1
40
7
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Dublin Core
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Title
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October 2023 List
Text
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October List 2023
URL Address
<a href="http://doi.org/10.3389/fped.2023.1167757" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fped.2023.1167757</a>
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Title
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A qualitative exploration of parental perspectives on quality of care for children with serious illnesses
Publisher
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Frontiers in Pediatrics
Date
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2023
Subject
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Child; child; article; human; caregiver; qualitative research; perception; palliative therapy; pediatrics; conceptual framework; health care quality; total quality management; Singapore; Only Child; health care organization; human tissue; semi structured interview; theoretical study; holistic care; grounded theory; worker; benchmarking
Creator
An entity primarily responsible for making the resource
Ang FJL; Chow CCT; Chong PH; Tan TSZ; Amin Z; Buang SNH; Finkelstein EA
Description
An account of the resource
Introduction: Being responsive to end-users is essential to good care. Limited in-depth exploration of parental perspectives on care received by children over the course of serious illness has hindered the development of process measures to evaluate quality of care. Our objective was to identify the key process indicators prioritized by parents in the care of seriously ill young children and develop a framework to guide assessment of quality of care. Method(s): This qualitative study followed Charmaz's Constructivist Grounded Theory. In-depth semi-structured interviews were conducted with parents of young children with serious illness in Singapore. Participants were sampled across various healthcare settings, children's ages, and illness categories. Theoretical sampling and constant comparative analysis were used to generate initial, focused, and theoretical codes, which informed construction of a conceptual framework. Result(s): 31 parents participated from July 2021 to February 2022. Initial and focused coding generated 64 quality of care indicators describing key care practices, interactions, and procedures. Indicators were categorized under four themes: (1) efficient healthcare structures and standards, (2) professional qualities of healthcare workers, 3. supporting parent-caregivers, and 4. collaborative and holistic care. Theoretical coding led to the development of the "PaRental perspectives on qualIty of care for Children with sErious iLlnESSes (PRICELESS)" framework which summarizes elements contributing to the parental perception of quality of care. Discussion(s): The identified process indicators will facilitate the development of standardised parent-reported measures for assessing service quality and benchmarking among providers. The framework provides overall guidance for conceiving quality improvement initiatives.Copyright 2023 Ang, Chow, Chong, Tan, Amin, Buang and Finkelstein.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3389/fped.2023.1167757" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1167757</a>
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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
Amin Z
Ang FJL
Article
Benchmarking
Buang SNH
Caregiver
Child
Chong PH
Chow CCT
Conceptual Framework
Finkelstein EA
Frontiers in Pediatrics
Grounded Theory
health care organization
Health Care Quality
Holistic Care
Human
Human Tissue
October List 2052
Only Child
Palliative Therapy
Pediatrics
Perception
Qualitative Research
Semi Structured Interview
Singapore
Tan TSZ
theoretical study
Total Quality Management
worker
-
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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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/10.1016/j.jpainsymman.2021.11.017" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.11.017</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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Education in Palliative and End-of-Life Care-Pediatrics: Curriculum use and dissemination
Publisher
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Journal of Pain and Symptom Management
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; education; survey; Pediatric; training; curriculum
Creator
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Postier AC; Wolfe J; Hauser J; Remke SS; Baker JN; Kolste A; Dussel V; Bernadá M; Widger K; Rapoport A; Drake R; Chong PH; Friedrichsdorf SJ
Description
An account of the resource
CONTEXT: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide. OBJECTIVES: Assessment of past EPEC-Pediatrics participants' ("Trainers") self-reported PPC knowledge, attitudes, and skills; use of the curriculum in teaching; and feedback about the program's utility and future direction. METHODS: 2011 - 2019 survey of EPEC-Pediatrics past conference participants, using descriptive and content analyses. RESULTS: 172/786 (22% response rate) EPEC-Pediatrics past participants from 59 countries across 6 continents completed the survey. Trainers, including Master Facilitators (MFs), used the curriculum mostly to teach interdisciplinary clinicians and reported improvement in teaching ability as well as in attitude, knowledge, and skills (AKS) in two core domains of PPC: communication and pain and symptom management. The most frequently taught modules were about multimodal management of distressing symptoms. Trainers suggested adding new content to the current curriculum and further expansion in low-medium income countries. Most (71%) reported improvements in the clinical care of children with serious illnesses at their own institutions. CONCLUSION: EPEC-Pediatrics is a successful curriculum and dissemination project that improves participants' self-reported teaching skills and AKS's in many PPC core domains. Participating clinicians not only taught and disseminated the curriculum content, they also reported improvement in the clinical care of children with serious illness.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2021.11.017" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.11.017</a>
