1
40
13
-
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/10.1136/bmjspcare-2021-003087" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjspcare-2021-003087</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
Designing the physical environment for inpatient palliative care: A narrative review
Publisher
An entity responsible for making the resource available
BMJ Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Hospice Care; Hospital Care; Hospital Patient; Narrative; Nursing Home; Palliative Therapy; Cinahl; Family Management; Hospice Care; Hospital Care; Medline; PsycINFO; Adult; Built Environment; Child; Comfort; Conception; Data Extraction; Data Synthesis; Emergency Ward; Family Interaction; Family Management; Hospice Care; Hospital Care; Nursing Home Care; Female; Furniture; Human; Human Dignity; Male; Nursing Home; Privacy; Review; Systematic Review; Thematic Analysis
Creator
An entity primarily responsible for making the resource
Wong K; McLaughlan R; Collins A; Philip J
Description
An account of the resource
Background: It is essential that the physical environments in which inpatient palliative care is provided support the needs of patients and the facilitate the multidimensional delivery of palliative care. This review aims to identify the features and characteristics of inpatient palliative care environments that enhance or detract from the patient experience; and identify opportunities for progress within this field. Method(s): Three databases were searched: MEDLINE (1946-2020), PsycINFO (1806-2020) and CINAHL (1937-2020). Articles were screened by title and abstract with included studies read in full for data extraction. Data synthesis involved thematic analysis informed by the findings of the included literature. Inclusion criteria were studies with empirical methodology examining adult palliative care in the hospital, hospice or nursing home environment. Studies that examined palliative care delivered within the emergency department, ICU or within the home were excluded, as were those related to paediatric palliative care. Result(s): Four main themes were identified: the provision of privacy, facilitating interactions with family, facilitating comfort through homeliness and connections to nature. Conclusion(s): The board acceptance of single rooms as the preeminent design solution for supporting privacy, dignity and family interaction, alongside current conceptions of homeliness that typically focus on matters of interior design, are limiting possibilities for further design innovation within palliative care settings. Research that investigates a broader set of design strategies through which the built environment can support care, alongside enhanced interdisciplinary collaboration, could positively contribute to patient and family experiences of inpatient palliative care.Copyright © Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2021-003087" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003087</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).
Child
Hospice Care
Hospital Care
Human
Thematic Analysis
2021
Adult
BMJ Supportive and Palliative Care
Built Environment
Cinahl
Collins A
Comfort
Conception
data extraction
Data Synthesis
Emergency Ward
Family Interaction
Family Management
Female
Furniture
Hospice Care
Hospital care
Hospital Patient
Human Dignity
January List 2023
Male
McLaughlan R
Medline
Narrative
nursing home
Nursing Home Care
Palliative Therapy
Philip J
Privacy
Psycinfo
Review
Systematic Review
Wong 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/10.1111/hex.13925" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/hex.13925</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
What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis
Publisher
An entity responsible for making the resource available
Health Expectations
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; disability; article; controlled study; female; human; male; palliative therapy; preschool child; child parent relation; aged; interview; parent; interpersonal communication; school child; intellectual impairment; qualitative research; side effect; hospital care; adolescent; health care system; drug therapy; semi structured interview; adverse drug reaction; patient safety; pediatric hospital; thematic analysis; special situation for pharmacovigilance; kindness
Creator
An entity primarily responsible for making the resource
Ong N; Lucien A; Long J; Weise J; Burgess A; Walton M
Description
An account of the resource
Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. Design, setting and participants: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. Results: Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context. Conclusions: The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. Patient and public contribution: Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/hex.13925" target="_blank" rel="noreferrer noopener">10.1111/hex.13925</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
Adolescent
Adverse Drug Reaction
Aged
Article
Burgess A
Child
Child Parent Relation
Controlled Study
Disability
Drug Therapy
February List 2024
Female
Health Care System
Health Expectations
Hospital care
Human
Intellectual Impairment
Interpersonal Communication
Interview
kindness
Long J
Lucien A
Male
Ong N
Palliative Therapy
Parent
Patient Safety
Pediatric Hospital
Preschool Child
Qualitative Research
School Child
Semi Structured Interview
Side Effect
special situation for pharmacovigilance
Thematic Analysis
Walton M
Weise 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
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.3390/children9060777" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9060777</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
Palliative Care for Childhood Cancer
Publisher
An entity responsible for making the resource available
Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
child; Palliative Care; human; quality of life; family; home care; practice guideline; pain; Netherlands; cancer patient; physician; hope; health care quality; hospital care; health care planning; health care access; health care personnel; daily life activity; cancer palliative therapy; evidence based practice; medical education; editorial; nausea; child health care; collaborative care team; vomiting; hematopoietic stem cell transplantation; nurse; disease burden; advanced cancer; cause of death; patient worry; health care need; illness trajectory; childhood cancer/th [Therapy]; personalized cancer therapy
Creator
An entity primarily responsible for making the resource
Michiels EM
Description
An account of the resource
Cure rates for children with cancer are improving, but often at the cost of quality of life during treatment [...].
