Neurodevelopmental Outcomes for Individuals With Congenital Heart Disease: Updates in Neuroprotection, Risk-Stratification, Evaluation, and Management: A Scientific Statement From the American Heart Association.

Over the past decade, new research has advanced scientific knowledge of neurodevelopmental trajectories, factors that increase neurodevelopmental risk, and neuroprotective strategies for individuals with congenital heart disease. In addition, best practices for evaluation and management of developmental delays and disorders in this high-risk patient population have been formulated based on literature review and expert consensus. This American Heart Association scientific statement serves as an update to the 2012 statement on the evaluation and management of neurodevelopmental outcomes in children with congenital heart disease. It includes revised risk categories for developmental delay or disorder and an updated list of factors that increase neurodevelopmental risk in individuals with congenital heart disease according to current evidence, including genetic predisposition, fetal and perinatal factors, surgical and perioperative factors, socioeconomic disadvantage, and parental psychological distress. It also includes an updated algorithm for referral, evaluation, and management of individuals at high risk. Risk stratification of individuals with congenital heart disease with the updated categories and risk factors will identify a large and growing population of survivors at high risk for developmental delay or disorder and associated impacts across the life span. Critical next steps must include efforts to prevent and mitigate developmental delays and disorders. The goal of this scientific statement is to inform health care professionals caring for patients with congenital heart disease and other key stakeholders about the current state of knowledge of neurodevelopmental outcomes for individuals with congenital heart disease and best practices for neuroprotection, risk stratification, evaluation, and management.

Retrospective review of the code status of individuals with Down syndrome during the COVID-19 era.

Code status is a label in the medical record indicating a patient's wishes for end-of-life (EOL) care in the event of a cardiopulmonary arrest. People with intellectual disabilities had a higher risk of both diagnosis and mortality from coronavirus infections (COVID-19) than the general population. Clinicians and disability advocates raised concerns that bias, diagnostic overshadowing, and ableism could impact the allocation of code status and treatment options, for patients with intellectual disabilities, including Down syndrome (DS). To study this, retrospective claims data from the Vizient® Clinical Data Base (used with permission of Vizient, all rights reserved.) of inpatient encounters with pneumonia (PNA) and/or COVID-19 at 825 hospitals from January 2019 to June 2022 were included. Claims data was analyzed for risk of mortality and risk of "Do Not Resuscitate" (DNR) status upon admission, considering patient age, admission source, Elixhauser comorbidities (excluding behavioral health), and DS. Logistic regression models with backward selection were created. In total, 1,739,549 inpatient encounters with diagnoses of COVID-19, PNA, or both were included. After controlling for other risk factors, a person with a diagnosis of DS and a diagnosis of COVID-19 PNA had 6.321 odds ratio of having a DNR status ordered at admission to the hospital compared with those with COVID-19 PNA without DS. The diagnosis of DS had the strongest association with DNR status after controlling for other risk factors. Open and honest discussions among healthcare professionals to foster equitable approaches to EOL care and code status are needed.

Strategies for addressing the needs of children with or at risk of developmental disabilities in early childhood by 2030: a systematic umbrella review.

BACKGROUND: There are over 53million children worldwide under five with developmental disabilities who require effective interventions to support their health and well-being. However, challenges in delivering interventions persist due to various barriers, particularly in low-income and middle-income countries. METHODS: We conducted a global systematic umbrella review to assess the evidence on prevention, early detection and rehabilitation interventions for child functioning outcomes related to developmental disabilities in children under 5 years. We focused on prevalent disabilities worldwide and identified evidence-based interventions. We searched Medline, Embase, PsychINFO, and Cochrane Library for relevant literature from 1st January 2013 to 14th April 2023. A narrative synthesis approach was used to summarise the findings of the included meta-analyses. The results were presented descriptively, including study characteristics, interventions assessed, and outcomes reported. Further, as part of a secondary analysis, we presented the global prevalence of each disability in 2019 from the Global Burden of Disease study, identified the regions with the highest burden and the top ten affected countries. This study is registered with PROSPERO, number CRD42023420099. RESULTS: We included 18 reviews from 883 citations, which included 1,273,444 children under five with or at risk of developmental disabilities from 251 studies across 30 countries. The conditions with adequate data were cerebral palsy, hearing loss, cognitive impairment, autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder. ASD was the most prevalent target disability (n = 8 reviews, 44%). Most reviews (n = 12, 67%) evaluated early interventions to support behavioural functioning and motor impairment. Only 33% (n = 10/30) of studies in the reviews were from middle-income countries, with no studies from low-income countries. Regarding quality, half of reviews were scored as high confidence (n = 9/18, 50%), seven as moderate (39%) and two (11%) as low. CONCLUSIONS: We identified geographical and disability-related inequities. There is a lack of evidence from outside high-income settings. The study underscores gaps in evidence concerning prevention, identification and intervention, revealing a stark mismatch between the available evidence base and the regions experiencing the highest prevalence rates of developmental disabilities.

