1
40
17
-
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Title
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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.
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March List 2024
URL Address
<a href="http://doi.org/10.1186/s12913-023-10495-7" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12913-023-10495-7</a>
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The needs of healthcare personnel who provide home-based pediatric palliative care: a mixed method systematic review
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BMC Health Services Research
Date
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2024
Subject
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palliative therapy; physician; child; health care delivery; health care personnel; human; organization; Palliative Care
Creator
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Schroder J; Riiser K; Holmen H
Description
An account of the resource
Background: Families with children who have life-limiting or life-threatening illnesses often prefer to receive care at home to maintain a sense of normalcy. However, caring for children at home is different from caring for them in a hospital, and we do not know enough about the needs of healthcare personnel who provide home-based pediatric palliative care. Aim: The aim of this review was to systematically summarize, appraise and synthesize available quantitative, qualitative, and mixed methods research to identify the needs of healthcare personnel in home-based pediatric palliative care. Methods: We used the Joanna Briggs Institute methodology for mixed method systematic reviews and searched systematically in Medline, Embase, PsycINFO, CINAHL, Web of Science, AMED, and the Cochrane Library. Quantitative, qualitative and mixed methods studies from 2012 to 2021 reporting on healthcare personnel's needs, experiences, perspectives, coping strategies, and/or challenges related to home-based pediatric palliative care were eligible for inclusion. The screening was conducted independently in pairs. The quantitative data were transformed into qualitative data and analyzed using thematic synthesis. Results: Overall, 9285 citations were identified, and 21 studies were eligible for review. Most of the studies were qualitative and interview-based. Few studies included healthcare personnel other than doctors and nurses. Three analytical themes were developed: (1) being connected and engaged with the child and family, (2) being part of a dedicated team, and (3) ensuring the quality of home-based pediatric palliative care services. Healthcare personnel strived to deliver high-quality, home-based pediatric palliative care. Establishing a relationship with the child and their parents, collaborating within a committed team, and having sufficient resources were identified as important needs influencing healthcare personnel when providing home-based pediatric palliative care. Conclusion: The findings underscore the importance of building trusting relationships among healthcare personnel, children, and families. It also emphasizes the significance of interdisciplinary collaboration that is effective, along with the presence of enough skilled personnel to ensure high-quality home-based pediatric palliative care. Further research is necessary to include healthcare personnel beyond doctors and nurses, as palliative care requires a team of professionals from various disciplines. Addressing the needs of healthcare personnel can ensure safe and professional palliative care for children at home.
Identifier
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<a href="http://doi.org/10.1186/s12913-023-10495-7" target="_blank" rel="noreferrer noopener">10.1186/s12913-023-10495-7</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).
2024
BMC Health Services Research
Child
Health Care Delivery
Health Care Personnel
Holmen H
Human
March List 2024
Organization
Palliative Care
Palliative Therapy
Physician
Riiser K
Schroder J
-
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Title
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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>
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The funding of specialised paediatric palliative care in Switzerland: a conceptualisation and modified Delphi study on obstacles and priorities
Publisher
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Swiss Medical Weekly
Date
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2023
Subject
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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
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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
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<a href="http://doi.org/10.57187/s.3498" target="_blank" rel="noreferrer noopener">10.57187/s.3498</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
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
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.30663" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30663</a>
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Title
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Consultation patterns before and after embedding pediatric palliative care into a pediatric hematology/oncology clinic
Publisher
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Pediatric Blood and Cancer
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; Palliative Care; article; controlled study; female; human; male; retrospective study; outpatient; palliative therapy; Referral and Consultation; Hematology; clinical article; consultation; medical record review; solid tumor; rank sum test; hematology; cancer model; health care delivery; embedding
Creator
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Greenmyer JR; Ngo T; Smith M; Collura C; Schiltz B; McCarthy SR
Description
An account of the resource
Introduction: Palliative care is a critical component of pediatric oncology care. Embedded pediatric palliative care (PPC) is relatively new in pediatric hematology/oncology (PHO) and may improve access, utilization, and quality of PPC. In June 2020, the Mayo Clinic PPC service transitioned from an afternoon, physically independent clinic to an all-day clinic embedded within PHO. Method(s): Retrospective chart review was used to quantify consultation rates from PHO to PPC in 12-month study periods before and after establishment of an embedded clinic. Changes in descriptive statistics and consult patterns were calculated. Study periods were compared using either chi-square or Fisher's exact tests for categorical variables and Wilcox rank sum tests for continuous variables. Result(s): There was an 89% increase in consultations from PHO to PPC after initiation of an embedded clinic (n = 20 vs. n = 38 per 12 months). The absolute number of completed outpatient consults increased from three (15% of visits) pre-embedment to fourteen (37%) post-embedment (p =.082). The median number of days from first oncology visit to PPC assessment was unchanged after embedment (36 vs. 47 days, p =.98). Consults for solid tumors increased from 22% (n = 4) pre-embedment to 60% (n = 18) post-embedment (p <.05). Consults for symptom management increased from 60% (n = 12) to 87% (n = 33) (p <.05). Conclusion(s): Embedment of PPC into a PHO workspace was associated with an increased number of total consults, outpatient consults, solid tumor consults, and consults for symptom management. Our "partial-PPO" model allowed for provision of PPC in the outpatient oncology setting in a clinic where there is not enough volume to support a full-time oncology-focused clinician team.Copyright © 2023 Wiley Periodicals LLC.
