TY - JOUR
T1 - Availability of Services and Caregiver Burden
T2 - Supporting Individuals With Neurogenetic Conditions During the COVID-19 Pandemic
AU - Kowanda, Michelle
AU - Cartner, Lindsey
AU - Kentros, Catherine
AU - Geltzeiler, Alexa R.
AU - Singer, Kaitlyn E.
AU - Weaver, W. Curtis
AU - Lehman, Christopher D.
AU - Smith, Simone
AU - Smith, Rebecca Sheedy
AU - Walsh, Lauren Kasparson
AU - Diehl, Katharine
AU - Nagpal, Natalie
AU - Brooks, Elizabeth
AU - Mebane, Caroline M.
AU - Wilson, Ashley L.
AU - Marvin, Alison R.
AU - White, L. Casey
AU - Law, J. Kiely
AU - Jensen, William
AU - Daniels, Amy M.
AU - Tjernagel, Jennifer
AU - Snyder, Lee Anne Green
AU - Taylor, Cora M.
AU - Chung, Wendy K.
N1 - Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Simons Searchlight is funded by the Simons Foundation as part of SFARI. Award ID for Geisinger Autism & Developmental Medicine Institute is 312100. Award ID for Columbia University Irving Medical Center is 225718.
Funding Information:
We are grateful to all of the families participating in Simons Searchlight, as well as the Simons Searchlight Consortium. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Simons Searchlight is funded by the Simons Foundation as part of SFARI. Award ID for Geisinger Autism & Developmental Medicine Institute is 312100. Award ID for Columbia University Irving Medical Center is 225718.
Publisher Copyright:
© The Author(s) 2021.
PY - 2021/8
Y1 - 2021/8
N2 - 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.
AB - 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.
KW - COVID-19 pandemic
KW - autism
KW - caregiver stress
KW - neurogenetic
KW - telehealth
UR - http://www.scopus.com/inward/record.url?scp=85104267848&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85104267848&partnerID=8YFLogxK
U2 - 10.1177/08830738211001209
DO - 10.1177/08830738211001209
M3 - Article
C2 - 33829918
AN - SCOPUS:85104267848
SN - 0883-0738
VL - 36
SP - 760
EP - 767
JO - Journal of child neurology
JF - Journal of child neurology
IS - 9
ER -