Young Handicapped Children Research Articles

Exploring home visitors’ use and perceptions of developmental monitoring: A mixed methods study

Developmental monitoring is an early identification practice essential to identifying a developmental disability in young children. Families play a critical role in developmental monitoring and report greater reliance on community-based programs than on their children's physician to support child development; however, little research has focused on the role of community-based home visitors. We sought to understand home visitors’ experiences with families of young children specific to the recommended developmental monitoring components. Using a mixed methods approach, we surveyed 72 home visitors and interviewed 7 home visitors through focus groups. Results showed that home visitors used the recommended developmental monitoring components with several significant relationships, as well as the overall combined facilitating factors and combined use of the developmental monitoring components. Home visitors experienced varying facilitating factors and barriers, including the use of child development screening tools, cultural and linguistic diversity, and others. These findings indicate that the inclusion of home visitors in developmental monitoring is valuable to early identification practices.

Clinical utility and psychometric properties of tools for early detection of developmental concerns and disability in young children: A scoping review.

https://onlinelibrary.wiley.com/doi/10.1111/dmcn.16076

Clinical utility and psychometric properties of tools for early detection of developmental concerns and disability in young children: A scoping review.

To explore the clinical utility and psychometric properties of standardized tools for the early detection of developmental concerns or disability in young children. Systematic reviews and clinical practice guidelines containing psychometric data on tools appropriate for use with children from birth to 5 years 11 months were searched for in MEDLINE, CINAHL, Embase, and PsycINFO for the years 2000 to 2023, with no language restrictions. Eighty-six systematic reviews and six clinical practice guidelines guided identification of tools. A total of 246 tools were identified across domains of neurological, motor, cognition, communication/language, social-emotional, sensory processing, and/or specific diagnostic conditions of attention-deficit/hyperactivity disorder, autism spectrum disorder, cerebral palsy, developmental coordination disorder, and fetal alcohol spectrum disorder. After critical evaluation, 67 tools were included in the recommendations. Recommendations for screening and diagnostic assessment tools were based on best available evidence for predictive and discriminative validity, diagnostic accuracy, together with consideration of resource use and accessibility. This comprehensive scoping review provides recommendations on the best tools for primary care, medical, allied health professionals, nursing, and other health workers to detect and identify developmental concerns or disability in young children using evidence-based tools.

"Kind of empowered": Perceptions of socio-emotional development in children driving ride-on cars.

Early powered mobility (PM) experiences can be essential facilitators of self-initiated mobility, socialization, and exploration for young children with disabilities. Cerebral palsy (CP) and developmental delay are two of the most common diagnoses associated with motor disability in young children with 1 in 345 children diagnosed with CP and 1 in 6 with developmental delay in the US. The purpose of this study was to explore the longitudinal experiences and caregiver perceptions of socio-emotional development in particular, in young children with disabilities during modified ride-on car (ROC) use. A qualitative, grounded theory approach was used. Semi-structured interviews were conducted with 15 families (children ages 1-4 with CP or developmental delay) at baseline, 6 months (as able due to COVID), and 1 year following ROC introduction. Data were coded independently by three researchers using constant comparison until data saturation occurred and themes emerged. Four themes emerged from the data: "Leveling the Playing Field," "Breaking Down Barriers," "Fun and Work: ROC as Toy and Therapy Device," and "Mobility is a Pathway to Autonomy." Conclusions/Implication: Children and caregivers viewed ROCs as both fun and therapeutic, consistently identifying perceived benefits for children's socio-emotional development. This qualitative study provides a better understanding of the complexities and impact of ROCs on children and their families in the socio-emotional domain and may help facilitate clinical decision-making when introducing PM to young children with disabilities as part of a multimodal approach to early intervention. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Assessment of Co-Occurring Disabilities in Young Children Who are Deaf and Hard of Hearing

Overall, the literature is clear that more research is needed on various assessment techniques for identifying co-occurring disabilities in young children who are deaf and hard of hearing (DHH). As individualized, norm-referenced assessment measures are updated to keep up with the changing demographics of the United States, there appears to be more of an effort to include children with various disabilities within the standardization samples; however, the communication barriers and required assessment accommodations remain the most salient with DHH students. Because accommodations are test-specific, psychologists must be cognizant of the accommodation and interpretation procedures of each test they select for an assessment battery when attempting to determine co-occurring diagnoses or special education eligibility categories for young children who are DHH. This article reviews the literature on the assessment of common co-occurring disabilities in young children, including intellectual disability, specific learning disability, autism spectrum disorder, attention deficit hyperactivity disorder, and emotional and behavioral disorders.