Disparities in Breast Cancer Screening Rates Among Adults With and Without Intellectual and Developmental Disabilities.

BACKGROUND: Individuals with intellectual and developmental disabilities may face barriers in accessing healthcare, including cancer screening and detection services. We sought to assess the association of intellectual and developmental disabilities (IDD) with breast cancer screening rates. METHODS: Data from 2018 to 2020 was used to identify screening-eligible individuals from Medicare Standard Analytic Files. Adults aged 65-79 years who did not have a previous diagnosis of breast cancer were included. Multivariable regression was used to analyze the differences in breast cancer screening rates among individuals with and without IDD. RESULTS: Among 9,383,349 Medicare beneficiaries, 11,265 (0.1%) individuals met the criteria for IDD. Of note, individuals with IDD were more likely to be non-Hispanic White (90.5% vs. 87.3%), have a Charlson Comorbidity Index score ≤ 2 (66.2% vs. 85.5%), and reside in a low social vulnerability index neighborhood (35.7% vs. 34.4%). IDD was associated with reduced odds of undergoing breast cancer screening (odds ratio (OR) 0.77, 95% confidence interval (CI) 0.74-0.80; p < 0.001). Breast cancer screening rates in individuals with IDD were further influenced by social vulnerability and belonging to a racial/ethnic minority. CONCLUSIONS: Individuals with IDD may face additional barriers to breast cancer screening. The combination of IDD and social vulnerability placed patients at particularly high risk of not being screened for breast cancer.

Participation in Special Olympics reduces the rate for developing diabetes in adults with intellectual and developmental disabilities.

AIM: Adults with intellectual and developmental disabilities (IDD) have a significantly higher prevalence of Type 2 diabetes than the general population. Evidence that lifestyle and/or behavioural interventions, such as participation in Special Olympics, decreases the risk of developing diabetes in adults with IDD could help minimize health disparities and promote overall health in this population. METHODS: This was a 20-year retrospective cohort study of adults with IDD (30-39 years) in the province of Ontario, Canada, that compared hazard rates of diabetes among Special Olympics participants (n = 4145) to non-participants (n = 31,009) using administrative health databases housed at ICES. Using cox proportional hazard models, crude and adjusted hazard ratios were calculated for the association between the primary independent variable (Special Olympics participation status) and the dependent variable (incident diabetes cases). RESULTS: After controlling for other variables, the hazard ratio comparing rates for developing diabetes between Special Olympics participants and non-participants was 0.85. This represents a 15% reduction in the hazard among Special Olympics participants when followed for up to 20 years. This result was statistically significant and represents a small effect size. CONCLUSIONS: Special Olympics could be considered a complex intervention that promotes physical activity engagement through sport participation, health screenings, and the promotion of healthy eating habits through educational initiatives. This study provides evidence that Special Olympics participation decreases the rate for developing diabetes.

Reproductive healthcare in adolescents with autism and other developmental disabilities.

