Pub Date : 2024-08-13DOI: 10.1016/j.ridd.2024.104815
Dércia Materula , Genevieve Currie , Xiao Yang Jia , Brittany Finlay , Ai-Men Lau , Catherine Richard , Meridith Yohemas , Myka Estes , Nadine Gall , Tammie Dewan , Sarah MacEachern , W. Ben Gibbard , Jennifer D. Zwicker
Background
Caregivers of children with neurodevelopmental disorders and medical complexities (NDD-MC) coordinate care across complex multisectoral systems. Often NDD-MC children have complex behaviors, however there is limited information on coordination needs for families. Aim: The objective of this mixed methods study was to understand the needs of families with NDD-MC children. Methods and Procedures: This sequential exploratory study obtained the perspectives of 67 caregivers of NDD-MC children using semi-structured interviews and validated questionnaires to measure family quality of life, care integration, and resource use. An adapted model using Maslow’s hierarchy of needs was integrated, to understand the impacts of caregiving on quality of life. Outcomes and Results: Lack of support in caring for NDD-MC children negatively impacted family quality of life, resulting in various unmet needs, including caregiver burden, behavioural challenges, financial losses, and mental health issues. Caregivers dealt with a fragmented healthcare system that offered limited support to address coordination challenges. Conclusions and Implications: The implementation of a needs-based care coordination program is recommended to consider the health, educational, and social needs of NDD-MC children and their families. Effective care for children with complex needs should tailor support for families using Maslow’s hierarchy to enhance quality of life.
{"title":"Needs of children with neurodevelopmental disorders and medical complexity: Caregiver perspectives","authors":"Dércia Materula , Genevieve Currie , Xiao Yang Jia , Brittany Finlay , Ai-Men Lau , Catherine Richard , Meridith Yohemas , Myka Estes , Nadine Gall , Tammie Dewan , Sarah MacEachern , W. Ben Gibbard , Jennifer D. Zwicker","doi":"10.1016/j.ridd.2024.104815","DOIUrl":"10.1016/j.ridd.2024.104815","url":null,"abstract":"<div><h3>Background</h3><p>Caregivers of children with neurodevelopmental disorders and medical complexities (NDD-MC) coordinate care across complex multisectoral systems. Often NDD-MC children have complex behaviors, however there is limited information on coordination needs for families. Aim: The objective of this mixed methods study was to understand the needs of families with NDD-MC children. Methods and Procedures: This sequential exploratory study obtained the perspectives of 67 caregivers of NDD-MC children using semi-structured interviews and validated questionnaires to measure family quality of life, care integration, and resource use. An adapted model using Maslow’s hierarchy of needs was integrated, to understand the impacts of caregiving on quality of life. Outcomes and Results: Lack of support in caring for NDD-MC children negatively impacted family quality of life, resulting in various unmet needs, including caregiver burden, behavioural challenges, financial losses, and mental health issues. Caregivers dealt with a fragmented healthcare system that offered limited support to address coordination challenges. Conclusions and Implications: The implementation of a needs-based care coordination program is recommended to consider the health, educational, and social needs of NDD-MC children and their families. Effective care for children with complex needs should tailor support for families using Maslow’s hierarchy to enhance quality of life.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"153 ","pages":"Article 104815"},"PeriodicalIF":2.9,"publicationDate":"2024-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0891422224001471/pdfft?md5=558a8e14c337603af6d25248c545bfc6&pid=1-s2.0-S0891422224001471-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141978217","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 : 2024-08-06DOI: 10.1016/j.ridd.2024.104810
Griet Warlop , Emiel Cracco , Jan R. Wiersema , Guido Orgs , Frederik J.A. Deconinck
Background
The perception of biological motion requires accurate prediction of the spatiotemporal dynamics of human movement. Research on Developmental Coordination Disorder (DCD) suggests deficits in accurate motor prediction, raising the question whether not just action execution, but also action perception is perturbed in this disorder.
Aims
To examine action perception by comparing the neural response to the observation of apparent biological motion in children with and without DCD.
Methods and procedures
Thirty-three participants with and 33 without DCD, matched based on age (13.0 ± 2.0), sex and writing hand, observed sequences of static body postures that showed either fluent or non-fluent motion, in which only the fluent condition depicted apparent biological motion. Using a recently validated paradigm combining EEG frequency tagging and apparent biological motion (Cracco et al., 2023), the perception of biological motion was contrasted with the perception of individual body postures.
Outcomes and conclusions
Children with DCD did not show reduced sensitivity to apparent biological motion compared with typically developing children. However, the DCD group did show a reduced brain response to repetitive visual stimuli, suggesting altered predictive processing in the perceptual domain in this group. Suggestions for further research on biological motion perception in DCD are identified.