Validating the 12-item proxy-administered World Health Organization Disability Assessment Schedule (WHODAS) 2.0 in young children with chronic physical illness in Canada

Purpose This study investigated the psychometric properties of the 12-item proxy-administered World Health Organization Disability Assessment Schedule (WHODAS) 2.0 in young children with chronic physical illness in Canada. Materials and methods Data come from the Multimorbidity in Youth across the Life-course, a longitudinal study of Canadian youth with physical illnesses (n = 263). Baseline parent-reported data from children (2–9 years, n = 143) and adolescents (10–16 years, n = 117) were analyzed. Wilcoxon’s tests examined differences in WHODAS 2.0 scores between subgroups. Internal consistency was estimated, and confirmatory factor analysis modeled the WHODAS 2.0 factor structure. Regression modeling examined if the WHODAS 2.0 could discriminate between children with vs. without mental comorbidity. Results Differences were found between children and adolescents regarding self-care and getting along, and for the item on emotional affect. Inter-item correlations were similar between subgroups and internal consistency was strong for children (α = 0.90) and adolescents (α = 0.93). The factor structure of the WHODAS 2.0 was confirmed; parameter estimates were similar between subgroups. The association between mental comorbidity and disability did not differ by age – comorbidity was associated with greater disability (β = 5.87, p < 0.01). Conclusions The 12-item proxy-administered WHODAS 2.0 appears valid and reliable in young children with physical illness and can be used in this population. Implications for rehabilitation The 12-item proxy-administered WHODAS 2.0 has acceptable inter-item correlations and internal consistency in young Canadian children with chronic physical illness, and its factor structure is consistent with previous reports Expansion of its use in measuring disability in young children provides the opportunity to use the WHODAS 2.0 across the life-course, facilitating the interpretation of changes in disability over time or in response to treatment Additional research is needed to determine responsiveness to change and the minimal clinically important difference of the WHODAS 2.0 in this population

Parents' satisfaction with a Canadian pilot clinic to reduce waiting lists for the assessment and diagnosis of autism spectrum disorder and intellectual disability in young children.

A large body of evidence suggest that parents of young children with autism spectrum disorder or intellectual disability experience low levels of satisfaction with the diagnostic evaluation process. This study sought to document parents' satisfaction with the services of a pilot clinic implemented in Québec, Canada. Two-hundred fifty-nine (259) parents were recruited following their child's diagnosis. A mixed methods approach was used to investigate parents' satisfaction globally and with specific aspects of the assessment process. Parents expressed overall high satisfaction with the assessment process. Parental satisfaction with specific aspects of the assessment process was negatively related to paternal stress, fathers' unemployment and household income and positively related to maternal stress. This pilot clinic could meet parents' needs at this crucial moment in their care and services trajectory. The factors associated with satisfaction in the present study may inform future improvements to its services.

Intellectual Disability in Young Children with Hearing Impairment

Background: Hearing impairment (HI) is an important disability hampering the overall development, particularly cognitive domain in children. Coexistence of HI with intellectual disability (ID) affects adversely the overall prognosis of a child. To highlight this underdetermined issue, this study has been done to determine the proportion of ID in children of HI. Materials and Methods: This cross-sectional study is held in children with HI of 0–42 months. In the study subjects, psychological assessment was done by Baily Scale of Infant Development III (BSID III). Detailed history was taken; physical examination was done in each patient after taking informed written consent. Hearing assessment was done by an audiologist and was leveled as mild, moderate, severe, and profound. Results: The study subject was 203, and mean age was 27.2 ± 8.7 (3–42) months. There was a slight male predominance. Majority of children mode of birth was lower uterine segment cesarean section. Neonatal seizure was significantly associated with intellectual impairment in the study subject (P &lt;0.001). No significant association of the HI was found in different levels of intellectual status of the children; however, 35% of the study subject had borderline intellectual status and most of them belonged to the profound HI. Conclusion: A significant proportion of the study subjects had borderline intellectual status, although very limited numbers had ID. Moreover, children with profound hearing loss were most affected.