BACKGROUND: Adults with developmental disabilities often have less access to reproductive health services than adults without these disabilities. However, little is known about how adolescents with developmental disabilities, including autism, access reproductive healthcare. OBJECTIVE: We aimed to characterize the use of reproductive healthcare services among adolescents with autism and those with other developmental disabilities in comparison with adolescents with typical development. STUDY DESIGN: We conducted a cohort study of a sample of adolescents who were continuously enrolled members of Kaiser Permanente Northern California, an integrated healthcare system, from ages 14 to 18 years. The final analytical sample included 700 adolescents with autism, 836 adolescents with other developmental disabilities, and 2187 typically developing adolescents who sought care between 2000 and 2017. Using the electronic health record, we obtained information on menstrual conditions, the use of obstetrical-gynecologic care, and prescriptions of hormonal contraception. We compared healthcare use between the groups using chi-square tests and covariate-adjusted risk ratios estimated using modified Poisson regression. RESULTS: Adolescents with autism and those with other developmental disabilities were significantly more likely to have diagnoses of menstrual disorders, polycystic ovary syndrome, and premenstrual syndrome than typically developing adolescents. These 2 groups also were less likely than typically developing peers to visit the obstetrician-gynecologist or to use any form of hormonal contraception, including oral contraception, hormonal implants, and intrauterine devices. Adolescents in all 3 groups accessed hormonal contraception most frequently through their primary care provider, followed by an obstetrician-gynecologist. CONCLUSION: Adolescents with autism and those with other developmental disabilities are less likely than their typically developing peers to visit the obstetrician-gynecologist and to use hormonal contraception, suggesting possible care disparities that may persist into adulthood. Efforts to improve access to reproductive healthcare in these populations should target care delivered in both the pediatric and obstetrics-gynecology settings.

Developmental surveillance and screening practices in a pediatric oncology clinic: Initial progress of a quality improvement study.

BACKGROUND: Pediatric cancer patients' oncology teams regularly take on a primary care role, but due to the urgent nature of cancer treatment, developmental screenings may be deprioritized. This leaves patients at risk of developmental diagnoses and referrals being delayed. AIMS: Clarify the current developmental surveillance and screening practices of one pediatric oncology team. MATERIALS AND METHODS: Researchers reviewed charts for patients (n = 66) seen at a pediatric oncology clinic in a suburban academic medical center to determine engagement in developmental screening (including functioning around related areas such as speech, neurocognition, etc.) and referrals for care in these areas. RESULTS: Developmental histories were collected from all patients through admission history and physical examination (H&P), but there was no routinized follow-up. Physicians did not conduct regular developmental screening per American Academy of Pediatrics guidelines for any patients but identified n = 3 patients with needs while the psychology team routinely surveilled all patients seen during this time (n = 41) and identified n = 18 patients as having delays. DISCUSSION: Physicians did not routinely screen for development needs beyond H&P and were inconsistent in developmental follow-up/referrals. Integrated psychologists were key in generating referrals for developmental-based care. However, many oncology patients were not seen by psychologists quickly or at all, creating a significant gap in care during a crucial developmental period. CONCLUSION: The case is made for further routinization of ongoing developmental screening in pediatric oncology care.

Riboflavin as a potential new therapeutic agent for perinatal encephalopathies caused by cerebral oxygen deprivation.

Objective: This letter to the editor presents suggestions for the therapeutic use of riboflavin in perinatal brain lesions caused by oxygen deprivation.Methods: Clinical and preclinical studies using riboflavin conjugated with other components for the treatment of cerebral oxygen deprivation were included in the discussion.Results: Oxygen deprivation is predisposed by anoxia, hypoxia, or ischemia and causes severe early central damage, including sensorimotor impairment. At the moment, these lesions lack effective and affordable therapies. We present studies demonstrating the neuroprotective effects of riboflavin-containing drugs to treat children affected by hypoxic perinatal injuries.Discussion: This article suggests conducting preclinical studies to elucidate the potential isolated effects of riboflavin on the pathogenesis of perinatal brain injury caused by oxygen deprivation, by presenting routes for future clinical strategies for the prevention or treatment of perinatal encephalopathies.

Impact of Wheelchair Seating Systems on Scoliosis Progression for Children With Neurologic and Neuromuscular Disorders: A Retrospective Study of Custom-Contoured Wheelchair Seating and Modular Wheelchair Seating.

