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McClellanville Library
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John's Island Library
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Hurd/St. Andrews Library
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Miss Jane's Building (Edisto Library Temporary Location)
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Availability of Services and Caregiver Burden: Supporting Individuals With Neurogenetic Conditions During the COVID-19 Pandemic.
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- Author(s): Kowanda M;Kowanda M; Cartner L; Cartner L; Kentros C; Kentros C; Geltzeiler AR; Geltzeiler AR; Singer KE; Singer KE; Weaver WC; Weaver WC; Lehman CD; Lehman CD; Smith S; Smith S; Smith RS; Smith RS; Walsh LK; Walsh LK; Diehl K; Diehl K; Nagpal N; Nagpal N; Brooks E; Brooks E; Mebane CM; Mebane CM; Wilson AL; Wilson AL; Marvin AR; Marvin AR; White LC; White LC; Law JK; Law JK; Jensen W; Jensen W; Daniels AM; Daniels AM; Tjernagel J; Tjernagel J; Snyder LG; Snyder LG; Taylor CM; Taylor CM; Chung WK; Chung WK; Chung WK; Chung WK
- Source:
Journal of child neurology [J Child Neurol] 2021 Aug; Vol. 36 (9), pp. 760-767. Date of Electronic Publication: 2021 Apr 08.- Publication Type:
Journal Article; Research Support, Non-U.S. Gov't- Language:
English - Source:
- Additional Information
- Source: Publisher: Sage Country of Publication: United States NLM ID: 8606714 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1708-8283 (Electronic) Linking ISSN: 08830738 NLM ISO Abbreviation: J Child Neurol Subsets: MEDLINE
- Publication Information: Publication: Thousand Oaks, CA : Sage
Original Publication: Littleton, MA : PSG Pub. Co., c1986- - Subject Terms: COVID-19/*psychology ; Caregiver Burden/*psychology ; Caregivers/*psychology ; Health Care Surveys/*methods ; Health Services Accessibility/*statistics & numerical data ; Neurodevelopmental Disorders/*therapy; Adolescent ; Adult ; Caregivers/statistics & numerical data ; Child ; Child, Preschool ; Female ; Health Care Surveys/statistics & numerical data ; Humans ; Male ; Needs Assessment ; Pandemics ; SARS-CoV-2 ; Surveys and Questionnaires
- 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.
- Contributed Indexing: Keywords: COVID-19 pandemic; autism; caregiver stress; neurogenetic; telehealth
- Publication Date: Date Created: 20210408 Date Completed: 20210913 Latest Revision: 20210913
- Publication Date: 20240628
- Accession Number: PMC8033176
- Accession Number: 10.1177/08830738211001209
- Accession Number: 33829918
- Source:
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