Population prevalence of congenital disabilities among children aged 0-2 years resident in urban slums of Pune, India.

Background: Non-fatal birth defects and developmental disabilities are the most important causes of congenital disabilities in young children. This study was performed to determine the prevalence of congenital disabilities among children aged 0-2 years resident in urban slums of Pune. Methods: In 2016, using a random sampling method, 840 children from 28 registered slums located in each of the 14 wards of Pune city, India, were included in the study. Data on congenital disabilities and the clinical diagnosis responsible for the disability were collected. Data were also collected on selected risk factors for these conditions and current treatment through a structured questionnaire. Descriptive analysis was used to describe relationships among variables. Pearson’s chi-square test was used to determine associations, and the level of significance was established at P<0.05. Associations between outcomes of interest and risk factors were expressed as Odds Ratios (OR) at 95% Confidence Interval (CI). Results: In this age group, the prevalence of congenital disability was 1.67% (95% CI 0.91-2.78) (14/840). The prevalence of clinically diagnosed birth defects was 1.19% (95% CI 0.57-2.18) (10/840). The prevalence of developmental disabilities was 0.48% (95% CI 0.13-1.21) (4/840). Children with birth defects were more likely to be premature (P=0.045, OR=4.34, 95% CI=1.03-18.28) and low birth weight (P=0.003, OR=10.41, 95% CI=2.21-48.38). Only seven out of 14 children with birth defects and developmental disabilities were taken for treatment after the initial diagnosis. Conclusion: Birth defects and developmental disabilities are prevalent conditions. Community awareness, provision of appropriate medical and habilitation care, as well as screening and early intervention for these conditions are essential to prevent morbidities and ameliorate disabilities.

An approach to identifying young children with developmental disabilities via primary care records.

Background: Preschool aged children with developmental disabilities frequently receive a diagnosis of an indicator of disability, such as developmental delay, some time before receiving a definitive diagnosis at school age, such as autism spectrum disorder. The absence of a definitive diagnosis potentially underestimates the need for support by families with young disabled children, also delaying the access of families to condition-specific information and support. Our aim was to develop a strategy to identify children with probable and potential developmental disabilities before the age of five in primary care records for a UK birth cohort, considering how the identification of only probable or potential developmental disability might influence prevalence estimates. Methods: As part of a study of the effects of caring for young children with developmental disabilities on mothers' health and healthcare use, we developed a two-part strategy to identify: 1) children with conditions associated with significant disability and which can be diagnosed during the preschool period; and 2) children with diagnoses which could indicate potential disability, such as motor development disorder. The strategy, using Read codes, searched the electronic records of children in the Born in Bradford cohort with linked maternal and child sociodemographic information. The results were compared with national and Bradford prevalence estimates. Results: We identified 83 children with disability conditions and 394 with potential disability (44 children had a disability condition and an indicator of potential disability). Combined they produced a developmental disability prevalence of 490 per 10,000 which is above the UK estimate for developmental disabilities in children under five (468 per 10,000) and within the 419-505 per 10,000 prevalence estimated for Bradford (for children aged 0-18). Conclusions: When disability prevalence is estimated only using conditions diagnosed as developmental disabilities, most young children with developmental disabilities likely to be diagnosed at later ages will be missed.

An approach to identifying young children with developmental disabilities via primary care records

Background: Preschool aged children with developmental disabilities frequently receive a diagnosis of an indicator of disability, such as developmental delay, some time before receiving a definitive diagnosis at school age, such as autism spectrum disorder. The absence of a definitive diagnosis potentially underestimates the need for support by families with young disabled children, also delaying the access of families to condition-specific information and support. Our aim was to develop a strategy to identify children with probable and potential developmental disabilities before the age of five in primary care records for a UK birth cohort, considering how the identification of only probable or potential developmental disability might influence prevalence estimates. Methods: As part of a study of the effects of caring for young children with developmental disabilities on mothers’ health and healthcare use, we developed a two-part strategy to identify: 1) children with conditions associated with significant disability and which can be diagnosed during the preschool period; and 2) children with diagnoses which could indicate potential disability, such as motor development disorder. The strategy, using Read codes, searched the electronic records of children in the Born in Bradford cohort with linked maternal and child sociodemographic information. The results were compared with national and Bradford prevalence estimates. Results: We identified 83 children with disability conditions and 394 with potential disability (44 children had a disability condition and an indicator of potential disability). Combined they produced a developmental disability prevalence of 490 per 10,000 which is above the UK estimate for developmental disabilities in children under five (468 per 10,000) and within the 419-505 per 10,000 prevalence estimated for Bradford (for children aged 0-18). Conclusions: When disability prevalence is estimated only using conditions diagnosed as developmental disabilities, most young children with developmental disabilities likely to be diagnosed at later ages will be missed.