OBJECTIVES: To retrospectively evaluate the comparative effect of 2 wheelchair seating systems, Custom-Contoured Wheelchair Seating (CCS) and Modular Wheelchair Seating (MWS), on scoliosis progression in children with neuromuscular and neurologic disorders and to determine any predictors for scoliosis progression. DESIGN: Longitudinal, retrospective cohort study. SETTING: A national health service regional posture and mobility service. PARTICIPANTS: Nonambulant pediatric wheelchair users with neuromuscular and neurologic disorders (N=75; 36 men, 39 women; mean age at seating intervention, 10.50±3.97y) issued CCS and MWS by the South Wales Posture and Mobility Service from 2012-2022. INTERVENTIONS: Two specialized wheelchair seating systems, CCS and MWS. MAIN OUTCOME MEASURES: A generalized least squares model was used to estimate the effect of seat type on Cobb angle over time. RESULTS: Of the 75 participants enrolled, 51% had cerebral palsy. Fifty were issued CCS and 25 were issued MWS. Baseline Cobb angle was 32.9±18.9° for the MWS group and 48.0±31.0° for the CCS group. The generalized least squares model demonstrated that time since seating intervention (χ2=122, P<.0001), seating type (χ2=52.5, P<.0001), and baseline scoliosis severity (χ2=41.6, P<.0001) were predictive of scoliosis progression. Condition was not a strong predictor (χ2=9.96, P =.0069), and sex (χ2=5.67, P=.13) and age at intervention (χ2=4.47, P=.35) were not predictive. Estimated contrasts of medical condition with seat type over time demonstrated smaller differences between MWS and CCS over time. Predicted scoliosis velocity was found to attenuate with use of CCS over time compared with MWS, although scoliosis deteriorated regardless of intervention. CONCLUSIONS: Our findings showed pediatric wheelchair users with neurologic and neuromuscular disorders prescribed CCS showed greater mitigation of scoliosis progression over time compared with those issued MWS.

Differentiation of the body build and posture in the population of people with intellectual disabilities and Down Syndrome: a systematic review.

BACKGROUND: The aim of the study was to identify the variables of the internal compensatory mechanisms that differentiate the body build and posture of people with Down syndrome (DS) from the intellectual disability (ID) population. It was assumed that gaining knowledge in the abovementioned aspect will allow for a better understanding of the limitation of the kinesthetic abilities of people with ID and DS and simultaneously enable to optimize the process of planning and interventions to improve physical activity in this population with the adequate use of theirs strengths in the biomechanical and morphofunctional systems. METHODS: The methodology of this systematic review was developed according to the PRISMA guidelines. A search of PubMed, EBSCO, Scopus databases was conducted to identify all studies on DS/ID and the body build and posture from 2003 to 2023. RESULTS: 395 articles were assessed to determine eligibility, while 22 studies met the inclusion criteria and were subjected to detailed analysis and assessment of their methodological quality. The differentiation of the body build and posture in DS population can be induced by both internal and external compensatory mechanisms. It is difficult to confirm the direct effect of the intrinsic variables that impact the body build and posture in the ID population, excluding people with DS. CONCLUSIONS: Compared to other ID, the intrinsic differences in the body build and posture in DS individuals were induced by gender, age, and level of ID. The tendency for diversity between DS and other ID populations in body build and posture may be determined by the presence of the third copy of chromosome 21 in DS group. Internal compensatory processes may be induced mainly by abnormalities in the structure of the cervical vertebrae and feet. IQ should not be used as the only variable that identifies the population of people with ID.

Perceptions on support, challenges and needs among parents and caregivers of children with developmental disabilities in Croatia, North Macedonia and Serbia: a cross-sectional study.

BACKGROUND: Parents/caregivers of children with developmental disabilities (CDD) have a wide range of support needs and there are various interventions available. Support, challenges, and needs among parents/caregivers of CDD likely vary in different geographical settings. This study aimed to analyze the perceptions of support, challenges, and needs among parents/caregivers of CDD in Croatia, North Macedonia, and Serbia. METHODS: We conducted a cross-sectional study in March-April 2023 within the Erasmus + SynergyEd project. The eligible participants were parents and caregivers of CDD in Croatia, North Macedonia, and Serbia, who filled out a modified Caregiver Needs Survey online. RESULTS: Among 953 participants, 542 (57%) were from Croatia, 205 (21%) were from North Macedonia and 206 (22%) were from Serbia. The most common diagnosis of participants' children was autism spectrum disorder (26%). The child most often received the first diagnosis at the median of 2 years, diagnosed by a team of professionals. More than half (58%) of children attended preschool and public school, while 22% did not attend any schooling. Additional support from the state/city/county was received by 66% of CDD. Most participants declared not participating in association/organization for family support. Participants mostly (68%) used experts who work with the child as a source of information about their child's condition, followed by the Internet (53%). In the last 12 months, 60% of participants had difficulties with the availability of services in their area or problems getting appointments. The biggest problem in getting support was ensuring the child's basic rights were protected. Participants stated that ensuring greater rights for CDD was the greatest need for their families. CONCLUSION: Parents/caregivers of CDD in Croatia, North Macedonia, and Serbia faced multiple challenges, but most of them were satisfied with the services provided to their children. Future efforts to develop policies and services related to CDD should consider the opinions of their parents/caregivers and disparities in access to services.