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3390/children9060777" target="_blank" rel="noreferrer noopener">10.3390/children9060777</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
2023 SE3 - Oncology
Advanced Cancer
Cancer Palliative Therapy
Cancer Patient
Cause Of Death
Child
Child Health Care
childhood cancer/th [Therapy]
Children
collaborative care team
daily life activity
Disease Burden
Editorial
evidence based practice
Family
Health Care Access
health care need
Health Care Personnel
health care planning
Health Care Quality
Hematopoietic stem cell transplantation
Home Care
Hope
Hospital care
Human
illness trajectory
Medical Education
Michiels EM
Nausea
Netherlands
Nurse
Pain
Palliative Care
patient worry
personalized cancer therapy
Physician
Practice Guideline
Quality Of Life
Vomiting
-
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/10.1097/PCC.0000000000001219" target="_blank" rel="noreferrer">http://doi.org/10.1097/PCC.0000000000001219</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
Moral distress in PICU and neonatal ICU practitioners: A cross-sectional evaluation
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
distress syndrome; health practitioner; morality; neonatal intensive care unit; pediatric intensive care unit; Adult; Article; burnout; correlation analysis; cross-sectional study; Demography; Female; Hospital care; Human; Intensive Care; linear regression analysis; major clinical study; Male; Maslach Burnout Inventory Depersonalization Subscale; Middle Aged; Mishel Parent Perception of Uncertainty Scale; nurse; outcome assessment; physician; priority journal; Prognosis; Questionnaire; Rating Scale; Revised Moral Distress Scale; Terminal Care; tertiary care center; Uncertainty; work; Young Adult
Creator
An entity primarily responsible for making the resource
Larson CP; Dryden-Palmer KD; Gibbons C; Parshuram CS
Description
An account of the resource
Objectives: To measure the level of moral distress in PICU and neonatal ICU health practitioners, and to describe the relationship of moral distress with demographic factors, burnout, and uncertainty. Design: Cross-sectional survey. Setting: A large pediatric tertiary care center. Subjects: Neonatal ICU and PICU health practitioners with at least 3 months of ICU experience. Interventions: A 41-item questionnaire examining moral distress, burnout, and uncertainty. Measurements and Main Results: The main outcome was moral distress measured with the Revised Moral Distress Scale. Secondary outcomes were frequency and intensity Revised Moral Distress Scale subscores, burnout measured with the Maslach Burnout Inventory depersonalization subscale, and uncertainty measured with questions adapted from Mishel's Parent Perception of Uncertainty Scale. Linear regression models were used to examine associations between participant characteristics and the measures of moral distress, burnout, and uncertainty. Two-hundred six analyzable surveys were returned. The median Revised Moral Distress Scale score was 96.5 (interquartile range, 69-133), and 58% of respondents reported significant work-related moral distress. Revised Moral Distress Scale items involving end-of-life care and communication scored highest. Moral distress was positively associated with burnout (r<sup>2</sup> = 0.27; p < 0.001) and uncertainty (r<sup>2</sup> = 0.04; p = 0.008) and inversely associated with perceived hospital supportiveness (r<sup>2</sup> = 0.18; p < 0.001). Nurses reported higher moral distress intensity than physicians (Revised Moral Distress Scale intensity subscores: 57.3 vs 44.7; p = 0.002). In nurses only, moral distress was positively associated with increasing years of ICU experience (p = 0.02) and uncertainty about whether their care was of benefit (r<sup>2</sup> = 0.11; p < 0.001) and inversely associated with uncertainty about a child's prognosis (r<sup>2</sup> = 0.03; p = 0.03). Conclusions: In this single-center, cross-sectional study, we found that moral distress is present in PICU and neonatal ICU health practitioners and is correlated with burnout, uncertainty, and feeling unsupported.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/PCC.0000000000001219" target="_blank" rel="noreferrer">10.1097/PCC.0000000000001219</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
Adult
Article
Burnout
Correlation Analysis
Cross-sectional Study
Demography
Distress Syndrome
Dryden-Palmer KD
Female
Gibbons C
health practitioner
Hospital care
Human
Intensive Care
January 2018 List
Larson CP
linear regression analysis
Major Clinical Study
Male
Maslach Burnout Inventory Depersonalization Subscale
Middle Aged
Mishel Parent Perception of Uncertainty Scale
Morality
Neonatal Intensive Care Unit
Nurse
outcome assessment
Parshuram CS
Pediatric Critical Care Medicine
Pediatric Intensive Care Unit
Physician
Priority Journal
Prognosis
Questionnaire
Rating Scale
Revised Moral Distress Scale
Terminal Care
tertiary care center
Uncertainty
Work
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
April 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
April 2022 List
URL Address
<a href="http://doi.org/10.1038/s41390-022-01975-3" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41390-022-01975-3</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