An approach to identifying young children with developmental disabilities via primary care records

Background: Preschool aged children with developmental disabilities frequently receive a diagnosis of an indicator of disability, such as developmental delay, some time before receiving a definitive diagnosis at school age, such as autism spectrum disorder. The absence of a definitive diagnosis potentially underestimates the need for support by families with young disabled children. Our aim was to develop a two-part strategy to identify children with probable and potential developmental disabilities before the age of five in primary care records for a UK birth cohort, considering how the identification of only probable or potential developmental disability might also influence prevalence estimates. Methods: As part of a study of the effects of caring for young children with developmental disabilities on mothers' health and healthcare use, we developed a two-part strategy to identify: 1) children with conditions associated with significant disability and which can be diagnosed during the preschool period; and 2) children with diagnoses which could indicate potential disability, such as motor development disorder and developmental delay. The strategy, using Read codes, searched the electronic records of children in the Born in Bradford cohort with linked maternal and child sociodemographic information. The results were compared with national and Bradford prevalence estimates, where available. Results: We identified 83 children with disability conditions and 394 with potential disability (44 children had both a disability condition and an indicator of potential disability). When combined, they produced a developmental disability prevalence of 490 per 10,000 which is above the UK estimate for developmental disabilities in children under five (468 per 10,000) and within the 419-505 per 10,000 prevalence estimated for Bradford (for children aged 0-18). Conclusions: When only conditions diagnosed as developmental disabilities are used for case ascertainment, most of the young children with developmental disabilities likely to be diagnosed at later ages will be missed.

The Effects of Caring for Young Children with Developmental Disabilities on Mothers\u2019 Health and Healthcare Use: Analysis of Primary Care Data in the Born in Bradford Cohort

We explored the association between caregiving for preschool children with developmental disabilities and maternal health and healthcare use using linked primary care and Born in Bradford birth cohort data. Adjusting for prenatal health, healthcare use and socioeconomic status, mothers who were caregivers were more likely than other mothers to have symptoms of psychological distress (odds ratio 1.24; 95% CI 1.01, 1.53), exhaustion (1.42; 1.12, 1.80) and possibly head and musculoskeletal pain (1.18; 0.97, 1.43). Despite the higher prevalence of symptoms, they did not access healthcare services more and may seek healthcare for psychological distress less often (0.64; 0.40, 1.02). In general, socioeconomic disadvantage was associated with worse health. Pakistani ethnicity (versus white British) and prenatal consultation were strongly associated with higher postnatal consultation rates. Prenatal ill health, healthcare use and socioeconomic status are important factors in the detection of postnatal ill health via primary care services. If caregiver burden and the risk of under-detecting (and thus under treating) caregiver ill health is not addressed during the preschool period health inequalities between caregivers and other mothers and their families may persist and grow. The health of mothers of young disabled children, in particular their unmet health needs, warrants attention in research and clinical practice.

A systemic immune challenge to model hospital-acquired infections independently regulates immune responses after pediatric traumatic brain injury