Relationship between sleep disturbance and developmental status in preschool-aged children with developmental disorder.

BACKGROUND: Sleep has been known to affect childhood development. Sleep disturbance is likely more common in children with developmental delay (DD) than in typical development. There are few studies on the correlation between sleep disturbance and developmental features in children with DD. Therefore, this study aimed to evaluate the associations between the two in children with DD. METHODS: A total of 45 children (age range 27.0 ± 11.1) with DD were recruited and evaluated using the Sleep Disturbance Scale for Children (SDSC) and Bayley Scales of Infant and Toddler Development (BSID-III). The outcomes are expressed as means and standard deviations. The correlation between SDSC and BSID-III was assessed using Spearman's rank correlation test. Multiple regression analysis was performed to investigate the relationship between BSID-III domains and SDSC questionnaire subscales. Statistical significance was set at p < 0.05. RESULTS: Based on the correlation analysis and subsequent hierarchical regression analysis, cognition and socio-emotional domains of BSID-III were significantly associated with the DOES subscale of the SDSC questionnaire. In addition, the expressive language domain of the BSID-III was found to be associated with the DA subscale of the SDSC questionnaire. It seems that excessive daytime sleepiness might negatively affect emotional and behavioral problems and cognitive function. Also, arousal disorders seem to be related to memory consolidation process, which is thought to affect language expression. CONCLUSION: This study demonstrated that DA and DOES subscales of the SDSC questionnaire were correlated with developmental aspects in preschool-aged children with DD. Sleep problems in children with DD can negatively affect their development, thereby interfering with the effectiveness of rehabilitation. Identifying and properly managing the modifiable factors of sleep problems is also crucial as a part of comprehensive rehabilitation treatment. Therefore, we should pay more attention to sleep problems, even in preschool-aged children with DD.

Motivation in caregiving among mothers of children with intellectual and developmental disabilities in Iran: A qualitative study.

BACKGROUND: The motivation of caregivers plays a crucial role in the treatment, follow-up, and care of children with intellectual and developmental disabilities. Previous studies have focused on the older people and end-stage diseases, while giving less attention to the motivation of mothers caring for children with special needs. This study aimed to explore the motivations of mothers caring for children with intellectual and developmental disabilities in Iran. METHODS: This study employed a qualitative approach, guided by the Self-Determination Theory. Purposeful sampling was initially used, followed by theoretical sampling until data saturation was achieved. Data were collected through semi-structured interviews with 26 mothers of children with intellectual and developmental disabilities. Mayring's seven-step directed content analysis approach was utilized for coding and categorization. The research adhered to ethical standards and ensured data trustworthiness through credibility, dependability, confirmability, and transferability measures. RESULTS: The findings revealed that mothers' caregiving motivations could be classified into four main categories: (I) intrinsic, (II) identified-extrinsic, (III) introjected-extrinsic, and (IV) external-extrinsic. Additionally, twelve sub-categories were identified within these four main categories. CONCLUSION: The findings revealed that mothers demonstrated varying levels of intrinsic and extrinsic motivations in caring for children with intellectual and developmental disabilities. By recognizing and enhancing the diverse sources of motivation, healthcare providers and policymakers can better support mothers in their caregiving roles, ultimately contributing to improved outcomes for both the mothers and their children.

Using Longitudinal Twitter Data for Digital Epidemiology of Childhood Health Outcomes: An Annotated Data Set and Deep Neural Network Classifiers.

We manually annotated 9734 tweets that were posted by users who reported their pregnancy on Twitter, and used them to train, evaluate, and deploy deep neural network classifiers (F1-score=0.93) to detect tweets that report having a child with attention-deficit/hyperactivity disorder (678 users), autism spectrum disorders (1744 users), delayed speech (902 users), or asthma (1255 users), demonstrating the potential of Twitter as a complementary resource for assessing associations between pregnancy exposures and childhood health outcomes on a large scale.