Identifier
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<a href="http://doi.org/10.1002/pbc.30663" target="_blank" rel="noreferrer noopener">10.1002/pbc.30663</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
2023 SE3 - Oncology
Article
cancer model
Child
Clinical Article
Collura C
Consultation
Controlled Study
embedding
Female
Greenmyer JR
Health Care Delivery
Hematology
Human
Male
McCarthy SR
Medical Record Review
Ngo T
Outpatient
Palliative Care
Palliative Therapy
Pediatric Blood and Cancer
rank sum test
Referral And Consultation
Retrospective Study
Schiltz B
Smith M
solid tumor
-
Dublin Core
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Title
A name given to the resource
March 2023 List
Rights
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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).
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 2023
URL Address
<a href="http://doi.org/10.1136/spcare-2022-HUNC.5" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2022-HUNC.5</a>
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Title
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“It’s brilliant! It’s working! It’s needed!” A Hospice Short Break Innovation for Young Adults
Publisher
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BMJ Supportive and Palliative Care
Date
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2022
Subject
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Hospice; Adult; Child; clinical article; conference abstract; drug withdrawal; Female; health care delivery; Hospice; Human; human experiment; interview; learning; Male; outcome assessment; Palliative Therapy; positive feedback; questionnaire; sibling; trust; young adult
Creator
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Finlinson H; Spathis A
Description
An account of the resource
Background More young adults with life-limiting conditions are surviving into adulthood needing adult palliative care (Gibson- Smith, Jarvis, Norman et al., 2021). The evidence on appropriate service models is sparse (Clark & Fasciano, 2015. Am J Hosp Palliat Med. 31: 101). Adult hospices report lack of competence and confidence in young adult complex care needs (Knighting, Bray, Downing, et al., 2018. J Adv Nurs. May 6). Loss of children's hospice short break provision after transition has been described by families as like 'falling off a cliff edge' (Knighting, Pilkington, Noyes, et al., 2021. Health Serv Deliv Res. 9, 6). There is a lack of equivalent provision in adult services (Together for Short Lives, 2015). To address unmet need, a pilot residential short break service in an adult hospice was co-produced and evaluated with families to determine future provision. Aims With the aim of facilitating future service optimisation the service evaluation had the following objectives: a) to identify the outcomes and benefits; b) to enable learning; c) to explore staff experiences, training and support needs; d) to scope the financial and service delivery implications. Methods A service evaluation of the pilot (delivered May 2019-March 2020,) including process data and feedback gathered using semi-structured questions via questionnaires, interviews and focus groups with young adults, siblings, parent/ guardians and staff. Results Sixty short breaks delivered, accessed by 15 young adults >18 years and their families. Evaluation participants: 3 young adults, 6 siblings, 10 parent/guardians, 11 staff. Highly positive feedback with no withdrawals from the pilot. Triangulated themes: a) social and developmental benefits for young adults; b) respite benefits for families; c) achieving parents' trust, d) ability of adult hospice to meet complex care needs; e) positive staff experiences; f) identified areas for service improvement. Conclusion Persuasive evidence from the evaluation resulted in the service being commissioned. The report offers recommendations for adult hospices aspiring to develop young adult palliative care services. How innovative or of interest is the abstract? To our knowledge this is the first young adult short break service in a UK adult hospice.
