1
40
30
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Title
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August 2022 List
Text
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Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1097/NJH.0000000000000884" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/NJH.0000000000000884</a>
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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/.
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"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit
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Journal of hospice and palliative nursing
Date
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2022
Subject
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child; terminal care; nursing; chronic disease; male; pain; human; intensive care; pediatric intensive care unit; perception; narrative; article; controlled study; interview; major clinical study; distress syndrome; comfort; cancer patient; quantitative analysis; malignant neoplasm; infant; sedation; memory
Creator
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Broden EG; Hinds PS; Werner-Lin AV; Curley MAQ
Description
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Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients' pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents' descriptions of their child's comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents' memories of their child's suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents' ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying children's pain and corresponding parental distress, as parents' memories of their dying child's suffering persist for years. Copyright © 2022 by The Hospice and Palliative Nurses Association. All rights reserved.
Identifier
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<a href="http://doi.org/10.1097/NJH.0000000000000884" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000884</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Article
August 2022 List
Broden EG
Cancer Patient
Child
Chronic Disease
Comfort
Controlled Study
Curley MAQ
Distress Syndrome
Hinds PS
Human
Infant
Intensive Care
Interview
Journal of Hospice and Palliative Nursing
Major Clinical Study
Male
Malignant Neoplasm
Memory
Narrative
Nursing
Pain
Pediatric Intensive Care Unit
Perception
quantitative analysis
Sedation
Terminal Care
Werner-Lin AV
-
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 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
August 2022 List
URL Address
<a href="http://doi.org/10.1370/afm.2822" target="_blank" rel="noreferrer noopener">http://doi.org/10.1370/afm.2822</a>
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A Mother's Tears: Contemplating Black Grief
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Annals of Family Medicine
Date
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2022
Subject
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grief; African American health; community/public health; parental loss; systemic racism
Creator
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Johnson KA
Description
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As we have traversed the last 2 years of the COVID-19 pandemic juxtaposed against an increased awakening to the realities of racial inequities in society and health care, the grief of Black individuals and communities has largely been underrecognized. This reflective essay explores the grief experience of Blacks in the wake of continual losses and acknowledges the impact of racism in these losses. I speak from my experiences as a Black mother, survivor of sibling loss, and pediatric palliative care pediatrician to examine this complex issue and what the medical community can do to stand with Black patients and families in their grief experience.
Identifier
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<a href="http://doi.org/10.1370/afm.2822" target="_blank" rel="noreferrer noopener">10.1370/afm.2822</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
African American health
Annals Of Family Medicine
August 2022 List
community/public health
Grief
Johnson KA
parental loss
systemic racism
-
Dublin Core
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Title
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August 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
August 2022 List
URL Address
<a href="http://doi.org/10.1016/j.semperi.2021.151524" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.semperi.2021.151524</a>
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Addressing bias and disparities in periviable counseling and care
Publisher
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Seminars in Perinatology
Date
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2022
Subject
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Humans; Infant, Newborn; Pregnancy; Female; Child; Perinatal Care; Bias; Counseling
Creator
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Tucker Edmonds B; Schmidt A; Walker VP
Description
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Addressing bias and disparities in counseling and care requires that we contend with dehumanizing attitudes, stereotypes, and beliefs that our society and profession holds towards people of color, broadly, and Black birthing people in particular. It also necessitates an accounting of the historically informed, racist ideologies that shape present-day implicit biases. These biases operate in a distinctly complex and damaging manner in the context of end-of-life care, which centers around questions related to human pain, suffering, and value. Therefore, this paper aims to trace biases and disparities that operate in periviable care, where end-of-life decisions are made at the very beginning of life. We start from a historical context to situate racist ideologies into present day stereotypes and tropes that dehumanize and disadvantage Black birthing people and Black neonates in perinatal care. Here, we review the literature, address historical incidents and consider their impact on our ability to deliver patient-centered periviable care.