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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
Baker JN
Bernadá M
Chong PH
Curriculum
Drake R
Dussel V
Education
February 2022 List
Friedrichsdorf SJ
Hauser J
Journal of Pain and Symptom Management
Kolste A
Palliative Care
Pediatric
Postier AC
Rapoport A
Remke SS
Survey
Training
Widger K
Wolfe J
-
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
September 2021 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
September 2021 List
URL Address
<a href="http://doi.org/10.1177/02692163211027700" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163211027700</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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A good death in the child with life shortening illness: A qualitative multiple-case study
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Child; terminal care; palliative care; death; delivery of health care; caregivers; qualitative research
Creator
An entity primarily responsible for making the resource
Chong PH; Walshe C; Hughes S
Description
An account of the resource
BACKGROUND: Understanding what makes a 'good death' in the child with life shortening illness is important, as it informs appropriate and effective end-of-life care. Above play, peer contact and opportunities for assent, prior literature review found meeting needs and managing control were critical. The influence of disease types, location of death and palliative care support remains unclear. AIM: Explore how a good death for children can occur in the real-world context and identify factors influencing it. DESIGN: A qualitative multiple-case study. The case was defined as family and professional caregivers of children who died, stratified across disease categories (cancer or non-cancer) and palliative care contact. Data collection included (1) interviews, (2) artefacts, (3) clinical notes. Framework Analysis facilitated in-depth within and cross-case analysis. SETTING/PARTICIPANTS: Singapore health-care context. Respondents included bereaved parents, health and social care providers from hospital, and a community palliative care service. RESULTS: Five cases were constituted, with eight parents and 14 professionals as respondents. Eight common themes were identified, sub-categorised under three domains and interpreted theoretically: (1) Antecedents: Letting go, Acknowledging the child, Closure (2) Determinants: Suffering, Control, Systems and processes (3) Attributes: Comfort, Dying not prolonged. These factors were consistent across all cases, regardless of individual diagnoses, place of care and palliative care access. CONCLUSIONS: Elements that universally influence a good death are revealed within an ecologically sound and holistic conceptual framework. The impact of attitudes among healthcare professionals, and service delivery at systems level highlighted in this study have immediate applications in practice and policy.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/02692163211027700" target="_blank" rel="noreferrer noopener">10.1177/02692163211027700</a>
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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
Caregivers
Child
Chong PH
Death
Delivery of Health Care
Hughes S
Palliative Care
Palliative Medicine
Qualitative Research
September 2021 List
Terminal Care
Walshe C
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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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September 2018 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
October 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0626" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0626</a>
Dublin Core
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Title
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Pharmacological Management of Symptoms in Children with Life-Limiting
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Asia; Death; Drug Therapy; Dyspnea; Geographic Locations; Health Personnel; Health Services Accessibility Evaluation; Hospice Care; Hospitals; Human; Nausea and Vomiting; Pacific Islands; Pain Diagnosis; Palliative Care; Pediatrics; Secretions; Terminally Ill Patients; Treatment Refusal
Creator
An entity primarily responsible for making the resource
Chong LA; Chong PH; Chee J
Description
An account of the resource
Background: The provision of pediatric palliative care in Asia Pacific varies between countries and availability of essential medications for symptoms at the end of life in this region is unclear. Objective: To determine medications available and used in the management of six symptoms at the end of life among pediatric palliative care practitioners in Asia Pacific. To identify alternative pharmacological strategies for these six symptoms if the oral route was no longer possible and injections are refused. Design and Setting: An online survey of all Asia Pacific Hospice Palliative Care Network (APHN) members was carried out to identify medications used for six symptoms (pain, dyspnea, excessive respiratory secretions, nausea/vomiting, restlessness, seizures) in dying children. Two scenarios were of interest: (1) hours to days before death and (2) when injectables were declined or refused. Results: There were 54 responses from 18 countries. Majority (63.0%) of respondents were hospital based. About half of all respondents were from specialist palliative care services and 55.6% were from high-income countries. All respondents had access to essential analgesics. Several perceived that there were no available drugs locally to treat the five other commonly encountered symptoms. There was a wide variation in preferred drugs for treating each symptom that went beyond differences in drug availability or formulations. Conclusion: Future studies are needed to explore barriers to medication access and possible knowledge gaps among service providers in the region, so that advocacy and education endeavors by the APHN may be optimized.
