Ajidd-American Journal on Intellectual and Developmental Disabilities最新文献

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.

Tuberous sclerosis complex (TSC) is a genetic condition characterized by both medical and neuropsychiatric diagnoses that emerge across the lifespan. As part of a clinical trial, caregivers of children with TSC were interviewed about their experiences navigating medical, school, and social services. Semistructured interviews (N = 20) with caregivers of children with TSC (27-60 months) were conducted upon exit from the study. The interviews covered topics related to experiences following diagnosis, interactions with providers, sources of information, and access to services and treatment. The main themes from the caregiver interviews included: (1) sources of information about TSC and treatment; (2) access to high-quality and expert medical care; (3) perception and diagnosis of TAND; (4) impact of epilepsy on daily life, intervention, and schooling; and (5) access to therapeutic services, compatible providers, and evaluations. Additionally, parents provided recommendations for other caregivers navigating their child's early treatment following diagnosis. These results reflect the importance of current research priorities for TSC stakeholders, including implementation of existing clinical guidelines, improved access to TSC expertise, and coordinated and integrated health care.

Sleep problems are common in Rett syndrome and other neurogenetic syndromes. Actigraphy is a cost-effective, objective method for measuring sleep. Current guidelines require caregiver-reported bed and wake times to facilitate actigraphy data scoring. The current study examined missingness and consistency of caregiver-reported bed and wake times from paper sleep diaries and actigraphy event mark button presses in a sample of 38 individuals with Rett and related syndromes (aged 2-36 years, mean = 13.1) across two 14-day collection time points. Rates of missingness and discrepancy between the 2 sources were relatively high and correlated with clinical severity and quality of life. Overall, the results suggest a need for alternative actigraphy scoring methods that do not rely on caregiver report in this population.

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.

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.

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.

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.

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.

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.

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.