Pub Date : 2024-04-20DOI: 10.1016/j.ridd.2024.104740
Alexandra Minuk, Jordan Shurr
Background
Little is known about the identification and educational placement of students considered to have intellectual disability in the Canadian context and, specifically, the province of Ontario.
Aims
The purpose of this study was to describe trends in the school-based identification of students with mild intellectual disability and developmental disability based on the Ontario criteria over a 14-year period, as well as current patterns characterizing classroom placement.
Methods
Using data provided by the Ontario Ministry of Education, a doubly multivariate analysis of variance and profile analysis were performed.
Results
Findings revealed a statistically significant decrease in the number of students identified with mild intellectual disability over time, and that students identified with developmental disability per the provincial criteria accessed their education in specialized settings at a significantly higher rate than their peers with mild intellectual disability.
Conclusions
Reasons for differences in the identification and placement of the two groups of students are explored relative to the research context.
{"title":"Identification and educational placement of students with intellectual disability in Ontario, Canada","authors":"Alexandra Minuk, Jordan Shurr","doi":"10.1016/j.ridd.2024.104740","DOIUrl":"https://doi.org/10.1016/j.ridd.2024.104740","url":null,"abstract":"<div><h3>Background</h3><p>Little is known about the identification and educational placement of students considered to have intellectual disability in the Canadian context and, specifically, the province of Ontario.</p></div><div><h3>Aims</h3><p>The purpose of this study was to describe trends in the school-based identification of students with mild intellectual disability and developmental disability based on the Ontario criteria over a 14-year period, as well as current patterns characterizing classroom placement.</p></div><div><h3>Methods</h3><p>Using data provided by the Ontario Ministry of Education, a doubly multivariate analysis of variance and profile analysis were performed.</p></div><div><h3>Results</h3><p>Findings revealed a statistically significant decrease in the number of students identified with mild intellectual disability over time, and that students identified with developmental disability per the provincial criteria accessed their education in specialized settings at a significantly higher rate than their peers with mild intellectual disability.</p></div><div><h3>Conclusions</h3><p>Reasons for differences in the identification and placement of the two groups of students are explored relative to the research context.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-04-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140622456","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-04-17DOI: 10.1016/j.ridd.2024.104729
Hayley Hei Lam Cheng , Ashtyn Chau , Huberta Chan , Jackie Seto , Hayden Wong , Jeremiah So , Yvonne W. Leung , Anna Victoria Wong , Theodore C.K. Cheung
Background
Cultural-based literature focusing on Asian autistic immigrants living in Western countries is very limited.
Aims
The present study is a quality improvement exercise aiming to fill the gap by investigating the employment needs of and barriers for Chinese autistic youth and young adults in Ontario, Canada.
Methods & procedures
71 individuals diagnosed with autism and 24 diagnosed with other mental illnesses, aged 12–29, participated in an online survey regarding their work readiness, work skills, interests, health and cultural concerns. Analyses were conducted to compare the autistic group and the mental health group.
Outcomes & results
Results show that the autistic sample has inferior (1) work habits related skills, (2) work style related skills, (3) level of independence, (4) skills to perform routine daily activities, (5) interpersonal skills at work, and (6) ability to tolerate visual and moving stimuli in the work environment. It is also found that the autistic group has more symptoms of depression, anxiety, and autism than that of the non-autistic group.
Conclusions & implications
The study shed light into the unique needs and barriers of Chinese autistic young adults and the service gap in supporting their transition to employment.
