1
40
14
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January 2018 List
Text
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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>
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Moral distress in PICU and neonatal ICU practitioners: A cross-sectional evaluation
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Pediatric Critical Care Medicine
Date
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2017
Subject
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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
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Larson CP; Dryden-Palmer KD; Gibbons C; Parshuram CS
Description
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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
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<a href="http://doi.org/10.1097/PCC.0000000000001219" target="_blank" rel="noreferrer">10.1097/PCC.0000000000001219</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).
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
-
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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
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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
June 2018 List
URL Address
<a href="http://doi.org/10.1080/2331205X.2017.1408251" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/2331205X.2017.1408251</a>
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Physician perspectives on end-of-life care and pediatric palliative care for children in the Republic of Korea
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Cogent Medicine
Date
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2017
Subject
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advance care planning; palliative therapy; South Korea; adult; child; conference abstract; death; deterioration; diagnosis; female; financial management; human; interview; life sustaining treatment; male; organization; perception; psychosocial care; questionnaire; tertiary care center
Creator
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Kim M S; Kim C H; Yu J; Song IG
Description
An account of the resource
Introduction: Despite significant advances in disease treatment, resources for the pediatric palliative care (PPC) for children with serious illnesses are limited in South Korea. The obstacles to provide optimal PPC include inadequate funding, shortage of specialized professionals, and healthcare system, but the perception of health professionals is also very important. Purpose: This study explored pediatric doctors' perception of end-of-life care and needs on PPC in Korea. Materials and Methods: The study survey was developed based on a review of the palliative care literature and sample physician interview. A questionnaire was sent via online survey and mail to the pediatric doctors with specialized boards working at 43 tertiary hospitals in South Korea. Results: A total of 118 doctors responded to the survey. The median age was 37 years, 53% were female and 76% answered they have own child. Eighty percent responded that, in the previous 2 years, they cared for more than one pediatric patient who died. When asked about appropriate age for terminal state disclosure, 6%, 30%, 42% and 14% answered that pediatric patients should be informed if they are aged over 4, 7, 12, and 15 years old respectively. As for the life-sustaining treatments (LSTs) decision, 24% answered that discussions should be started when a child is diagnosed with incurable diseases, and 48% said advance care planning is needed in a state of constant deterioration even though actual death is not expected. Although only 7% of pediatric doctors had personal desire for use of LSTs when their own disease is incurable and in the deteriorating state, more respondents (29%) showed preferences to LSTs for children in the same situation. More than half of the respondents answered that they are not confident about advance care planning including LST decisions. Most respondents reported experiencing difficulties in PPC areas such as symptom management, ethical problems, and psychosocial support more than once every six months. Pediatric doctors indicated to the barriers to pediatric palliative care implementation as follows: the attitude of parents who prefer aggressive treatment (19%), shortage of PPC professionals and organizations (18%), negative perception on PPC among health professionals (16%), lack of financial support for PPC (12%), inadequate linkage between curative and palliative care (12%), and difficulties to decide when to refer a patient to PPC (10%). Conclusion: Our study showed pediatric doctors in Korea have low preferences to LSTs for children in the terminal state and perceive the needs of PPC. The results will guide the health authorities to design PPC program in Korea.
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<a href="http://doi.org/10.1080/2331205X.2017.1408251" target="_blank" rel="noreferrer noopener">10.1080/2331205X.2017.1408251</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).