{"title":"An EEG frequency tagging study on biological motion perception in children with DCD","authors":"Griet Warlop , Emiel Cracco , Jan R. Wiersema , Guido Orgs , Frederik J.A. Deconinck","doi":"10.1016/j.ridd.2024.104810","DOIUrl":"10.1016/j.ridd.2024.104810","url":null,"abstract":"<div><h3>Background</h3><p>The perception of biological motion requires accurate prediction of the spatiotemporal dynamics of human movement. Research on Developmental Coordination Disorder (DCD) suggests deficits in accurate motor prediction, raising the question whether not just action execution, but also action perception is perturbed in this disorder.</p></div><div><h3>Aims</h3><p>To examine action perception by comparing the neural response to the observation of apparent biological motion in children with and without DCD.</p></div><div><h3>Methods and procedures</h3><p>Thirty-three participants with and 33 without DCD, matched based on age (13.0 ± 2.0), sex and writing hand, observed sequences of static body postures that showed either fluent or non-fluent motion, in which only the fluent condition depicted apparent biological motion. Using a recently validated paradigm combining EEG frequency tagging and apparent biological motion (Cracco et al., 2023), the perception of biological motion was contrasted with the perception of individual body postures.</p></div><div><h3>Outcomes and conclusions</h3><p>Children with DCD did not show reduced sensitivity to apparent biological motion compared with typically developing children. However, the DCD group did show a reduced brain response to repetitive visual stimuli, suggesting altered predictive processing in the perceptual domain in this group. Suggestions for further research on biological motion perception in DCD are identified.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"153 ","pages":"Article 104810"},"PeriodicalIF":2.9,"publicationDate":"2024-08-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141903568","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 : 2024-07-29DOI: 10.1016/j.ridd.2024.104812
Ali Fahad Aldakhil
Background
Dyslexia is one of the most common learning disabilities. It poses challenges in reading skills development and can have a lasting impact in other areas of learning.
Aims
To investigate the prevalence of developmental dyslexia among primary school children aged 6–13 in Arab countries, and to explore associations with gender and residency.
Method
Following the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines, we included studies up to December 2023 that were found in English and Arabic research database searches. Random-effects proportional meta-analyses determined the prevalence of dyslexia in Arab countries, with a direct comparison between girls and boys using odds ratios.
Results
The meta-analysis included 18 studies with 30,243 participants: eight studies (44 %) from Egypt, four (22 %) from Saudi Arabia, and six (34 %) from other Arab countries. The pooled prevalence of dyslexia for children aged 6–13 in these studies was 11 %. The odds ratio for girls vs. boys was 0.85 (95 %). Geographical variations were notable, with eight studies (44 %) from Asia and ten (56 %) from Africa. Eight studies (44 %) were from the Gulf region, while ten (56 %) were from non-Gulf region. Prevalence of dyslexia was significantly higher in Arab countries in Asia (24 %) than in Africa (12 %), and the prevalence in non-Gulf countries was 13 % which was nearly half in comparison to Gulf countries (24 %).
Conclusions
The prevalence rates of dyslexia in primary school children varies across the Arab world, with higher rates among boys, Arab countries in Asia, and Gulf countries. Further research is needed to include both genders and standardized diagnostics across more Arab countries to understand and address dyslexia effectively.
{"title":"Prevalence of developmental dyslexia among primary school children in Arab countries: a systematic review and meta-analysis","authors":"Ali Fahad Aldakhil","doi":"10.1016/j.ridd.2024.104812","DOIUrl":"10.1016/j.ridd.2024.104812","url":null,"abstract":"<div><h3>Background</h3><p>Dyslexia is one of the most common learning disabilities. It poses challenges in reading skills development and can have a lasting impact in other areas of learning.</p></div><div><h3>Aims</h3><p>To investigate the prevalence of developmental dyslexia among primary school children aged 6–13 in Arab countries, and to explore associations with gender and residency.</p></div><div><h3>Method</h3><p>Following the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines, we included studies up to December 2023 that were found in English and Arabic research database searches. Random-effects proportional meta-analyses determined the prevalence of dyslexia in Arab countries, with a direct comparison between girls and boys using odds ratios.</p></div><div><h3>Results</h3><p>The meta-analysis included 18 studies with 30,243 participants: eight studies (44 %) from Egypt, four (22 %) from Saudi Arabia, and six (34 %) from other Arab countries. The pooled prevalence of dyslexia for children aged 6–13 in these studies was 11 %. The odds ratio for girls vs. boys was 0.85 (95 %). Geographical variations were notable, with eight studies (44 %) from Asia and ten (56 %) from Africa. Eight studies (44 %) were from the Gulf region, while ten (56 %) were from non-Gulf region. Prevalence of dyslexia was significantly higher in Arab countries in Asia (24 %) than in Africa (12 %), and the prevalence in non-Gulf countries was 13 % which was nearly half in comparison to Gulf countries (24 %).</p></div><div><h3>Conclusions</h3><p>The prevalence rates of dyslexia in primary school children varies across the Arab world, with higher rates among boys, Arab countries in Asia, and Gulf countries. Further research is needed to include both genders and standardized diagnostics across more Arab countries to understand and address dyslexia effectively.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"152 ","pages":"Article 104812"},"PeriodicalIF":2.9,"publicationDate":"2024-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141857061","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}
While there are limited studies focusing on sleep quality of family caregivers of children with Spinal Muscular Atrophy (SMA), there are no studies on daytime sleepiness in SMA.