{"title":"Employment needs of and barriers for Chinese youth and young adults with Autism Spectrum Conditions in Ontario, Canada","authors":"Hayley Hei Lam Cheng , Ashtyn Chau , Huberta Chan , Jackie Seto , Hayden Wong , Jeremiah So , Yvonne W. Leung , Anna Victoria Wong , Theodore C.K. Cheung","doi":"10.1016/j.ridd.2024.104729","DOIUrl":"https://doi.org/10.1016/j.ridd.2024.104729","url":null,"abstract":"<div><h3>Background</h3><p>Cultural-based literature focusing on Asian autistic immigrants living in Western countries is very limited.</p></div><div><h3>Aims</h3><p>The present study is a quality improvement exercise aiming to fill the gap by investigating the employment needs of and barriers for Chinese autistic youth and young adults in Ontario, Canada.</p></div><div><h3>Methods & procedures</h3><p>71 individuals diagnosed with autism and 24 diagnosed with other mental illnesses, aged 12–29, participated in an online survey regarding their work readiness, work skills, interests, health and cultural concerns. Analyses were conducted to compare the autistic group and the mental health group.</p></div><div><h3>Outcomes & results</h3><p>Results show that the autistic sample has inferior (1) work habits related skills, (2) work style related skills, (3) level of independence, (4) skills to perform routine daily activities, (5) interpersonal skills at work, and (6) ability to tolerate visual and moving stimuli in the work environment. It is also found that the autistic group has more symptoms of depression, anxiety, and autism than that of the non-autistic group.</p></div><div><h3>Conclusions & implications</h3><p>The study shed light into the unique needs and barriers of Chinese autistic young adults and the service gap in supporting their transition to employment.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140558467","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-04-13DOI: 10.1016/j.ridd.2024.104730
Debra J. Rose , Diobel M. Castner , Kathleen S. Wilson , Daniela A. Rubin
Background
Good postural stability control is dependent upon the complex integration of incoming sensory information (visual, somatosensory, vestibular) with neuromotor responses that are constructed in advance of a voluntary action or in response to an unexpected perturbation.
Aims
To examine whether differences exist in how sensory inputs are used to control standing balance in children with and without Prader-Willi syndrome (PWS).
Methods and Procedures
In this cross-sectional study, 18 children with PWS and 51 children categorized as obese but without PWS (without PWS) ages 8–11 completed the Sensory Organization Test®. This test measures the relative contributions of vision, somatosensory, and vestibular inputs to the control of standing balance. The composite equilibrium score (CES) derived from performance in all sensory conditions, in addition to equilibrium scores (EQs) and falls per condition were compared between groups.
Outcomes and Results
The CES was lower for children with PWS compared to children without PWS (M=53.93, SD=14.56 vs. M=66.17, SD=9.89, p = .001) while EQs declined in both groups between conditions 1 and 4 (F (1.305, 66.577) = 71.381, p < .001). No group differences in the percent of falls were evident in condition 5 but more children with PWS fell in condition 6 (χ2 (1) = 7.468, p = .006). Group differences in frequency of repeated falls also approached significance in conditions 5 (χ2 (3) = 4.630, p = .099) and 6 (χ2 (3) = 5.167, p = .076).
Conclusions and Implications
Children with PWS demonstrated a lower overall level of postural control and increased sway when compared to children with obesity. Both the higher incidence and repeated nature of falls in children with PWS in conditions 5 and 6 suggest an inability to adapt to sensory conditions in which vestibular input must be prioritized. Postural control training programs in this population should include activities that improve their ability to appropriately weight sensory information in changing sensory environments, with a particular focus on the vestibular system.
What does this study add?
This study shows that children with PWS demonstrate a lower level of postural stability. The results suggest that children with PWS show inability to adapt to sensory conditions that require prioritizing vestibular information to maintain postural control. This information can be used to help guide training programs in this population.
