Research in Developmental Disabilities最新文献

{"title":"The JASPER (Joint Attention, Symbolic Play, Engagement and Regulation) Intervention in Down Syndrome: A pilot study","authors":"Anne-Michelle Engelstad ,&nbsp;Linnea Joffe-Nelson ,&nbsp;Sophie R. Hurewitz ,&nbsp;Katherine G. Pawlowski ,&nbsp;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}

{"title":"The relation between visual functions, functional vision, and bimanual function in children with unilateral cerebral palsy","authors":"Monica Crotti ,&nbsp;Els Ortibus ,&nbsp;Nofar Ben Itzhak ,&nbsp;Lize Kleeren ,&nbsp;Lisa Decraene ,&nbsp;Nicolas Leenaerts ,&nbsp;Hilde Feys ,&nbsp;Lisa Mailleux","doi":"10.1016/j.ridd.2024.104792","DOIUrl":"10.1016/j.ridd.2024.104792","url":null,"abstract":"&lt;div&gt;&lt;h3&gt;Background&lt;/h3&gt;&lt;p&gt;Accurate visual information is needed to guide and perform efficient movements in daily life.&lt;/p&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Aims&lt;/h3&gt;&lt;p&gt;To investigate the relation between visual functions, functional vision, and bimanual function in children with unilateral cerebral palsy (uCP).&lt;/p&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Methods and procedures&lt;/h3&gt;&lt;p&gt;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 (&lt;em&gt;r&lt;/em&gt;&lt;sub&gt;&lt;em&gt;s&lt;/em&gt;&lt;/sub&gt;) and elastic-net regularized regressions (&lt;em&gt;d&lt;/em&gt;).&lt;/p&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Outcomes and results&lt;/h3&gt;&lt;p&gt;Visual perception correlated with bimanual coordination (&lt;em&gt;r&lt;/em&gt;&lt;sub&gt;&lt;em&gt;s&lt;/em&gt;&lt;/sub&gt;=0.407-0.436) and functional hand use (&lt;em&gt;r&lt;/em&gt;&lt;sub&gt;&lt;em&gt;s&lt;/em&gt;&lt;/sub&gt;=0.380-0.533). Stereoacuity (&lt;em&gt;r&lt;/em&gt;&lt;sub&gt;&lt;em&gt;s&lt;/em&gt;&lt;/sub&gt;=−0.404), visual perception (&lt;em&gt;r&lt;/em&gt;&lt;sub&gt;&lt;em&gt;s&lt;/em&gt;&lt;/sub&gt;=−0.391 to −0.620), and visuomotor integration (&lt;em&gt;r&lt;/em&gt;&lt;sub&gt;&lt;em&gt;s&lt;/em&gt;&lt;/sub&gt;=−0.377) correlated with bimanual dexterity. Functional vision correlated with functional hand use (&lt;em&gt;r&lt;/em&gt;&lt;sub&gt;&lt;em&gt;s&lt;/em&gt;&lt;/sub&gt;=−0.441 to −0.458). Visual perception predicted bimanual dexterity (&lt;em&gt;d&lt;/em&gt;=0.001-0.315), bimanual coordination (&lt;em&gt;d&lt;/em&gt;=0.004-0.176), and functional hand use (&lt;em&gt;d&lt;/em&gt;=0.001-0.345), whereas functional vision mainly predicted functional hand use (&lt;em&gt;d&lt;/em&gt;=0.001-0.201).&lt;/p&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Conclusions and implications&lt;/h3&gt;&lt;p&gt;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.&lt;/p&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;What this paper adds&lt;/h3&gt;&lt;p&gt;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}

{"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 ,&nbsp;Hesham Fathy Gadelrab ,&nbsp;Mona Tawakkul Ebrahim ,&nbsp;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}

