Mikayla Shaffer, John Patrick T Co, Karen Donelan, Brian G Skotko, Amy Torres, Jonathan P Winickoff, Stephanie L Santoro
{"title":"Successful (and Unsuccessful) Recruitment Approaches and Participant Loss in a Down Syndrome Survey.","authors":"Mikayla Shaffer, John Patrick T Co, Karen Donelan, Brian G Skotko, Amy Torres, Jonathan P Winickoff, Stephanie L Santoro","doi":"10.1352/1944-7558-130.2.131","DOIUrl":"10.1352/1944-7558-130.2.131","url":null,"abstract":"<p><p>We recruited caregivers of individuals ages 0-21 with Down syndrome (DS) to complete an electronic survey. Multiple recruitment sources and methods were used. From 2023-2024, we received 542 valid, complete survey responses. We found the most success with use of DS affiliate organizations, the DS-Connect® contact registry for DS, and outreach to DS clinic patients. Of those who started the screener, 1,569 people screened in and were eligible; of those eligible, 730 (46.5%) consented. We experienced bots and fraudsters despite efforts to minimize those respondents from the outset. We present lessons learned in surveying caregivers from a low-incidence medical condition, with focus on our experience with invalid respondents, to inform other researchers conducting survey research related to genetic syndromes.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 2","pages":"131-145"},"PeriodicalIF":1.9,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143505921","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Longitudinally Predicting Behavioral Challenges From Executive Functioning in Youth With Down Syndrome.","authors":"Amanallah Soltani, Deborah J Fidler, Lina Patel, Kellie Voth, Anna J Esbensen","doi":"10.1352/1944-7558-130.2.146","DOIUrl":"10.1352/1944-7558-130.2.146","url":null,"abstract":"<p><p>This study explored how caregiver-reported executive functioning domains, assessed by the BRIEF2 at baseline, predicted behavioral challenges reported by caregivers using the CBCL six months later. The sample included 94 youth with Down syndrome, aged 6 to 18 years. Results of hierarchical regression analyses revealed that, after controlling for the effect of IQ, working memory significantly predicted inattentive behaviors, inhibition significantly predicted rule-breaking behaviors, and both inhibition and emotional control significantly predicted aggressive and externalizing behaviors. After controlling for baseline behaviors, only working memory persisted as a significant predictor of inattentive behaviors measured six months later. The findings are discussed by referring to the relevant theories and research and providing clinical implications and recommendations for further studies.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 2","pages":"146-162"},"PeriodicalIF":1.9,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143505880","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Carly Moser, Meghan M Burke, Leann Smith DaWalt, Julie Lounds Taylor
{"title":"The Role of Parent Advocacy in Autistic Youths' Self-Determination.","authors":"Carly Moser, Meghan M Burke, Leann Smith DaWalt, Julie Lounds Taylor","doi":"10.1352/1944-7558-130.2.116","DOIUrl":"10.1352/1944-7558-130.2.116","url":null,"abstract":"<p><p>Parent advocacy is important for the transition outcomes of autistic youth. However, it is unclear whether parent advocacy efforts support or stifle youths' self-determination. This study examined concurrent (n = 180) and longitudinal (n = 134) associations between parent advocacy and transition-aged autistic youths' self-determination (as reported by parents) and explored whether individual and family characteristics moderated this relationship. Cross-sectional results indicated a positive association between parent advocacy and self-determination for youth with higher adaptive behavior, lower externalizing behavior, and higher parent-child relationship quality. Longitudinal results demonstrated that change in parent advocacy related to change in self-determination for youth with lower adaptive behavior and higher externalizing behavior. Findings suggest that targeting parent advocacy could enhance self-determination skills in autistic youth.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 2","pages":"116-130"},"PeriodicalIF":1.9,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11951422/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143505923","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sarah Lineberry, Matthew Bogenschutz, Michael Broda