Adult healthcare is associated with more emergency healthcare for young people with life-limiting conditions
Publisher
An entity responsible for making the resource available
Pediatric Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Adolescent; Adult; Children; Cohort analysis; Diabetes mellitus; Hospital care; Retrospective studies
Creator
An entity primarily responsible for making the resource
Jarvis S; Flemming K; Richardson G; Fraser L
Description
An account of the resource
Background: Children with life-limiting conditions receive specialist paediatric care in childhood, but the transition to adult care during adolescence. There are concerns about transition, including a lack of continuity in care and that it may lead to increases in emergency hospital visits. Method(s): A retrospective cohort was constructed from routinely collected primary and hospital care records for young people aged 12-23 years in England with (i) life-limiting conditions, (ii) diabetes or (iii) no long-term conditions. Transition point was estimated from the data and emergency inpatient admissions and Emergency Department visits per person-year compared for paediatric and adult care using random intercept Poisson regressions. Result(s): Young people with life-limiting conditions had 29% (95% CI: 14-46%) more emergency inpatient admissions and 24% (95% CI: 12-38%) more Emergency Department visits in adult care than in paediatric care. There were no significant differences associated with the transition for young people in the diabetes or no long-term conditions groups. Conclusion(s): The transition from paediatric to adult healthcare is associated with an increase in emergency hospital visits for young people with life-limiting conditions, but not for young people with diabetes or no long-term conditions. There may be scope to improve the transition for young people with life-limiting conditions. Impact: There is evidence for increases in emergency hospital visits when young people with life-limiting conditions transition to adult healthcare.These changes are not observed for comparator groups - young people with diabetes and young people with no known long-term conditions, suggesting they are not due to other transitions happening at similar ages.Greater sensitivity to changes at transition is achieved through estimation of the transition point from the data, reducing misclassification bias. Copyright © 2022, The Author(s).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1038/s41390-022-01975-3" target="_blank" rel="noreferrer noopener">10.1038/s41390-022-01975-3</a>
2022
Adolescent
Adult
April 2022 List
Children
Cohort Analysis
Diabetes Mellitus
Flemming K
Fraser L
Hospital care
Jarvis S
Pediatric Research
Retrospective Studies
Richardson G
-
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
October 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
October List 2023
URL Address
<a href="http://doi.org/10.1136/spcare-2023-004305" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2023-004305</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
Neonatal serious illness: operational definition
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
2023
Subject
The topic of the resource
Infant Newborn; terminal care; article; cohort analysis; controlled study; female; human; major clinical study; male; newborn; retrospective study; palliative therapy; pediatrics; infant; conversation; rank sum test; cause of death; hospital care; prognosis
Creator
An entity primarily responsible for making the resource
Guttmann K; Silverman R; Weintraub AS
Description
An account of the resource
OBJECTIVES: (1) To operationalise our previously published definition of neonatal serious illness by applying it to a patient cohort and (2) to evaluate timing of palliative care consultation, goals of care discussions and meeting serious illness criteria. METHOD(S): This was a retrospective chart review. Inborn neonates delivered between January 2006 and December 2020 who died prior to neonatal intensive care unit discharge were identified through EPIC query. Kruskal-Wallis and Mann-Whitney-U tests were used to compare time intervals relating to transition to serious illness across causes of death and other factors. chi2 tests were used to examine frequency of goals of care conversations by factors. RESULT(S): Eighty-eight per cent of patients met criteria for neonatal serious illness within 48 hours of life. There were no significant differences in transition to serious illness between preterm and term infants. Time to identification of serious illness varied significantly by cause of death. Palliative care was consulted for 5.7% of patients. CONCLUSION(S): All patients met criteria for serious illness early in life based on our definition. This definition may be useful for identifying neonates with serious illness in time to provide support. Additional work is needed to apply this definition prospectively to explore its utility for clinical care and research.Copyright © Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/spcare-2023-004305" target="_blank" rel="noreferrer noopener">10.1136/spcare-2023-004305</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
Article
BMJ Supportive & Palliative Care
Cause Of Death
Cohort Analysis
Controlled Study
Conversation
Female
Guttmann K
Hospital care
Human
Infant