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<a href="http://doi.org/10.1136/spcare-2022-HUNC.5" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.5</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).
2022
Adult
BMJ Supportive and Palliative Care
Child
Clinical Article
conference abstract
Drug Withdrawal
Female
Finlinson H
Health Care Delivery
Hospice
Human
Human Experiment
Interview
Learning
Male
March List 2023
outcome assessment
Palliative Therapy
positive feedback
Questionnaire
Sibling
Spathis A
Trust
Young Adult
-
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Title
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November 2022 List
Text
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Citation List Month
November 2022 List
URL Address
<a href="http://doi.org/10.1097/PCC.0000000000002996" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/PCC.0000000000002996</a>
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Parent-Reported Experience Measures of Care for Children with Serious Illnesses: A Scoping Review
Publisher
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Pediatric Critical Care Medicine
Date
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2022
Subject
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Child Care; Childhood Disease; Chronic Disease; Parental Attitude; Patient-Reported Outcome; Personal Experience; Caregiver Support; Child; Emergency Care; Empowerment; Health Care Delivery; Health Care Quality;Hospice Care; Hospital Care; Hospitalized Child; Human; Long Term Care; Neonatal Intensive Care Unit; Palliative Therapy; Review; Shared Decision Making; Systematic Review; Terminal Care
Creator
An entity primarily responsible for making the resource
Ang FJL; Finkelstein EA; Gandhi M
Description
An account of the resource
OBJECTIVE: This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify and describe steps followed in the measure development process, including where gaps lie and how PaREMs may be improved in future efforts, and 4) help service providers choose a PaREM suitable for their service delivery setting and strategy. DATA SOURCES: Relevant articles were systematically searched from PubMed, CINAHL, and Scopus EBSCOhost databases until June 10, 2021, followed by a manual reference list search of highly relevant articles. STUDY SELECTION: Abstracts were screened, followed by a full-text review using predetermined inclusion and exclusion criteria. DATA EXTRACTION: A standardized data extraction tool was used. DATA SYNTHESIS: Sixteen PaREMs were identified. There were large variances in the development processes across measures, and most have been developed in high-income, English-speaking Western countries. Most only assess the quality of acute inpatient care. Few measures can be used by multiple service providers or chronic care, and many do not capture all relevant domains of the parent experience. CONCLUSION(S): Service providers should integrate PaREMs into their settings to track and improve the quality of care. Given the multidisciplinary nature of pediatric care and the often-unpredictable disease trajectories of seriously ill children, measures that are applicable to multiple providers and varying lengths of care are essential for standardized assessment of quality of care and coordination among providers. To improve future PaREM development, researchers should follow consistent and methodologically robust steps, ideally in more diverse sociocultural and health systems contexts. Future measures should widen their scope to be applicable over the disease trajectory and to multiple service providers in a child's network of care for a comprehensive evaluation of experience.Copyright © 2022 Lippincott Williams and Wilkins. All rights reserved.
Identifier
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<a href="http://doi.org/10.1097/PCC.0000000000002996" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002996</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).
