1
40
6
-
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
January 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
January List 2023
URL Address
<a href="http://doi.org/10.1542/peds.2022-058241" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2022-058241</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
Development of Primary Palliative Care End-of-Life Quality Measures: A Modified Delphi Process
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Delphi Study; Quality Measures
Creator
An entity primarily responsible for making the resource
Bogetz JF; Johnston EE; Thienprayoon R; Patneaude A; Ananth P; Rosenberg AR; Workgroup Cambia Advisory
Description
An account of the resource
Children with complex chronic conditions (CCCs) and their families deserve high-quality pediatric palliative care (PPC) throughout their illness trajectory, including at end of life (EOL). Standard EOL quality measures (QM) have only recently been proposed, require surveys and/or manual chart review, and focus on children with cancer. Therefore, we aimed to develop expert-endorsed, hospital-based, primary PPC quality measures for EOL care for all children with CCCs that could be automatically abstracted from the electronic health record (EHR).We followed a modified Delphi approach for expert opinion gathering, including: (1) a comprehensive literature review of existing adult and pediatric measures (\textgreater200 measures); (2) formation of a multidisciplinary expert panel (n = 9); (3) development of a list of candidate measures (20 measures); (4) national survey to assess each QM’s importance and abstraction feasibility and propose new measures (respondents = 95); and (5) final expert panel endorsement.Seventeen EHR-abstractable QM were endorsed in 5 domains: (1) health care utilization: 4 measures (eg, \textless2 emergency department visits in the last 30 days of life); (2) interprofessional services: 4 measures (eg, PPC in the last 30 days of life); (3) medical intensity: 5 measures (eg, death outside the ICU); (4) symptom management: 2 measures (eg, documented pain score within 24 hours of admission); and (5) communication: 2 measures (eg, code status documentation).This study developed a list of EHR-abstractable, hospital-based primary PPC EOL QM, providing a foundation for quality improvement initiatives and further measure development in the future.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2022-058241" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-058241</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
Ananth P
Bogetz JF
Delphi Study
January List 2023
Johnston EE
Patneaude A
Pediatrics
quality measures
Rosenberg AR
Thienprayoon R
Workgroup Cambia Advisory
-
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
-
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 2017 List
URL Address
<a href="http://www.magonlinelibrary.com/doi/10.12968/ijpn.2017.23.2.88" target="_blank" rel="noreferrer">http://www.magonlinelibrary.com/doi/10.12968/ijpn.2017.23.2.88</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
Prioritisation of future research topics in paediatric palliative care in Ireland: a Delphi study
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
2017
Subject
The topic of the resource
Palliative Care; Pediatrics; Research; Children; Databases Factual; Delphi Study; Delphi Technique; Health Services Needs And Demand; Hospice Care; Humans; Ireland; Life-limiting Conditions; Parents; Quality Of Life; Research Priorities; Siblings; Terminal Care
Creator
An entity primarily responsible for making the resource
Quinn C; McCarthy S; Devins M; O'Reilly M; Twomey M; Ling J
Description
An account of the resource
This paper reports the findings from a Delphi Study undertaken to identify the research priorities in children's palliative care in Ireland. Palliative care for children is a small and highly specialised field of healthcare that focuses on improving the quality of life of children living with, or dying from, a life-limiting condition. Ideally, support for children requiring palliative care begins at the time of diagnosis, which for many children with life-limiting conditions can be from birth. There is a notable overlap between the needs of children requiring palliative care and those with disabilities and other complex care needs, resulting in care being provided by a range of voluntary and statutory agencies. As a new specialty, there is a need to develop an evidence-based approach to providing children's palliative care. In order to do this in a systematic way, identification of the research priorities in children's palliative care within Ireland is required.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.12968/ijpn.2017.23.2.88" target="_blank" rel="noreferrer">10.12968/ijpn.2017.23.2.88</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).