{"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}

{"title":"Actual and perceived motor competence in children with motor coordination difficulties: Effect of a movement-based intervention","authors":"Yolanda Sánchez-Matas ,&nbsp;Andrea Hernández-Martínez ,&nbsp;David Gutiérrez ,&nbsp;y James Rudd","doi":"10.1016/j.ridd.2024.104797","DOIUrl":"10.1016/j.ridd.2024.104797","url":null,"abstract":"<div><h3>Background</h3><p>The present study analyses the effect of a Movement-Based Intervention to improve Actual and Perceived Motor Competence in children with probable Developmental Coordination Disorder aged four and six years.</p></div><div><h3>Methods and procedures</h3><p>A longitudinal pre-experimental study was designed with measurements conducted at pre-test, post-test and follow-up (after 5 months without intervention). The group, composed of children with probable Developmental Coordination Disorder or low motor competence, consisted of 57 participants, and the duration of a Movement-Based Intervention was 27 sessions allocated in nine weeks.</p></div><div><h3>Outcomes and results</h3><p>Actual Motor Competence was evaluated with the Movement Assessment Battery for School children and Perceived Motor Competence with Pictorial Scale of Perceived Motor Skill Competence for Children. The results showed significant improvements in both study variables (Actual Motor Competence and Perceived Motor Competence), both at post-test and follow-up, five months after the end of the intervention.</p><p>In conclusion, a Movement-based Intervention is effective in improving Actual and Perceived Motor Competence in the participants of this research, children with low motor competence or probable Developmental Coordination Disorder.</p></div><div><h3>What this paper adds</h3><p>Considering the improvements observed after the program in Spanish sample, it seems that the usual practice in Early Childhood Education in our context may not be sufficient, i.e., it may not provide children with the necessary support (number of lesson and time) and appropriate learning contexts to promote the development of their motor skills. Considering the results, this study suggests that using an Movement-Based Intervention with an appropriate pedagogical approach, and offering different learning opportunities to children according to their needs, could positively influence their Actual and Perceived Motor Competence, and could motivate them towards future practice.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"151 ","pages":"Article 104797"},"PeriodicalIF":2.9,"publicationDate":"2024-07-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S089142222400129X/pdfft?md5=f26844dc98d938527d372bc45de4580e&pid=1-s2.0-S089142222400129X-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141565070","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}

{"title":"Trust and quality of life: A study in organizations for individuals with intellectual disability","authors":"Sedigheh Jalili ,&nbsp;Vicente Martínez-Tur ,&nbsp;Yolanda Estreder ,&nbsp;Carolina Moliner ,&nbsp;Esther Gracia ,&nbsp;Leady V. Fajardo-Castro","doi":"10.1016/j.ridd.2024.104782","DOIUrl":"https://doi.org/10.1016/j.ridd.2024.104782","url":null,"abstract":"<div><h3>Background</h3><p>Based on social exchange within organizations for individuals with intellectual disability, we explore trust between supervisors and team members and its association with organizational performance oriented to the quality of life of service users.</p></div><div><h3>Aims</h3><p>We examine the mediating role of teams’ trust in supervisors in the relationship between supervisors’ trust in teams and performance focused on improving the quality of life of service users. We expect teams to reciprocate supervisors’ trust by reporting greater levels of trust in supervisors and better performance.</p></div><div><h3>Method and procedures</h3><p>We tested this trust-mediated model with a sample of 139 supervisors (reporting trust in their teams), 1101 team members (reporting trust in their supervisors), and 1468 family members (reporting performance focused on quality of life).</p></div><div><h3>Outcomes and results</h3><p>Our findings confirmed a cross-level mediation process. Supervisors’ trust in their teams leads to teams’ trust in their supervisors. This trust at the team level in turn is positively associated with organizational performance oriented to improving the quality of life of individuals with intellectual disability, reported by family members.</p></div><div><h3>Conclusions and implications</h3><p>Our study builds on and extends an established stream of research on trust theory by considering trust and its association with performance focused on quality of life.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"151 ","pages":"Article 104782"},"PeriodicalIF":2.9,"publicationDate":"2024-07-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0891422224001148/pdfft?md5=5617f7bbfb33997230eb5a14ae6834ed&pid=1-s2.0-S0891422224001148-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141541177","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}

