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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
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July 2019 List
Text
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Citation List Month
July 2019 List
URL Address
<a href="http://doi.org/10.1080/02739615.2019.1605608" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1080/02739615.2019.1605608</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
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Parents' experiences of services for their child with a life-limiting neurodevelopmental disability
Publisher
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Children's Health Care.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; child; female; human; major clinical study; male; staff; funding; interview; nervous system malformation; quantitative analysis
Creator
An entity primarily responsible for making the resource
Kiernan G; Courtney E; Ryan K; McQuillan R; Guerin S
Description
An account of the resource
This study explored parents' experiences of services for children with life-limiting neurodevelopmental disabilities (LLNDD) using mixed methods. The study included a quantitative survey (n = 63) and qualitative interviews (n = 12), with a focus on integrating the findings to identify higher-level insights. Results suggest parents' experiences are mixed, showing more negative than positive experiences. Access to services was described as problematic, with obstacles including funding and geographical inequities. Helpful aspects included staff attitudes and relationships and, to a lesser extent, coordinated care. Unhelpful aspects included inconsistencies in the provision of services. The findings suggest some implications for service provision, including the need for a more family-centered approach. Copyright © 2019, © 2019 Taylor & Francis Group, LLC.
Identifier
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<a href="http://doi.org/10.1080/02739615.2019.1605608" target="_blank" rel="noreferrer noopener">10.1080/02739615.2019.1605608</a>
2019
Article
Child
Children's Health Care.
Courtney E
Female
Funding
Guerin S
Human
Interview
July 2019 List
Kiernan G
Major Clinical Study
Male
McQuillan R
nervous system malformation
quantitative analysis
Ryan K
Staff