as part of a stepped care model, have the potential to address the global treatment gap for families of children with autism and other neurodevelopmental disabilities. Considerations relevant to the global scale-up of caregiver-mediated interventions will also be discussed. [ABSTRACT FROM AUTHOR]

Background: Building rapport with young patients is crucial for fostering a sense of comfort that enhances their cooperation during clinical encounters and improves clinical outcomes. The available data on children with neurodevelopmental disabilities in community-based settings, including data on child-physician rapport, is limited., Aims: To examine how children with neurodevelopmental disabilities perceive rapport with treating physicians compared to parents and treating physicians and to evaluate the relationship between the child-reported rapport and its impact on their cooperation., Methods: One hundred two children with neurodevelopmental disabilities (M years = 9.63, SD = 2.42) completed the CHARM-C Questionnaire, which assessed their experience of rapport with their examining physicians following neurodevelopmental assessments. In parallel, their parents and physicians completed the CHARM-A Questionnaire, which assessed how they perceived the children's experience of rapport (a total of 306 questionnaires). The physicians also rated children's cooperation. The data were analyzed using correlation, regression, and mixed linear analyses., Results: Children's perceptions of rapport were significantly less positive than those of parents (d = -0.60) and physicians (d = -0.45). A moderate partial correlation (r = .37) was found between children's and parents' perceptions. Neither children's nor parents' perceptions were correlated with physicians' perceptions. Children's perceptions of rapport were positively associated with greater cooperation (β = .28)., Discussion: Children with neurodevelopmental disabilities rated their rapport with physicians lower than parents and doctors. Their evaluations offer valuable insights, complementing caregivers' and professionals' perspectives. Training physicians to improve their assessments of children's needs during medical encounters is critically important., Competing Interests: Declaration of Competing Interest All authors report there are no competing interests to declare., (Copyright © 2024. Published by Elsevier B.V.)

Providing treatment to children with autism is a global health priority, and research demonstrates that caregivers can be trained in techniques to promote their child's social interaction, communication, play, positive behavior and skills. These caregiver-mediated interventions have been shown to promote a number of positive outcomes in children with autism, as well as their caregivers. When provided by telehealth, data indicate that caregiver training is acceptable and feasible, and associated with similar positive outcomes as live face-to-face training. Telehealth innovations, which have accelerated during the COVID-19 era, have demonstrated advantages over in-person delivery of services in terms of cost effectiveness and increased accessibility, however, more research is needed on feasibility, acceptability and effectiveness for different populations in different contexts. This brief review will highlight recent caregiver skills training interventions for autism that have been successfully adapted or designed for telehealth delivery. Telehealth interventions that are scalable, adaptable, caregiver-mediated, open-access, and delivered as part of a stepped care model, have the potential to address the global treatment gap for families of children with autism and other neurodevelopmental disabilities. Considerations relevant to the global scale-up of caregiver-mediated interventions will also be discussed.

People with neurodevelopmental disabilities, including intellectual disabilities and autism, want to have relationships but few are given the tools and opportunity to create those relationships in a safe and meaningful way. This strong desire to have relationships, coupled with reduced access to information, puts people with neurodevelopmental disabilities at high risk for being targets of sexual abuse and exploitation, as well as demonstrating social-sexual behavior that is unexpected or offensive to others. Research has long demonstrated that people with intellectual disabilities are sexually assaulted at much higher rates than the general population. In addition, it is common for people with intellectual disabilities and autism to miss out on employment, housing, and social opportunities due to unexpected social-sexual behaviors. To address this need, the research team developed the social-sexual education (SSE) program to teach people with neurodevelopmental disabilities how to create safe and meaningful relationships while also giving them information about sexual abuse and coercion. We recruited licensed professionals to pilot test the SSE program, and then we evaluated the tool using quantitative and qualitative methods. Our findings provide preliminary support for the SSE program. Implications and future directions are discussed. [ABSTRACT FROM AUTHOR]

To characterise the changes at work experienced by psychologists working with people with intellectual disabilities during the pandemic and whether these changes, stressors and aspects of working life were associated with mental wellbeing and occupational stress. Ninety-seven psychologists completed an online survey. Free text comments were analysed using thematic analysis and triangulated with our quantitative findings. Occupational stress, learning new roles, demands at home, and changes due to COVID-19 were associated with poorer mental wellbeing, while uncertainty about the role, a shortage of personal protective equipment, and poorer mental wellbeing were associated with occupational stress. Two main themes emerged during the thematic analysis: being human and being an employee, and triangulation revealed agreement. The wellbeing and occupational stress of psychologists working with people with intellectual disabilities have been affected during the pandemic. It is of note that almost a quarter of our sample reported having been redeployed. [ABSTRACT FROM AUTHOR]

The pre‐mRNA‐processing factor 8, encoded by PRPF8, is a scaffolding component of a spliceosome complex involved in the removal of introns from mRNA precursors. Previously, heterozygous pathogenic variants in PRPF8 have been associated with autosomal dominant retinitis pigmentosa. More recently, PRPF8 was suggested as a candidate gene for autism spectrum disorder due to the enrichment of sequence variants in this gene in individuals with neurodevelopmental disorders. We report 14 individuals with various forms of neurodevelopmental conditions, found to have heterozygous, predominantly de novo, missense, and loss‐of‐function variants in PRPF8. These individuals have clinical features that may represent a new neurodevelopmental syndrome. [ABSTRACT FROM AUTHOR]

We describe a computer-assisted program for conducting well-body assessments of children with neurodevelopmental disabilities attending a private special education school. Classroom instructors completed daily assessments to detect the presence of bodily injuries and other skin trauma, determine the need for medical treatment, and monitor healing status. Evaluations performed with the classroom instructors revealed that they implemented the program with high integrity and rated several procedural components favorably. Compared to "paper form" data recording, clinicians and supervisors judged the computer-assisted program to track student injuries more thoroughly and record student injuries more accurately. The importance of health monitoring among persons with neurodevelopmental disabilities, advantages of technology-based assessment methods, and practice considerations are discussed. [ABSTRACT FROM AUTHOR]