1
40
2
-
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
August 2018 List
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).
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
August 2018 List
URL Address
<a href="http://doi.org/10.1111/cch.12580" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/cch.12580</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
Mothers' perspectives of the experience and impact of caring for their child with a life-limiting neurodevelopmental disability
Publisher
An entity responsible for making the resource available
Child: Care, Health and Development
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
An entity primarily responsible for making the resource
Courtney E; Kiernan G; Guerin S; Ryan K; McQuillan R
Description
An account of the resource
BACKGROUND: This study explored mothers' perspectives of the experiences and impact on themselves and their family when their child has a life-limiting neurodevelopmental disability. METHODS: Twelve mothers were interviewed and topics included mothers' experiences of caring, the impact on themselves and their family of care provision, and the management of day-to-day life. Data were analysed using thematic analysis. RESULTS: Four themes were identified. "Starting Out" relates to mothers' experiences of the birth of their child and the aftermath. "Keeping the Show on the Road" describes the strategies families employ to manage life day to day and the resources they use. "Shouldering the Burden" describes the range of physical, psychological, and social consequences of the situation for mothers and the family. "The Bigger Picture" relates to the world outside the family and how this is navigated. CONCLUSIONS: Findings suggest mothers' overall experiences are characterized by a constant struggle, with evidence of negative impacts on family life, though there is also evidence of resilience and coping. Implications regarding the provision of services are discussed.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/cch.12580" target="_blank" rel="noreferrer noopener">10.1111/cch.12580</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
August 2018 List
Child: Care, Health and Development
Courtney E
Guerin S
Kiernan G
McQuillan R
Ryan K
-
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
December 2020 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
December 2020 List
URL Address
<a href="http://doi.org/10.1186/s12913-020-05754-w" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12913-020-05754-w</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
Integration of palliative care in services for children with life-limiting neurodevelopmental disabilities and their families: a Delphi study
Publisher
An entity responsible for making the resource available
BMC Health Services Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Children and families; Delphi study; Life-limiting neurodevelopmental disability; Services
Creator
An entity primarily responsible for making the resource
Guerin S; Kiernan G; Courtney E; McQuillan R; Ryan K
Description
An account of the resource
BACKGROUND: The aim of this study was to explore expert professionals' opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services. METHODS: A Delphi design was used with three questionnaire rounds, one open-ended and two closed response rounds. Primary data collected over a six-month period from expert professionals with five years' (or more) experience in pediatric, intellectual disability and/or palliative care settings. Ratings of agreement and prioritization were provided with agreement expressed as a median (threshold = 80%) and consensus reported as interquartile ranges. Stability was measured using non-parametric tests. RESULTS: Primary goals of care were achievement of best possible quality of life, effective communication and symptom management. Service integration and coordination were considered inadequate, and respondents agreed that areas of deficiency included palliative care. Improvement strategies included a single care plan, improved communication and key worker appointments. CONCLUSIONS: The findings suggest that services do not serve this group well with deficiencies in care compounded by a lack of information on available services and sub-optimal communication between settings. Further research is needed to develop an expert-based consensus regarding the care of children with LLNDD.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12913-020-05754-w" target="_blank" rel="noreferrer noopener">10.1186/s12913-020-05754-w</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).
2020
BMC Health Services Research
Children And Families
Courtney E
December 2020 List
Delphi Study
Guerin S
Kiernan G
Life-limiting neurodevelopmental disability
McQuillan R
Ryan K
Services