{"title":"Examination of sensory reception and integration abilities in children with and without Prader-Willi syndrome","authors":"Debra J. Rose , Diobel M. Castner , Kathleen S. Wilson , Daniela A. Rubin","doi":"10.1016/j.ridd.2024.104730","DOIUrl":"https://doi.org/10.1016/j.ridd.2024.104730","url":null,"abstract":"<div><h3>Background</h3><p>Good postural stability control is dependent upon the complex integration of incoming sensory information (visual, somatosensory, vestibular) with neuromotor responses that are constructed in advance of a voluntary action or in response to an unexpected perturbation.</p></div><div><h3>Aims</h3><p>To examine whether differences exist in how sensory inputs are used to control standing balance in children with and without Prader-Willi syndrome (PWS).</p></div><div><h3>Methods and Procedures</h3><p>In this cross-sectional study, 18 children with PWS and 51 children categorized as obese but without PWS (without PWS) ages 8–11 completed the Sensory Organization Test®. This test measures the relative contributions of vision, somatosensory, and vestibular inputs to the control of standing balance. The composite equilibrium score (CES) derived from performance in all sensory conditions, in addition to equilibrium scores (EQs) and falls per condition were compared between groups.</p></div><div><h3>Outcomes and Results</h3><p>The CES was lower for children with PWS compared to children without PWS (M=53.93, SD=14.56 vs. M=66.17, SD=9.89, <em>p</em> = .001) while EQs declined in both groups between conditions 1 and 4 (<em>F</em> (1.305, 66.577) = 71.381, <em>p</em> < .001). No group differences in the percent of falls were evident in condition 5 but more children with PWS fell in condition 6 (χ<sup>2</sup> (1) = 7.468, <em>p</em> = .006). Group differences in frequency of repeated falls also approached significance in conditions 5 (χ<sup>2</sup> (3) = 4.630, <em>p</em> = .099) and 6 (χ<sup>2</sup> (3) = 5.167, <em>p</em> = .076).</p></div><div><h3>Conclusions and Implications</h3><p>Children with PWS demonstrated a lower overall level of postural control and increased sway when compared to children with obesity. Both the higher incidence and repeated nature of falls in children with PWS in conditions 5 and 6 suggest an inability to adapt to sensory conditions in which vestibular input must be prioritized. Postural control training programs in this population should include activities that improve their ability to appropriately weight sensory information in changing sensory environments, with a particular focus on the vestibular system.</p></div><div><h3>What does this study add?</h3><p>This study shows that children with PWS demonstrate a lower level of postural stability. The results suggest that children with PWS show inability to adapt to sensory conditions that require prioritizing vestibular information to maintain postural control. This information can be used to help guide training programs in this population.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-04-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0891422224000623/pdfft?md5=1f8014aa78f08d7368629c635206c837&pid=1-s2.0-S0891422224000623-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140551585","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
An observer-rated screening questionnaire for dementia for people with intellectual disabilities (ID), DSQIID, was developed in the UK. So far, the German version has not yet been validated in adults with ID.
Aims/Methods
We validated a German version of DSQIID (DSQIID-G) among adults with ID attending a German clinic.
Procedures/Outcomes
DSQIID-G was completed by the caregivers of 104 adults with ID at baseline (T1), 94 at six months (T2) and 83 at 12 months (T3). A Receiver Operating Curve (ROC) was used to determine the total DSQIID-G cutoff score for the best fit between sensitivity and specificity.
Results
Sixteen of the 104 participants at T1 (15%) received a diagnosis of dementia. At T1, the scores among the non-dementia group ranged from 0 to 33 (mean: 6.7; SD: 7.65), and the dementia group ranged from 3 to 43 (mean: 22.12; SD: 11.6). The intergroup difference was statistically significant (W: 158; p < .001) (AUC:.89). A total score of 9 provided the best fit between sensitivity (.94) and specificity (.72).
Conclusions and Implications
DSQIID-G total score can discriminate between dementia and non-dementia cases in adults with ID. A lower cutoff score with a higher sensitivity is desirable for a screening instrument.
{"title":"Validation of the German version of the DSQIID in adults with intellectual disabilities","authors":"Daria Tarasova , Peggy Rösner , Shoumitro Deb , Tanja Sappok","doi":"10.1016/j.ridd.2024.104721","DOIUrl":"https://doi.org/10.1016/j.ridd.2024.104721","url":null,"abstract":"<div><h3>Background</h3><p>An observer-rated screening questionnaire for dementia for people with intellectual disabilities (ID), DSQIID, was developed in the UK. So far, the German version has not yet been validated in adults with ID.</p></div><div><h3>Aims/Methods</h3><p>We validated a German version of DSQIID (DSQIID-G) among adults with ID attending a German clinic.</p></div><div><h3>Procedures/Outcomes</h3><p>DSQIID-G was completed by the caregivers of 104 adults with ID at baseline (T1), 94 at six months (T2) and 83 at 12 months (T3). A Receiver Operating Curve (ROC) was used to determine the total DSQIID-G cutoff score for the best fit between sensitivity and specificity.</p></div><div><h3>Results</h3><p>Sixteen of the 104 participants at T1 (15%) received a diagnosis of dementia. At T1, the scores among the non-dementia group ranged from 0 to 33 (mean: 6.7; SD: 7.65), and the dementia group ranged from 3 to 43 (mean: 22.12; SD: 11.6). The intergroup difference was statistically significant (W: 158; p < .001) (AUC:.89). A total score of 9 provided the best fit between sensitivity (.94) and specificity (.72).</p></div><div><h3>Conclusions and Implications</h3><p>DSQIID-G total score can discriminate between dementia and non-dementia cases in adults with ID. A lower cutoff score with a higher sensitivity is desirable for a screening instrument.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-03-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0891422224000532/pdfft?md5=e95948aa748d6e462a871b19f647139c&pid=1-s2.0-S0891422224000532-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140308942","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-03-22DOI: 10.1016/j.ridd.2024.104711
Caterina Verganti , Chiara Suttora , Mariagrazia Zuccarini , Arianna Aceti , Luigi Corvaglia , Arianna Bello , M. Cristina Caselli , Annalisa Guarini , Alessandra Sansavini
Background
Studies on late talkers (LTs) highlighted their heterogeneity and the relevance of describing different communicative profiles.