Child
Child Care
Chronic Disease
Systematic Review
Terminal Care
2022
Ang FJL
Caregiver Support
Childhood Disease
Emergency Care
empowerment
Finkelstein EA
Gandhi M
Health Care Delivery
Health Care Quality
Hospice Care
Hospital care
Hospitalized Child
Human
Long Term Care
Neonatal Intensive Care Unit
November 2022 List
Palliative Therapy
Parental Attitude
patient-reported outcome
Pediatric Critical Care Medicine
Personal Experience
Review
shared decision making
-
Dublin Core
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Title
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March 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
March 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.299" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.299</a>
Dublin Core
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Title
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Key Findings of the Structures and Processes of Inpatient Pediatric Palliative Care Programs (S737)
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
2020
Subject
The topic of the resource
burnout; child; clergy; conference abstract; controlled study; female; health care delivery; health care system; hospital patient; human; major clinical study; male; palliative therapy; physician; practice guideline; registered nurse; social worker
Creator
An entity primarily responsible for making the resource
Rogers M; Williams C; Klick J; Friebert S; Heitner R
Description
An account of the resource
Objectives: * Examine the key structures and processes of inpatient pediatric palliative care programs in the United States. * Assess the degree of variation in program delivery, staffing, and patient volumes. * Identify three threats and three opportunities to the standardization of pediatric palliative care practice. Original Research Background: Over the past ten years, health care systems have begun to recognize pediatric palliative care (PPC) programs as the standard of practice in providing high-quality care. Despite this culture shift, little is known about how PPC programs operate, the services they provide, or the staffing required to provide them sustainably. Research Objectives: To examine the key structures and processes of PPC programs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.299" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.299</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
Burnout
Child
Clergy
conference abstract
Controlled Study
Female
Friebert S
Health Care Delivery
Health Care System
Heitner R
Hospital Patient
Human
Journal of Pain and Symptom Management
Klick J
Major Clinical Study
Male
March 2020 List
Palliative Therapy
Physician
Practice Guideline
registered nurse
Rogers M
Social Worker
Williams C
-
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
2019 Oncology 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
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1089/jayao.2019.0015" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jayao.2019.0015</a>
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Title
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"It Could Have Been Me": An Interpretive Phenomenological Analysis of Health Care Providers' Experiences Caring for Adolescents and Young Adults with Terminal Cancer
Publisher
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Journal of adolescent and young adult oncology.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adult; article; Canada; clinician; controlled study; health care delivery; health care personnel; human; nurse; semi structured interview; terminal care; uncertainty; wellbeing; young adult
Creator
An entity primarily responsible for making the resource
Tutelman P R; Drake E K; Urquhart R
Description
An account of the resource
Purpose: Adolescents and young adults (AYAs) with terminal cancer are a marginalized population with unique medical and psychosocial needs. AYAs commonly report challenges with their health care experiences, however, little is known about the experiences of the health care providers (HCPs) who deliver this specialized care. The purpose of the current study was to understand HCPs' experiences caring for AYAs with terminal cancer.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jayao.2019.0015" target="_blank" rel="noreferrer noopener">10.1089/jayao.2019.0015</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).
2019
Adult
Article
Canada
Clinician
Controlled Study
Drake E K
Health Care Delivery
Health Care Personnel
Human
Journal of adolescent and young adult oncology.
Nurse
Oncology 2019 List
Semi Structured Interview
Terminal Care
Tutelman P R
Uncertainty
Urquhart R
Wellbeing
Young Adult
-
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
2019 Developing World 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
Developing World 2019 List
URL Address
<a href="http://doi.org/10.6004/jnccn.2018.7174" target="_blank" rel="noreferrer noopener">http://doi.org/10.6004/jnccn.2018.7174</a>
Dublin Core
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Title
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Situational analysis and needs assessment regarding the availability and extent of pediatric palliative care services in the philippines
Publisher
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JNCCN Journal of the National Comprehensive Cancer Network
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
awareness; behavior change; care behavior; caregiver; child; childhood cancer; conference abstract; controlled study; counseling; financial management; health care delivery; health care personnel; health care planning; human; interview; long term survival; needs assessment; nutrition; palliative therapy; Philippines; psychosocial care; travel
Creator
An entity primarily responsible for making the resource
Cajucom L A N; Ramos R C; Manago R K B; Fuentes R K T; Garcia P G; Ridulme Q R; Oruga M D P; Vinas M J G
Description
An account of the resource
Background: Around 200,000 pediatric clients are diagnosed with cancer each year globally. Majority (84%) of cancer cases are found in developing countries with 20% average survival rate (Ferlay et al, 2012). Two-thirds of pediatric oncology clients in the Philippines are diagnosed at advanced stages (Lecciones, 2015). Abandonment of treatment is high at 80%. Only about 10%- 20% of clients attain long-term survival despite availability of multidisciplinary management. These outcomes reflect the gap in service delivery for pediatric oncology clients (Ferlay et al, 2012). Therefore, to improve accessibility to healthcare, it is necessary to determine the perceived palliative care needs of clients, their caregivers, and healthcare providers.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.6004/jnccn.2018.7174" target="_blank" rel="noreferrer noopener">10.6004/jnccn.2018.7174</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).