Infant Newborn
Major Clinical Study
Male
Newborn
October List 2041
Palliative Therapy
Pediatrics
Prognosis
rank sum test
Retrospective Study
Silverman R
Terminal Care
Weintraub AS
-
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
October 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
October 2020 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2020-002436" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2020-002436</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
I'm praying for a miracle': characteristics of spiritual statements in paediatric intensive care unit care conferences
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
2020
Subject
The topic of the resource
communication; family management; hospital care; paediatrics; spiritual care
Creator
An entity primarily responsible for making the resource
Gradick K; October T; Pascoe D; Fleming J; Moore D
Description
An account of the resource
CONTEXT: Supporting spiritual needs is a well-established aspect of palliative care, but no data exist regarding how physicians engage with patients and families around spirituality during care conferences in paediatric intensive care units (PICU). OBJECTIVES: To assess the frequency and characteristics of family and physician spiritual statements in PICU care conferences. METHODS: We performed qualitative analysis of 71 transcripts from PICU conferences, audio-recorded at an urban, quaternary medical centre. Transcripts were derived from a single-centre, cross-sectional, qualitative study. RESULTS: We identified spiritual language in 46% (33/71) of PICU care conferences. Spiritual statements were divided relatively evenly between family member (51%, 67/131) and physician statements (49%, 64/131). Physician responses to families' spiritual statements were coded as supportive (46%, 31/67), deferred (30%, 20/67), indifferent (24%, 16/67) or exploratory (0/67). CONCLUSIONS: In this single-centre PICU, spiritual statements were present 46% of the time during high stakes decision-making conferences, but there was little evidence of spiritual care best practices, such as offering chaplain support and performing open-ended spiritual assessments. PICU clinicians should expect spiritual statements in care conferences and be prepared to respond.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2020-002436" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2020-002436</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
BMJ Supportive & Palliative Care
Communication
Family Management
Fleming J
Gradick K
Hospital care
Moore D
October T
October 2020 List
Paediatrics
Pascoe D
Spiritual 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
A name given to the resource
April 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
April 2022 List
URL Address
<a href="http://doi.org/10.1542/hpeds.2021-005964" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/hpeds.2021-005964</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 Interdisciplinary Hospital-Based Committee to Improve Pediatric Bereavement Care
Publisher
An entity responsible for making the resource available
Hospital Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Bereavement; Hospital care; Interdisciplinary; Pediatric
Creator
An entity primarily responsible for making the resource
Goldberg JM; Duplechain AC; Fraser CE; Boles JC
Description
An account of the resource
Although frequently overshadowed by adult mortality rates and bereavement care needs, the death of a child can significantly jeopardize the physical, psychosocial, and emotional health of surviving parents, caregivers, and family members. Unfortunately, researchers have only recently begun to explore the trajectory of pediatric bereavement care needs. As an ongoing public health concern, health care institutions and related organizations must partner with interdisciplinary care providers and bereaved families to design effective and sustainable bereavement supports in their communities. Therefore, the purpose of this article is to describe the development and accomplishments of an interdisciplinary bereavement committee at a children's hospital within an academic medical center. By relying on available empirical evidence and close collaboration with bereaved parent members, this effort has generated sizeable practice improvements and new service offerings within the organization, local community, and the individual patients and families the institution serves. Copyright © 2021 by the American Academy of Pediatrics.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/hpeds.2021-005964" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2021-005964</a>
2021
April 2022 List
Bereavement
Boles JC
Duplechain AC
Fraser CE
Goldberg JM
Hospital care
Hospital Pediatrics
Interdisciplinary
Pediatric
-
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://doi.org/10.1542/peds.2013-1286" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2013-1286</a>
<a href="http://pediatrics.aappublications.org/content/early/2013/10/30/peds.2013-1286" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/early/2013/10/30/peds.2013-1286</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
Pediatric Palliative Care Programs in Children’s Hospitals: A Cross-Sectional National Survey
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