Aims
To examine lexical skills and gesture use in expressive (E-LTs) vs. receptive-expressive (R/E-LTs) LTs through a structured task.
Methods and procedures
Forty-six 30-month-old screened LTs were distinguished into E-LTs (n= 35) and R/E-LTs (n= 11) according to their receptive skills. Lexical skills and gesture use were assessed with a Picture Naming Game by coding answer accuracy (correct, incorrect, no response), modality of expression (spoken, spoken-gestural, gestural), type of gestures (deictic, representational), and spoken-gestural answers’ semantic relationship (complementary, equivalent, supplementary).
Outcomes and results
R/E-LTs showed lower scores than E-LTs for noun and predicate comprehension with fewer correct answers, and production with fewer correct and incorrect answers, and more no responses. R/E-LTs also exhibited lower scores in spoken answers, representational gestures, and equivalent spoken-gestural answers for noun production and in all spoken and gestural answers for predicate production.
Conclusions and implications
Findings highlighted more impaired receptive and expressive lexical skills and lower gesture use in R/E-LTs compared to E-LTs, underlying the relevance of assessing both lexical and gestural skills through a structured task, besides parental questionnaires and developmental scales, to describe LTs’ communicative profiles.
{"title":"Lexical skills and gesture use: A comparison between expressive and receptive/expressive late talkers","authors":"Caterina Verganti , Chiara Suttora , Mariagrazia Zuccarini , Arianna Aceti , Luigi Corvaglia , Arianna Bello , M. Cristina Caselli , Annalisa Guarini , Alessandra Sansavini","doi":"10.1016/j.ridd.2024.104711","DOIUrl":"https://doi.org/10.1016/j.ridd.2024.104711","url":null,"abstract":"<div><h3>Background</h3><p>Studies on late talkers (LTs) highlighted their heterogeneity and the relevance of describing different communicative profiles.</p></div><div><h3>Aims</h3><p>To examine lexical skills and gesture use in expressive (E-LTs) vs. receptive-expressive (R/E-LTs) LTs through a structured task.</p></div><div><h3>Methods and procedures</h3><p>Forty-six 30-month-old screened LTs were distinguished into E-LTs (<em>n</em>= 35) and R/E-LTs (<em>n</em>= 11) according to their receptive skills. Lexical skills and gesture use were assessed with a Picture Naming Game by coding answer accuracy (correct, incorrect, no response), modality of expression (spoken, spoken-gestural, gestural), type of gestures (deictic, representational), and spoken-gestural answers’ semantic relationship (complementary, equivalent, supplementary).</p></div><div><h3>Outcomes and results</h3><p>R/E-LTs showed lower scores than E-LTs for noun and predicate comprehension with fewer correct answers, and production with fewer correct and incorrect answers, and more no responses. R/E-LTs also exhibited lower scores in spoken answers, representational gestures, and equivalent spoken-gestural answers for noun production and in all spoken and gestural answers for predicate production.</p></div><div><h3>Conclusions and implications</h3><p>Findings highlighted more impaired receptive and expressive lexical skills and lower gesture use in R/E-LTs compared to E-LTs, underlying the relevance of assessing both lexical and gestural skills through a structured task, besides parental questionnaires and developmental scales, to describe LTs’ communicative profiles.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-03-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S089142222400043X/pdfft?md5=56a97499f3fdcb1aa19443918685766c&pid=1-s2.0-S089142222400043X-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140191883","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-03-20DOI: 10.1016/j.ridd.2024.104719
Allyson Corbo , Janice P. Tzeng , Samantha Scott , Emily Cheves , Heidi Cope , Holly Peay
Background
Fragile X syndrome (FXS) is the most common inherited cause of intellectual disability. Early Check, a voluntary newborn screening study, screened 18,833 newborns for FXS over ∼3 years. Exploring parental attitudes and perspectives can provide insight to the potential future acceptability of public health screening.