Aims
This study aimed a) to compare the sleep quality and daytime sleepiness between caregivers of children with SMA and those of healthy peers and b) to investigate the sleep quality and daytime sleepiness of family caregivers of children with different types of SMA.
Methods and procedures
This study included 30 family caregivers of children with SMA (SMA Type 1:12, SMA Type 2:10, and SMA Type 3:8) and 31 family caregivers of healthy peers. Sleep quality and daytime sleepiness of family caregivers were evaluated using the Pittsburg Sleep Quality Index (PSQI) and the Epworth Sleepiness Scale (EPS), consecutively.
Outcomes and results
Demographic characteristics of children with SMA and healthy peers were similar (p > 0.05). The mean ages of family caregivers of children with SMA and healthy peers were 36.07 ± 5.84 and 35.26 ± 5.02 years, respectively (p = 0.6). The PSQI scores of family caregivers of children with SMA (7.50 ± 3.90 points) were lower than those of healthy peers (4.09 ± 1.97 points) (p < 0.001). There was no difference in PSQI scores between SMA types (p = 0.8). Also, no difference was found between SMA types and between SMA and healthy peers in terms of EPS (p > 0.05).
Conclusions and implications
Family caregivers of children with SMA had poor sleep quality but similar daytime sleepiness compared with those of healthy peers. Among SMA types, family caregivers had similar sleep quality and daytime sleepiness. It was demonstrated that the sleep quality of family caregivers should be taken into consideration in the disease management of SMA.
背景：目的：本研究旨在 a) 比较脊髓性肌肉萎缩症（SMA）患儿的照顾者和健康儿童的照顾者之间的睡眠质量和白天嗜睡情况；b) 调查不同类型 SMA 患儿的家庭照顾者的睡眠质量和白天嗜睡情况：这项研究包括 30 名 SMA 儿童（SMA 1 型 12 人、SMA 2 型 10 人和 SMA 3 型 8 人）的家庭照顾者和 31 名健康儿童的家庭照顾者。连续使用匹兹堡睡眠质量指数（PSQI）和埃普沃斯嗜睡量表（EPS）对家庭照顾者的睡眠质量和白天嗜睡情况进行评估：SMA患儿和健康儿童的人口统计学特征相似（P > 0.05）。SMA患儿和健康儿童的家庭照顾者的平均年龄分别为（36.07 ± 5.84）岁和（35.26 ± 5.02）岁（P = 0.6）。SMA患儿家庭照顾者的PSQI得分（7.50 ± 3.90分）低于健康同龄人（4.09 ± 1.97分）（P 0.05）：与健康儿童相比，SMA 儿童的家庭照顾者睡眠质量较差，但白天嗜睡程度相似。在不同类型的 SMA 患者中，家庭照顾者的睡眠质量和白天嗜睡程度相似。这表明，在对 SMA 进行疾病管理时，应考虑到家庭照顾者的睡眠质量。
{"title":"Sleep quality and daytime sleepiness amongst family caregivers of children with Spinal Muscular Atrophy","authors":"Numan Bulut , Güllü Aydın Yağcıoğlu , Fatma Uğur , Özlem Yayıcı Köken , İpek Gürbüz , Öznur Yılmaz , Haluk Topaloğlu , Ayşe Karaduman","doi":"10.1016/j.ridd.2024.104811","DOIUrl":"10.1016/j.ridd.2024.104811","url":null,"abstract":"<div><h3>Background</h3><p>While there are limited studies focusing on sleep quality of family caregivers of children with Spinal Muscular Atrophy (SMA), there are no studies on daytime sleepiness in SMA.</p></div><div><h3>Aims</h3><p>This study aimed a) to compare the sleep quality and daytime sleepiness between caregivers of children with SMA and those of healthy peers and b) to investigate the sleep quality and daytime sleepiness of family caregivers of children with different types of SMA.</p></div><div><h3>Methods and procedures</h3><p>This study included 30 family caregivers of children with SMA (SMA Type 1:12, SMA Type 2:10, and SMA Type 3:8) and 31 family caregivers of healthy peers. Sleep quality and daytime sleepiness of family caregivers were evaluated using the Pittsburg Sleep Quality Index (PSQI) and the Epworth Sleepiness Scale (EPS), consecutively.</p></div><div><h3>Outcomes and results</h3><p>Demographic characteristics of children with SMA and healthy peers were similar (p > 0.05). The mean ages of family caregivers of children with SMA and healthy peers were 36.07 ± 5.84 and 35.26 ± 5.02 years, respectively (p = 0.6). The PSQI scores of family caregivers of children with SMA (7.50 ± 3.90 points) were lower than those of healthy peers (4.09 ± 1.97 points) (p < 0.001). There was no difference in PSQI scores between SMA types (p = 0.8). Also, no difference was found between SMA types and between SMA and healthy peers in terms of EPS (p > 0.05).</p></div><div><h3>Conclusions and implications</h3><p>Family caregivers of children with SMA had poor sleep quality but similar daytime sleepiness compared with those of healthy peers. Among SMA types, family caregivers had similar sleep quality and daytime sleepiness. It was demonstrated that the sleep quality of family caregivers should be taken into consideration in the disease management of SMA.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"152 ","pages":"Article 104811"},"PeriodicalIF":2.9,"publicationDate":"2024-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141767935","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 : 2024-07-26DOI: 10.1016/j.ridd.2024.104808
Daniel Shepherd , Khan Buchwald , Richard J. Siegert , Matthieu Vignes
Background
Raising an autistic child is associated with increased parenting stress relative to raising typically developing children. Increased parenting stress is associated with lower parent wellbeing, which in turn can negatively impact child wellbeing.
