Diagnosis Of Developmental Disability Research Articles

The Experiences of the Life of A Mother with A Developmentally Disabled Child: Parse's Human Becoming Research Method

Purpose: The aim of this study was to investigate the experiences of mothers raising a child with developmental disabilities.Methods: The participants of this study were 9 mothers who had children with developmental disorders. Parse’s research method was used to analyze the experiences of these mothers.Results: The analysis revealed the following structure of their lived experiences: denial of the developmental disability diagnosis and the resulting pain from feelings of frustration, confusion, and guilt; a sense of hopelessness for the future and the emotional scars left by negative judgment; the pursuit of a happy future for their children; and finding new meaning in their children’s diagnoses.Conclusion: Despite the persistent pain and guilt experienced by these mothers, they can view their lives in a positive light by exploring the significance of their own experiences. These findings suggest that these mothers should recognize themselves as recipients of social support services and seek professional assistance in overcoming the various challenges associated with raising a child with developmental disabilities.

Predictors of Access to Early Support in Families of Children with Suspected or Diagnosed Developmental Disabilities in the United Kingdom

This study examined predictors of access to early support amongst families of 0-6-year-old children with suspected or diagnosed developmental disabilities in the United Kingdom. Using survey data from 673 families, multiple regression models were fitted for three outcomes: intervention access, access to early support sources, and unmet need for early support sources. Developmental disability diagnosis and caregiver educational level were associated with intervention access and early support access. Early support access was also associated with child physical health, adaptive skills, caregiver ethnicity, informal support, and statutory statement of special educational needs. Unmet need for early support was associated with economic deprivation, the number of household caregivers, and informal support. Multiple factors influence access to early support. Key implications include enhancing processes for formal identification of need, addressing socioeconomic disparities (e.g., reducing inequalities, increasing funding for services), and providing more accessible services (e.g., coordinating support across services, flexible service provision).

Prevalence and risk factors of developmental disabilities among preschool children in the Arab world: a narrative literature review.

Developmental disabilities (DDs) are a global childhood problem whose prevalence is rising, with a disproportionate impact on individuals in low-and middle-income countries. However, data on the prevalence of DDs in the Arab world are limited. This review highlights what is currently known about the prevalence and risk factors of DDs in preschool children in the Arab world. PubMed, Cochrane Library, Scopus, CINAHL, Science Direct, and Google Scholar were searched for publications on DDs among preschool children in the Arab world. Only 14 studies were identified in the literature, from 12 Arab countries. The overall estimated prevalence of DDs among preschool children in the Arab world is 27.5%. An analysis of risk factors for DDs showed that child-related, maternal, and family-related factors account for a significant cumulative risk of developing DDs in preschool children. Maternal factors, such as antenatal and perinatal complications, were the most common risk factors. The prevalence of DDs among preschoolers is significantly high in the Arab world, which emphasizes the importance of the early detection and diagnosis of DD, as well as its associated risk factors.

Barcoding, linear and nonlinear analysis of full-day leg movements in infants with typical development and infants at risk of developmental disabilities: Cross-sectional study.

Traditional methods do not capture the multidimensional domains and dynamic nature of infant behavioral patterns. We aim to compare full-day, in-home leg movement data between infants with typical development (TD) and infants at risk of developmental disabilities (AR) using barcoding and nonlinear analysis. Eleven infants with TD (2-10 months) and nine infants AR (adjusted age: 2-14 months) wore a sensor on each ankle for 7 days. We calculated the standard deviation for linear variability and sample entropy (SampEn) of leg acceleration and angular velocity for nonlinear variability. Movements were also categorized into 16 barcoding states, and we calculated the SampEn and proportions of the barcoding. All variables were compared between the two groups using independent-samples t-test or Mann-Whitney U test. The AR group had larger linear variability compared to the TD group. SampEn was lower in the AR group compared to TD group for both acceleration and angular velocity. Two barcoding states' proportions were significantly different between the two groups. The results showed that nonlinear analysis and barcoding could be used to identify the difference of dynamic multidimensional movement patterns between infants AR and infants with TD. This information may help early diagnosis of developmental disabilities in the future.