Methods and procedures
Mothers of infants who received a screen positive result for FXS (n = 6) or fragile X premutation (FXPM; n = 18) were interviewed about their perceptions and experiences.
Outcomes and results
Mothers of children with FXS described utility in receiving information about their child, particularly to monitor for potential developmental issues and intervene early; overall mothers did not regret participating. Mothers reported various reactions to receiving the FXS or FXPM results including (1) stress and worry; (2) guilt; (3) sadness and disappointment; (4) neutrality, relief, and acceptance; and (5) confusion and uncertainty.
Conclusions and implications
Despite initial reactions such as sadness, stress, and worry, mothers found value in learning of their child’s presymptomatic diagnosis of FXS, particularly the anticipated long-term benefits of early diagnosis to their child’s health and wellbeing. Our results indicate that professionals returning positive newborn screening results should anticipate and prepare for reactions such as parental shock, guilt, sadness, and uncertainty. Genetic counseling and psychosocial support are critical to supporting families.
{"title":"Parent perspectives following newborn screening resulting in diagnoses of fragile X syndrome or fragile X premutation","authors":"Allyson Corbo , Janice P. Tzeng , Samantha Scott , Emily Cheves , Heidi Cope , Holly Peay","doi":"10.1016/j.ridd.2024.104719","DOIUrl":"https://doi.org/10.1016/j.ridd.2024.104719","url":null,"abstract":"<div><h3>Background</h3><p>Fragile X syndrome (FXS) is the most common inherited cause of intellectual disability. Early Check, a voluntary newborn screening study, screened 18,833 newborns for FXS over ∼3 years. Exploring parental attitudes and perspectives can provide insight to the potential future acceptability of public health screening.</p></div><div><h3>Methods and procedures</h3><p>Mothers of infants who received a screen positive result for FXS (n = 6) or fragile X premutation (FXPM; n = 18) were interviewed about their perceptions and experiences.</p></div><div><h3>Outcomes and results</h3><p>Mothers of children with FXS described utility in receiving information about their child, particularly to monitor for potential developmental issues and intervene early; overall mothers did not regret participating. Mothers reported various reactions to receiving the FXS or FXPM results including (1) stress and worry; (2) guilt; (3) sadness and disappointment; (4) neutrality, relief, and acceptance; and (5) confusion and uncertainty.</p></div><div><h3>Conclusions and implications</h3><p>Despite initial reactions such as sadness, stress, and worry, mothers found value in learning of their child’s presymptomatic diagnosis of FXS, particularly the anticipated long-term benefits of early diagnosis to their child’s health and wellbeing. Our results indicate that professionals returning positive newborn screening results should anticipate and prepare for reactions such as parental shock, guilt, sadness, and uncertainty. Genetic counseling and psychosocial support are critical to supporting families.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-03-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140163163","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-03-15DOI: 10.1016/j.ridd.2024.104716
Anne de Leeuw , Wietske A. Ester , Mersha Kinfe , Fikirte Girma , Rehana Abdurahman , Tigist Zerihun , Atsede Teklehaimanot , Charlotte Hanlon , Hans W. Hoek , Rosa A. Hoekstra
Objective
Raising a child with a developmental disability or physical health condition can have a major impact on the lives of their families, especially in low-income countries. We explored the impact on such families in Ethiopia.
Study design
A total of 241 child-caregiver dyads were recruited from two public hospitals in Addis Ababa, Ethiopia. Of these, 139 children were diagnosed with a developmental disability (e.g. autism, intellectual disability) and 102 children with a physical health condition (e.g. malnutrition, severe HIV infection). The family quality of life was assessed using caregiver reports on the Pediatric Quality of Life Inventory™ (PedsQL-FIM™). The disability weight score, which is a Global Burden of Disease measure to quantify health loss, was estimated for each child.