{"title":"Reducing parenting stress in Chinese parents of children with learning disabilities with a mindful parenting program: A randomized controlled trial","authors":"Yaqian Tan ,&nbsp;Renhui Lyu ,&nbsp;Shuang Lu","doi":"10.1016/j.ridd.2024.104794","DOIUrl":"10.1016/j.ridd.2024.104794","url":null,"abstract":"<div><h3>Background</h3><p>Parents raising children with Learning Disabilities (LDs) often face multiple challenges and high levels of parenting stress, especially in societies with intense academic competitions. Mindful parenting (MP) is an emerging approach that brings mindful awareness to parent–child interactions and is found effective in reducing parenting stress in various parent populations.</p></div><div><h3>Aims</h3><p>This study examined the effectivenesss of an 8-week online MP program on Chinese parents of children with LDs.</p></div><div><h3>Methods and procedures</h3><p>A MP program was adapted and implemented in an online format with 69 parents of children with LDs. A randomized controlled trial design was used to examine the efficacy of the mindful parenting group compared with a wait-list control group. Parenting stress, mindful parenting and self-compassion were assessed pre- and post-intervention.</p></div><div><h3>Outcomes and results</h3><p>Compared with the wait-list control group, the MP group participants showed decreased parenting stress (<em>d</em> = 0.62, <em>p</em> &lt; 0.05), improved mindful parenting (<em>d</em> = 0.63, <em>p</em> &lt; 0.05), and increased self-compassion (<em>d</em> = 0.61, <em>p</em> &lt; 0.05).</p></div><div><h3>Conclusions and implications</h3><p>These findings support the effectiveness of an online MP intervention in reducing parenting stress and increasing mindful parenting and self-compassion among Chinese parents of children with LDs. The behavioral and intrapersonal aspects of MP are more amenable to improvement, whereas the attitudinal and interpersonal aspects, particularly non-judgmental acceptance and compassion towards the child, are resistant to change. Future studies should explore strategies to enhance these attitudinal aspects and interpersonal processes of MP.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"151 ","pages":"Article 104794"},"PeriodicalIF":2.9,"publicationDate":"2024-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141535943","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}

{"title":"An investigation of sleep problems, gastrointestinal symptoms, comorbid psychopathology and challenging behavior in children and adolescents with Down Syndrome","authors":"Arlene Mannion ,&nbsp;Nicole Neil ,&nbsp;Theresa Fiani ,&nbsp;Lindsay Athamanah ,&nbsp;James Lyons ,&nbsp;Kelly McDonagh ,&nbsp;Erin Boland ,&nbsp;Róisín Cooney ,&nbsp;Meagan Lynch ,&nbsp;Merna Youssef ,&nbsp;Geraldine Leader","doi":"10.1016/j.ridd.2024.104788","DOIUrl":"10.1016/j.ridd.2024.104788","url":null,"abstract":"&lt;div&gt;&lt;h3&gt;Background&lt;/h3&gt;&lt;p&gt;Down syndrome (DS) is one of the most common chromosomal abnormalities, and children with DS have increased risks of receiving diagnoses of specific comorbidities.&lt;/p&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Aims&lt;/h3&gt;&lt;p&gt;This study aimed to assess the frequencies and relationships between sleep problems, gastrointestinal (GI) symptoms, comorbid psychopathology, and challenging behavior.&lt;/p&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Methods and procedures&lt;/h3&gt;&lt;p&gt;The Children’s Sleep Habits Questionnaire, Gastrointestinal Symptom Inventory, Autism Spectrum Disorder-Comorbid for Children, and Behavior Problems Inventory-Short Form were completed by 123 parents of children and adolescents with DS.&lt;/p&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Outcomes and results&lt;/h3&gt;&lt;p&gt;The frequency of GI symptoms was 74.8 %, with high frequencies also found for: sleep problems (100 %), challenging behavior (100 %), and moderate to severe levels of comorbid psychopathology (tantrum=80 %; repetitive behavior=63 %; avoidant behavior=82 %; worry/depressed=61 %; conduct behavior=100 %; over-eating=100 %; under-eating=100 %). A significant moderate correlation was found between total GI symptoms and self-injurious behavior frequency. Children who presented with abdominal pain engaged in self-injurious behavior more frequently than those with no abdominal pain.&lt;/p&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Conclusions and implications&lt;/h3&gt;&lt;p&gt;Findings indicated a high frequency of sleep problems, comorbid psychopathology, GI symptoms, and challenging behavior and demonstrated a relationship between GI symptoms and self-injurious behavior in children and adolescents with DS. This research illustrated the importance of investigating comorbid conditions in individuals with DS.&lt;/p&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;&lt;em&gt;What&lt;/em&gt; this paper adds?&lt;/h3&gt;&lt;p&gt;Down Syndrome (DS) is a genetic condition characterized by trisomy 21 and is a leading cause of intellectual disability worldwide. The prevalence of DS is commonly associated with advanced maternal age and is associated with multiple comorbid conditions. The current study aimed to investigate the frequency of and relationship between sleep problems, gastrointestinal symptoms, comorbid psychopathology, and challenging behavior in children and adolescents with DS. High-frequency levels were found for sleep problems (100 %), challenging behavior (100 %), gastrointestinal symptoms (74.8 %), and moderate to severe levels of the different comorbid psychopathologies (tantrum=80 %; repetitive behavior=63 %; avoidant behavior=82 %; worry/depressed=61 %; conduct behavior=100 %; over-eating=100 %; under-eating=100 %). Results indicated a significant difference in self-injurious behavior frequency between individuals who presented with abdominal pain and those who did not. This study is the first to investigate the relationship of multiple comorbid conditions in a sample of children with DS. This paper adds to the literature by demonstrating the frequency of a number of comorbid conditions in children and adolescents with DS. The paper also a","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"151 ","pages":"Article 104788"},"PeriodicalIF":2.9,"publicationDate":"2024-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0891422224001203/pdfft?md5=c415b2f40c4abd18b58f212fdbbc33fc&pid=1-s2.0-S0891422224001203-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141535942","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}

