1
40
1
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
April 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2018 List
URL Address
<a href="http://doi.org/10.1016/j.yebeh.2018.01.003" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.yebeh.2018.01.003</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Assessing the impact of caring for a child with Dravet syndrome: Results of a caregiver survey
Publisher
An entity responsible for making the resource available
Epilepsy & Behavior
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Caregivers; Child; Child Care; Only Child; Dravet syndrome; child; Caregiver burden; EuroQoL 5D-5L; Oberst Caregiving Burden Scale; Supportive services; Epilepsies; Myoclonic
Creator
An entity primarily responsible for making the resource
Campbell JD; Whittington MD; Kim CH; VanderVeen GR; Knupp KG; Gammaitoni A
Description
An account of the resource
OBJECTIVE: The objective of this study was to describe and quantify the impact of caring for a child with Dravet syndrome (DS) on caregivers. METHODS: We surveyed DS caregivers at a single institution with a large population of patient with DS. Survey domains included time spent/difficulty performing caregiving tasks (Oberst Caregiving Burden Scale, OCBS); caregiver health-related quality of life (EuroQoL 5D-5L, EQ-5D); and work/activity impairment (Work Productivity and Activity Impairment questionnaire, WPAI). Modified National Health Interview Survey (NHIS) questions were included to assess logistical challenges associated with coordinating medical care. RESULTS: Thirty-four primary caregivers responded, and 30/34 respondents completed the survey. From OCBS, providing transportation, personal care, and additional household tasks required the greatest caregiver time commitment; arranging for child care, communication, and managing behavioral problems presented the greatest difficulty. EuroQoL 5D-5L domains with the greatest impact on caregivers (0=none, 5=unable/extreme) were anxiety/depression (70% of respondents>/=slight problems, 34%>/=moderate) and discomfort/pain (57% of respondents>/=slight problems, 23%>/=moderate). The mean EQ-5D general health visual analogue scale (VAS) score (0=death; 100=perfect health) was 67 (range, 11-94). Respondents who scored <65 were two- to fourfold more likely to report >/=moderate time spent and difficulty managing child behavior problems and assisting with walking, suggesting that children with DS with high degrees of motor or neurodevelopmental problems have an especially high impact on caregiver health. On the WPAI, 26% of caregivers missed >1day of work in the previous week, with 43% reporting substantial impact (>/=6, scale=1-10) on work productivity; 65% reported switching jobs, quitting jobs, or losing a job due to caregiving responsibilities. National Health Interview Survey responses indicated logistical burdens beyond the home; 50% of caregivers made >/=10 outpatient visits in the past year with their child with DS. CONCLUSIONS: Caring for patients with DS exerts physical, emotional, and time burdens on caregivers. Supportive services for DS families are identified to highlight an unmet need for DS treatments.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.yebeh.2018.01.003" target="_blank" rel="noreferrer noopener">10.1016/j.yebeh.2018.01.003</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
April 2018 List
Campbell JD
Caregiver Burden
Caregivers
Child
Child Care
Dravet Syndrome
Epilepsies
Epilepsy & Behavior
EuroQoL 5D-5L
Gammaitoni A
Kim CH
Knupp KG
Myoclonic
Oberst Caregiving Burden Scale
Only Child
Supportive services
VanderVeen GR
Whittington MD