Results
Families with a child with a developmental disability reported lower quality of life than families caring for a child with a physical health condition (p < .001). Mean disability weight scores in children with a developmental disability were higher than in children with a physical health condition (p < .001), indicating more severe health loss. Disability weight scores were negatively associated with the family quality of life in the whole group (B=−16.8, SE=7.5, p = .026), but not in the stratified analyses.
Conclusions
Caring for a child with a developmental disability in Ethiopia is associated with a substantial reduction in the family quality of life. Scaling up support for these children in resource-limited contexts should be prioritized.
{"title":"The impact of raising a child with a developmental or physical health condition in Ethiopia","authors":"Anne de Leeuw , Wietske A. Ester , Mersha Kinfe , Fikirte Girma , Rehana Abdurahman , Tigist Zerihun , Atsede Teklehaimanot , Charlotte Hanlon , Hans W. Hoek , Rosa A. Hoekstra","doi":"10.1016/j.ridd.2024.104716","DOIUrl":"https://doi.org/10.1016/j.ridd.2024.104716","url":null,"abstract":"<div><h3>Objective</h3><p>Raising a child with a developmental disability or physical health condition can have a major impact on the lives of their families, especially in low-income countries. We explored the impact on such families in Ethiopia.</p></div><div><h3>Study design</h3><p>A total of 241 child-caregiver dyads were recruited from two public hospitals in Addis Ababa, Ethiopia. Of these, 139 children were diagnosed with a developmental disability (e.g. autism, intellectual disability) and 102 children with a physical health condition (e.g. malnutrition, severe HIV infection). The family quality of life was assessed using caregiver reports on the Pediatric Quality of Life Inventory™ (PedsQL-FIM™). The disability weight score, which is a Global Burden of Disease measure to quantify health loss, was estimated for each child.</p></div><div><h3>Results</h3><p>Families with a child with a developmental disability reported lower quality of life than families caring for a child with a physical health condition (p < .001). Mean disability weight scores in children with a developmental disability were higher than in children with a physical health condition (p < .001), indicating more severe health loss. Disability weight scores were negatively associated with the family quality of life in the whole group (<em>B=−16.8, SE=7.5, p = .026</em>), but not in the stratified analyses.</p></div><div><h3>Conclusions</h3><p>Caring for a child with a developmental disability in Ethiopia is associated with a substantial reduction in the family quality of life. Scaling up support for these children in resource-limited contexts should be prioritized.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0891422224000489/pdfft?md5=e5ccb9e6f43fa04ed7e106ed030a3453&pid=1-s2.0-S0891422224000489-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140133847","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-03-13DOI: 10.1016/j.ridd.2024.104714
Jennifer Keating , Catherine Purcell , Sarah A. Gerson , Ross E. Vanderwert , Catherine R.G. Jones
Background
Children with Developmental Coordination Disorder (DCD) can experience sensory differences. There has been limited exploration of these differences and their impact on children with DCD.
Aims
i) To explore the presence and impact of sensory differences in children with DCD compared to children without DCD; ii) To examine whether sensory differences are related to motor ability, attention deficit hyperactivity disorder (ADHD), or autistic traits.
Method
Parents of children (8–12 years) with (n = 23) and without (n = 33) DCD used standardised questionnaires to report on their children’s sensory differences, autistic traits, and ADHD traits. Motor abilities were assessed through the Movement Assessment Battery for Children-2. Data were explored both categorically (between-groups) and dimensionally.
Results
Children with DCD had significantly higher levels of sensory differences than children without DCD. Sensory differences also had a significantly greater impact on daily activities for children with DCD. Higher levels of ADHD and autistic traits, but not motor ability, were significant independent predictors of higher levels of sensory difference.
Conclusion
Children with DCD experience high levels of sensory differences, which impact on their daily lives. These sensory differences may be a marker for additional neurodivergence in children with DCD. Practitioners should consider the sensory needs of children with DCD.