BackgroundTraumatic brain injury (TBI) is a major cause of disability in young children, yet the factors contributing to poor outcomes in this population are not well understood. TBI patients are highly susceptible to nosocomial infections, which are mostly acquired within the first week of hospitalization, and such infections may modify TBI pathobiology and recovery. In this study, we hypothesized that a peripheral immune challenge such as lipopolysaccharide (LPS)—mimicking a hospital-acquired infection—would worsen outcomes after experimental pediatric TBI, by perpetuating the inflammatory immune response.MethodsThree-week-old male mice received either a moderate controlled cortical impact or sham surgery, followed by a single LPS dose (1 mg/kg i.p.) or vehicle (0.9% saline) at 4 days post-surgery, then analysis at 5 or 8 days post-injury (i.e., 1 or 4 days post-LPS).ResultsLPS-treated mice exhibited a time-dependent reduction in general activity and social investigation, and increased anxiety, alongside substantial body weight loss, indicating transient sickness behaviors. Spleen-to-body weight ratios were also increased in LPS-treated mice, indicative of persistent activation of adaptive immunity at 4 days post-LPS. TBI + LPS mice showed an impaired trajectory of weight gain post-LPS, reflecting a synergistic effect of TBI and the LPS-induced immune challenge. Flow cytometry analysis demonstrated innate immune cell activation in blood, brain, and spleen post-LPS; however, this was not potentiated by TBI. Cytokine protein levels in serum, and gene expression levels in the brain, were altered in response to LPS but not TBI across the time course. Immunofluorescence analysis of brain sections revealed increased glia reactivity due to injury, but no additive effect of LPS was observed.ConclusionsTogether, we found that a transient, infection-like systemic challenge had widespread effects on the brain and immune system, but these were not synergistic with prior TBI in pediatric mice. These findings provide novel insight into the potential influence of a secondary immune challenge to the injured pediatric brain, with future studies needed to elucidate the chronic effects of this two-hit insult.

Increased mortality in very young children with traumatic brain injury due to abuse: A nationwide analysis of 10,965 patients

BackgroundTraumatic brain injury (TBI) is the leading cause of death and disability in young children; however, the impact of mechanism on outcomes has not been fully evaluated. We hypothesized that children with TBI due to abuse would have a higher mortality than children with accidental TBI due to motor vehicle collisions (MVC). MethodsWe performed a retrospective review of the National Kids’ Inpatient (KID) hospitalizations database of children <2 years old with TBI due to abuse or MVC (2000–2016). The primary outcome was mortality. Secondary outcomes were length of stay (LOS) and hospital charges. We investigated predictors of mortality with multivariable regression. ResultsOf 10,965 children with TBI, 65.2% were due to abuse. Overall mortality was 9.8% (n = 1074). Abused children had longer LOS (5.7 vs 1.6 days, p < 0.0001) and higher hospital charges ($34,314 vs $19,360, p < 0.0001) than children with TBI due to MVC. The odds of mortality were 42% higher in children with abusive head trauma (OR 1.42, 95% CI 1.10–1.83, p = 0.007) compared to MVCs after adjusting for age, race, sex, neurosurgical intervention, injury severity, and insurance. ConclusionChildren with abusive traumatic brain injury have increased risk of mortality, longer LOS, and higher hospital charges compared to children with TBI due to motor vehicle collision after adjusting for relevant confounders. Resources must be directed at prevention and early identification of abuse.

Rethinking Practices by Rethinking Expertise: A Relational Approach to Family-Centred Inclusive Services

This article focuses on the views and experiences of professionals providing specialised services to disabled children and their families. It is part of a larger research project that investigates the gap between policy ideals and service provision for young disabled children and their families in Iceland. Contrary to official policies, earlier findings based on the families’ perspectives reported strain and stress from fragmented and inflexible services. The findings presented here are based on three focus-group interviews, conducted with 13 professionals from six disciplines. The aim was to capture their views on their roles, responsibilities, and working conditions. A number of organisational and professional barriers were exposed along with an overall lack of awareness of the basic principles of family-centred services and the human rights relational approach to disability. Recommendations for service development are inspired by Edwards’ relational theory about building inter-professional and inter-organisational links to create high quality practices.

Ambient Exposure to Agricultural Pesticides during Pregnancy and Risk of Cerebral Palsy: A Population-Based Study in California.