Identifier
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<a href="http://doi.org/10.1089/jpm.2017.0626" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0626</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
2018
Asia
Chee J
Chong LA
Chong PH
Death
Drug Therapy
Dyspnea
Geographic Locations
Health Personnel
Health Services Accessibility Evaluation
Hospice Care
Hospitals
Human
Journal of Palliative Medicine
Nausea And Vomiting
October 2018 List
Pacific Islands
Pain Diagnosis
Palliative Care
Pediatrics
Secretions
September 2018 List
Terminally Ill Patients
Treatment Refusal
-
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://www.haywardpublishing.co.uk/_year_search_revi%20ew.aspx?JID=4&Year=2014&Edition=504" target="_blank" rel="noreferrer">http://www.haywardpublishing.co.uk/_year_search_revi ew.aspx?JID=4&Year=2014&Edition=504</a>
Dublin Core
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Title
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What do physicians think about paediatric palliative care? A survey in Singapore
Publisher
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European Journal Of Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
survey
Creator
An entity primarily responsible for making the resource
Chong PH
Description
An account of the resource
While adult palliative care has been gaining wider acceptance, public and pr fessional awareness of the benefits of paediatric palliative care is still lacking. This significant concerns that could be barriers to early and appropriate referral.Poh Heng Chong has asked physicians working in the paediatric department of a Singaporean hospital how they feel about referring children to palliative care. His study reveals significant concerns that could be overcome by using a collaborative care model.
2014
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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
Backlog
Chong PH
European Journal Of Palliative Care
Journal Article
Survey
-
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 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1186/s12904-017-0267-z" target="_blank" rel="noreferrer">http://doi.org/10.1186/s12904-017-0267-z</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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Paediatric palliative care improves patient outcomes and reduces healthcare costs: evaluation of a home-based program
Publisher
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Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Caregiver Burden; Costs; effectiveness; Evaluation; Health-related quality of life; paediatrics; Palliative Care
Creator
An entity primarily responsible for making the resource
Chong PH; De Castro Molina JA; Teo K; Tan WS
Description
An account of the resource
BACKGROUND: Around the world, different models of paediatric palliative care have responded to the unique needs of children with life shortening conditions. However, research confirming their utility and impact is still lacking. This study compared patient-related outcomes and healthcare expenditures between those who received home-based paediatric palliative care and standard care. The quality of life and caregiver burden for patients receiving home-based paediatric palliative care were also tracked over the first year of enrolment to evaluate the service's longitudinal impact. METHOD: A structured impact and cost evaluation of Singapore-based HCA Hospice Care's Star PALS (Paediatric Advance Life Support) programme was conducted over a three-year period, employing both retrospective and prospective designs with two patient groups. RESULTS: Compared to the control group (n = 67), patients receiving home-based paediatric palliative care (n = 71) spent more time at home than in hospital in the last year of life by 52 days (OR = 52.30, 95% CI: 25.44-79.17) with at least two fewer hospital admissions (OR = 2.46, 95% CI: 0.43-4.48); and were five times more likely to have an advance care plan formulated (OR = 5.51, 95% CI: 1.55-19.67). Medical costs incurred by this group were also considerably lower (by up to 87%). Moreover, both patients' quality of life (in terms of pain and emotion), and caregiver burden showed improvement within the first year of enrolment into the programme. DISCUSSION: Our findings suggest that home-based paediatric palliative care brings improved resource utilization and cost-savings for both patients and healthcare providers. More importantly, the lives of patients and their caregivers have improved, with terminally ill children and their caregivers being able to spend more quality time at home at the final stretch of the disease. CONCLUSIONS: The benefits of a community paediatric palliative care programme have been validated. Study findings can become key drivers when engaging service commissioners or even policy makers in appropriate settings.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-017-0267-z" target="_blank" rel="noreferrer">10.1186/s12904-017-0267-z</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
BMC Palliative Care
Caregiver Burden
Chong PH
Costs
De Castro Molina JA
Effectiveness
Evaluation
Health-related quality of life
January 2018 List
Paediatrics
Palliative Care
Tan WS
Teo K
-
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 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
Paediatric Palliative Care In The Asia Pacific Region: Where Are We Now?
Publisher
An entity responsible for making the resource available
Bmj Supportive & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Asia Southeastern; Child; Child Health Services/standards/statistics & Numerical Data; Far East; Humans; Oceania; Paediatrics; Palliative Care/standards/statistics & Numerical Data; Service Evaluation; Supportive Care; Terminal Care
Creator
An entity primarily responsible for making the resource
Chong PH; Hamsah E; Goh C
Identifier
An unambiguous reference to the resource within a given context
10.1136/bmjspcare-2014-000812
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
April 2017 List
Asia Southeastern
BMJ Supportive & Palliative Care
Child
Child Health Services/standards/statistics & Numerical Data
Chong PH
Far East
Goh C
Hamsah E
Humans
Oceania
Paediatrics
Palliative Care/standards/statistics & Numerical Data
Service Evaluation
Supportive Care
Terminal Care