Developmental Disabilities in the Context of Fragile Families: Racial and Ethnic Disparities at Age Nine

Abstract Racial–ethnic disparities in the diagnosis of certain developmental disabilities (DDs), such as autism spectrum disorder (ASD), contribute to delayed treatment for Latinx children. Although recent data suggest the disparities are mitigated over time, Latinx children are still less likely to have an ASD diagnosis, and those from low-income families are disproportionately affected. To build on previous research emphasizing these racial–ethnic disparities, this study focused on families in vulnerable or underserved communities, including female-headed and low-income households. Multiple waves of the Fragile Families and Child Wellbeing Study were analyzed, so that this sample represents populations mainly served by social workers. After controlling for demographic and socioeconomic factors, and behavioral health symptoms, authors estimated the likelihood of receiving a diagnosis for a particular developmental disorder and overall DDs. Compared with children of non-Latina White mothers, children of Latina mothers were less likely to have an ASD diagnosis. Findings confirm the lingering racial–ethnic gaps in diagnoses, even among female-headed households and low-income families. Further, authors suggest interventions addressing systematic and cultural barriers for equitable diagnosis of DDs that target pediatricians and other behavioral health providers, teachers, and Latinx families and communities.

A Prediction Model for Detecting Developmental Disabilities in Preschool-Age Children Through Digital Biomarker-Driven Deep Learning in Serious Games: Development Study.

BackgroundEarly detection of developmental disabilities in children is essential because early intervention can improve the prognosis of children. Meanwhile, a growing body of evidence has indicated a relationship between developmental disability and motor skill, and thus, motor skill is considered in the early diagnosis of developmental disability. However, there are challenges to assessing motor skill in the diagnosis of developmental disorder, such as a lack of specialists and time constraints, and thus it is commonly conducted through informal questions or surveys to parents.ObjectiveThis study sought to evaluate the possibility of using drag-and-drop data as a digital biomarker and to develop a classification model based on drag-and-drop data with which to classify children with developmental disabilities.MethodsWe collected drag-and-drop data from children with typical development and developmental disabilities from May 1, 2018, to May 1, 2020, via a mobile application (DoBrain). We used touch coordinates and extracted kinetic variables from these coordinates. A deep learning algorithm was developed to predict potential development disabilities in children. For interpretability of the model results, we identified which coordinates contributed to the classification results by applying gradient-weighted class activation mapping.ResultsOf the 370 children in the study, 223 had typical development, and 147 had developmental disabilities. In all games, the number of changes in the acceleration sign based on the direction of progress both in the x- and y-axes showed significant differences between the 2 groups (P<.001; effect size >0.5). The deep learning convolutional neural network model showed that drag-and-drop data can help diagnose developmental disabilities, with an area under the receiving operating characteristics curve of 0.817. A gradient class activation map, which can interpret the results of a deep learning model, was visualized with the game results for specific children.ConclusionsThrough the results of the deep learning model, we confirmed that drag-and-drop data can be a new digital biomarker for the diagnosis of developmental disabilities.

Republication de : recommandations de bonnes pratiques pour annoncer un diagnostic de handicap aux parents

Conveying a diagnosis of a disability to the parents of young children is difficult both for the parent and the clinician; however, there is an ethical and medical imperative to do so. However, the process and manner of disclosure needs to be done well. When communication between parent and clinicians fails, parental mental health can be adversely affected. This paper adapts and explains how to use the SPIKES protocol to deliver “bad news” about a developmental disability diagnosis with families of infants<12 months old, using cerebral palsy as an example. Next, the range of responses parents experience to the delivery of bad news from “watchful waiting” to “acceptance” are outlined and explained. The knowledge needs of parents range from causes and prognosis to treatments and outcomes. Using clinical scenarios of recently diagnosed infants, commonly asked questions and suggested answers are tabled.

Confident championing: A grounded theory of parental adjustment following a child’s diagnosis of developmental disability

Accessible summary This paper is about how parents adjust to parenting their child who has a developmental disability. We spoke to parents about their experiences and developed a theory to help explain how parents adjust when their child has a developmental challenge. As well as describing the stress, that parents experience, this theory also captures the fulfilment and sense of purpose that parents experience as they parent their child. This research is important because it helps explain what happens for parents after their child's diagnosis and provides suggestions on how services can improve to help families. AbstractThis paper describes a study exploring the parental response to the diagnosis of their child's developmental disability. A classic grounded theory methodology was used to analyse data comprising 19 interviews and 11 memoirs written by parents. The theory explains how parents adjust to champion their child, who has been identified as having a developmental challenge. At the heart of becoming a champion is a psychological process in which parents refine their perspectives on disability awareness, their aspirations and parenting capacity as they develop their championing skills. Refining perspectives and championing are influenced by two factors: the nature of the child's challenges and service factors. The theory of Confident Championing offers a multivariant model that explains the dynamic nature of the adjustment process, capturing both the stress and the fulfilment and sense of purpose that parents experience.