{"title":"Proxy Responses in Research on COVID-19 Among People With Intellectual and Developmental Disabilities.","authors":"Sarah Lineberry, Matthew Bogenschutz, Michael Broda","doi":"10.1352/1944-7558-129.5.346","DOIUrl":"https://doi.org/10.1352/1944-7558-129.5.346","url":null,"abstract":"<p><p>Researchers and advocates have long called for improved research methods that better include people with intellectual and developmental disabilities (IDD), but challenges to doing so persist. Proxy responses are frequently used to circumvent some of these challenges, but may not fully capture the perspectives of people with IDD. The COVID-19 pandemic highlighted the possibility of consequences due to a lack of research about health outcomes for people with IDD, with documented disproportionate impact but little understanding about specific experiences for people with IDD. Using exploratory graph analysis (EGA) we explored the use of proxy responses on the COVID-19 Supplement of the National Core Indicators In-Person Survey. Findings suggest significant differences in response patterns between people who answered independently, via proxy, and with a mix of response types beyond what would be expected due to demographic differences in participants.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 5","pages":"346-361"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142094172","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Chronic Health Conditions Among Adults With Intellectual and Developmental Disabilities in a State Medicaid System.","authors":"Kiley J McLean, Lauren Bishop","doi":"10.1352/1944-7558-129.5.331","DOIUrl":"https://doi.org/10.1352/1944-7558-129.5.331","url":null,"abstract":"<p><p>Despite a growing number of adults with intellectual and developmental disabilities (IDD) and documented risk for adverse outcomes as they age, little is known about the health and healthcare patterns of adults with different IDD throughout adulthood. This study uses Wisconsin Medicaid claims data to characterize health conditions among adults with IDD. Results indicate high prevalence of asthma, diabetes, heart disease, and hypertension. Heart disease rates were particularly high, having been observed among 39% of autistic adults, 64% of autistic adults with intellectual disability (ID), 67% of adults with Down syndrome, and 75% of adults with ID only. Given there are no known biological differences underlying increased morbidities among most people with IDD, developing inclusive prevention measures should be prioritized in future research.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 5","pages":"331-345"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142094157","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Neurodevelopmental Outcomes of Pediatric Cardiac Extracorporeal Membrane Oxygenation Survivors With Central Cannulation.","authors":"Ozlem Saritas Nakip, Selman Kesici, Gokcen Duzgun Konuskan, Mutlu Uysal Yazici, Bahadır Konuskan, Benan Bayrakci","doi":"10.1352/1944-7558-129.5.377","DOIUrl":"https://doi.org/10.1352/1944-7558-129.5.377","url":null,"abstract":"<p><p>Extracorporeal life support, such as pediatric cardiac extracorporeal membrane oxygenation (ECMO), is associated with significant mortality and morbidity risk. This study evaluated cardiac ECMO survivors with central cannulation and found that 51.1% were discharged from the hospital. The study also revealed high rates of developmental delay (82.7%), motor dysfunction (58.8%), and cognitive dysfunction (70.6%) among survivors. No significant correlation was found between the duration of ECMO, age at ECMO, pre-ECMO maximum lactate levels, and cognitive scores. Participants with motor dysfunction were significantly younger (p = 0.04). PRISM scores of those with an abnormal developmental status were significantly higher (p = 0.03). Logistic regression analysis did not show a significantly increased risk. Factors such as age, disease severity, and ECMO itself were identified as potential contributors to neurodevelopmental delay.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 5","pages":"377-386"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142094171","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Child and Family Predictors for Mastery Motivation in Children With Developmental Delays.","authors":"Pei-Jung Wang, Hua-Fang Liao, Li-Chiou Chen, Lin-Ju Kang, Lu Lu, Karen Caplovitz Barrett","doi":"10.1352/1944-7558-129.5.387","DOIUrl":"https://doi.org/10.1352/1944-7558-129.5.387","url":null,"abstract":"<p><p>Motivation is a key factor for child development, but very few studies have examined child and family predictors of both child task and perceived motivation. Thus, the three aims of this 6-month longitudinal study in preschoolers with global developmental delays (GDD) were to explore: 1) differences between task and perceived motivation in cognitive domain; 2) differences among three domains of perceived motivation: cognitive, gross motor, and social; and 3) early child and family predictors of cognitive task motivation and the three domains of perceived motivation 6 months later. Results indicated that preschoolers with GDD showed higher cognitive task motivation than cognitive perceived motivation, and lower perceived cognitive motivation than the other two perceived motivation domains. Different child and family factors predicted cognitive task motivation and the three domains of perceived motivation. Practitioners should educate caregivers on how to observe children's motivation to enhance children's active participation.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 5","pages":"387-404"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142094156","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ruth Luckasson, Robert L Schalock, Valerie J Bradley