Cerebral palsy (CP) is the most common neuro-motor disability in young children. Disruptions of maternal hormone function during pregnancy have been linked to CP risk. We investigated whether prenatal exposure to pesticide compounds with endocrine-disrupting action affect CP risk. We conducted a case-control study of 3905 CP cases and 39,377 controls born between 1998 and 2010 in California to mothers who lived in proximity (within 2 km) to any agricultural pesticide application recorded in the California Pesticide Use Reporting (PUR) system. We focused on 23 pesticides considered endocrine disruptors that are frequently used, and we found that exposure to any of the 23 pesticides in the first trimester was associated with elevated CP risks in female offspring (OR = 1.19; 95% CI: 1.05–1.35) but not males (OR = 0.99; 95% CI: 0.89–1.09) compared to the unexposed offspring. Positive associations were estimated for 15 pesticides suspected to affect the estrogen and 7 pesticides suspected to affect the thyroid hormone system. Our study suggests that first trimester exposure to pesticides that are suspected endocrine disruptors are associated with CP risk in female offspring. Pesticide exposures in early pregnancy may have sex-specific influences on the neuro-motor development of the fetus by interfering with endocrine systems.

Neurodevelopmental outcome is effectively ameliorated by kidney transplantation in children at 6 years of age: Comparison of two cases

Chronic kidney failure and end-stage renal disease are known to have detrimental effects on neurodevelopment in pediatric patients, particularly for toddlers and young children (≤6 years old) with developing brain. We present two toddler girls diagnosed of end-stage renal disease and receiving automated peritoneal dialysis at the age of 34 months. Their initial magnetic resonance imaging of brain revealed cerebral atrophy, enlarged ventricles and infarcts in main cerebellar territories. Both of them also had seizures. One girl underwent a kidney transplant 4 years after the initiation of peritoneal dialysis. Her post-transplant neuroimaging demonstrated insignificant structural abnormalities of brain. Besides, she doesn't present notable neurological problems clinically. On the contrary, the other uremic girl has suffered from long-lasting brain atrophy, uncontrolled epilepsy and cognitive function deterioration. Learning from these two contrasting cases, it is augmented that kidney transplantation can be a favorable and effective treatment as prevention of severe neurodevelopmental disabilities in young children with end-stage renal disease.

Adverse neuropsychiatric development following perinatal brain injury: from a preclinical perspective.

Perinatal brain injury is a leading cause of death and disability in young children. Recent advances in obstetrics, reproductive medicine and neonatal intensive care have resulted in significantly higher survival rates of preterm or sick born neonates, at the price of increased prevalence of neurological, behavioural and psychiatric problems in later life. Therefore, the current focus of experimental research shifts from immediate injury processes to the consequences for brain function in later life. The aetiology of perinatal brain injury is multi-factorial involving maternal and also labour-associated factors, including not only placental insufficiency and hypoxia-ischaemia but also exposure to high oxygen concentrations, maternal infection yielding excess inflammation, genetic factors and stress as important players, all of them associated with adverse long-term neurological outcome. Several animal models addressing these noxious stimuli have been established in the past to unravel the underlying molecular and cellular mechanisms of altered brain development. In spite of substantial efforts to investigate short-term consequences, preclinical evaluation of the long-term sequelae for the development of cognitive and neuropsychiatric disorders have rarely been addressed. This review will summarise and discuss not only current evidence but also requirements for experimental research providing a causal link between insults to the developing brain and long-lasting neurodevelopmental disorders.

Perioperative Care for Pediatric Patients With Penetrating Brain Injury: A Review.

Traumatic brain injury (TBI) continues to be the leading cause of death and acquired disability in young children and adolescents, due to blunt or penetrating trauma, the latter being less common but more lethal. Penetrating brain injury (PBI) has not been studied extensively, mainly reported as case reports or case series, due to the assumption that both types of brain injury have common pathophysiology and consequently common management. However, recommendations and guidelines for the management of PBI differ from those of blunt TBI in regards to neuroimaging, intracranial pressure (ICP) monitoring, and surgical management including those pertaining to vascular injury. PBI was one of the exclusion criteria in the second edition of guidelines for the acute medical management of severe TBI in infants, children, and adolescents that was published in 2012 (it is referred to as "pediatric guidelines" in this review). Many reviews of TBI do not differentiate between the mechanisms of injury. We present an overview of PBI, its presenting features, epidemiology, and causes as well as an analysis of case series and the conclusions that may be drawn from those and other studies. More clinical trials specific to penetrating head injuries in children, focusing mainly on pathophysiology and management, are needed. The term PBI is specific to penetrating injury only, whereas TBI, a more inclusive term, describes mainly, but not only, blunt injury.