1
40
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
April 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
April 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/640">https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/640</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 in an underserved community: Striving and thriving
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
2018
Subject
The topic of the resource
awareness; bereavement support; bone marrow; cancer patient; Caribbean; child; childhood cancer; conference abstract; congenital malformation; coordination compound; ethnic group; Europe; female; heart; Hispanic; hospice; hospital patient; human; Japan; kidney; liver; major clinical study; male; medicaid; memory; Middle East; music therapy; neonatal intensive care unit; newborn; nursing education; pain; palliative therapy; pastoral care; perception; posthumous care; resident; sibling; social work; terminal care; terminally ill patient
Creator
An entity primarily responsible for making the resource
Alladin A R; Juanico K; Webster-Carrion A; Nares M; Cantwell G P
Description
An account of the resource
Program Goals: Our program is uniquely positioned in a safety net hospital that serves as a large tertiary referral center for pediatric transplant, trauma and heart failure as well as being an international catchment area for the southern hemisphere. Meeting the palliative care needs of our medically complex and chronically ill children proves to be a tremendous challenge, oftentimes made worse by the fact that our most technology dependent children may be uninsured with families that have little to no resources. Despite the complexity of our population and our many financial and socioeconomic constraints, we have a burgeoning Pediatric Palliative Care (PPC) Service that strives to provide quality independent of our patients' circumstances. Evaluation: In 2008, we sought to institute PPC without having dedicated FTE's. By 2013, we had convened a consistent team with existing staff and improved the awareness and importance of palliative care. Our program has experienced significant growth and now consists of one full time PPC Nurse, one volunteer faculty physician, child life, music therapy, behavioral health, pastoral care, social work and volunteer services. In 2016, our team received 176 consults - a 76% increase from our initial efforts in 2013. The majority were for Pediatric Transplant patients including Bone Marrow, Cardiac, Renal, Liver, Intestinal and Multivisceral, accounting for 23% of our total. Pediatric Oncology was our next most frequent category at 20%. The third most common consultation was for complex congenital malformations and syndromes from the Neonatal ICU at 11%. 79% of our consults consisted of ethnic minorities (Black and Hispanic). Historically, our institution serves 80% Medicaid and 3% unfunded patients. Approximately 20% of our patient population consists of international referrals and in 2016 our consults included patients from the Middle East, Caribbean, South and Central America, Europe and Japan. Our services to patients include coordination of complex care, discharges to hospice, pain and symptom management, family and sibling support, field trips and even meal, transportation and gym access vouchers. We have facilitated international medical transportation of terminally ill children back to their countries of origin to provide a peaceful death surrounded by loved ones in a familiar environment. From our cumulative PPC census, there were 90 deaths in 2016. All members of our team assisted with inpatient end of life care, memory building, bereavement services and even funeral arrangements and expenses where possible.
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
Alladin A R
April 2020 List
Awareness
Bereavement Support
bone marrow
Cancer Patient
Cantwell G P
Caribbean
Child
Childhood Cancer
conference abstract
Congenital Malformation
coordination compound
Ethnic Group
Europe
Female
Heart
Hispanic
Hospice
Hospital Patient
Human
Japan
Juanico K
kidney
liver
Major Clinical Study
Male
Medicaid
Memory
Middle East
Music Therapy
Nares M
Neonatal Intensive Care Unit
Newborn
nursing education
Pain
Palliative Therapy
Pastoral Care
Pediatrics
Perception
Posthumous Care
Resident
Sibling
Social Work
Terminal Care
terminally Ill Patient
Webster-Carrion A
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
February 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
February 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/141/1_MeetingAbstract/385">https://pediatrics.aappublications.org/content/141/1_MeetingAbstract/385</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
Parental knowledge and opinions on palliative care for children
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
2018
Subject
The topic of the resource
ambulatory care; analysis of variance; awareness; Caucasian; child; conference abstract; controlled study; convenience sample; data analysis software; ethnic group; female; high school; human; Illinois; institutional review; legal guardian; Likert scale; major clinical study; male; New York; palliative therapy; physician; randomized controlled trial; terminal care
Creator
An entity primarily responsible for making the resource
Zawistowski C A; Black C; Spruill T M; Granowetter L
Description
An account of the resource
Purpose: A pilot study to ascertain awareness and understanding of palliative care among parents of pediatric patients at a single academic medical center.
