Aim: To describe the complex roles of and crucial support provided by caregivers to young adults with cerebral palsy (CP) during the transition to adulthood.
Method: This was a qualitative study. We conducted 20 semi-structured interviews (13 caregiver; 7 patient/caregiver dyad) and analyzed data using a qualitative descriptive approach informed by phenomenological principles.
Objective: Pilot a clinical model and study to learn more about how employment impacts health in children and young adults with intellectual and developmental disabilities.
Background: As young individuals transition into adulthood, milestones such as independent living and gainful employment become paramount. However, for those with intellectual and developmental disabilities (IDD), these milestones can diverge notably from those of typically developing peers.
Background: Many physicians feel uncomfortable caring for patients with intellectual and developmental disabilities (IDD). While some residency training programs include lecture content on IDD, few provide structured experiences with individuals with IDD. One strategy for improving comfort is "contact theory:" increasing interactions with "dissimilar" people can lead to decreased negative attitudes toward that population.
View Article and Find Full Text PDFBackground And Objectives: Individuals with intellectual and/or developmental disabilities (IDD) experience worse health outcomes compared with peers without a disability partly due to difficulties accessing age-appropriate health care. Provider discomfort with interacting and caring for individuals with IDD is a primary barrier to accessing care. The objectives of this study were to describe resident physicians' education, experiences, and comfort levels regarding individuals with IDD and to identify predictors of higher comfort levels with this patient population.
View Article and Find Full Text PDFObjective: The authors examined how the COVID-19 pandemic affected the behavioral health of people with intellectual and developmental disabilities (IDD).
Methods: A modified version of the Coronavirus Health Impact Survey-Adapted for Autism and Related Neurodevelopmental Conditions was sent to the authors' clinical networks and IDD-affiliated organizations from March to June 2021.
Results: In total, 437 people with IDD or their caregivers responded to the survey.
Objectives: Cerebral palsy (CP) is the most common childhood motor disability, yet its link to single-gene disorders is under-characterized. To explore the genetic landscape of CP, we conducted whole exome sequencing (WES) in a cohort of patients with CP.
Methods: We performed comprehensive phenotyping and WES on a prospective cohort of individuals with cryptogenic CP (who meet criteria for CP; have no risk factors), non-cryptogenic CP (who meet criteria for CP; have at least one risk factor), and CP masqueraders (who could be diagnosed with CP, but have regression/progressive symptoms).
Purpose Of Review: Etiologic investigations for adults with intellectual disability (ID) pose a special challenge to many adult neurologists. The adaptability of pediatric guidelines for workup of ID to adult populations has not been clearly established. We review the current recommendations on etiologic workup of ID in children and adults and provide initial guidance for adult neurologists who care for individuals with ID of unknown etiology.
View Article and Find Full Text PDFIndividuals with intellectual and developmental disabilities (IDDs) are among our most medically vulnerable neurologic patient population. As such, they are at particular risk of psychosocial and medical harm during the coronavirus disease 2019 (COVID-19) pandemic. Here, we highlight strategies to decrease potential infectious exposures and ensure continued optimal neurologic care for individuals with IDD during the COVID-19 pandemic.
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