1
40
5
-
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
May 2016 List
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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The Development And Evaluation Of A Holistic Needs Assessment Within Children’s Palliative Care.
Publisher
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International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Child; Holistic Nursing; Humans; Needs Assessment; Palliative Care; Pilot Projects
Assessment; Holistic; Pediatrics; Palliative; Qualitative
Creator
An entity primarily responsible for making the resource
Hartley G; Berger Z; Maynard L
Description
An account of the resource
Caring for a child with a life-limiting condition brings a number of challenges and many families require additional support. The need for services to move away from a 'one size fits all' approach to a personalised care planning approach is well recognised, as is the value of establishing a robust way of assessing family members' differing needs. A number of assessment tools that consider individuals' holistic needs already exist. These are predominantly for the adult cancer population and exclude consideration of the child in its system. There was therefore a need to develop a tool that would appropriately meet the needs of children and parents who access services provided by a children's hospice. The tool was evaluated qualitatively. Feedback was positive; the experience of professionals was one of concordance with their ethical stance, improved communication, improved documentation and the wish to embed the tool into daily practice.
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).
2016
Assessment
Berger Z
Child
Hartley G
Holistic
Holistic Nursing
Humans
International Journal of Palliative Nursing
May 2016 List
Maynard L
Needs Assessment
Palliative
Palliative Care
Pediatrics
Pilot Projects
Qualitative
-
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
Backlog
URL Address
<a href="http://doi.org/10.1136/archdischild-2014-307384.527" target="_blank" rel="noreferrer">http://doi.org/10.1136/archdischild-2014-307384.527</a>
<a href="http://adc.bmj.com/content/99/Suppl_2/A196.1" target="_blank" rel="noreferrer">http://adc.bmj.com/content/99/Suppl_2/A196.1</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
PS-228 The Babies Who Unexpectedly Survive Long-term After Withdrawal Of Neonatal Intensive Care
Publisher
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Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
An entity primarily responsible for making the resource
Jones J; Job S; Pal S; Maynard L; Curley A; Clarke P
Description
An account of the resource
Background and aim Not all babies from whom neonatal intensive care (IC) is withdrawn die swiftly. We reviewed cases, characteristics, and outcomes of babies who unexpectedly survived for ≥1 week following IC withdrawal. Methods Retrospective review of the medical notes of infants cared for in our NICUs in the period 1/7/06 to 31/12/13 who had IC withdrawn but who unexpectedly survived for ≥1 week. Babies with trisomies were excluded. Our study had prior research ethics approval. Results We identified 9 long-term survivors (6 term, 3 preterm). 8 had a main diagnosis of grade 3 hypoxic ischaemic encephalopathy; 1 preterm infant had a diagnosis of myelomeningocele and hydrocephalus. All had abnormal neuroimaging prior to planned IC withdrawal. IC was withdrawn with parental agreement at median 5 days postnatal age (range: 1–9 days). The possibility of long-term survival had been broached by clinicians prior to IC withdrawal in only 2 of the 9 cases. Median age at discharge/transfer from NICU was 10 days (range: 1–31 days) and destination was home (n = 3) or hospice (n = 6). 4 infants died at ages ranging between 19–66 days. Yet remarkably, 5 infants remain alive to date with current ages ranging between 10 months and 5.3 years, but all have cerebral palsy. Conclusion Unexpected long-term survival after neonatal IC withdrawal is neither predictable nor uncommon. Significant disability in survivors is invariable. Even if protracted survival is considered very unlikely, the possibility should always be specifically mentioned during the sensitive discussions with parents that precede IC withdrawal.
2014-10
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2014-307384.527" target="_blank" rel="noreferrer">10.1136/archdischild-2014-307384.527</a>
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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).
Type
The nature or genre of the resource
Journal Article
2014
Archives of Disease in Childhood
Backlog
Clarke P
Curley A
Job S
Jones J
Journal Article
Maynard L
Pal 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
April 2016 List
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
Development Of A Logic Model To Support A Network Approach In Delivering 24/7 Children’s Palliative Care: Part One.
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Research; Palliative Care/organization & Administration
24/7; Children's Palliative Care; End Of Life; Funding Palliative Care; Logic Model; Out Of Hours; Symptom Management
Creator
An entity primarily responsible for making the resource
Maynard L; Lynn D
Description
An account of the resource
BACKGROUND:
This is the second of a two-part article that discusses a research project that aimed to develop and evaluate a 24/7 symptom-management service for children with palliative care needs and a nursing logic model to enable a novel service approach to be generalised and replicated.