2017
August 2017 List
Children
Databases Factual
Delphi Study
Delphi Technique
Devins M
Health Services Needs And Demand
Hospice Care
Humans
International Journal of Palliative Nursing
Ireland
Life-limiting Conditions
Ling J
McCarthy S
O'Reilly M
Palliative Care
Parents
Pediatrics
Quality Of Life
Quinn C
Research
Research Priorities
Siblings
Terminal Care
Twomey M
-
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 2019 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 2019 List
URL Address
<a href="http://doi.org/10.1111/jspn.12226" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1111/jspn.12226</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
Supporting parental caregivers of children living with life-threatening or life-limiting illnesses: A Delphi study
Publisher
An entity responsible for making the resource available
Journal for specialists in pediatric nursing : JSPN
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
feasibility study; major clinical study; nurse; social worker; basic needs; caregiver; human experiment; physician; pediatrics; human; article; child; female; male; diagnosis; self care; consensus; theoretical study; Delphi study; family nursing
Creator
An entity primarily responsible for making the resource
Smith NR; Bally JMG; Holtslander L; Peacock S; Spurr S; Hodgson-Viden H; Mpofu C; Zimmer M
Description
An account of the resource
BACKGROUND: The impact of a child s life-limiting or life-threatening illness is significant on parents who experience a great deal of emotional, physical, and spiritual upheaval. Hope has been identified as an important inner resource for parental caregivers. Specifically, parental hope has been described as having four subproceses including Accepting Reality, Establishing Control, Restructuring Hope, and Purposive Positive Thinking. PURPOSE: The purpose of this Delphi study was to gather expert opinions from parents and formal care providers about the four subproceses essential to parental hope, to increase understanding of parental caregivers current support needs. As Phase one of a three-phase study, the findings provided direction in the development of a theory-based hope intervention. DESIGN AND METHODS: A Delphi study consisting of three rounds of survey questions and controlled feedback to experts was employed. Experts suggested strategies for each subprocess and ranked them in order of highest to lowest according to feasibility and effectiveness.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jspn.12226" target="_blank" rel="noreferrer noopener">10.1111/jspn.12226</a>
2018
Article
Bally JMG
Basic Needs
Caregiver
Child
Consensus
Delphi Study
Diagnosis
Family Nursing
Feasibility Study
February 2019 List
Female
Hodgson-Viden H
Holtslander L
Human
Human Experiment
Journal for specialists in pediatric nursing : JSPN
Major Clinical Study
Male
Mpofu C
Nurse
Peacock S
Pediatrics
Physician
Self Care
Smith NR
Social Worker
Spurr S
theoretical study
Zimmer M
-
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
March 2024 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
March List 2024
URL Address
<a href="http://doi.org/10.57187/s.3498" target="_blank" rel="noreferrer noopener"> http://doi.org/10.57187/s.3498</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 funding of specialised paediatric palliative care in Switzerland: a conceptualisation and modified Delphi study on obstacles and priorities
Publisher
An entity responsible for making the resource available
Swiss Medical Weekly
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Delphi study; funding; modified Delphi study; palliative therapy; pediatrics; Switzerland; adult; aged; article; clinical practice; consensus development; Delphi Technique; evidence based medicine; female; health care cost; health care delivery; health service; human; male; Palliative Care; practice guideline; program effectiveness; program sustainability; reimbursement; Switzerland
Creator
An entity primarily responsible for making the resource
Mitterer S; Zimmermanna K; Fink G; Simon M; Gerber AK; Bergstrasser E
Description
An account of the resource
BACKGROUND: Effective funding models are key for implementing and sustaining critical care delivery programmes such as specialised paediatric palliative care (SPPC). In Switzerland, funding concerns have frequently been raised as primary barriers to providing SPPC in dedicated settings. However, systematic evidence on existing models of funding as well as primary challenges faced by stakeholders remains scarce. AIMS: The present study’s first aim was to investigate and conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. Its second aim was to identify obstacles to and priorities for funding these programmes sustainably. METHODS: A 4-step process, including a document analysis, was used to conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. In consultation with a purposefully selected panel of experts in the subject, a 3-round modified Delphi study was conducted to identify funding-relevant obstacles and priorities regarding SPPC. RESULTS: Current funding of hospital-based consultative specialised paediatric palliative care programmes is complex and fragmented, combining funding from public, private and charitable sources. Overall, 21 experts participated in the first round of the modified Delphi study, 19 in round two and 15 in round three. They identified 23 obstacles and 29 priorities. Consensus (>70%) was obtained for 12 obstacles and 22 priorities. The highest level of consensus (>90%) was achieved for three priorities: the development of financing solutions to ensure long-term funding of SPPC programmes; the provision of funding and support for integrated palliative care; and sufficient reimbursement of inpatient service costs in the context of high-deficit palliative care patients. CONCLUSION: Decision- and policy-makers hoping to further develop and expand SPPC in Switzerland should be aware that current funding models are highly complex and that SPPC funding is impeded by many obstacles. Considering the steadily rising prevalence of children with life-limiting conditions and the proven benefits of SPPC, improvements in funding models are urgently needed to ensure that the needs of this highly vulnerable population are adequately met.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.57187/s.3498" target="_blank" rel="noreferrer noopener">10.57187/s.3498</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).