Aims
The current study sought to quantify parenting stress and parent health-related quality of life (HRQOL) in the autism context, and further understand the relationship between them by employing a relatively novel statistical method, Network Analysis.
Methods and Procedures
This cross-sectional study involved 476 parents of an autistic child. Parents completed an online survey requesting information on parent and child characteristics, parent’s perceptions of their autistic child’s symptoms and problem behaviours, and assessed their parenting stress and HRQOL.
Outcomes and Results
Relative to normative data, parent HRQOL was significantly lower in terms of physical health and mental wellbeing. The structure extracted by the Network Analysis indicated that child age and externalising behaviours were the main contributors to parenting stress, and that externalising behaviours, ASD core behavioural symptoms, and parenting stress predicted HRQOL.
Conclusions and Implications
Parental responses to child-related factors likely determine parent HRQOL. Findings are discussed in relation to the transactional model, emphasising the importance of both parent and child wellbeing.
{"title":"Using network analysis to identify factors influencing the heath-related quality of life of parents caring for an autistic child","authors":"Daniel Shepherd , Khan Buchwald , Richard J. Siegert , Matthieu Vignes","doi":"10.1016/j.ridd.2024.104808","DOIUrl":"10.1016/j.ridd.2024.104808","url":null,"abstract":"<div><h3>Background</h3><p>Raising an autistic child is associated with increased parenting stress relative to raising typically developing children. Increased parenting stress is associated with lower parent wellbeing, which in turn can negatively impact child wellbeing.</p></div><div><h3>Aims</h3><p>The current study sought to quantify parenting stress and parent health-related quality of life (HRQOL) in the autism context, and further understand the relationship between them by employing a relatively novel statistical method, Network Analysis.</p></div><div><h3>Methods and Procedures</h3><p>This cross-sectional study involved 476 parents of an autistic child. Parents completed an online survey requesting information on parent and child characteristics, parent’s perceptions of their autistic child’s symptoms and problem behaviours, and assessed their parenting stress and HRQOL.</p></div><div><h3>Outcomes and Results</h3><p>Relative to normative data, parent HRQOL was significantly lower in terms of physical health and mental wellbeing. The structure extracted by the Network Analysis indicated that child age and externalising behaviours were the main contributors to parenting stress, and that externalising behaviours, ASD core behavioural symptoms, and parenting stress predicted HRQOL.</p></div><div><h3>Conclusions and Implications</h3><p>Parental responses to child-related factors likely determine parent HRQOL. Findings are discussed in relation to the transactional model, emphasising the importance of both parent and child wellbeing.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"152 ","pages":"Article 104808"},"PeriodicalIF":2.9,"publicationDate":"2024-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0891422224001409/pdfft?md5=50d150226adc4f8d929adfb623036e79&pid=1-s2.0-S0891422224001409-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141789830","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 : 2024-07-24DOI: 10.1016/j.ridd.2024.104809
Ahmed Mohamed , Maxwell Peprah Opoku , Mohammed Safi , Quizhi Xie
Background
The first agent of socialisation is the family, who are expected to facilitate the inclusion of children in societal activities. While mothers’ voices have been widely captured in the literature regarding their experiences raising children with disabilities, fathers’ perceptions of their knowledge of and involvement in the development of children with disabilities have been understudied, particularly in non-Western contexts.
Aim
The main aim of this study was to examine fathers’ perceptions of their involvement in raising children with disabilities in the United Arab Emirates.
Methods and procedures
In total, 469 fathers were recruited to understand their involvement in raising their children with disabilities. The Fathers’ Involvement in Development and Rehabilitation Scale was used to collect data, which were analysed using SPSS and AMOS.