RESULTS:
Findings demonstrated that the service standards were met and exceeded expectations. Families valued the role, which enabled choice in location of care and perceived the service as a 'lifeline'.
DISCUSSION:
Team composition with the right level of specialist and advanced nursing skills, anticipating symptom-management planning, clinical supervision and funded on-call processes were key success criteria. The nursing logic model demonstrated relationships between context investments into the service and outcomes for children and families.
Identifier
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DOI: 10.12968/ijpn.2016.22.6.278
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).
2016
24/7
April 2016 List
Children's Palliative Care
End Of Life
Funding Palliative Care
International Journal of Palliative Nursing
Logic Model
Lynn D
Maynard L
Out Of Hours
Palliative Care/organization & Administration
Research
Symptom Management
-
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
Backlog
URL Address
<a href="http://doi.org/10.7748/ncyp.26.6.27.e445" target="_blank" rel="noreferrer">http://doi.org/10.7748/ncyp.26.6.27.e445</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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Innovative approach to providing 24/7 palliative care for children
Publisher
An entity responsible for making the resource available
Nursing Children And Young People
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
end-of-life care; 24/7; Children’s hospice; paediatric symptom management
Creator
An entity primarily responsible for making the resource
Maynard L; Lynn D
Description
An account of the resource
This study outlines an innovative, English hospice-based service that provides 24/7 care for children with life-limiting conditions and their families. Operational objectives were: symptom management; open access to families and professionals; choice in place of care and of death; and collaboration to develop shared pathways and management plans. Service standards were audited through questionnaires completed by professionals and families. Findings demonstrated that the nursing team filled a critical gap and met its pre-set standards. Keys to success were: having the right level and mix of specialist and advanced skills; funded on-call arrangements; anticipatory planning; symptom management plans; and clinical supervision. Further recommendations were to develop a multi-agency workforce strategy, and to increase capacity in the children's sector to undertake academic research measuring the impacts of interventions.
2014-07
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7748/ncyp.26.6.27.e445" target="_blank" rel="noreferrer">10.7748/ncyp.26.6.27.e445</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).
Type
The nature or genre of the resource
Journal Article
2014
24/7
Backlog
Children’s hospice
End-of-life Care
Journal Article
Lynn D
Maynard L
Nursing Children and Young People
paediatric symptom management
-
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
Backlog
URL Address
<a href="http://doi.org/10.12968/ijpn.2005.11.12.20228" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2005.11.12.20228</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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Seeking and using families' views to shape children's hospice services
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Great Britain; Adult; Parents; Professional-Family Relations; Focus Groups; Needs Assessment; Consumer Satisfaction; adolescent; Preschool; infant; Newborn; Health Care; Quality Assurance; Child Health Services/organization & administration; Hospice Care/organization & administration
Creator
An entity primarily responsible for making the resource
Maynard L; Rennie T; Shirtliffe J; Vickers D
Description
An account of the resource
Child and family involvement is key to improving the quality of children's hospice services. This article reports on a quality assurance initiative undertaken as one component of a clinical governance strategy. Service users participated in focus groups followed by lunch to discuss how staff communicated with them about their child's care, their family support needs, and how staff liaised with other professionals and organizations. There was general commendation of hospice services (in-house and community), but parents wished for more quantity and consistency with all elements of the care model. There was tension between respite and end-of-life care needs. Parents considered that the myth of hospices being 'just for death' needed dispelling and wanted other professionals to be more aware of its role, and the choice of earlier referral. Transition, both age and prognosis related, caused concern, with anxiety about long-term future or loss of support when prognosis improved. Parents also wanted better information about practical help and psycho-social support as well as up-to-date information about their child's treatment and management from all care providers.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2005.11.12.20228" target="_blank" rel="noreferrer">10.12968/ijpn.2005.11.12.20228</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).
Type
The nature or genre of the resource
Journal Article
2005
Adolescent
Adult
Backlog
Child
Child Health Services/organization & administration
Consumer Satisfaction
Female
Focus Groups
Great Britain
Health Care
Hospice Care/organization & administration
Humans
Infant
International Journal of Palliative Nursing
Journal Article
Male
Maynard L
Needs Assessment
Newborn
Parents
Preschool
Professional-family Relations
Quality Assurance
Rennie T
Shirtliffe J
Vickers D