{"title":"Diffusion of the Shared Citizenship Paradigm: Strategies and Next Steps.","authors":"Ruth Luckasson, Robert L Schalock, Valerie J Bradley","doi":"10.1352/1944-7558-129.5.362","DOIUrl":"https://doi.org/10.1352/1944-7558-129.5.362","url":null,"abstract":"<p><p>The field of disabilities is being challenged to adopt a paradigm that can be used to guide the transformation of services, supports, and research practices to ensure and enhance the personal autonomy, rights, and community inclusion of people with disabilities. This article describes strategies associated with the systematic diffusion and sustainability of an innovation such as the emerging Shared Citizenship Paradigm (SCP), which has the potential to guide the transformation. The systematic diffusion process incorporates five components: knowledge, persuasion, decision, implementation, and confirmation. The systematic process also addresses the risks of dissonance, backlash, unintended consequences, and backsliding that can emerge when the sustainability of a paradigm is not supported. Throughout the article, we stress that meaningful change in organizations and systems requires use of a paradigm such as the SCP and its principles and foundation pillars to guide the change, and a systematic process such as that described in this article to bring about and sustain the change.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 5","pages":"362-376"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142094169","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Impact of Educational Placement on the Goal Attainment Outcomes of K-6 Students With Complex Needs Across Academic and Social-Behavioral-Communication Domains.","authors":"Karrie A Shogren, Tyler A Hicks, Jennifer A Kurth","doi":"10.1352/1944-7558-129.5.405","DOIUrl":"https://doi.org/10.1352/1944-7558-129.5.405","url":null,"abstract":"<p><p>Students with complex support needs have intense and frequent support needs for learning and participating across multiple domains. Addressing those needs in a comprehensive manner is the purpose of special education, which is accomplished through instructional and Individualized Education Program (IEP) goals. Yet simply setting goals is insufficient; to facilitate positive student outcomes, there is an inherent expectation that students will meet those goals to achieve their potential. Understanding factors that impact variability in goal attainment is essential to this purpose. This includes the extent to which variability in goal attainment is explained by factors varying within students (e.g., goal domains being targeted) or by factors varying between students (e.g., education placement, overall intensity of student support needs). Using Bayesian multi-level modeling analysis to examine the instructional goals of 53 elementary students with complex support needs, we found that 75% of variability in goal attainment exists within student's goals. However, 25% of variability is explained by factors that vary across students-in this case, educational placement and overall intensity of support needs. We conclude with recommendations for research and practice aimed at enhancing goal attainment for students with complex support needs.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 5","pages":"405-419"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142094170","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Reducing Depressive Symptoms Among Latina Mothers of Autistic Children: A Randomized Controlled Trial.","authors":"Amy Pei-Lung Yu, Weiwen Zeng, Kristina Lopez, Sandy Magaña","doi":"10.1352/1944-7558-129.4.294","DOIUrl":"10.1352/1944-7558-129.4.294","url":null,"abstract":"<p><p>This study examines the intervention effect of a culturally tailored parent education program in reducing depressive symptoms among Latina mothers of autistic children. In this two-site randomized waitlist-control study (n = 109 mother-child dyads), a peer-to-peer mentoring (promotora) model was used to deliver an intervention that was designed to increase mothers' self-efficacy and use of evidence-based strategies. We assessed mothers' depressive symptom (CES-D) scores at three time points and used linear mixed models to determine whether their scores significantly changed from baseline to postintervention (Time 2) and at 4 months postintervention (Time 3). Results show that mothers in the intervention group reported a significant decrease in mean depressive symptom scores at Time 2 and that the effect was maintained at Time 3 with intermediate to medium effect sizes. There were no differences in results across sites. Findings suggest that Parents Taking Action, a culturally tailored intervention led by peer mentors, showed a significant effect both immediately after the intervention and 4 months postintervention in reducing depressive symptoms among Latina mothers of autistic children.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"129 4","pages":"294-307"},"PeriodicalIF":1.9,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141452097","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}