2019
Awareness
behavior change
Cajucom L A N
care behavior
Caregiver
Child
Childhood Cancer
conference abstract
Controlled Study
Counseling
Developing World 2019 List
financial management
Fuentes R K T
Garcia P G
Health Care Delivery
Health Care Personnel
health care planning
Human
Interview
JNCCN Journal of the National Comprehensive Cancer Network
long term survival
Manago R K B
Needs Assessment
Nutrition
Oruga M D P
Palliative Therapy
Philippines
psychosocial care
Ramos R C
Ridulme Q R
travel
Vinas M J G
-
Dublin Core
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Title
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October 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
October 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2019.0203" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0203</a>
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Title
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The Role of Child Life Specialists in Providing Culturally Responsive Palliative Care to the Mexican Origin Community
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
2019
Subject
The topic of the resource
human; palliative therapy; pediatric patient; coping behavior; terminal care; bereavement; grief; medical specialist; health care system; bereavement support; breathing exercise; child life specialist; communication skill; cultural anthropology; family centered care; guided imagery; health care delivery; health personnel attitude; letter; medical procedures; Mexican; relaxation training; religion; scope of practice
Creator
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Petkus J M
Identifier
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<a href="http://doi.org/10.1089/jpm.2019.0203" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0203</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).
2019
Bereavement
Bereavement Support
breathing exercise
child life specialist
Communication Skill
Coping Behavior
cultural anthropology
Family Centered Care
Grief
guided imagery
Health Care Delivery
Health Care System
Health Personnel Attitude
Human
Journal of Palliative Medicine
Letter
Medical Procedures
Medical Specialist
Mexican
October 2019 List
Palliative Therapy
pediatric patient
Petkus J M
relaxation training
Religion
Scope Of Practice
Terminal Care
-
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 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/10.1016/j.jpainsymman.2018.10.188" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.188</a>
Dublin Core
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Title
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Turning Water into Wine: A New Community Pharmacy Workforce Delivering Paediatric Palliative Care Services Across Scotland
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
2018
Subject
The topic of the resource
infant; hospice; nursing theory; heart; palliative therapy; major clinical study; funding; conference abstract; human; child; health care delivery; pharmacy; Scotland; water; wine; workforce; 7732-18-5 (water); community pharmacist; stakeholder engagement; summer
Creator
An entity primarily responsible for making the resource
McCusker K
Description
An account of the resource
Background: A ground breaking paediatric palliative care study in Scotland in 2015 identified that 15,400 babies, children and young people (BCYP) with life-limiting conditions required input from palliative care services, significantly higher than previously thought. Innovative and transformational approaches to palliative care need to be investigated if services are to meet demand. To this end, a Paediatric Palliative Care Community Pharmacy Network was conceptualised to deliver medicines optimisation to BCYP and improve access to specialist palliative care medication thereby improving patient outcomes. This pioneering new model of care unlocks the clinical capacity of community pharmacists and capitalises on their unique reach across Scotland to deliver palliative care services deep into the heart of all communities. Furthermore, this shift from the traditional medical and nursing models of palliative care will provide sustainable and affordable services and reduce the burden on the already stretched hospital and hospice services.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.188" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.188</a>
2018
7732-18-5 (water)
Child
community pharmacist
conference abstract
February 2019 List
Funding
Health Care Delivery
Heart
Hospice
Human
Infant
Journal of Pain and Symptom Management
Major Clinical Study
McCusker K
nursing theory
Palliative Therapy
pharmacy
Scotland
stakeholder engagement
summer
water
wine
workforce
-
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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June 2018 List
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).