2013
Subject
The topic of the resource
Palliative Care; hospice care; Palliative Care; Pediatric; survey; Hospital care
Creator
An entity primarily responsible for making the resource
Feudtner C; Womer JW; Augustin R; Remke S; Wolfe J; Friebert SE; Weissman DE
Description
An account of the resource
BACKGROUND: Pediatric palliative care (PPC) programs facilitate the provision of comprehensive care to seriously ill children. Over the past 10 years many such programs have been initiated by children’s hospitals, but little is known about their number, staff composition, services offered, sources of support, or national distribution. METHODS: In the summer of 2012, we surveyed 226 hospitals as identified by the National Association of Children’s Hospitals and Related Institutions. The survey instrument gathered data about whether their institution had a PPC program, and for hospitals with programs, it asked for a wide range of information including staffing, patient age range, services provided, and financial support. RESULTS: Of the 162 hospitals that provided data (71.7% response rate), 69% reported having a PPC program. The rate of new program creation peaked in 2008, with 12 new programs created that year, and 10 new programs in 2011. Most programs offer only inpatient services, and most only during the work week. The number of consults per year varied substantially across programs, and was positively associated with hospital bed size and number of funded staff members. PPC programs report a high level of dependence on hospital funding. CONCLUSIONS: PPC programs are becoming common in children’s hospitals throughout the United States yet with marked variation in how these programs are staffed, the level of funding for staff effort to provide PPC, and the number of consultations performed annually. Guidelines for PPC team composition, funding, and consultation standards may be warranted to ensure the highest quality of PPC.
2013-11
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2013-1286" target="_blank" rel="noreferrer">10.1542/peds.2013-1286</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).
Type
The nature or genre of the resource
Journal Article
2013
Augustin R
Backlog
Feudtner C
Friebert SE
Hospice Care
Hospital care
Journal Article
Palliative Care
Pediatric
Pediatrics
Remke S
Survey
Weissman DE
Wolfe J
Womer JW
-
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/10.1136/bmjspcare-2020-002449" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2020-002449</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
Analysis of health administration data to inform health service planning for paediatric palliative care
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
2020
Subject
The topic of the resource
chronic conditions; hospital care; paediatrics
Creator
An entity primarily responsible for making the resource
Bowers AP; Bradford N; Chan RJ; Herbert A; Yates P
Description
An account of the resource
BACKGROUND: Health service planning in paediatric palliative care is complex, with the diverse geographical and demographic characteristics adding to the challenge of developing services across different nations. Accurate and reliable data are essential to inform effective, efficient and equitable health services. AIM: To quantify health service usage by children and young people aged 0-21 years with a life-limiting condition admitted to hospital and health service facilities in Queensland, Australia during the 2011 and 2016 calendar years, and describe the clinical and demographic characteristics associated with health services usage. DESIGN: Retrospective health administrative data linkage of clinical and demographic information with hospital admissions was extracted using International Statistical Classification of Diseases and Related Health Problems, Tenth Revision Australian Modification (ICD-10-AM) diagnostic codes. Data were analysed using descriptive statistics. SETTING/PARTICIPANTS: Individuals aged 0-21 years with a life-limiting condition admitted to a Queensland Public Hospital and Health Service or private hospital. RESULTS: Hospital admissions increased from 17 955 in 2011 to 23 273 in 2016, an increase of 5318 (29.6%). The greatest percentage increase in admissions were for those aged 16-18 years (58.1%, n=1050), and those with non-oncological conditions (36.2%, n=4256). The greatest number of admissions by ICD-10-AM chapter for 2011 and 2016 were by individuals with neoplasms (6174, 34.4% and 7206, 31.0% respectively). Overall, the number of admissions by Indigenous children and young people increased by 70.2% (n=838). CONCLUSIONS: Administrative data are useful to describe clinical and demographic characteristics and quantify health service usage. Available data suggest a growing demand for health services by children eligible for palliative care that will require an appropriate response from health service planners.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2020-002449" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2020-002449</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
BMJ Supportive & Palliative Care
Bowers AP
Bradford N
Chan RJ
chronic conditions
December 2020 List
Herbert A
Hospital care
Paediatrics
Yates P
-