2017
Adult
Advance Care Planning
Child
Cogent Medicine
conference abstract
Death
Deterioration
Diagnosis
Female
financial management
Human
Interview
June 2018 List
Kim C H
Kim M S
Life Sustaining Treatment
Male
Organization
Palliative Therapy
Perception
psychosocial care
Questionnaire
Song IG
South Korea
tertiary care center
Yu J
-
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Title
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November 2018 List
Text
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Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0532</a>
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National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care
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Journal of Palliative Medicine
Date
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2018
Subject
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cancer palliative therapy;childhood cancer;medical education;Pediatrics;Advance care planning;article;Canada;Child;clinical practice;health care quality;health practitioner;Human;professional knowledge;quality of life;self care;tertiary care center;total quality management
Creator
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Widger K;Wolfe J;Friedrichsdorf S;Pole JD;Brennenstuhl S;Liben S;Greenberg M;Bouffet E;Siden H;Husain A;Whitlock JA;Leyden M;Rapoport A
Description
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Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC?-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC. Design: An integrated knowledge translation approach was used with pre-/posttest evaluation of care quality. Setting/Subjects/Measurements: Regional Teams of 3?6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of children with cancer and their parents about symptoms, quality of life, and care quality plus reviews of deceased patients' health records. Results: Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals. The only improvements in care quality were an increased number of days from referral to PPC teams until death by a factor of 1.54 (95% confidence interval [CI]?=?1.17?2.03) and from first documentation of advance care planning until death by a factor of 1.50 (95% CI?=?1.06?2.11), after adjusting for background variables. Conclusion: While improvements in care quality were only seen in two areas, our approach was highly effective in achieving knowledge dissemination, knowledge improvement, and practice change goals.
Identifier
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<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0532</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).
2018
Advance Care Planning
Article
Bouffet E
Brennenstuhl S
Canada
Cancer Palliative Therapy
Child
Childhood Cancer
Clinical Practice
Friedrichsdorf S
Greenberg M
Health Care Quality
health practitioner
Human
Husain A
Journal of Palliative Medicine
Leyden M
Liben S
Medical Education
November 2018 List
Pediatrics
Pole JD
professional knowledge
Quality Of Life
Rapoport A
Self Care
Siden H
tertiary care center
Total Quality Management
Whitlock JA
Widger K
Wolfe J
-
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Title
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November 2018 List
Text
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November 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537849.40363.f7" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537849.40363.f7</a>
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Title
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Paediatric palliative care: Are we doing enough? a retrospective review of deaths over 5 years in an academic tertiary hospital paediatric intensive care unit
Publisher
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Pediatric Critical Care Medicine
Date
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2018
Subject
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cause of death;palliative therapy;Pediatric intensive care unit;retrospective study;tertiary care center;adolescent;adult;advanced cancer;analgesia;artificial ventilation;cancer patient;Child;conference abstract;controlled study;demography;drug withdrawal;Female;human;inotropism;life sustaining treatment;major clinical study;Male;malignant neoplasm;medical history;medical record;neurologic disease;pediatric patient;resuscitation
Creator
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Ng MCG;Koh PL
Description
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Aims & Objectives: To study the epidemiology of deaths in our paediatric intensive care unit (PICU) over 5 years, so that we can better understand the dying experience of these patients and improve on palliative care for patients with life-limiting illnesses. Methods The medical records of all patients who died in the PICU from 2012 to 2016 were reviewed. Information including demographic data, past medical history, cause of death, referral to palliative care and use of life-sustaining therapies were collated. Results 81 patients died in the PICU from 2012 to 2016. Most deaths occurred in children aged 11 to 18 years old (31%), with a median age of 14. 69 (85%) patients had pre-existing life-limiting medical conditions, such as cancer and neurological disease. Of the 81 patients, 6 (7%) were known to palliative care services prior to admission and 6 (7%) were referred to palliative care during the admission. In terms of life-sustaining measures, 64 (79%) had invasive ventilation, 60 (74%) required inotropic support and 17 (21%) had cardiopulmonary resuscitation. In those whom death was expected, 59 (75%) patients received analgesia during the last 24 hours before death. 64 (79%) patients died after withdrawal or withholding of life-sustaining measures and 14 (17%) died after unsuccessful CPR. Conclusions Although majority of paediatric patients who died had pre-existing life-limiting conditions, very few were referred to palliative care. More can be done to improve the care of these patients, such as early referral to palliative care and establishment of advanced care plans.
Identifier
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<a href="http://doi.org/10.1097/01.pcc.0000537849.40363.f7" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537849.40363.f7</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).