2023
Adult
Aged
Article
Bergstrasser E
Clinical Practice
Consensus Development
Delphi Study
Delphi Technique
evidence based medicine
Female
Fink G
Funding
Gerber AK
Health Care Cost
Health Care Delivery
Health Service
Human
Male
March List 2024
Mitterer S
modified Delphi study
Palliative Care
Palliative Therapy
Pediatrics
Practice Guideline
program effectiveness
Program Sustainability
Reimbursement
Simon M
Swiss Medical Weekly
Switzerland
Zimmermanna 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
February 2024 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 List 2024
URL Address
<a href="http://doi.org/10.1186/s12904-023-01326-x" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01326-x</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 NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care
Publisher
An entity responsible for making the resource available
BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; adult; article; controlled study; human; male; newborn; palliative therapy; newborn death; perinatal death; terminal care; total quality management; systematic review; interview; newborn intensive care; health care personnel; therapy; Delphi study
Creator
An entity primarily responsible for making the resource
Gallagher K; Chant K; Mancini A; Bluebond-Langner M; Marlow N
Description
An account of the resource
Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals, parents may make the decision to stop active treatment and focus on ensuring their baby has a 'good' death. There is very little evidence to support the clinical application of neonatal palliative care and/or end-of-life care, resulting in variation in clinical provision between neonatal units. Developing core outcomes for neonatal palliative care would enable the development of measures of good practice and enhance our care of families. The aim of this study is to develop a core outcome set with associated tools for measuring neonatal palliative care. Method: This study has four phases: (1) identification of potential outcomes through systematic review and qualitative interviews with key stakeholders, including parents and healthcare professionals (2) an online Delphi process with key stakeholders to determine core outcomes (3) identification of outcome measures to support clinical application of outcome use (4) dissemination of the core outcome set for use across neonatal units in the UK. Key stakeholders include parents, healthcare professionals, and researchers with a background in neonatal palliative care. Discussion: Developing a core outcome set will standardise minimum reported outcomes for future research and quality improvement projects designed to determine the effectiveness of interventions and clinical care during neonatal palliative and/or end-of-life care. The core outcome set will provide healthcare professionals working in neonatal palliative and/or end-of-life support with an increased and consistent evidence base to enhance practice in this area. Trial registration: The study has been registered with the COMET initiative ( https://www.comet-initiative.org/Studies/Details/1470 ) and the systematic review is registered with the International Prospective Register of Systematic Reviews (PROSPERO) (CRD42023451068).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-023-01326-x" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01326-x</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).
2023
Adult
Article
Bluebond-Langner M
BMC Palliative Care
Chant K
Child
Controlled Study
Delphi Study
February List 2024
Gallagher K
Health Care Personnel
Human
Interview
Male
Mancini A
Marlow N
Newborn
Newborn Death
Newborn Intensive Care
Palliative Therapy
Perinatal Death
Systematic Review
Terminal Care
Therapy
Total Quality Management