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://doi.org/10.1016/j.pcl.2014.05.002" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pcl.2014.05.002</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
Pediatric Hospital Care for Children with Life-threatening Illness and the Role of Palliative Care
Publisher
An entity responsible for making the resource available
Pediatric Clinics Of North America
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Hospitalization; Chronic disease; Health care reform; Life Threatening illness; Hospital care
Creator
An entity primarily responsible for making the resource
Bogetz JF; Ullrich CK; Berry JG
Description
An account of the resource
Under increasing pressure to contain costs, hospitals are challenged to provide high-quality care to an increasingly complex group of children with life-threatening illness (LTI) that often worsen over time. Pediatric palliative care is an essential component of optimal hospital care delivery for these children and their families. This article describes (1) the current landscape of pediatric hospital care for children with LTI, (2) the connection between palliative care and hospital care for such children, and (3) the relationship between health care reform and palliative care for children with LTI.
2014-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pcl.2014.05.002" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.05.002</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).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Berry JG
Bogetz JF
Chronic Disease
Health Care Reform
Hospital care
Hospitalization
Journal Article
Life Threatening illness
Pediatric Clinics of North America
Ullrich CK
-
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
November 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
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>
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
Parent-Reported Experience Measures of Care for Children with Serious Illnesses: A Scoping Review
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/PCC.0000000000002996" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002996</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).
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
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 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
December 2021 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2020-002627" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2020-002627</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
Primary palliative care integrated model in paediatric ICU: an international cross-sectional study
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
2021
Subject
The topic of the resource
communication; cultural issues; education and training; hospital care; paediatrics; pediatrics; service evaluation
Creator
An entity primarily responsible for making the resource
Grunauer M; Mikesell C; Bustamante Callejas G
Description
An account of the resource
OBJECTIVES: Numbers are rising of chronically and critically ill, technology-dependent children, who are admitted to paediatric intensive care units (PICUs). An integrated model of care (IMOC), that combines paediatric critical care and primary paediatric palliative care (PPC), in which either approach varies depending on the disease trajectory and is provided by the critical care team, might be a fundamental component of the best available standard of care for patients with life-threatening conditions. The objective of this study is to assess how PICUs around the world, implement an IMOC. METHODS: International multicentre cross-sectional observational study. Data was gathered from 34 PICUs from 18 countries in the Americas, Europe, Asia and Africa. Provision of primary PPC was studied for each child admitted at the PICU. We evaluated score differences in each domain of the Initiative for Paediatric Palliative Care (IPPC) curriculum with multilevel generalised linear models. RESULTS: High-income country (HIC) units made up 32.4% of the sample, upper-middle income countries (UMICs) 44.1%, lower-middle income/lower income countries (LMIC/LICs) 23.5%. HICs had four statistically significantly higher IPPC scores compared with UMICs (domains: 1 holistic care; 2 family support, 3B family involvement; 6B grief/bereavement healthcare provider support) and two compared with LMIC/LICs (domains: 6A grief/bereavement family support; 6B grief/bereavement healthcare provider support).HICs had a statistically significant overall higher IPPC score than UMICs. Adjusting for patient/centre characteristics, shorter shifts and multiple comorbidities were associated with higher IPPC scores. CONCLUSIONS: All centres offered some PPC provision and partially applied an IMOC. These results are encouraging, however, differences related to income and patients/unit evidence opportunities for improvement. TRIAL REGISTRATION NUMBER: ISRCTN12556149.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2020-002627" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2020-002627</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
BMJ Supportive & Palliative Care
Bustamante Callejas G
Communication
cultural issues
December 2021 List
Education And Training
Grunauer M
Hospital care
Mikesell C
Paediatrics
Pediatrics
Service Evaluation