2018
Adolescent
Adult
Advanced Cancer
Analgesia
Artificial Ventilation
Cancer Patient
Cause Of Death
Child
conference abstract
Controlled Study
Demography
Drug Withdrawal
Female
Human
inotropism
Koh PL
Life Sustaining Treatment
Major Clinical Study
Male
Malignant Neoplasm
Medical History
Medical Record
Neurologic Disease
Ng MCG
November 2018 List
Palliative Therapy
Pediatric Critical Care Medicine
Pediatric Intensive Care Unit
pediatric patient
Resuscitation
Retrospective Study
tertiary care center
-
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Title
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June 2019 List
Text
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June 2019 List
URL Address
<a href="http://doi.org/10.1136/jim-2018-000974.461" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/jim-2018-000974.461</a>
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Title
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Development and integration of a perinatal palliative care program at a tertiary care center
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Journal of Investigative Medicine
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2019
Subject
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hospice; newborn; anencephalus; intensive care; clergy; nurse; social worker; comfort; practice guideline; neonatologist; tertiary care center; conference abstract; human; child; female; controlled study; perinatal care; palliative therapy; abortion; electronic medical record; fetus malformation; Oklahoma; prenatal diagnosis
Creator
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Shah B A; May R; White L; Wlodaver A
Description
An account of the resource
Purpose of study Advances in fetal medicine have increased referrals to tertiary perinatal care centers. NRP guidelines recommend that only neonates with anencephaly and less than. 400 grams are not to be resuscitated. In 2015, Oklahoma passed a law stating 'it is the duty of the physician to inform the woman who carries a fetus with anomalies that perinatal hospice services are available and that this is an alternative to abortion'. We aim to describe the process of developing a perinatal palliative care (PPC) program for newborns with prenatal diagnoses of life-limiting conditions. Methods used Focus groups were conducted with responsible parties. Existing resources were identified. Implementation approaches were discussed. Summary of results The need for a PPC team was identified. Nurses, neonatologists, chaplains, social workers and child life specialists were integrated into this service with the support of an existing pediatric palliative care team. A new PPC program was introduced. Prenatal consults initiated by maternal-fetal medicine are an integral part of the prenatal care. Options of intensive care versus comfort care are offered. A neonatologist attends all these deliveries. The newborn stays with the mother. Special nurses were assigned for comfort care in the mother's room. Guidelines and specific PPC orders are now available in the electronic medical record. Examples are listed in the table 1. A website was created to inform referring physicians about this new program. Conclusions PPC was successfully established at a regional tertiary center. Parents of newborns diagnosed with lethal conditions have the choice of often non-beneficial intensive care or care focused on comfort after birth. This specialized care allows parents to celebrate the limited life of their precious newborns. Providers across the state have now access to a referral center offering perinatal neonatal palliative care. (Table Presented).
Identifier
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<a href="http://doi.org/10.1136/jim-2018-000974.461" target="_blank" rel="noreferrer noopener">10.1136/jim-2018-000974.461</a>
2019
Abortion
anencephalus
Child
Clergy
Comfort
conference abstract
Controlled Study
electronic medical record
Female
Fetus Malformation
Hospice
Human
Intensive Care
Journal Of Investigative Medicine
June 2019 List
May R
Neonatologist
Newborn
Nurse
Oklahoma
Palliative Therapy
Perinatal Care
Practice Guideline
Prenatal Diagnosis
Shah B A
Social Worker
tertiary care center
White L
Wlodaver A
-
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Title
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September 2019 List
Text
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Citation List Month
September 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2019.0111" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0111</a>
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Differences in Advance Care Planning and Circumstances of Death for Pediatric Patients Who Do and Do Not Receive Palliative Care Consults: A Single-Center Retrospective Review of All Pediatric Deaths from 2012 to 2016
Publisher
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Journal of Palliative Medicine
Date
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2019
Subject
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article; child; female; human; major clinical study; male; controlled study; hospice; medical record review; do not resuscitate order; palliative therapy; advance care planning; life sustaining treatment; pediatric patient; physician; retrospective study; time of death; statistics; tertiary care center