Weight outcomes in children with developmental disabilities from a multidisciplinary clinic

BackgroundChildren with developmental disabilities experience disparately high rates of obesity yet there are few reports detailing clinical outcomes for this population. AimTo describe outcomes of obesity treatment for children with developmental disabilities and a comparison group of children without developmental disabilities. Methods and proceduresWe examined weight outcomes of children with and without developmental disabilities seen in a family-centered, multidisciplinary treatment center over a ten-year period. We stratified by age and developmental disability diagnosis. We assessed whether intake demographic or health behavior data was associated with successful reduction of adiposity over six and twelve month follow-up periods, using a ≥5% absolute reduction in percent over the 95th percentile body mass index (BMIp95) as the primary outcome. Outcomes and resultsOver a ten-year period, 148 of 556 children in the obesity clinic (27 %) had a developmental disability. In children <12 years of age, 36 % of children with developmental disabilities reduced their adiposity compared with 18 % of children without developmental disabilities at six months, p = .01. This pattern continued at twelve months. Active transport to school was associated with reduced adiposity for those without a disability. Older children with disabilities rarely had a significant reduction (2 of 26 children), and they took more medications with weight-related side effects. Conclusions and implicationsYounger children with developmental disabilities experienced relative success in reducing their adiposity. Challenges to addressing obesity in this population include structural barriers to physical activity and medications for behavioral management with weight-related side effects.

The views and experiences of fathers regarding their young child's intellectual and developmental disability diagnosis: Findings from a qualitative study.

To report the views and experiences of fathers following their child's diagnosis of an intellectual and developmental disability (IDD). There is a growing interest in understanding the experiences of fathers of children with IDD given the transformation of the structural change of fathers' roles within the family and wider society. A qualitative design was used to elicit the view and experiences of fathers. A total of ten Irish fathers participated in face-to-face interviews. The data were thematically analysed. The COREQ guidelines for reporting qualitative studies were used in the development of this paper. The key themes that emerged were (a) the confirmation of the child's diagnosis (b) the impact of the diagnosis and (c) father's motivation to participate in disability research. This study informs and develops a further understanding of the international evidence base of fathers receiving a confirmation of a child's diagnosis of an intellectual and developmental disability, the impact of the diagnosis on fathers and their motivation to share their stories to add to the disability research. Health and social care practitioners have important contributions to make in meeting the needs of fathers. There are specific areas to consider in terms of practice, education and research that require further attention and development to ensure fathers' distinct needs regarding their child's diagnosis of IDD are known and responded to effectively. This study highlights that when the child's disability is confirmed, fathers experience a diverse range of mixed emotions. Health and social care practitioners including nurses need to be aware of the impact of the diagnosis upon fathers. There is scope to develop the knowledge, skills and confidence of health and social care practitioners regarding the experiences of fathers and how they can further support fathers and their families during the critical time of a disability disclosure.

Understanding the Systems, Contexts, Behaviors, and Strategies of Parents Advocating for Their Children With Down Syndrome.

In the current qualitative research study, we focused on understanding the ecological systems, contexts, behaviors, and strategies of parents ( N = 435) advocating for their children with an intellectual and developmental disability diagnosis, specifically Down syndrome (DS). Based on the data analysis, parents of children with DS advocate for their children frequently, in a variety of settings, with different actions, attitudes, motivations, and outcomes. The most common settings where advocacy occurred were primarily school and healthcare systems. The goals of parents often included inclusiveness, equality, and acceptance, whereas a few parents reported advocating due to discrimination and judgment. Implications for further research and professional practice also are described.

A new computational intelligence approach to detect autistic features for autism screening