What this paper adds
This paper provides insight into the sensory features of children with DCD and the impact that sensory differences can have on daily living. Using parent-report, we found that children with DCD had increased sensory differences relative to children without DCD. These included increased hyperresponsiveness, increased hyporesponsiveness, and increased sensory interests, repetitions, and seeking behaviours (SIRS). We also found that sensory differences had a greater impact on daily living for children with DCD compared to children without DCD. Across the whole sample, autistic traits predicted hyperresponsivity and hyporesponsivity patterns; whereas traits of hyperactivity and impulsivity predicted SIRS. Motor abilities did not uniquely predict sensory differences, suggesting that other traits of neurodivergence may contribute to the sensory differences in DCD. Taken together, these findings highlight the necessity of considering sensory needs when supporting children with DCD. They also suggest that if sensory differences are identified in children with DCD, it may be due to the presence of co-occurring neurodivergent traits or conditions.
{"title":"Exploring the presence and impact of sensory differences in children with Developmental Coordination Disorder","authors":"Jennifer Keating , Catherine Purcell , Sarah A. Gerson , Ross E. Vanderwert , Catherine R.G. Jones","doi":"10.1016/j.ridd.2024.104714","DOIUrl":"https://doi.org/10.1016/j.ridd.2024.104714","url":null,"abstract":"<div><h3>Background</h3><p>Children with Developmental Coordination Disorder (DCD) can experience sensory differences. There has been limited exploration of these differences and their impact on children with DCD.</p></div><div><h3>Aims</h3><p>i) To explore the presence and impact of sensory differences in children with DCD compared to children without DCD; ii) To examine whether sensory differences are related to motor ability, attention deficit hyperactivity disorder (ADHD), or autistic traits.</p></div><div><h3>Method</h3><p>Parents of children (8–12 years) with (n = 23) and without (n = 33) DCD used standardised questionnaires to report on their children’s sensory differences, autistic traits, and ADHD traits. Motor abilities were assessed through the Movement Assessment Battery for Children-2. Data were explored both categorically (between-groups) and dimensionally.</p></div><div><h3>Results</h3><p>Children with DCD had significantly higher levels of sensory differences than children without DCD. Sensory differences also had a significantly greater impact on daily activities for children with DCD. Higher levels of ADHD and autistic traits, but not motor ability, were significant independent predictors of higher levels of sensory difference.</p></div><div><h3>Conclusion</h3><p>Children with DCD experience high levels of sensory differences, which impact on their daily lives. These sensory differences may be a marker for additional neurodivergence in children with DCD. Practitioners should consider the sensory needs of children with DCD.</p></div><div><h3>What this paper adds</h3><p>This paper provides insight into the sensory features of children with DCD and the impact that sensory differences can have on daily living. Using parent-report, we found that children with DCD had increased sensory differences relative to children without DCD. These included increased hyperresponsiveness, increased hyporesponsiveness, and increased sensory interests, repetitions, and seeking behaviours (SIRS). We also found that sensory differences had a greater impact on daily living for children with DCD compared to children without DCD. Across the whole sample, autistic traits predicted hyperresponsivity and hyporesponsivity patterns; whereas traits of hyperactivity and impulsivity predicted SIRS. Motor abilities did not uniquely predict sensory differences, suggesting that other traits of neurodivergence may contribute to the sensory differences in DCD. Taken together, these findings highlight the necessity of considering sensory needs when supporting children with DCD. They also suggest that if sensory differences are identified in children with DCD, it may be due to the presence of co-occurring neurodivergent traits or conditions.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140122332","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Mothers of children with autism spectrum disorder (ASD) across Saudi Arabia have experienced tremendous challenges during the COVID-19 pandemic. However, the challenges may be different for mothers living in a city compared to those living more remotely.
Aims
We investigated challenges and practices related to COVID-19 and their impact among Saudi mothers of children with ASD in cities and remote areas during the pandemic.
Methods
A sample of 99 mothers (60 in cities and 39 remote) who had a child with ASD was surveyed using an electronic questionnaire.
Results
Mothers who lived in remote areas reported more challenges, while mothers in cities reported adopting more new practices with children than remote mothers. Regression analyses revealed that place of residence and age of the child were significant predictors of the challenges experienced by mothers of children with ASD.
Recommendations
Intervention services, community-based education programs, and electronic media are recommended for use with mothers in Saudi Arabia to increase awareness of COVID-19, improve practices, and minimize challenges in protecting their children with ASD.