Creator
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Harmoney K; Mobley EM; Gilbertson-White S; Brogden NK; Benson RJ
Description
An account of the resource
Background: Growing evidence suggests that pediatric palliative care (PPC) teams influence the care received by children and young adults with chronic, life-limiting illnesses. Little is known about how PPC involvement affects advance care planning (ACP) and circumstances of death in pediatric populations with a wide range of diagnoses. Objective: To determine the relationship between PPC involvement, ACP, and circumstances of death for pediatric patients. Design: A retrospective chart review of 558 pediatric patients who died between January 1, 2012 and December 31, 2016 was conducted. Descriptive statistics were used to characterize the sample. A multivariable logistic regression was used to obtain associations between PPC involvement and ACP. Setting: Large, multidisciplinary tertiary care center in a rural state. Measurements: Data abstracted for each patient included the following: demographic information, diagnosis, location of primary unit, hospice involvement, goals of care (GOC), code status, Physician Orders for Life-Sustaining Treatment (POLST) completion, and location of death. Results: Patients with PPC involvement were more likely to have had ACP addressed before death. After adjusting for covariates in the model, patients with PPC were more likely to have their GOC documented (odds ratio [OR] = 96.93), completion of POLST (OR = 24.06), do-not-resuscitate code status (OR = 7.71), and hospice involvement at the time of death (OR = 11.70) compared with those who did not receive PPC. Conclusions: Pediatric patients are more likely to have ACP addressed if they have PPC involvement. Patients with chronic complex conditions are most likely to receive palliative care.
Identifier
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<a href="http://doi.org/10.1089/jpm.2019.0111" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0111</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
Advance Care Planning
Article
Benson RJ
Brogden NK
Child
Controlled Study
do not resuscitate order
Female
Gilbertson-White S
Harmoney K
Hospice
Human
Journal of Palliative Medicine
Life Sustaining Treatment
Major Clinical Study
Male
Medical Record Review
Mobley EM
Palliative Therapy
pediatric patient
Physician
Retrospective Study
September 2019 List
Statistics
tertiary care center
time of death
-
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Title
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December 2019 List
Text
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December 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0584" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0584</a>
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Title
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Perceptions of Pediatric Palliative Care among Physicians Who Care for Pediatric Patients in South Korea
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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
article; care behavior; caregiver; child; controlled study; decision making; education; human; multicenter study; oncologist; palliative therapy; pediatric patient; perception; prognosis; quality of life; questionnaire; South Korea; terminal care; tertiary care center; workforce
Creator
An entity primarily responsible for making the resource
Yu J; Song IG; Kim CH; Moon YJ; Shin HY; Kim MS
Description
An account of the resource
Background: Despite advances in medical technology, resources for pediatric palliative care (PPC) for children with serious illnesses are limited in South Korea. Physicians' awareness of and willingness to provide general palliative care and refer to specialized palliative care are key elements for providing PPC. Objective: The aim of this study was to explore physicians' perceptions of PPC and the differences therein between nononcologists and oncologists. Design: A nationwide survey was conducted among physicians caring for children in 45 tertiary hospitals in South Korea. Measurements: A questionnaire was developed to identify the confidence in and need for PPC, appropriate timing for PPC referrals, and perceived barriers to PPC. Results: Overall, 141 physicians responded (response rate: 10.4%). Physicians' confidence in PPC was low, although most reported a high need for PPC. Lack of workforce and facilities specialized in PPC (60.2%) and patients' or caregivers' negative recognition (55.9%) were reported as the main barriers to PPC implementation. Specialized PPC services in children's hospitals were preferred as the model of care (84.2%). Compared with nononcologists, oncologists showed higher confidence levels in decision making and communication with patients and families with poor prognosis (p = 0.041) and education and providing end-of-life care (p < 0.001). Furthermore, oncologists preferred earlier referrals than did nononcologists. Conclusions: To promote PPC provision and improve the quality of life of pediatric patients and their families, it is important to introduce PPC early into disease-modifying treatment at any level of health care. Developing education and training curricula regarding PPC for health care providers caring for children with severe illnesses is crucial.