Autism Spectrum Disorder (ASD) is one of the fastest growing developmental disability diagnosis. General practitioners (GPs) and family physicians are typically the first point of contact for patients or family members concerned with ASD traits observed in themselves or their family member. Unfortunately, some families and adult patients are unaware of ASD traits that may be exhibited and as a result do not seek out necessary diagnostic services or contact their GP. Therefore, providing a quick, accessible, and simple tool utilizing items related to ASD to these families may increase the likelihood they will seek professional assessment and is vital to the early detection and treatment of ASD. This study aims at identifying fewer, albeit influential, features in common ASD screening methods in order to achieve efficient screening as demands on evaluating the items’ influences on ASD within existing tools is urgent. To achieve this aim, a computational intelligence method called Variable Analysis (Va) is proposed that considers feature-to-class correlations and reduces feature-to-feature correlations. The results of the Va have been verified using two machine learning algorithms by deriving automated classification systems with respect to specificity, sensitivity, positive predictive values (PPVs), negative predictive values (NPVs), and predictive accuracy. Experimental results using cases and controls related to items in three common screening methods, along with features related to individuals, have been analysed and compared with results obtained from other common filtering methods. The results exhibited that Va was able to derive fewer numbers of features from adult, adolescent, and child screening methods yet maintained competitive predictive accuracy, sensitivity, and specificity rates.

Assessing Adaptive Functioning in Preschoolers Referred for Diagnosis of Developmental Disabilities

Adaptive function is an essential dimension in the diagnosis of neurodevelopmental conditions in young children, assisting in determining the pattern of intellectual function and the amount and type of support required. Yet, little information is available on the accuracy of currently used adaptive function assessments for preschool children. This study compares the results of 2 commonly used assessments, the Adaptive Behavior Assessment System (ABAS-II) and the Vineland Adaptive Behavior Scales, Second Edition (Vineland-II), on a group of 52 preschoolers referred for investigation of delays in development. Standard scores on the Vineland-II were significantly higher than those on the ABAS-II, but both assessment scores could be used to identify patterns of adaptive functioning that would require support. The amount and type of support required could not be determined by standard scores on either assessment. Greater consistency between scales and grading the level of support required was achieved using age equivalent scores. Age equivalent scores on individual subscales showed motor and preacademic skills that were consistent with developmental level; performance on all other subscales was lower than developmental level. This study supports the use of standard scores to identify significant impairment in adaptive function and age equivalent quotient scores to describe the amount and area of support required.

Psychotropic Medication Adherence among Community-Based Individuals with Developmental Disabilities and Mental Illness

Psychotropic medications are a common treatment for mental illness in people with developmental disabilities. Medication adherence is a critical determinant of the effectiveness of psychotropic drugs, but psychotropic medication adherence research specific to this population remains limited. This retrospective study analyzed Marketscan® Multi-State Medicaid Database 2003–2007 data. A total of 3,905 eligible community-based Medicaid enrollees aged 18–64 with dual diagnosis of developmental disability and mental illness were included and followed over an average of 510 days. Medication adherence was measured by Proportion of Days Covered (PDC), and logistic regression was used to assess factors associated with adherence. The mean PDC was 0.86, and the non-adherence rate was 25.7%. Factors associated with poor psychotropic medication adherence included minority race/ethnicity, female gender, enrollment in a Medicaid capitated plan, and having gastroesophageal reflux disease (GERD). Better psychotropic medication adherence was related to reductions in emergency room visits, suggesting better utilization outcomes.

Elevated Burden for Caregivers of Children with Persistent Asthma and a Developmental Disability

To evaluate how having a child with both persistent asthma and a developmental disability (DD) affects caregiver burden and quality of life (QOL). 3-10 year old children with persistent asthma in urban Rochester, NY. Cross-sectional baseline survey (2006-2009). Parent report of autism spectrum disorder or other behavioral disorder requiring medication. Caregiver burden and QOL as measured by scores on previously validated depression, parenting confidence, and asthma-related QOL scales as well as an assessment of competing demands on the caregiver. Bivariate and multivariate regression analyses controlling for caregiver age, education, marital status, race, ethnicity, and child asthma symptom severity. We enrolled 530 children as part of a larger study (response rate: 74; 63 % Black, 73 % Medicaid). Of this sample, 70 children (13 %) were defined as having a DD. There were no differences in asthma symptom severity between children with and without a DD diagnosis. However, even after adjusting for potential confounders, caregivers of children with a DD reported worse scores on the depression (p = .003), parenting confidence (p < .001), and competing demands (p = .013) scales and worse asthma-related QOL (p = .035) compared to caregivers of typically developing children with asthma. Despite having similar asthma symptom severity, caregivers of children with both persistent asthma and a DD diagnosis report more burden and lower QOL compared to that of caregivers of typically developing children and persistent asthma. Further attention to this subgroup is needed to promote optimal support for caregivers.