Human immunodeficiency virus diagnosis and care among adults with intellectual and developmental disabilities who are publicly insured.

BACKGROUND: This study aimed to assess the prevalence of human immunodeficiency virus (HIV) testing, HIV diagnosis and receipt of HIV care among adults with intellectual and developmental disabilities (IDDs) who are publicly insured in the USA. DESIGN: This study is a cross-sectional analysis of Medicare-Medicaid linked data of adults with IDD who were publicly insured in 2012 (n = 878 186). METHODS: We estimated adjusted prevalence ratios of HIV testing, diagnosis and receipt of antiretroviral therapy (ART). We also identified the relationship between predisposing (age, gender, race and ethnicity), enabling (Medicare, Medicaid or both; rural status; geographical location; and county income) and need-related characteristics (IDD diagnosis and other co-occurring conditions) associated with these outcomes. RESULTS: Only 0.12% of adults with IDD who had no known HIV diagnosis had received an HIV test in the past year. The prevalence of HIV diagnosis among adults with IDD was 0.38%, although differences by type of IDD diagnosis were observed. Prevalence of HIV diagnosis differed by type of IDD. Among adults with IDD who were living with HIV, approximately 71% had received ART during 2012. The adjusted analyses indicate significant racial disparities, with Black adults with IDD making up the majority (59.11%) of the HIV-positive IDD adult population. CONCLUSIONS: Adults with IDD are a unique priority population at risk for HIV-related disparities, and the level of risk is differential among subtypes of IDD. People with IDD, like other people with disabilities, should be considered in prevention programming and treatment guidelines to address disparities across the HIV care continuum.

Psychosocial development measures modification for adolescents with intellectual and developmental disabilities.

BACKGROUND: Although diagnosis and identification of IDD is improving, adolescents with IDD receive limited attention in research, particularly concerning their psychosocial development. Measures developed and normed with typically developing populations may not be appropriate for IDD populations and may result in biased assessment. AIM: This study aimed to develop and validate modified psychosocial development assessments for adolescents with intellectual and developmental disabilities (IDD), addressing the absence of such assessments. METHOD: It involved two phases: modifying existing instruments and validating the revised versions. Four stakeholder groups participated: adolescents with IDD, parents, and scholars in adolescent developmental and disabilities. Validation included two groups: neurotypical adolescents completing both measures and IDD adolescents completing modified measures. RESULTS: Confirmatory factor analyses identified the need to adjust or eliminate scales for better understanding by individuals with IDD. The modified instruments provided suitable measures for assessing psychosocial development in adolescents with IDD. DISCUSSION: All the scales allowed for accommodation toward comprehension for those with IDD except for identity formation. Further work is needed to understand the challenges associated with assessing identity formation in adolescents with IDD. The active involvement of and participation from adolescents with IDD and their parents in this research was paramount to understanding their comprehension and needs. CONCLUSION: This study highlights the importance of tailored assessments for accurate measurement of IDD individuals' development, benefiting the assessment of all adolescents.

Relationship between emotion comprehension, vocabulary, and verbal working memory in intellectual developmental disorders: involvement of verbal reasoning skills.

This study investigated the role of language-related abilities in emotion comprehension among young people with non-specific intellectual developmental disorders (NS-IDDs). Forty children and adolescents with NS-IDDs completed tasks assessing emotion comprehension, receptive vocabulary, verbal reasoning skills, and verbal working memory. Results showed that emotion comprehension was better predicted by comprehension of abstract words and verbal working memory, and that these two predictors were themselves predicted by verbal reasoning skills. These results therefore suggest a link between emotion understanding and verbal reasoning, which could be mediated by abstract vocabulary and verbal working memory. These findings provide insight into the relationships between emotion comprehension and language-related abilities in NS-IDDs.

Caregiver education programme on intellectual and developmental disabilities: An acceptability and feasibility study in an academic medical setting.