Identifier
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<a href="http://doi.org/10.1089/jpm.2018.0584" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0584</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
Article
care behavior
Caregiver
Child
Controlled Study
December 2019 List
Decision Making
Education
Human
Journal of Palliative Medicine
Kim CH
Kim MS
Moon YJ
Multicenter Study
Oncologist
Palliative Therapy
pediatric patient
Perception
Prognosis
Quality Of Life
Questionnaire
Shin HY
Song IG
South Korea
Terminal Care
tertiary care center
workforce
Yu J
-
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Title
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2019 Developing World List
Text
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Developing World 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.414" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2018.10.414</a>
Dublin Core
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Title
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Frequency and Clinical Characteristics Associated With Pediatric Deaths In a Tertiary Hospital in a Developing Country - Opportunities for Pediatric Palliative Care
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
antibiotic therapy; artificial ventilation; brain death; cause of death; child; clinical feature; comfort; conference abstract; controlled study; demography; developing country; diagnosis; drug withdrawal; female; health care quality; hospital patient; human; human tissue; inotropism; life sustaining treatment; major clinical study; male; medical record; neonatal intensive care unit; newborn; palliative therapy; pediatric patient; resuscitation; retrospective study; sedation; statistical analysis; terminal care; tertiary care center
Creator
An entity primarily responsible for making the resource
Cuervo Suarez M I; Munoz M; Garcia X
Description
An account of the resource
Background: Colombia does not have knowledge about the clinical characteristics of pediatric deaths caused by life-threatening conditions and/or serious illness within the hospital setting.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.414" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.414</a>
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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
antibiotic therapy
Artificial Ventilation
Brain Death
Cause Of Death
Child
Clinical Feature
Comfort
conference abstract
Controlled Study
Cuervo Suarez M I
Demography
developing country
Developing World 2019 List
Diagnosis
Drug Withdrawal
Female
Garcia X
Health Care Quality
Hospital Patient
Human
Human Tissue
inotropism
Journal of Pain and Symptom Management
Life Sustaining Treatment
Major Clinical Study
Male
Medical Record
Munoz M
Neonatal Intensive Care Unit
Newborn
Palliative Therapy
pediatric patient
Resuscitation
Retrospective Study
Sedation
statistical analysis
Terminal Care
tertiary care center
-
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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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.2019.12.262" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.262</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Pediatric Palliative Telehealth Care from Hospital to Hospital: A Pilot Project (QI653)
Publisher
An entity responsible for making the resource available
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
child; clinical article; comfort; community hospital; conference abstract; consensus; education; feasibility study; female; follow up; human; human experiment; Likert scale; male; palliative therapy; primary health care; program feasibility; questionnaire; satisfaction; telehealth; tertiary care center; total quality management
Creator
An entity primarily responsible for making the resource
Evan E; Sandesara A; Mock K O
Description
An account of the resource
Objectives: * Explain a novel method for creating pediatric palliative care resources using telehealth technology. * Describe preliminary data demonstrating project feasibility and satisfaction.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.262" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.262</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
Child
Clinical Article
Comfort
community hospital
conference abstract
Consensus
Education
Evan E
Feasibility Study
Female
Follow Up
Human
Human Experiment
Journal of Pain and Symptom Management
Likert scale
Male
March 2020 List
Mock K O
Palliative Therapy
Primary Health Care
program feasibility
Questionnaire
Sandesara A
Satisfaction
Telehealth
tertiary care center
Total Quality Management
-
Dublin Core
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Title
A name given to the resource
2020 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 2020 List
URL Address
<a href="http://doi.org/10.1200/JOP.19.00313" target="_blank" rel="noreferrer noopener">http://doi.org/10.1200/JOP.19.00313</a>
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Title
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"It's more difficult...": Clinicians' experience providing palliative care to adolescents and young adults diagnosed with advanced cancer
Publisher
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Journal of Oncology Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