The pivotal role of parents in documenting early development

To assess trends and potential atypicalities in various developmental domains of children with a late diagnosis of developmental disabilities [e.g. autism spectrum disorders (ASD), Rett syndrome, fragile X syndrome] clinicians and researchers partly rely on retrospective information provided by the parents. Although caregivers have often been regarded as “naive” or “biased” informants when documenting or delineating their children's specific abilities, the study by Kern suggests that “the benefit of studying parental reports may out-weigh the limitations.”[1] In fact, numerous studies report a high concurrent validity of parental interviews/questionnaires/checklists with standardized assessments, for example when documenting on the early speech-language and communicative development.[2,3] On the contrary, parental reports are also limited in their applicability as they do not allow for a documentation of the frequency with which children use particular vocabulary types, nor of the phonological development, and so on.[3] In terms of retrospective data, we face additional limitations such as (a) the time lag (especially in case of conditions with a late clinical manifestation); (b) the awareness of diagnosis at the time of the interview; and (c) memory bias. Especially when documenting the onset of a particular behavior, specific aspects of regression, or frequencies of atypicalities, parental reports soon reach their limits.[4,5] But how can we circumvent these problems? One way of analyzing early behavioral abnormalities and their developmental trends in detail is the assessment of family videos recorded at a time when parents were not aware of the neurodevelopmental disability of their child. Retrospective video analysis has proved to be a valuable and practical instrument for identifying behavioral features that are hard to capture otherwise.[5,6,7] Yet the retrospective video analysis also has its limitations, and a combination of both video analysis and parental reports is still the subject of controversy. Both methods have their strengths, including the fact that they are based on observations made in natural settings. On the contrary, studies (e.g.[5]) have shown that video footage reveals more accurate data than parental questionnaires, especially when there is a long lapse of time between the interview and the period of interest. Video analyses allow precise descriptions of observable phenomena, although behavioral patterns missing in the assesment are not necessarily absent.[5,6,7]

The Use of the Bayley Scales of Infant and Toddler Development III with Clinical Populations: A Preliminary Exploration

ABSTRACTIn response to concerns that the Bayley Scales of Infant and Toddler Development III (BSIDIII) underestimate delay in clinical populations, this study explores developmental quotient scores as an alternative to composite scores for these children. One hundred and twenty-two children aged ≤42 months, referred for diagnosis of developmental disability from January 2007 to May 2010, were assessed, and their composite and developmental quotient scores on each scale were compared. Composite scores identified only 22% (cognitive), 27% (motor), and 47.5% (language) of children as having a developmental disability. Developmental quotient scores were significantly lower than composite scores, giving rates of developmental disability of 56.6% (cognitive), 48.4% (motor), and 74.6% (language) and more closely matching both clinical impressions of delay and the proportions of those children who were also delayed on standardized tests of adaptive function.

Risk factors of children who exited from an early intervention program without an identified disability and returned with a developmental disability

A retrospective cohort study was undertaken to identify risk factors for children at greatest risk of delayed diagnosis of developmental disability. Two thousand four hundred and thirty-nine children were selected for this study due to their participation in the California Early Start (ES) Program in 1998. Comparisons were made among children that had no break in services offered through the ES Program versus children that returned with a disability after exiting the ES Program. Factors examined include child's condition and qualifying risk factors, mother's demographic characteristics, family's risk factors, and risk scores developed for each county in which the family resided. Children with a delay in diagnosis of a disability have characteristics that fall outside the norm for the identification of a disability. It is not clear if this is related to age-specific manifestation to the appearance of a disability or to conditions difficult to diagnose.

The stability of the diagnosis of developmental disability between ages 2 and 8 in a geographic cohort of very preterm children born in 1997

ObjectiveStudies reporting the developmental outcomes for very preterm (VPT) children often focus on development at age 2 years. The aim of this study was to assess the stability of the...

Diagnosing Mr. Jefferson: Retrospectives on Developmental Disabilities at Monticello

For a number of years, I have been intrigued by what might be termed the retrospective diagnosis of developmental disabilities. In my book Minds Made Feeble: The Myth and Legacy of the Kallikaks (J. Smith, 1985), I expressed amazement that psychologist Henry Goddard in his study of the “good” and “bad” Kallikak families pronounced that a woman who had an illegitimate child in 1776 was “feebleminded.” This was 136 years after the birth of the child. In fact, Goddard diagnosed entire generations of Kallikaks who neither he nor anyone alive at that time had ever seen, let alone tested with even the most rudimentary of diagnostic techniques. Yet when his study was published in 1912, he asserted with confidence that he had found proof of a genetic basis for intellectual disabilities in these families.