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
June 2018 List
URL Address
<a href="http://doi.org/10.1080/24694193.2017.1383776" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/24694193.2017.1383776</a>
Dublin Core
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Title
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Upholding Ethical Decision Making in Children With Life Limiting Illnesses
Publisher
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Comprehensive child and adolescent 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
ethics; decision making; health care delivery; human; infant; intestine pseudoobstruction; male; mass medium; mitochondrial encephalomyopathy; mortality; pediatrics; procedures; psychology; terminal care; trends
Creator
An entity primarily responsible for making the resource
Glasper EA
Description
An account of the resource
Emeritus Professor Edward Alan Glasper from the University of Southampton discusses the complexities of care delivery to children in hospital who have life limiting medical conditions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/24694193.2017.1383776" target="_blank" rel="noreferrer noopener">10.1080/24694193.2017.1383776</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
Comprehensive Child and Adolescent Nursing
Decision Making
Ethics
Health Care Delivery
Human
Infant
intestine pseudoobstruction
June 2018 List
Male
mass medium
mitochondrial encephalomyopathy
Mortality
Pediatrics
Procedures
Psychology
Terminal Care
Trends
-
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
April 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
April 2018 List
URL Address
<a href="http://doi.org/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/jp.2017.160</a>
Dublin Core
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Title
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Parental assessment of comfort in newborns affected by lifelimiting conditions treated by a standardized neonatal comfort care program
Publisher
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Journal of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
life expectancy; Infant; Newborn; health survey; newborn; health care quality; self report; parental attitude; prospective study; parental behavior; newborn care; child parent relation; health program; human; female; male; adult; article; clinical article; life limiting disease; patient comfort; physical disease; fluid intake; health care delivery; infant nutrition; kangaroo care; peer review; standardization
Creator
An entity primarily responsible for making the resource
Parravicini E; Daho M; Foe G; Steinwurtzel R; Byrne M
Description
An account of the resource
Objective:To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program.Study Design:Participants were parents (n=35 families) who elected comfort care for their newborns diagnosed with life-limiting conditions. Standardized comfort measures including family/infant bonding, warmth, nutrition/hydration and pain/discomfort management were provided to all infants. Parents consented to receive a questionnaire with quantitative response options and open-ended questions.Results:Forty-two questionnaires (26 from mothers and 16 from fathers) were collected and analyzed. Most parents reported that their child was treated with respect, in a caring, peaceful and non-invasive environment. To the question 'Do you think that overall your baby received comfort' mode response was 'always'.Conclusion:Parents of infants with life-limiting conditions perceive that their babies experience comfort as a result of the care provided by the standardized Neonatal Comfort Care Program.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">10.1038/jp.2017.160</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
Adult
April 2018 List
Article
Byrne M
Child Parent Relation
Clinical Article
Daho M
Female
fluid intake
Foe G
Health Care Delivery
Health Care Quality
health program
Health Survey
Human
Infant
Infant Nutrition
Journal Of Perinatology
kangaroo care
Life Expectancy
life limiting disease
Male
Newborn
Newborn Care
Parental Attitude
parental behavior
Parravicini E
Patient Comfort
Peer Review
physical disease
Prospective Study
Self Report
standardization
Steinwurtzel R
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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://search.ebscohost.com.ezproxy.library.ubc.ca/login.aspx?direct=true&db=c8h&AN=2010735421&site=ehost-live" target="_blank" rel="noreferrer">http://search.ebscohost.com.ezproxy.library.ubc.ca/login.aspx?direct=true&db=c8h&AN=2010735421&site=ehost-live</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
An overview of contemporary social work practice in palliative care.
Publisher
An entity responsible for making the resource available
Progress In Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Female; Male; Palliative Care; Canada; Education; Aged; Social Values; Hospices; Social Work; Patient Advocacy; Role; Research; psychosocial; PPC Book Chapter 2011 (Kim Widger); decision making; knowledge; Support; Adolescence; Collaboration; Evaluation; reflection; Access to Information; 80 and over; Commitment; Communities; Goals and Objectives; Health Care Delivery; Multidisciplinary Care Team; Patient Care Plans
Creator
An entity primarily responsible for making the resource
Cadell S; Johnston M; Bosma H; Wainright W
Rights
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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
Description
An account of the resource
2010
2010
80 And Over
Access To Information
Adolescence
Aged
Backlog
Bosma H
Cadell S
Canada
Collaboration
Commitment
Communities
Decision Making
Education
Evaluation
Female
Goals and Objectives
Health Care Delivery
Hospices
Johnston M
Journal Article
Knowledge
Male
Multidisciplinary Care Team
Palliative Care
Patient Advocacy
Patient Care Plans
PPC Book Chapter 2011 (Kim Widger)
Progress In Palliative Care
psychosocial
Reflection
Research
Role
Social Values
Social Work
Support
Wainright W
-
Dublin Core
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Title
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Oncology
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
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1200/JCO.2017.73.1356" target="_blank" rel="noreferrer">http://doi.org/10.1200/JCO.2017.73.1356</a>
Dublin Core
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Title
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Pediatric palliative oncology: Bridging silos of care through an embedded model
Publisher
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Journal Of Clinical Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Cancer Palliative Therapy; Childhood Cancer; Cancer Diagnosis; Child; Child Health Care; Health Care Access; Health Care Delivery; Health Care Quality; Home Care; Human; Note; Patient Care; Priority Journal
Creator
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Kaye EC; Snaman JM; Baker JN
Identifier
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<a href="http://doi.org/10.1200/JCO.2017.73.1356" target="_blank" rel="noreferrer">10.1200/JCO.2017.73.1356</a>
Rights
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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).