family; human; adult; female; male; perception; article; aged; Canada; adolescent; young adult; health personnel attitude; cancer palliative therapy; physician; psychiatrist; tertiary care center; experience; qualitative research; semi structured interview; thematic analysis; advanced cancer; radiation oncologist; care behavior; clinician parent communication difficulty; advanced practice nurse; theoretical study; medical oncologist; counter transference
Creator
An entity primarily responsible for making the resource
Avery J; Geist A; D'Agostino N M; Kawaguchi S K; Mahtani R; Mazzotta P; Mosher P J; al-Awamer A; Kassam A; Zimmermann C; Samadi M; Tam S; Srikanthan A; Gupta A
Description
An account of the resource
PURPOSE Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for health care providers (HCPs) in oncology. This study aims to explore the experiences of HCPs involved in introducing and providing palliative care caring for AYAs with advanced cancer and their families to understand the unique challenges HCPs experience. METHODS Using a qualitative descriptive design, semistructured interviews were conducted with medical and radiation oncologists, palliative care physicians, psychiatrists, and advanced practice nurses involved in caring for AYAs diagnosed with advanced cancer (N = 19). Interviews were transcribed verbatim and analyzed using thematic analysis in combination with constant comparative analysis and theoretical sampling. RESULTS There were 19 participants, 9 men and 10 women, with a median age of 45 years (range, 24-67 years). Six were palliative care physicians, 5 medical oncologists, 4 nurse practitioners, and 2 each radiation oncologists and psychiatrists. Overall, participants perceived the provision of palliative care for AYAs to be more difficult compared with older adults. Four themes emerged: (1) challenges helping AYAs/families to engage in and accept palliative care, (2) uncertainty regarding how to involve the family, (3) HCP sense of tragedy, and (4) HCP sense of emotional proximity. CONCLUSION Findings from this study support the development of dedicated training for HCPs involved in palliative care for AYA.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1200/JOP.19.00313" target="_blank" rel="noreferrer noopener">10.1200/JOP.19.00313</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
Adolescent
Adult
Advanced Cancer
Advanced Practice Nurse
Aged
al-Awamer A
Article
Avery J
Canada
Cancer Palliative Therapy
care behavior
clinician parent communication difficulty
counter transference
D'Agostino N M
Experience
Family
Female
Geist A
Gupta A
Health Personnel Attitude
Human
Journal of Oncology Practice
Kassam A
Kawaguchi S K
Mahtani R
Male
Mazzotta P
medical oncologist
Mosher P J
Oncology 2020 List
Perception
Physician
psychiatrist
Qualitative Research
radiation oncologist
Samadi M
Semi Structured Interview
Srikanthan A
Tam S
tertiary care center
Thematic Analysis
theoretical study
Young Adult
Zimmermann C
-
Dublin Core
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Title
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July 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
July List 2023
URL Address
<a href="http://doi.org/10.3390/children9030322" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9030322</a>
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Title
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"It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care
Publisher
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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
caregiver support; palliative therapy; parent; pediatric patient; adult; article; Australia; clinical monitoring; controlled study; emotion; emotional support; empowerment; family support; feasibility study; female; hospice care; human; male; Palliative Care; psychosocial care; public health; qualitative research; terminal care; tertiary care center; thematic analysis; volunteer
Creator
An entity primarily responsible for making the resource
Aoun SM; Stegmann R; Deleuil R; Momber S; Cuddeford L; Phillips MB; Lyon ME; Gill FJ
Description
An account of the resource
Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Method(s): The CSNAT (Paediatric) intervention consisted of two assessment visits with the paediatric palliative care team, 2-8 weeks apart, comprising conversations about sources for support in a tertiary children hospital in Western Australia (2018-2019). Audio-recorded telephone interviews were conducted with parents, and inductive thematic analysis was undertaken. Result(s): All 28 parents who were involved in the intervention agreed to be interviewed. Five themes summarised their experience: caregiving challenges, perceived gaps and feelings of isolation; the usefulness and practicality of the systematic assessment; emotional responses to self-reflection; feelings of validation and empowerment; and received supports responsive to their needs. Conclusion(s): Parents appreciated the value of this systematic approach in engaging them in conversations about their needs and solutions to address them. While clinical service support was affirmed by parents, they were left wanting in other areas of practical, psychosocial, and emotional support. Palliative care services need to build stronger partnerships with supportive community networks through compassionate communities volunteer models of care to address the non-clinical needs of these families.Copyright © 2022 by the authors. Licensee MDPI, Basel, Switzerland.