BACKGROUND: Children and adolescents with intellectual and developmental disabilities (I/DD), including autism spectrum disorder, benefit from a variety of specialized interventions. However, there are barriers that impact families' ability to access such services for their children. While not intended as a replacement for individualized or group-based interventions, educational classes may be an option in providing supplemental resources and support to families of individuals with I/DD. This study was a programme evaluation that examined the feasibility and acceptability of a Caregiver Education Program that was created in an outpatient specialty clinic of an academic medical centre, designed to provide educational information on a variety of topics relevant to children and adolescents with I/DD (e.g., toilet training, understanding behaviour and managing anxiety). METHOD: The review included 1027 participants from 40 classes led by licensed clinicians, trainees, and/or experienced caregivers. Classes occurred approximately one time per month over the course of three-and-a-half years and targeted caregivers of children and adolescents with I/DD and community-based professionals in the field of I/DD. Participants were able to attend one or multiple classes, based on their interest in the given topic. Participants were asked to complete post-training surveys at the end of each session as part of ongoing programme evaluation. RESULTS: Participants reported a high level of satisfaction and increased knowledge as a result of participating in classes, and higher knowledge gained and higher satisfaction for in-person classes compared to virtual classes. CONCLUSIONS: This programme is one model of education delivery with high acceptability and feasibility, designed to support families and increase access to information beyond specialized interventions. Future directions include improving the model of programme data collection, examination of the programme's generalization to practice and to other communities, and an emphasis on culturally responsive curricula.

Telehealth services for children with neuro-developmental disabilities in the Asia-Pacific region: A systematic review.

BACKGROUND: In recent years telehealth became a popular and a rational health service delivery approach, especially amidst multiple challenges posed while providing health care interventions during the COVID-19 pandemic. AIM: We synthesized available evidence on telehealth for managing children with NDDs in the Asia-Pacific region with the aim of identifying successful methods. METHODOLOGY: We systematically reviewed six electronic databases: MEDLINE, AMED, EMBASE, PsychInfo, Web of Science, and (CINAHL plus) using the keywords and database-specific subject headings from their inception to 25th August 2021. Review findings were synthesized narratively, and harvest plots were used to demonstrate the effect of interventions. The protocol and reporting the findings of this review adhered to PRISMA 2020 guidelines. PROSPERO registration: CRD 340690. RESULTS: We harvested 30,823 records; 17,563 duplicates were removed, and 196 full-text articles were assessed for eligibility. 16 studies with multiple research designs were included in the review. Eight were from the Pacific region and eight represented Asia. The interventions targeted families and children with a variety of NDDs (autism spectrum disorder, Down syndrome, cleft lip and palate, hearing impairment, cerebral palsy etc.) via telehealth. Telehealth packages consisted of direct and indirect methods of synchronous, asynchronous, and hybrid approaches. All studies used parent-led intervention strategies. Telehealth reported a positive effect in 7/16 studies while five showed a neutral effect. CONCLUSIONS: According to published evidence telehealth for children with NDDs is an evolving, evidence-based service facilitation modality in the Asia-Pacific region, with only a few published randomized controlled trials. The systematic review shows promising telehealth practices emerging across the region despite the diversity in NDDs studied.

Collaboration: How does it work according to therapists and parents of young children? A systematic review.

BACKGROUND: Collaboration between therapists and parents of children with developmental disabilities is a key element of family-centred care. In practice, collaboration appears to be challenging for both parents and therapists. This systematic review aims to make explicit how therapists can optimise their collaboration with parents of young children with developmental disabilities, according to the perspectives of parents and therapists. METHODS: A systematic review was conducted using the following databases: Medline (PubMed), CINAHL (OVID) and PsychINFO (OVID). Those papers were selected, which focused on collaboration using a two-way interaction between therapists and parents, exploring the perspectives of therapists and/or parents of children between 2 and 6 years. Papers needed to be published in English or Dutch between 1998 and July 2021. Included papers were synthesised using a qualitative analysis approach by two researchers independently. Results sections were analysed line-by-line, and codes were formulated and discussed by all authors. Codes were aggregated, resulting in a synthesis of specific collaboration strategies in combined strategy clusters. RESULTS: The search generated 3439 records. In total, 24 papers were selected. Data synthesis resulted in an overview of specific strategies organised into five clusters: (1) continuously invest time in your collaboration with parents, (2) be aware of your important role in the collaboration with parents, (3) tailor your approach, (4) get to know the family and (5) empower parents to become a collaborative partner. CONCLUSIONS: This systematic review resulted in an overview of concrete strategies for therapists to use in their collaboration with parents of children with developmental disabilities. The strategies formulated enable therapists to consciously decide how to optimise their collaboration with each individual parent. Making these strategies explicit facilitates change of practice from therapist-led and child-centred towards family-centred care.