Outcomes and results
The results showed that fathers rated themselves highly for their attitudes, support, and participation in training to support their children with disabilities. Demographic variables, such as nationality and educational qualifications, provided additional insight into their involvement in raising their children with disabilities.
Conclusions and implications
The study concludes with suggestions for training programmes to change fathers’ attitudes towards children with disabilities, as such programmes can enable them to better support their children’s development.
{"title":"Fatherhood in disability rehabilitation in the United Arab Emirates: Exploring fathers’ involvement in raising children with disabilities","authors":"Ahmed Mohamed , Maxwell Peprah Opoku , Mohammed Safi , Quizhi Xie","doi":"10.1016/j.ridd.2024.104809","DOIUrl":"10.1016/j.ridd.2024.104809","url":null,"abstract":"<div><h3>Background</h3><p>The first agent of socialisation is the family, who are expected to facilitate the inclusion of children in societal activities. While mothers’ voices have been widely captured in the literature regarding their experiences raising children with disabilities, fathers’ perceptions of their knowledge of and involvement in the development of children with disabilities have been understudied, particularly in non-Western contexts.</p></div><div><h3>Aim</h3><p>The main aim of this study was to examine fathers’ perceptions of their involvement in raising children with disabilities in the United Arab Emirates.</p></div><div><h3>Methods and procedures</h3><p>In total, 469 fathers were recruited to understand their involvement in raising their children with disabilities. The Fathers’ Involvement in Development and Rehabilitation Scale was used to collect data, which were analysed using SPSS and AMOS.</p></div><div><h3>Outcomes and results</h3><p>The results showed that fathers rated themselves highly for their attitudes, support, and participation in training to support their children with disabilities. Demographic variables, such as nationality and educational qualifications, provided additional insight into their involvement in raising their children with disabilities.</p></div><div><h3>Conclusions and implications</h3><p>The study concludes with suggestions for training programmes to change fathers’ attitudes towards children with disabilities, as such programmes can enable them to better support their children’s development.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"152 ","pages":"Article 104809"},"PeriodicalIF":2.9,"publicationDate":"2024-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141762580","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 : 2024-07-24DOI: 10.1016/j.ridd.2024.104796
Anne-Michelle Engelstad , Linnea Joffe-Nelson , Sophie R. Hurewitz , Katherine G. Pawlowski , Nicole T. Baumer
Background
Children with Down syndrome (DS) often need support building language, socialization, and regulation, yet few receive behavioral intervention for this. The Joint Attention, Symbolic Play, Engagement and Regulation (JASPER) intervention holds promise as a clinician-caregiver-mediated approach.
Aims
The aims of this pilot study were to (1) describe the behavioral phenotype of children with DS (2) quantify change in child engagement following JASPER receipt, (3) measure caregiver adoption of JASPER strategies, and (4) generate hypotheses and directions for future research.
Methods and procedures
Sixteen toddlers with DS and their caregivers enrolled in the study. Dyads were randomly assigned to one of two conditions: immediate intervention or waitlist control. During the COVID-19 pandemic, intervention was delivered remotely.
Outcomes and results
Caregivers learned to implement JASPER strategies and pilot data suggest improvements in joint engagement and regulation during play. Case series data show individual heterogeneity of intervention response. Remote intervention delivery may be associated with greater participant retention.
Conclusions and implications
JASPER may be a viable treatment option to improve joint engagement and emotion regulation in young children with DS. Parents appear receptive to learning and implementing JASPER strategies at home. Remote JASPER delivery may improve participation in research or treatment programs.
{"title":"The JASPER (Joint Attention, Symbolic Play, Engagement and Regulation) Intervention in Down Syndrome: A pilot study","authors":"Anne-Michelle Engelstad , Linnea Joffe-Nelson , Sophie R. Hurewitz , Katherine G. Pawlowski , Nicole T. Baumer","doi":"10.1016/j.ridd.2024.104796","DOIUrl":"10.1016/j.ridd.2024.104796","url":null,"abstract":"<div><h3>Background</h3><p>Children with Down syndrome (DS) often need support building language, socialization, and regulation, yet few receive behavioral intervention for this. The Joint Attention, Symbolic Play, Engagement and Regulation (JASPER) intervention holds promise as a clinician-caregiver-mediated approach.</p></div><div><h3>Aims</h3><p>The aims of this pilot study were to (1) describe the behavioral phenotype of children with DS (2) quantify change in child engagement following JASPER receipt, (3) measure caregiver adoption of JASPER strategies, and (4) generate hypotheses and directions for future research.</p></div><div><h3>Methods and procedures</h3><p>Sixteen toddlers with DS and their caregivers enrolled in the study. Dyads were randomly assigned to one of two conditions: immediate intervention or waitlist control. During the COVID-19 pandemic, intervention was delivered remotely.</p></div><div><h3>Outcomes and results</h3><p>Caregivers learned to implement JASPER strategies and pilot data suggest improvements in joint engagement and regulation during play. Case series data show individual heterogeneity of intervention response. Remote intervention delivery may be associated with greater participant retention.