2017
Baker JN
Cancer Diagnosis
Cancer Palliative Therapy
Child
Child Health Care
Childhood Cancer
Health Care Access
Health Care Delivery
Health Care Quality
Home Care
Human
Journal Of Clinical Oncology
Kaye EC
Note
Oncology 2017 List
Patient Care
Priority Journal
Snaman JM
-
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 2017 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2017-313087.515" target="_blank" rel="noreferrer">http://doi.org/10.1136/archdischild-2017-313087.515</a>
Dublin Core
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Title
A name given to the resource
Problematic Symptoms In Children Attending For Short Breaks At A Children's Hospice; Are We Missing An Opportunity For Symptom Assessment And Management?
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Female; Hospice; Male; Symptom Assessment; Child; Clinical Article; Clinical Nurse Specialist; Diagnosis; Family Study; Health Care Delivery; Human; Information Processing; Irritability; Nursing; Pain Assessment; Pediatrician; School Child; Seizure; Sleep
Creator
An entity primarily responsible for making the resource
Balfe J M; Booth A; Ritchie B
Description
An account of the resource
Aim Symptom assessment is a core component of paediatric palliative care. This audit aimed to determine whether the symptoms of children attending for routine short breaks in a children's hospice were assessed. The development of a formal symptom assessment team is also described. Methods The admission notes of all children attending for respite over a 2 week period in Feb 2016 were examined and data collected on Excel. The data was pulled from Vitro an online data system used within the hospice to record all nursing, medical and multi-disciplinary notes and all contacts with the family and professionals. Information gathered included diagnoses and ACT category, problematic symptoms and the use of formal symptom assessment tools. Results A total of 22 children attended for respite over the first 2 weeks of February 2016. The average age was 7 years 2 months with a range of 1 year 11 months to 17 years. A broad range of conditions were included, the majority were from ACT category 4. As described in previous studies of children with life-limiting conditions there was a high burden of problematic symptoms among the children. 16/22 children were noted to have at least 1 symptom on the routine respite admission paperwork and nursing notes identified ongoing symptoms during the short break in 12 of the 24 children. 7/22 had respiratory symptoms, 2/22 had problematic seizures. Irritability and pain were noted in 2/22 and 3/22 respectively. 3/22 children were recorded as having poor sleep. Disappointedly although symptoms were recognised, symptom management action was only taken in 5 cases. No formal recognised symptom management tool was used. Of note the FLACC pain scale has been incorporated into the hospice paperless chart but was not used in any case. Outcome The results of the initial audit highlighted the need to change service delivery and a new symptom assessment service incorporating a clinical nurse specialist and paediatrician with support from the broader clinical team has been developed. To date 14 children have received support from the symptom assessment team and a reaudit of routine short breaks in ongoing.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2017-313087.515" target="_blank" rel="noreferrer">10.1136/archdischild-2017-313087.515</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
Archives of Disease in Childhood
Balfe J M
Booth A
Child
Clinical Article
Clinical Nurse Specialist
Diagnosis
Family Study
Female
Health Care Delivery
Hospice
Human
Information Processing
Irritability
Male
Nursing
Pain Assessment
Pediatrician
Ritchie B
School Child
Seizure
September 2017 List
Sleep
Symptom Assessment
-
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
November 2016 List
Dublin Core
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Title
A name given to the resource
Pediatric Ethics And Communication Excellence (peace) Rounds: Decreasing Moral Distress And Patient Length Of Stay In The Picu
Publisher
An entity responsible for making the resource available
Hec Forum
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Health Care Delivery; Morality; Pediatrics; Intensive Care; Communication; Ethics Medical; Health Care Industry; Studies; Patient
Moral Distress; Ethics Intervention; Icu Length Of Stay; Clinical Ethics; Pediatrics
Creator
An entity primarily responsible for making the resource
Lucia Wocial; Veda Ackerman; Brian Leland; Brian Benneyworth; Vinit Patel; Yan Tong; Mara Nitu
Description
An account of the resource
