1
40
3
-
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
February 2022 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
February 2022 List
URL Address
<a href="http://doi.org/10.1111/jpc.15851" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jpc.15851</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
Enhancing paediatric palliative care: A rapid review to inform continued development of care for children with life-limiting conditions
Publisher
An entity responsible for making the resource available
Journal of Paediatrics and Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
palliative care; paediatrics; delivery of health care; quality of health care; health policy; health services accessibility
Creator
An entity primarily responsible for making the resource
Ekberg S; Bowers A; Bradford N; Ekberg K; Rolfe M; Elvidge N; Cook R; Roberts SJ; Howard C; Agar M; Deleuil R; Fleming S; Hynson J; Jolly A; Heywood M; Waring S; Rice T; Vickery A
Description
An account of the resource
AIM: Following the establishment of paediatric palliative care services over recent decades, this study sought to identify information to inform future policy and practice. METHODS: A rapid review using thematic synthesis was conducted to synthesise existing information about improving paediatric palliative care. Information was extracted in relation to key areas for investment and change: quality, access, advance care planning, skills, research, collaboration and community awareness. RESULTS: A total of 2228 literature sources were screened, with 369 included. Synthesised information identified clear ways to improve quality of care, access to care, advance care planning, and research and data collection. The synthesis identified knowledge gaps in understanding how to improve skills in paediatric palliative care, collaboration across Australian jurisdictions and community awareness. CONCLUSIONS: The findings of this review bring together information from a vast range of sources to provide action-oriented information to target investment and change in paediatric palliative care over the coming decades.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jpc.15851" target="_blank" rel="noreferrer noopener">10.1111/jpc.15851</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).
2021
Agar M
Bowers A
Bradford N
Cook R
Deleuil R
Delivery of Health Care
Ekberg K
Ekberg S
Elvidge N
February 2022 List
Fleming S
Health Policy
Health Services Accessibility
Heywood M
Howard C
Hynson J
Jolly A
Journal of Paediatrics and Child Health
Paediatrics
Palliative Care
Quality Of Health Care
Rice T
Roberts SJ
Rolfe M
Vickery A
Waring S
-
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
Special Edition #2 2022 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
Special Edition #2
URL Address
<a href="http://doi.org/10.1177/2632352420958000" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/2632352420958000</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
The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups
Publisher
An entity responsible for making the resource available
Palliative Care and Social Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
cancer; children; health professionals; life-limiting illness; paediatric palliative care; parents; support needs
Creator
An entity primarily responsible for making the resource
Aoun SM; Gill FJ; Phillips MB; Momber S; Cuddeford L; Deleuil R; Stegmann R; Howting D; Lyon ME
Description
An account of the resource
BACKGROUND: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. OBJECTIVES: Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing parents' needs caring for cancer and non-cancer conditions. Carer well-being outcomes were also tested. METHODS: A non-randomised prospective intervention pilot study. Twenty-eight parents (out of 42 approached) and 5 health professionals working in paediatric palliative care services in Western Australia (2018-2019) completed the pilot study. RESULTS: Two-thirds of eligible parents completed the study. The highest support needs included having time for yourself; practical help in the home; knowing what to expect in the future; financial, legal or work issues; and knowing who to contact if you are concerned. Almost all needs were considerably more pronounced for the non-cancer group. The pCSNAT seemed feasible and outcomes demonstrated a tendency to improve. CONCLUSION: Using the pCSNAT provided a concise and comprehensive 'one stop shop' for health professionals to evaluate difficulties encountered by parents. The disadvantages reported by the non-cancer group warrant increased attention. Paediatric palliative care should adopt routine assessment of parents' support needs to anticipate early and tailored supports including partnerships with the community.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/2632352420958000" target="_blank" rel="noreferrer noopener">10.1177/2632352420958000</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
2022 Special Edition 2 - Parent Perspectives
Aoun SM
Cancer
Children
Cuddeford L
Deleuil R
Gill FJ
health professionals
Howting D
life-limiting illness
Lyon ME
Momber S
paediatric palliative care
Palliative Care and Social Practice
Parents
Phillips MB
Stegmann R
support needs
-
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
July 2023 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
July List 2023
URL Address
<a href="http://doi.org/10.3390/children9030322" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9030322</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
"It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care
Publisher
An entity responsible for making the resource available
Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
caregiver support; palliative therapy; parent; pediatric patient; adult; article; Australia; clinical monitoring; controlled study; emotion; emotional support; empowerment; family support; feasibility study; female; hospice care; human; male; Palliative Care; psychosocial care; public health; qualitative research; terminal care; tertiary care center; thematic analysis; volunteer
Creator
An entity primarily responsible for making the resource
Aoun SM; Stegmann R; Deleuil R; Momber S; Cuddeford L; Phillips MB; Lyon ME; Gill FJ
Description
An account of the resource
Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Method(s): The CSNAT (Paediatric) intervention consisted of two assessment visits with the paediatric palliative care team, 2-8 weeks apart, comprising conversations about sources for support in a tertiary children hospital in Western Australia (2018-2019). Audio-recorded telephone interviews were conducted with parents, and inductive thematic analysis was undertaken. Result(s): All 28 parents who were involved in the intervention agreed to be interviewed. Five themes summarised their experience: caregiving challenges, perceived gaps and feelings of isolation; the usefulness and practicality of the systematic assessment; emotional responses to self-reflection; feelings of validation and empowerment; and received supports responsive to their needs. Conclusion(s): Parents appreciated the value of this systematic approach in engaging them in conversations about their needs and solutions to address them. While clinical service support was affirmed by parents, they were left wanting in other areas of practical, psychosocial, and emotional support. Palliative care services need to build stronger partnerships with supportive community networks through compassionate communities volunteer models of care to address the non-clinical needs of these families.Copyright © 2022 by the authors. Licensee MDPI, Basel, Switzerland.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3390/children9030322" target="_blank" rel="noreferrer noopener">10.3390/children9030322</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).
2022
Adult
Aoun SM
Article
Australia
Caregiver Support
Children
clinical monitoring
Controlled Study
Cuddeford L
Deleuil R
Emotion
emotional support
empowerment
family support
Feasibility Study
Female
Gill FJ
Hospice Care
Human
July List 2023
Lyon ME
Male
Momber S
Palliative Care
Palliative Therapy
Parent
pediatric patient
Phillips MB
psychosocial care
Public Health
Qualitative Research
Stegmann R
Terminal Care
tertiary care center
Thematic Analysis
Volunteer