</p></div><div><h3>Conclusions and implications</h3><p>JASPER may be a viable treatment option to improve joint engagement and emotion regulation in young children with DS. Parents appear receptive to learning and implementing JASPER strategies at home. Remote JASPER delivery may improve participation in research or treatment programs.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"152 ","pages":"Article 104796"},"PeriodicalIF":2.9,"publicationDate":"2024-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0891422224001288/pdfft?md5=dbd358571263aa720ee3b9984a872c72&pid=1-s2.0-S0891422224001288-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141762581","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 : 2024-07-16DOI: 10.1016/j.ridd.2024.104792
Monica Crotti , Els Ortibus , Nofar Ben Itzhak , Lize Kleeren , Lisa Decraene , Nicolas Leenaerts , Hilde Feys , Lisa Mailleux
<div><h3>Background</h3><p>Accurate visual information is needed to guide and perform efficient movements in daily life.</p></div><div><h3>Aims</h3><p>To investigate the relation between visual functions, functional vision, and bimanual function in children with unilateral cerebral palsy (uCP).</p></div><div><h3>Methods and procedures</h3><p>In 49 children with uCP (7-15 y), we investigated the relation between stereoacuity (Titmus Stereo Fly test), visual perception (Test of Visual Perceptual Skills), visuomotor integration (Beery Buktenica Test of Visual-Motor Integration) and functional vision (Flemish cerebral visual impairment questionnaire) with bimanual dexterity (Tyneside Pegboard Test), bimanual coordination (Kinarm exoskeleton robot, Box opening task), and functional hand use (Children’s Hand-use Experience Questionnaire; Assisting Hand Assessment) using correlations (<em>r</em><sub><em>s</em></sub>) and elastic-net regularized regressions (<em>d</em>).</p></div><div><h3>Outcomes and results</h3><p>Visual perception correlated with bimanual coordination (<em>r</em><sub><em>s</em></sub>=0.407-0.436) and functional hand use (<em>r</em><sub><em>s</em></sub>=0.380-0.533). Stereoacuity (<em>r</em><sub><em>s</em></sub>=−0.404), visual perception (<em>r</em><sub><em>s</em></sub>=−0.391 to −0.620), and visuomotor integration (<em>r</em><sub><em>s</em></sub>=−0.377) correlated with bimanual dexterity. Functional vision correlated with functional hand use (<em>r</em><sub><em>s</em></sub>=−0.441 to −0.458). Visual perception predicted bimanual dexterity (<em>d</em>=0.001-0.315), bimanual coordination (<em>d</em>=0.004-0.176), and functional hand use (<em>d</em>=0.001-0.345), whereas functional vision mainly predicted functional hand use (<em>d</em>=0.001-0.201).</p></div><div><h3>Conclusions and implications</h3><p>Visual functions and functional vision are related to bimanual function in children with uCP highlighting the importance of performing extensive visual assessment to better understand children's difficulties in performing bimanual tasks.</p></div><div><h3>What this paper adds</h3><p>Previous findings showed that up to 62 % of children with unilateral cerebral palsy (uCP) present with visual impairment, which can further compromise their motor performance. However, the relation between visual and motor function has hardly been investigated in this population. This study makes a significant contribution to the literature by comprehensively investigating the multi-level relation between the heterogenous spectrum of visual abilities and bimanual function in children with uCP. We found that mainly decreased visual perception was related to decreased bimanual dexterity, bimanual coordination, and functional hand use while impairments in functional vision were only related to decreased functional hand use. Additionally, elastic-net regression models showed that visual assessments can predict bimanual function in children with uCP, however, eff
{"title":"The relation between visual functions, functional vision, and bimanual function in children with unilateral cerebral palsy","authors":"Monica Crotti , Els Ortibus , Nofar Ben Itzhak , Lize Kleeren , Lisa Decraene , Nicolas Leenaerts , Hilde Feys , Lisa Mailleux","doi":"10.1016/j.ridd.2024.104792","DOIUrl":"10.1016/j.ridd.2024.104792","url":null,"abstract":"<div><h3>Background</h3><p>Accurate visual information is needed to guide and perform efficient movements in daily life.</p></div><div><h3>Aims</h3><p>To investigate the relation between visual functions, functional vision, and bimanual function in children with unilateral cerebral palsy (uCP).</p></div><div><h3>Methods and procedures</h3><p>In 49 children with uCP (7-15 y), we investigated the relation between stereoacuity (Titmus Stereo Fly test), visual perception (Test of Visual Perceptual Skills), visuomotor integration (Beery Buktenica Test of Visual-Motor Integration) and functional vision (Flemish cerebral visual impairment questionnaire) with bimanual dexterity (Tyneside Pegboard Test), bimanual coordination (Kinarm exoskeleton robot, Box opening task), and functional hand use (Children’s Hand-use Experience Questionnaire; Assisting Hand Assessment) using correlations (<em>r</em><sub><em>s</em></sub>) and elastic-net regularized regressions (<em>d</em>).