{"title":"Challenges, practices, and impact of COVID-19 among mothers of children with autism spectrum disorder in cities and remote areas in Saudi Arabia","authors":"Abdulaziz Abdullah Alothman , Mona Tawakkul Ebrahim , Hesham Fathy Gadelrab","doi":"10.1016/j.ridd.2024.104718","DOIUrl":"https://doi.org/10.1016/j.ridd.2024.104718","url":null,"abstract":"<div><h3>Background</h3><p>Mothers of children with autism spectrum disorder (ASD) across Saudi Arabia have experienced tremendous challenges during the COVID-19 pandemic. However, the challenges may be different for mothers living in a city compared to those living more remotely.</p></div><div><h3>Aims</h3><p>We investigated challenges and practices related to COVID-19 and their impact among Saudi mothers of children with ASD in cities and remote areas during the pandemic.</p></div><div><h3>Methods</h3><p>A sample of 99 mothers (60 in cities and 39 remote) who had a child with ASD was surveyed using an electronic questionnaire.</p></div><div><h3>Results</h3><p>Mothers who lived in remote areas reported more challenges, while mothers in cities reported adopting more new practices with children than remote mothers. Regression analyses revealed that place of residence and age of the child were significant predictors of the challenges experienced by mothers of children with ASD.</p></div><div><h3>Recommendations</h3><p>Intervention services, community-based education programs, and electronic media are recommended for use with mothers in Saudi Arabia to increase awareness of COVID-19, improve practices, and minimize challenges in protecting their children with ASD.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140123035","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-03-12DOI: 10.1016/j.ridd.2024.104717
Amanallah Soltani , Anna J. Esbensen
Background
Living with a child with Down syndrome (DS) influences the entire family, including caregivers.
Aims
This study examined positive and negative caregiver feelings about parenting youth with DS and to what extent children's demographic, cognitive, behavioral characteristics, and co-occurring medical conditions are associated with those parental feelings. Specifically, the mediatory role of child behavioral challenges on the relationship between child executive functioning (EF) and parent feelings about parenting a child with DS was examined in a mediation analysis model.
Methods and procedures
Parents of 113 youth with DS aged 6 to 17 year rated their positive and negative feelings about parenting, and their child's behavioral challenges and EF.
Outcomes and results
Externalizing and Internalizing behavioral challenges and emotional and behavioral regulations of EF were significantly associated with positive and negative parent feelings. Child behavioral challenges fully mediated the relationship between child EF and caregiver feelings about parenting, after controlling for identified covariates of child demographics.
Conclusions and implications
Findings have implications for understanding the role of EF, through its impact on behavioral challenges, on the feelings of caregivers about parenting a child with DS. These findings play a role in understanding outcomes of interventions targeted at EF and behavioral challenges, in the context of other child variables.
{"title":"Role of child demographic, executive functions, and behavioral challenges on feelings about parenting among parents of youth with Down syndrome","authors":"Amanallah Soltani , Anna J. Esbensen","doi":"10.1016/j.ridd.2024.104717","DOIUrl":"https://doi.org/10.1016/j.ridd.2024.104717","url":null,"abstract":"<div><h3>Background</h3><p>Living with a child with Down syndrome (DS) influences the entire family, including caregivers.</p></div><div><h3>Aims</h3><p>This study examined positive and negative caregiver feelings about parenting youth with DS and to what extent children's demographic, cognitive, behavioral characteristics, and co-occurring medical conditions are associated with those parental feelings. Specifically, the mediatory role of child behavioral challenges on the relationship between child executive functioning (EF) and parent feelings about parenting a child with DS was examined in a mediation analysis model.</p></div><div><h3>Methods and procedures</h3><p>Parents of 113 youth with DS aged 6 to 17 year rated their positive and negative feelings about parenting, and their child's behavioral challenges and EF.</p></div><div><h3>Outcomes and results</h3><p>Externalizing and Internalizing behavioral challenges and emotional and behavioral regulations of EF were significantly associated with positive and negative parent feelings. Child behavioral challenges fully mediated the relationship between child EF and caregiver feelings about parenting, after controlling for identified covariates of child demographics.</p></div><div><h3>Conclusions and implications</h3><p>Findings have implications for understanding the role of EF, through its impact on behavioral challenges, on the feelings of caregivers about parenting a child with DS. These findings play a role in understanding outcomes of interventions targeted at EF and behavioral challenges, in the context of other child variables.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140113767","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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