Identifier
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<a href="http://doi.org/10.3390/children9030322" target="_blank" rel="noreferrer noopener">10.3390/children9030322</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).
2022
Adult
Aoun SM
Article
Australia
Caregiver Support
Children
clinical monitoring
Controlled Study
Cuddeford L
Deleuil R
Emotion
emotional support
empowerment
family support
Feasibility Study
Female
Gill FJ
Hospice Care
Human
July List 2023
Lyon ME
Male
Momber S
Palliative Care
Palliative Therapy
Parent
pediatric patient
Phillips MB
psychosocial care
Public Health
Qualitative Research
Stegmann R
Terminal Care
tertiary care center
Thematic Analysis
Volunteer
-
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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August 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
August List 2023
URL Address
<a href="http://doi.org/10.1017/S1478951523000500" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951523000500</a>
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Title
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The Pediatric Serious Illness Conversation Program: Understanding challenges and experiences for clinicians after advance care planning training
Publisher
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Palliative and Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; article; human; neonatology; palliative therapy; advance care planning; awareness; physician; medical education; comfort; social worker; skill; tertiary care center; conversation; thematic analysis; nurse; hospice care; Advance Care Planning
Creator
An entity primarily responsible for making the resource
Doherty M; Gujral P; Frenette M; Lusney N; van Breemen C
Description
An account of the resource
OBJECTIVES: To explore experiences of pediatric clinicians participating in a serious illness communication program (SICP) for advance care planning (ACP), examining how the SICP supports clinicians to improve their communication and the challenges of implementing new communication tools into clinical practice. <br/>METHOD(S): A qualitative description study using individual interviews with a diverse group of pediatric clinicians who participated in 2.5-hour SICP training workshops at pediatric tertiary hospitals. Discussions were transcribed, coded, and arranged into overarching themes. Thematic analysis was conducted using interpretive description methodology. <br/>RESULT(S): Fourteen clinicians from 2 Canadian pediatric tertiary hospital settings were interviewed, including nurses (36%), physicians (36%), and social workers (29%), from the fields of neonatology (36%), palliative care (29%), oncology (21%), and other pediatric specialties (14%). Key themes included specific benefits of SICP, with subthemes of connecting with families, increased confidence in ACP discussions, providing tools to improve communication, and enhanced self-awareness and self-reflection. A second theme of perceived challenges emerged, which included subthemes of not having the conversation guide readily accessible, divergent team communication practices, and particular features of the clinical environment which limited the possibility of engaging in ACP discussions with parents. SIGNIFICANCE OF RESULTS: A structured program to enhance serious illness communication supports clinicians to develop skills and tools to increase their confidence and comfort in conducting conversations about end-of-life issues. Addressing challenges of adopting the newly learned communication practices, by providing access to digital SICP tools and conducting SICP training for clinical teams may further support clinicians to engage in ACP.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S1478951523000500" target="_blank" rel="noreferrer noopener">10.1017/S1478951523000500</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
Advance Care Planning
Article
August List 2030
Awareness
Child
Comfort
Conversation
Doherty M
Frenette M
Gujral P
Hospice Care
Human
Lusney N
Medical Education
Neonatology
Nurse
Palliative And Supportive Care
Palliative Therapy
Physician
Skill
Social Worker
tertiary care center
Thematic Analysis
van Breemen 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
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/archdischild-2023-rcpch.52" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.52</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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An Audit Analysing The Standard Of Patient Care And Service Provision In Sppc At A Tertiary Hospital And Hospice
Publisher
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Archives of Disease in Childhood
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; female; human; male; palliative therapy; clinical article; Hospices; patient referral; conference abstract; place of death; hospice care; patient coding; staff training; tertiary care center; sample size; manager; patient care
Creator
An entity primarily responsible for making the resource
Durrant E; Warlow T; Coulson-Smith P; Renton K
Description
An account of the resource
