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1.
medRxiv ; 2024 Jun 20.
Article in English | MEDLINE | ID: mdl-38946966

ABSTRACT

People with mosaicism for trisomy 21 have been shown to exhibit the many of same phenotypic traits present in people with non-mosaic Down syndrome, but with varying symptom severity. However, the behavioral phenotype of people with mosaic Down syndrome (mDS) has not been well characterized. This study aimed to examine the prevalence of self-report and caregiver-report symptoms of depression and anxiety among a sample of 62 participants with mDS aged 12 - 46, and assess their association with the percentage of trisomy 21 in blood and/or buccal mucosa cells. The results showed that 53% of the participants reported clinically significant depression symptoms and 76% reported clinically significant anxiety symptoms. No clear associations were observed between the percentage of trisomic cells and total anxiety or depression, but a significant positive association between the proband-reported specific fears subscale and the percentage of trisomic cells in buccal specimens was detected (r = .43, p = .007). This study highlights the high occurrence of depression and anxiety symptoms in individuals with mDS and the need for routine assessment to optimize their care. It also demonstrates the ability of people with mDS to complete these evaluations, thereby supporting their inclusion in research studies/clinical trials.

2.
Eval Program Plann ; 79: 101774, 2020 04.
Article in English | MEDLINE | ID: mdl-32032894

ABSTRACT

People with intellectual and developmental disabilities (IDD) are often excluded from meaningful participation in research and program evaluation for various reasons, including protocols and measures that are inaccessible for people with varying cognitive and communication abilities. Emancipatory research models emphasize the importance of inclusive research practices. Video vignettes are a promising tool for research and program evaluation with people with IDD because they are standardized, they use visual imagery rather than relying on written or verbal communication, and they allow for distance from sensitive topics. The Leadership for Empowerment and Abuse Prevention (LEAP) project used video vignettes to evaluate a healthy relationship program for people with IDD. The authors discuss the process of piloting various protocols and measures, which then ultimately led to the use of video vignettes in the evaluation.


Subject(s)
Developmental Disabilities/epidemiology , Health Promotion/organization & administration , Intellectual Disability/epidemiology , Videotape Recording , Violence/prevention & control , Empowerment , Female , Humans , Interpersonal Relations , Leadership , Male , Pilot Projects , Program Evaluation
3.
Intellect Dev Disabil ; 55(1): 25-36, 2017 02.
Article in English | MEDLINE | ID: mdl-28181884

ABSTRACT

Young adults with intellectual disability (ID) continue to experience the least successful postschool outcomes among transition-aged youth ( Sanford et al., 2011 ). Experts disagree on the most effective approach to improve outcomes such as employment, postsecondary education, and community living. In 2015, the National Goals Conference brought together educational researchers to set an agenda to guide the field in terms of research, practice, and policy ( Thoma, Cain, & Walther-Thomas, 2015 ). One of their recommendations, based on promising research and practices, urged the field to identify effective personnel preparation and professional development practices that ensure general and special educators can implement a UDL framework ( Thoma, Cain, et al., 2015 ). This study surveyed program coordinators at accredited universities to determine what is currently being done to prepare educators to implement a Universal Design for Learning (UDL) framework, the extent to which a UDL framework is being incorporated into preservice courses in higher education, and how a UDL framework is being used to improve postschool outcomes for youth with ID.


Subject(s)
Education of Intellectually Disabled , Models, Educational , Teacher Training , Humans , Professional Competence , Universities
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