{"title":"The centrality of healthcare and education interactions – An Interpretive Phenomenological Analysis of experiences of parents of children with Ehlers-Danlos Syndrome","authors":"Carol Somers ,&nbsp;Chris McCusker ,&nbsp;Paula Prendeville ,&nbsp;Sinéad Kelleher","doi":"10.1016/j.ridd.2024.104789","DOIUrl":"10.1016/j.ridd.2024.104789","url":null,"abstract":"<div><h3>Background</h3><p>Ehlers-Danlos Syndrome (EDS) is a rare group of connective tissue disorders and, as such, the diagnosis can often be delayed. While emerging research indicates that there may be adverse psychosocial consequences for the child, little is known about the processes behind such outcomes, including the psychosocial impact of this rare disease on family life.</p></div><div><h3>Aims</h3><p>To extend our understanding, we examined the lived experiences of parenting a child with EDS.</p></div><div><h3>Methods</h3><p>Four parents recruited from a specialist child development clinic participated in semi-structured interviews. Data were analysed using Interpretative Phenomenological Analysis</p></div><div><h3>Results</h3><p>Three superordinate themes were identified: (1) <em>Challenges Associated with hEDS,</em> (2) <em>Interactions with Professionals</em> and (3) “<em>Pulling and Pacing”: Life with EDS.</em></p></div><div><h3>Discussion</h3><p>This is one of the first qualitative studies to gain an insight into the lived experiences of parenting a child with EDS. Findings had systemic implications. Specifically, we demonstrate the need for raising awareness in health and educational professionals about how to better support families to support the child, as well as the importance of promoting effective advocacy skills in parents.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"151 ","pages":"Article 104789"},"PeriodicalIF":2.9,"publicationDate":"2024-07-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0891422224001215/pdfft?md5=acabf9e8f5ac44757ef85c2fe417f1d2&pid=1-s2.0-S0891422224001215-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141499579","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}

{"title":"Emerging adults’ emotions toward their siblings with down syndrome","authors":"Raaya Alon","doi":"10.1016/j.ridd.2024.104791","DOIUrl":"https://doi.org/10.1016/j.ridd.2024.104791","url":null,"abstract":"<div><h3>Background</h3><p>Typically-developing siblings of individuals with Down Syndrome often experience complex emotions towards their sibling. This study explored how social support, personal resources (optimism, sense of coherence [SOC]), and individual variables (sex, religious affiliation, siblings’ functionality) may impact emerging adult siblings’ emotions toward their sibling with Down Syndrome. <em>Methods</em>: Participants were 292 siblings of individuals with DS ranging in age from 18–27 (<em>M</em>=21.54, <em>SD</em>=2.50). Participants completed self-report questionnaires exploring optimism, SOC, support, and acceptance. <em>Results:</em> Higher levels of support and optimism were positively associated with positive emotions, and higher SOC with lower levels of negative emotions. Siblings’ functionality and religious affiliation interacted with variables to predict emotions. <em>Conclusions</em>: This study contributes to a greater understanding of how emotions may play a role in sibling relations during the emerging adulthood stage. It also provides unique insight into how religious affiliation may be associated with more positive outcomes for siblings.</p></div>","PeriodicalId":51351,"journal":{"name":"Research in Developmental Disabilities","volume":"151 ","pages":"Article 104791"},"PeriodicalIF":2.9,"publicationDate":"2024-07-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141480403","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}