This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers’ moral distress and decrease length of stay for patients with life-threatening illnesses. We evaluated the innovation using a pre/post intervention design measuring provider moral distress and comparing patient outcomes using retrospective historical controls. Physicians and nurses on staff in our pediatric intensive care unit in a quaternary care children's hospital participated in the evaluation. There were 60 patients in the interventional group and 66 patients in the historical control group. We evaluated the impact of weekly meetings (PEACE rounds) to establish goals of care for patients with longer than 10 days length of stay in the ICU for a year. Moral distress was measured intermittently and reported moral distress thermometer (MDT) scores fluctuated. "Clinical situations" represented the most frequent contributing factor to moral distress. Post intervention, overall moral distress scores, measured on the moral distress scale revised (MDS-R), were lower for respondents in all categories (non-significant), and on three specific items (significant). Patient outcomes before and after PEACE intervention showed a statistically significant decrease in PRISM indexed LOS (4.94 control vs 3.37 PEACE, p = 0.015), a statistically significant increase in both code status changes DNR (11 % control, 28 % PEACE, p = 0.013), and in-hospital death (9 % control, 25 % PEACE, p = 0.015), with no change in patient 30 or 365 day mortality. The addition of a clinical ethicist and senior intensivist to weekly inter-professional team meetings facilitated difficult conversations regarding realistic goals of care. The study demonstrated that the PEACE intervention had a positive impact on some factors that contribute to moral distress and can shorten PICU length of stay for some patients.
Identifier
An unambiguous reference to the resource within a given context
doi:10.1007/s10730-016-9313-0
Rights
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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).
2016
Brian Benneyworth
Brian Leland
Clinical Ethics
Communication
Ethics Intervention
Ethics Medical
Health Care Delivery
Health Care Industry
HEC Forum
Icu Length Of Stay
Intensive Care
Lucia Wocial
Mara Nitu
Moral Distress
Morality
November 2016 List
Patient
Pediatrics
Studies
Veda Ackerman
Vinit Patel
Yan Tong
-
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
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Title
A name given to the resource
Household Income Determines Access To Specialized Pediatric Chronic Pain Treatment In Germany.
Publisher
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Bmc Health Services Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Socioeconomic Status (ses); Pediatrics; Chronic Pain; Health Care Delivery; Income; Inequality; Specialized Treatment
Creator
An entity primarily responsible for making the resource
Ruhe AK; Wager J; Hirschfeld G; Zernikow B
Description
An account of the resource
Background
Families with lower socioeconomic status (SES) often face problems with gaining access to health care services. Information is scarce on the relationship between SES and health care delivery for children suffering from chronic pain.
Methods
Families presenting to a specialized pain center (N = 1,001) provided information on ‘household income, ‘parental education’ and ‘occupation’ to aid the evaluation of their SES. To assess whether the SES of the clinical sample is representative of the general population, it was compared to data from a community sample (N = 14,558). For the clinical sample, travel distance to the clinic was described in relation to the 75 % catchment area. Multiple logistic regression was used to analyze the association between SES and the journey from outside the catchment area.
Results
The SES was significantly higher in the clinical sample than in the community sample. Within the clinical sample, the distance traveled to the pain center increased with increasing SES. The 75 % catchment area was 143 miles for families with the highest SES and 78 miles for the lowest SES. ‘Household income’ predicted travel distance (OR 1.32 (1.12–1.56)). Education and occupational status were not significant predictors of travel from outside the catchment area.
Conclusions
In Germany, specialized care for children with chronic pain is subject to disparities in access. Future activities should focus on identifying barriers to access and seeking to prevent inequalities in specialized pediatric health care delivery. Increasing the number of specialized treatment facilities could improve access to specialized pediatric pain treatment, regardless of socioeconomic determinants.
Identifier
An unambiguous reference to the resource within a given context
doi: 10.1186/s12913-016-1403-9
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
April 2016 List
BMC Health Services Research
Chronic Pain
Health Care Delivery
Hirschfeld G
Income
Inequality
Pediatrics
Ruhe AK
Socioeconomic Status (ses)
Specialized Treatment
Wager J
Zernikow B