</p></div><div><h3>Outcomes and results</h3><p>Visual perception correlated with bimanual coordination (<em>r</em><sub><em>s</em></sub>=0.407-0.436) and functional hand use (<em>r</em><sub><em>s</em></sub>=0.380-0.533). Stereoacuity (<em>r</em><sub><em>s</em></sub>=−0.404), visual perception (<em>r</em><sub><em>s</em></sub>=−0.391 to −0.620), and visuomotor integration (<em>r</em><sub><em>s</em></sub>=−0.377) correlated with bimanual dexterity. Functional vision correlated with functional hand use (<em>r</em><sub><em>s</em></sub>=−0.441 to −0.458). Visual perception predicted bimanual dexterity (<em>d</em>=0.001-0.315), bimanual coordination (<em>d</em>=0.004-0.176), and functional hand use (<em>d</em>=0.001-0.345), whereas functional vision mainly predicted functional hand use (<em>d</em>=0.001-0.201).</p></div><div><h3>Conclusions and implications</h3><p>Visual functions and functional vision are related to bimanual function in children with uCP highlighting the importance of performing extensive visual assessment to better understand children's difficulties in performing bimanual tasks.</p></div><div><h3>What this paper adds</h3><p>Previous findings showed that up to 62 % of children with unilateral cerebral palsy (uCP) present with visual impairment, which can further compromise their motor performance. However, the relation between visual and motor function has hardly been investigated in this population. This study makes a significant contribution to the literature by comprehensively investigating the multi-level relation between the heterogenous spectrum of visual abilities and bimanual function in children with uCP. We found that mainly decreased visual perception was related to decreased bimanual dexterity, bimanual coordination, and functional hand use while impairments in functional vision were only related to decreased functional hand use. Additionally, elastic-net regression models showed that visual assessments can predict bimanual function in children with uCP, however, eff","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"152 ","pages":"Article 104792"},"PeriodicalIF":2.9,"publicationDate":"2024-07-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141623762","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}
Attention-Deficit/Hyperactivity Disorder (ADHD) is one of the most common neurodevelopmental conditions in children, and can profoundly affect their social interactions, well-being, and relationships with parents, peers, and teachers.
Objective
This study investigated the effectiveness of a social-play-based intervention programme in reducing ADHD symptoms in a sample of 67 Saudi boys aged 8–10 diagnosed with ADHD.
Methods
The programme consisted of ten 60-minute sessions of play-based activities, delivered to the experimental group twice weekly for 5 weeks. The control group followed the usual school curriculum. Teachers and parents completed the Conners’ Teacher Rating Scale–Revised: Short Form and Conners’ Parent Rating Scale–Revised: Short Form for all participants at pre-test, post-test, and follow-up.
Results
The experimental group showed a significant reduction in ADHD-associated behavioural problems over time, with moderate to large effect sizes. No significant changes over time were found for the control group. The results were maintained at a 2-month follow-up.
Conclusions
We recommend incorporating social-play-based activities and skill training into the school context. Reducing ADHD symptoms may improve children’s academic performance and perspective on school.
{"title":"Examining the effectiveness of a social-play-based programme to reduce symptoms of Attention-Deficit/Hyperactivity Disorder in Saudi elementary school children","authors":"Abdulaziz Abdullah Alothman , Hesham Fathy Gadelrab , Mona Tawakkul Ebrahim , Naglaa Fathy Abo-Eid","doi":"10.1016/j.ridd.2024.104798","DOIUrl":"10.1016/j.ridd.2024.104798","url":null,"abstract":"<div><h3>Background</h3><p>Attention-Deficit/Hyperactivity Disorder (ADHD) is one of the most common neurodevelopmental conditions in children, and can profoundly affect their social interactions, well-being, and relationships with parents, peers, and teachers.</p></div><div><h3>Objective</h3><p>This study investigated the effectiveness of a social-play-based intervention programme in reducing ADHD symptoms in a sample of 67 Saudi boys aged 8–10 diagnosed with ADHD.</p></div><div><h3>Methods</h3><p>The programme consisted of ten 60-minute sessions of play-based activities, delivered to the experimental group twice weekly for 5 weeks. The control group followed the usual school curriculum. Teachers and parents completed the Conners’ Teacher Rating Scale–Revised: Short Form and Conners’ Parent Rating Scale–Revised: Short Form for all participants at pre-test, post-test, and follow-up.</p></div><div><h3>Results</h3><p>The experimental group showed a significant reduction in ADHD-associated behavioural problems over time, with moderate to large effect sizes. No significant changes over time were found for the control group. The results were maintained at a 2-month follow-up.</p></div><div><h3>Conclusions</h3><p>We recommend incorporating social-play-based activities and skill training into the school context. Reducing ADHD symptoms may improve children’s academic performance and perspective on school.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"152 ","pages":"Article 104798"},"PeriodicalIF":2.9,"publicationDate":"2024-07-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141604467","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 : 2024-07-12DOI: 10.1016/j.ridd.2024.104799
Talal E. Alhuzimi
Background
Research indicates that the deficits in social communication and the repetitive, restrictive behaviour of persons with Autistic Spectrum Disorder (ASD) can pose challenges to their functioning in different Quality of Life (QoL) domains, leading to lower levels of life satisfaction. Evidence also indicates that various social and family factors, such as the support received in the community/environment and the composition of the family, could impact the QoL of persons with ASD.
