1
40
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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 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
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"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
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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
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<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
-
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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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
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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
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<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
-
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
October 2017 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
Quality Of Care Collaborative For Paediatric Palliative Care In Australia (quocca)
Publisher
An entity responsible for making the resource available
Pediatric Blood And Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Australia; Palliative Therapy; Anxiety; Child; Clinical Trial; Diagnosis; Dyspnea; Education; Family Study; Female; Human; Major Clinical Study; Male; Nausea; Nurse; Pain; Patient Referral; Questionnaire; Seizure; Staff; Symptom; Telehealth; Terminal Care
Creator
An entity primarily responsible for making the resource
Herbert A; Irving H; Pedersen LA; Baggio S; Delaney A; Donovan L; McLarty A; Duc J; Slater P; Johnson S; Trethewie S; Ryan S; Hynson J; Duffield J; Fleming S; Heywood M; Phillips M; Momber S; Burr C
Description
An account of the resource
Background: Geography and population distribution present challenges to the care of children with life-limiting conditions (LLC) within Australia. Children and young people have unique needs in relation to the provision of palliative care within Australia. Objectives: This project aims to improving the quality of care provided to children in close proximity to their home through educational initiatives. This is primarily delivered through "pop-up" education. 'Pop-up' education usually occurs (face-face or telehealth) when a specialist service is building capacity within a child and family's local community and creating a paediatric network. The education provided can be specific to symptom management, end of life care, physical aspects of patient care according to their individualised need and diagnosis and psychosocial needs. The setting is usually in a non-metropolitan location, and the education is provided in a timely manner in relation to the patient's needs. Design/Method: The project is a collaboration of the specialist paediatric palliative care services in each state of Australia. The project is being evaluated using pre and post intervention questionnaires completed by participants in the 'pop-up' educational initiatives. Evaluationwill consider factors such as knowledge, confidence and efficacy around providing care for children with LLC. Results: Forty-six "pop-up" education sessions had been delivered between June 2015 and November 2016. This has included each state and territory of Australia. There have been 507 participants in pop-up education sessions (92 hours of education). Nurses represented the largest group of attendees.Medical and allied health staff also attended demonstrating the need for education to applicable to an inter-disciplinary audience. To date there has been an improvement in the knowledge and confidence of participants to:* manage symptoms (pain, nausea, dyspnoea, seizures, and anxiety), * manage a new referral, * be aware of available resources* be confident in how to help a family prepare for a child's death* confidence in the provision of medications to children's receiving palliative care (including subcutaneous delivery). Conclusion: A collaboration of paediatric palliative care services providing education in a planned and co-ordinated way shows promise in increasing capacity for paediatric palliative care within Australia, and should assist achieving goals of the National Palliative Care Strategy 2010.
Identifier
An unambiguous reference to the resource within a given context
10.1002/pbc.26591
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).
2017
anxiety
Australia
Baggio S
Burr C
Child
Clinical Trial
Delaney A
Diagnosis
Donovan L
Duc J
Duffield J
Dyspnea
Education
Family Study
Female
Fleming S
Herbert A
Heywood M
Human
Hynson J
Irving H
Johnson S
Major Clinical Study
Male
McLarty A
Momber S
Nausea
Nurse
October 2017 List
Pain
Palliative Therapy
Patient Referral
Pedersen LA
Pediatric Blood and Cancer
Phillips M
Questionnaire
Ryan S
Seizure
Slater P
Staff
Symptom
Telehealth
Terminal Care
Trethewie S