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Availability of Services and Caregiver Burden: Supporting Individuals With Neurogenetic Conditions During the COVID-19 Pandemic.
Kowanda, Michelle; Cartner, Lindsey; Kentros, Catherine; Geltzeiler, Alexa R; Singer, Kaitlyn E; Weaver, W Curtis; Lehman, Christopher D; Smith, Simone; Smith, Rebecca Sheedy; Walsh, Lauren Kasparson; Diehl, Katharine; Nagpal, Natalie; Brooks, Elizabeth; Mebane, Caroline M; Wilson, Ashley L; Marvin, Alison R; White, L Casey; Law, J Kiely; Jensen, William; Daniels, Amy M; Tjernagel, Jennifer; Snyder, LeeAnne Green; Taylor, Cora M; Chung, Wendy K.
  • Kowanda M; 382904Simons Foundation, New York, NY, USA.
  • Cartner L; 382904Simons Foundation, New York, NY, USA.
  • Kentros C; Department of Pediatrics, 21611Columbia University Irving Medical Center, New York, NY, USA.
  • Geltzeiler AR; Department of Pediatrics, 21611Columbia University Irving Medical Center, New York, NY, USA.
  • Singer KE; 2780Geisinger Autism & Developmental Medicine Institute, Lewisburg, PA, USA.
  • Weaver WC; 2780Geisinger Autism & Developmental Medicine Institute, Lewisburg, PA, USA.
  • Lehman CD; 2780Geisinger Autism & Developmental Medicine Institute, Lewisburg, PA, USA.
  • Smith S; 2780Geisinger Autism & Developmental Medicine Institute, Lewisburg, PA, USA.
  • Smith RS; 2780Geisinger Autism & Developmental Medicine Institute, Lewisburg, PA, USA.
  • Walsh LK; 2780Geisinger Autism & Developmental Medicine Institute, Lewisburg, PA, USA.
  • Diehl K; 382904Simons Foundation, New York, NY, USA.
  • Nagpal N; 382904Simons Foundation, New York, NY, USA.
  • Brooks E; 382904Simons Foundation, New York, NY, USA.
  • Mebane CM; Department of Pediatrics, 21611Columbia University Irving Medical Center, New York, NY, USA.
  • Wilson AL; Department of Pediatrics, 21611Columbia University Irving Medical Center, New York, NY, USA.
  • Marvin AR; Maryland Center for Developmental Disabilities, 27870Kennedy Krieger Institute, Baltimore, MD, USA.
  • White LC; 382904Simons Foundation, New York, NY, USA.
  • Law JK; Maryland Center for Developmental Disabilities, 27870Kennedy Krieger Institute, Baltimore, MD, USA.
  • Jensen W; 382904Simons Foundation, New York, NY, USA.
  • Daniels AM; 382904Simons Foundation, New York, NY, USA.
  • Tjernagel J; 382904Simons Foundation, New York, NY, USA.
  • Snyder LG; 382904Simons Foundation, New York, NY, USA.
  • Taylor CM; 2780Geisinger Autism & Developmental Medicine Institute, Lewisburg, PA, USA.
  • Chung WK; 382904Simons Foundation, New York, NY, USA.
J Child Neurol ; 36(9): 760-767, 2021 08.
Article in English | MEDLINE | ID: covidwho-1172813
ABSTRACT
Because of the COVID-19 pandemic, in-person services for individuals with neurodevelopmental disabilities were disrupted globally, resulting in a transition to remote delivery of services and therapies. For individuals with neurogenetic conditions, reliance on nonclinical caregivers to facilitate all therapies and care was unprecedented. The study aimed to (1) describe caregivers' reported impact on their dependent's services, therapies, medical needs, and impact on themselves as a result of the COVID-19 pandemic and (2) assess the relationship between the extent of disruption of services and the degree of self-reported caregiver burden. Two online questionnaires were completed by caregivers participating in Simons Searchlight in April and May 2020. Surveys were completed by caregivers of children or dependent adults with neurodevelopmental genetic conditions in Simons Searchlight. Caregivers reported that the impact of the COVID-19 pandemic moderately or severely disrupted services, therapies, or medical supports. The majority of caregivers were responsible for providing some aspect of therapy. Caregivers reported "feeling stressed but able to deal with problems as they arise," and reported lower anxiety at follow-up. Caregivers reported that telehealth services were not meeting the needs of those with complex medical needs. Future surveys will assess if and how medical systems, educational programs, therapists, and caregivers adapt to the challenges arising during the COVID-19 pandemic.
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Full text: Available Collection: International databases Database: MEDLINE Main subject: Caregivers / Health Care Surveys / Neurodevelopmental Disorders / Caregiver Burden / COVID-19 / Health Services Accessibility Type of study: Cohort study / Observational study / Prognostic study / Qualitative research / Randomized controlled trials Limits: Adolescent / Adult / Child / Child, preschool / Female / Humans / Male Language: English Journal: J Child Neurol Journal subject: Neurology / Pediatrics Year: 2021 Document Type: Article Affiliation country: 08830738211001209

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Full text: Available Collection: International databases Database: MEDLINE Main subject: Caregivers / Health Care Surveys / Neurodevelopmental Disorders / Caregiver Burden / COVID-19 / Health Services Accessibility Type of study: Cohort study / Observational study / Prognostic study / Qualitative research / Randomized controlled trials Limits: Adolescent / Adult / Child / Child, preschool / Female / Humans / Male Language: English Journal: J Child Neurol Journal subject: Neurology / Pediatrics Year: 2021 Document Type: Article Affiliation country: 08830738211001209