Objectives To identify gaps in SPPC provision at a patient and service level at the tertiary centre, local children's hospice and the region, compared to national frameworks and standards. Specialist paediatric palliative care (SPPC) aims to improve quality of life for children with life-limiting and life-threatening conditions. SPPC services were introduced at a tertiary hospital in 2012 and are in their infancy. As an underdeveloped speciality, there are gaps in provision across the region and little research has been carried out to identify them. Methods The last 15 children and young people (CYP) who died and were referred to tertiary SPPC services from the region were identified. Patient data were collected using hospital and hospice care databases and discussions with staff involved in patient care. Service provision data were collected by discussions with service managers. Results Only 80% of children and young people (CYP) had an Advance Care Plan (ACP). Of the CYP who required rapid transfer, none had a documented plan in an ACP. Preferred place of death was achieved in 67% of CYP. The average time from referral to SPPC to death was 38 days. Of the staff training standards, 80% were met at the tertiary centre and 91% at children's hospice. 73% of protocol standards were met by tertiary centre and 91% by the children's hospice. 56% of provision standards were met by tertiary centre and 69% by the children's hospice. 50% of the staffing standards were met at both services. Neither service met any of the data management and service improvement standards. Conclusion These data showed no major gaps in patient care standards, although improvement is needed to ensure all CYP have ACPs. Major gaps were identified in service improvement and data management in comparison to national standards. Providing a 24-hour SPPC service and improving data collection could address this. A limitation of this audit is the small sample size.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.52" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.52</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
Archives of Disease in Childhood
Child
Clinical Article
conference abstract
Coulson-Smith P
Durrant E
Female
Hospice Care
Hospices
Human
Male
manager
October List 2030
Palliative Therapy
Patient Care
patient coding
Patient Referral
Place Of Death
Renton K
Sample Size
staff training
tertiary care center
Warlow T
-
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 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
April List 2024
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2024.113930" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpeds.2024.113930</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment
Publisher
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Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
Child; child; adult; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; chronic disease; Socioeconomic Factors; gestational age; Referral and Consultation; ethnicity; Only Child; patient referral; tertiary care center; morbidity; mortality; neurologic examination; multidisciplinary team; Hispanic; medicaid; racism; primary medical care; special situation for pharmacovigilance; racial disparity; economic inequality
Creator
An entity primarily responsible for making the resource
Jones MN; Simpson SL; Beck AF; Cortezzo DE; Thienprayoon R; Corley AMS; Thomson J
Description
An account of the resource
Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality. Study design: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team. The outcome was referral to palliative care. The primary exposure was race, categorized as Black or non-Black to represent the impact of anti-Black racism. Additional exposures included ethnicity (Hispanic/non-Hispanic) and insurance status (Medicaid/non-Medicaid). Descriptive statistics, bivariate analyses, and multivariable logistic regression models were performed to assess associations between exposures and palliative care referral. Results: A total of 801 patients with HI-NI were included; 7.5% received a palliative referral. There were no differences in gestational age, sex, or ethnicity between patients who received a referral and those who did not. In multivariable analysis, adjusting for ethnicity, sex, gestational age, and presence of complex chronic conditions, Black children (aOR 0.47, 95% CI 0.26, 0.84) and children with Medicaid insurance (aOR 0.40, 95% CI 0.23, 0.70) each had significantly lower odds of palliative referral compared with their non-Black and non-Medicaid-insured peers, respectively. Conclusions: We identified inequities in pediatric palliative care referral among children with HI-NI by race and insurance status. Future work is needed to develop interventions, with families, aimed at promoting more equitable, antiracist systems of palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2024.113930" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2024.113930</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
Adult
April List 2024
Article
Beck AF
Child
Chronic Disease
Cohort Analysis
Controlled Study
Corley AMS
Cortezzo DE
economic inequality
Ethnicity
Female
Gestational Age
Hispanic
Human
Jones MN
Journal of Pediatrics
Major Clinical Study
Male
Medicaid
Morbidity
Mortality
Multidisciplinary team
Neurologic Examination
Only Child
Patient Referral
primary medical care
racial disparity
racism
Referral And Consultation
Retrospective Study
Simpson SL
Socioeconomic Factors
special situation for pharmacovigilance
tertiary care center
Thienprayoon R
Thomson J