Aim
To study the factors influencing the QoL of children with ASD in the Kingdom of Saudi Arabia (KSA) by investigating the perspectives of their parents.
Method
Questionnaires were completed by 110 parents who had a child with ASD. The questionnaire included the 96-item KidsLife-ASD scale to capture parents’ perspectives regarding the difficulties experienced by their child, the ASD support received by their families, and the QoL of the child. The data obtained from the questionnaire were statistically analysed using IBM SPSS software.
Results
The difficulties experienced by children with ASD and aspects of the support (services and interventions, and challenges) they receive are factors that influence the QoL of children with ASD in the KSA. Moreover, the number of children in the family, the birth order of child with ASD, and the severity of ASD symptoms are factors that influence parents’ perceptions of their children’s difficulties, family ASD support, and the child’s QoL.
Conclusions
Saudi parents who have one child with ASD believed that the QoL of their child was high and confirmed that the difficulties experienced by the child and the support received by the family were factors which influenced the QoL of a child with ASD.
背景：研究表明，自闭症谱系障碍（ASD）患者在社交沟通方面的缺陷和重复性、限制性行为会对他们在不同生活质量（QoL）领域的功能构成挑战，导致生活满意度降低。有证据还表明，各种社会和家庭因素，如在社区/环境中获得的支持和家庭的组成，都可能影响自闭症患者的生活质量。目的：通过调查沙特阿拉伯王国（KSA）自闭症儿童家长的观点，研究影响自闭症儿童生活质量的因素：110 名有 ASD 患儿的家长填写了调查问卷。调查问卷包括 96 个项目的 KidsLife-ASD 量表，以了解父母对其子女所经历的困难、其家庭所获得的 ASD 支持以及子女的 QoL 的看法。问卷调查所得数据使用 IBM SPSS 软件进行统计分析：患有 ASD 的儿童所经历的困难以及他们所获得的支持（服务和干预以及挑战）是影响 KSA ASD 儿童 QoL 的因素。此外，家庭中孩子的数量、患有 ASD 儿童的出生顺序以及 ASD 症状的严重程度也是影响父母对其子女的困难、家庭对 ASD 儿童的支持以及儿童 QoL 的看法的因素：有一名患有自闭症儿童的沙特籍父母认为其子女的生活质量较高，并确认子女所经历的困难和家庭所获得的支持是影响自闭症儿童生活质量的因素。
{"title":"Saudi parents’ perspectives of the factors influencing the quality of life of their children with autism spectrum disorder","authors":"Talal E. Alhuzimi","doi":"10.1016/j.ridd.2024.104799","DOIUrl":"10.1016/j.ridd.2024.104799","url":null,"abstract":"<div><h3>Background</h3><p>Research indicates that the deficits in social communication and the repetitive, restrictive behaviour of persons with Autistic Spectrum Disorder (ASD) can pose challenges to their functioning in different Quality of Life (QoL) domains, leading to lower levels of life satisfaction. Evidence also indicates that various social and family factors, such as the support received in the community/environment and the composition of the family, could impact the QoL of persons with ASD.</p></div><div><h3>Aim</h3><p>To study the factors influencing the QoL of children with ASD in the Kingdom of Saudi Arabia (KSA) by investigating the perspectives of their parents.</p></div><div><h3>Method</h3><p>Questionnaires were completed by 110 parents who had a child with ASD. The questionnaire included the 96-item KidsLife-ASD scale to capture parents’ perspectives regarding the difficulties experienced by their child, the ASD support received by their families, and the QoL of the child. The data obtained from the questionnaire were statistically analysed using IBM SPSS software.</p></div><div><h3>Results</h3><p>The difficulties experienced by children with ASD and aspects of the support (services and interventions, and challenges) they receive are factors that influence the QoL of children with ASD in the KSA. Moreover, the number of children in the family, the birth order of child with ASD, and the severity of ASD symptoms are factors that influence parents’ perceptions of their children’s difficulties, family ASD support, and the child’s QoL.</p></div><div><h3>Conclusions</h3><p>Saudi parents who have one child with ASD believed that the QoL of their child was high and confirmed that the difficulties experienced by the child and the support received by the family were factors which influenced the QoL of a child with ASD.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"152 ","pages":"Article 104799"},"PeriodicalIF":2.9,"publicationDate":"2024-07-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141604468","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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