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
Ambulatory Care
Analysis of Variance
Awareness
Black C
Caucasian
Child
conference abstract
Controlled Study
Convenience Sample
Data Analysis Software
Ethnic Group
February 2020 List
Female
Granowetter L
high school
Human
Illinois
Institutional Review
legal guardian
Likert scale
Major Clinical Study
Male
New York
Palliative Therapy
Pediatrics
Physician
Randomized Controlled Trial
Spruill T M
Terminal Care
Zawistowski C A
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
August 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
August 2019 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2019-rcpch.453" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2019-rcpch.453</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
Where children die: A retrospective analysis of child death overview panel (CDOP) data
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
2019
Subject
The topic of the resource
child; child death; female; human; major clinical study; male; palliative therapy; retrospective study; controlled study; hospice; terminal care; conference abstract; ethnic group; ethnicity; newborn; anonymised data; Asian; British citizen; cancer diagnosis; cause of death; chromosome aberration; congenital malformation; data analysis software; gender; mortality rate; strategic planning
Creator
An entity primarily responsible for making the resource
Hartley D; Renton K; Clarkson L; McKeating C; Lyles L; Mayer A
Description
An account of the resource
Aims There is a statutory requirement to review all child deaths in England. The aim of this study is to collate and evaluate child death data from all Child Death Overview Panels (CDOPs) within a single UK region to inform strategic planning. Methods A retrospective analysis of 3 full years of anonymised data (2013/14 - 2015/16) representing all child deaths (expected and unexpected) collated from all 14 CDOPs in the region. Descriptive analysis was performed using SPSS assessing age (0-17 inclusive), gender, ethnicity, partial postcode, place of death and category of death as assigned following CDOP review. Ethical approval was not required. Missing data was excluded from analysis on a pairwise basis. Results Over the study period there were 1221 deaths, with an average mortality rate of 407 deaths per annum (total child population=1.1 million, 3.5 deaths/10000 children). The major causes of death were perinatal/neonatal events, and chromosomal, genetic and congenital anomalies; Combined these account for 60% (n=712/1183) of the dataset. 'Expected' deaths accounted for 64% (n=730/1149) of all child deaths. Place of death for expected deaths=Hospital deaths: 77% (n=564) Home: 9% (n=67), Hospice: 13% (n=91). When ethnicity data analysed for place of death (excluding neonatal and unexpected deaths), a greater proportion of white British children (n=201) died at home (16%, n=33) or within a hospice (23%, n=47) when compared to Asian children (Home: 12%, n=14; Hospice: 9%, n=10); Chi-squared 15.07, p=0.002. Conclusions Place of Death (PoD), a key quality indicator for end-of-life care, remains within hospital for the majority of children. Both ethnicity and disease type affect PoD, with ethnic minority groups less likely to die at home or hospice. Children with a cancer diagnosis were more likely to die at home, possibly attributable to known availability of a 24 hour/ 7 day outreach care for this group. Local paediatric palliative care services can use the above information to ensure future service developments provide equitable care provision and choices for families. Data limitations include acknowledged individual CDOP panel variations in data collation, including categorisation of cause of death and absence of recording of preferred PoD.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2019-rcpch.453" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-rcpch.453</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
anonymised data
Archives of Disease in Childhood
Asian
August 2019 List
British citizen
Cancer Diagnosis
Cause Of Death
Child
Child Death
Chromosome Aberration
Clarkson L
conference abstract
Congenital Malformation
Controlled Study
Data Analysis Software
Ethnic Group
Ethnicity
Female
Gender
Hartley D
Hospice
Human
Lyles L
Major Clinical Study
Male
Mayer A
McKeating C
Mortality Rate
Newborn
Palliative Therapy
Renton K
Retrospective Study
strategic planning
Terminal Care
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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/10.1016/S2352-4642%252817%252930014-7" target="_blank" rel="noreferrer">http://doi.org/10.1016/S2352-4642%252817%252930014-7</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
Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions
Publisher
An entity responsible for making the resource available
The Lancet Child And Adolescent Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Childhood Cancer; Bereavement; Cancer Prognosis; Child; Controlled Study; Ethnic Group; Human; Palliative Therapy; Personal Experience; Prevalence; Prognosis; Quality Of Life; Randomized Controlled Trial(topic); Sibling; Voice
Creator
An entity primarily responsible for making the resource
Rosenberg AR; Wolfe J
Description
An account of the resource
Paediatric palliative care (PPC) endeavours to alleviate the suffering and improve the quality of life of children with serious illnesses and their families. In the past two decades since WHO defined PPC and called for its inclusion in paediatric oncology care, rigorous investigation has provided important insights. For example, the first decade of research focused on end-of-life experiences of the child and the family, underscoring the high prevalence of symptom burden, the barriers to parent-provider concordance with regards to prognosis, as well as the need for bereavement supports. The second decade expanded PPC oncology investigation to include the entire cancer continuum and the voices of patients. Other studies identified the need for support of parents, siblings, and racial and ethnic minority groups. Promising interventions designed to improve outcomes were tested in randomised clinical trials. Future research will build on these findings and pose novel questions about how to continue to reduce the burdens of paediatric cancer.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/S2352-4642%252817%252930014-7" target="_blank" rel="noreferrer">10.1016/S2352-4642%252817%252930014-7</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
Bereavement
Cancer Prognosis
Child
Childhood Cancer
Controlled Study
Ethnic Group
Human
Oncology 2017 List
Palliative Therapy
Personal Experience
Prevalence
Prognosis
Quality Of Life
Randomized Controlled Trial(topic)
Rosenberg AR
Sibling
The Lancet Child And Adolescent Health
Voice
Wolfe J