Identifier
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<a href="http://doi.org/10.1016/j.semperi.2021.151524" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2021.151524</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
August 2022 List
Bias
Child
Counseling
Female
Humans
Infant, Newborn
Perinatal Care
Pregnancy
Schmidt A
Seminars in Perinatology
Tucker Edmonds B
Walker VP
-
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 2022 List
Text
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Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2022.10762" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2022.10762</a>
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Title
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Assessment of an Instrument to Measure Interdisciplinary Staff Perceptions of Quality of Dying and Death in a Pediatric Cardiac Intensive Care Unit
Publisher
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JAMA Network Open
Date
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2022
Subject
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Humans; Infant; Cross-Sectional Studies; Female; Male; Child; Intensive Care Units, Pediatric; Family; Death; Terminal Care
Creator
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Bailey V; Beke DM; Snaman JM; Alizadeh F; Goldberg S; Smith-Parrish M; Gauvreau K; Blume ED; Moynihan KM
Description
An account of the resource
IMPORTANCE: Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children and families at end of life. OBJECTIVES: To evaluate the Pediatric Intensive Care Unit Quality of Dying and Death (PICU-QODD) instrument and examine differences between disciplines and end-of-life circumstances. DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional survey included staff at a single center involved in pediatric CICU deaths from July 1, 2019, to June 30, 2021. EXPOSURES: Staff demographic characteristics, intensity of end-of-life care (mechanical support, open chest, or cardiopulmonary resuscitation [CPR]), mode of death (discontinuation of life-sustaining therapy, treatment limitation, comfort care, CPR, and brain death), and palliative care involvement. MAIN OUTCOMES AND MEASURES: PICU-QODD instrument standardized score (maximum, 100, with higher scores indicating higher quality); global rating of quality of the moment of death and 7 days prior (Likert 11-point scale, with 0 indicating terrible and 10, ideal) and mode-of-death alignment with family wishes. RESULTS: Of 60 patient deaths (31 [52%] female; median [IQR] age, 4.9 months [10 days to 7.5 years]), 33 (55%) received intense care. Of 713 surveys (72% response rate), 246 (35%) were from nurses, 208 (29%) from medical practitioners, and 259 (36%) from allied health professionals. Clinical experience varied (298 [42%] ≤5 years). Median (IQR) PICU-QODD score was 93 (84-97); and quality of the moment of death and 7 days prior scores were 9 (7-10) and 5 (2-7), respectively. Cronbach α ranged from 0.87 (medical staff) to 0.92 (allied health), and PICU-QODD scores significantly correlated with global rating and alignment questions. Mean (SD) PICU-QODD scores were more than 3 points lower for nursing and allied health compared with medical practitioners (nursing staff: 88.3 [10.6]; allied health: 88.9 [9.6]; medical practitioner: 91.9 [7.8]; P < .001) and for less experienced staff (eg, <2 y: 87.7 [8.9]; >15 y: 91, P = .002). Mean PICU-QODD scores were lower for patients with comorbidities, surgical admissions, death following treatment limitation, or death misaligned with family wishes. No difference was observed with palliative care involvement. High-intensity care, compared with low-intensity care, was associated with lower median (IQR) rating of the quality of the 7 days prior to death (4 [2-6] vs 6 [4-8]; P = .001) and of the moment of death (8 [4-10] vs 9 [8-10]; P =.001). CONCLUSIONS AND RELEVANCE: In this cross-sectional survey study of CICU staff, the PICU-QODD showed promise as a reliable and valid clinician measure of quality of dying and death in the CICU. Overall QODD was positively perceived, with lower rated quality of 7 days prior to death and variation by staff and patient characteristics. Our data could guide strategies to meaningfully improve CICU staff well-being and end-of-life experiences for patients and families.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2022.10762" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2022.10762</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Alizadeh F
August 2022 List
Bailey V
Beke DM
Blume ED
Child
Cross-sectional Studies
Death
Family
Female
Gauvreau K
Goldberg S
Humans
Infant
Intensive Care Units, Pediatric
JAMA Network Open
Male
Moynihan KM
Smith-Parrish M
Snaman JM
Terminal Care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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August 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
August 2022 List
URL Address
<a href="http://doi.org/10.1177/09697330221085776" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/09697330221085776</a>
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Title
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Caregivers' perception of teenagers' dignity in end of life stages: A phenomenological study
Publisher
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Nursing Ethics
Date
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2022
Subject
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qualitative study; Dignity; end of life stages; teenager
Creator
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Mohammadi F; Oshvandi K; Khodaveisi M; Fatemeh C; Tehrani TH; Khalili A; Kyle H
Description
An account of the resource
Introduction: Maintaining patient dignity in a caregiving environment is one of the most important moral responsibilities for caregivers. Nonetheless, there are vulnerable groups, specifically teenagers, who in their final stages of life are prone to their dignity being threatened. Moreover, dignity is an abstract concept and there is no studies done on teenagers' dignity in the final stages of life available in Iran.Purpose: The purpose of this study is to describe the caregivers' experiences regarding teenagers' dignity in the final stages of life.Research design: This study is a descriptive phenomenological qualitative research project. The data was collected using deep individual and semi-structured interviews as well as taking notes. The Colaizzi analysis method was used to analyze the data.Participants and research context: 22 caregivers working with teenagers in the final stages of life in a public health centers in Iran who had the criteria to enter the study were selected using a purposeful sampling method and invited to join the study from August 2018 to June 2019. The sampling continued until data saturation.Findings: The findings of the present study were presented in the form of three main themes including "private," "respecting individual identity," and "attention to teenagers' needs" and an additional eight categories.Ethical Considerations: The study's protocol was approved by the Research Ethics Committee of the Shiraz University of Medical Sciences and all ethical principles were followed throughout the study.Discussion and conclusion: Based on the present study from the caregivers' point of view, teenagers in their final stages of life required to be cared for and taught in an environment that their privacy was maintained and their individual identity was respected as well as getting attention from the caregivers and companions. In such situations, the teenagers felt calm and their dignity was maintained; therefore, providing a cultural, professional, and organizational setting where all the components of maintaining dignity in teenagers are supported and prioritized is necessary.
Identifier
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<a href="http://doi.org/10.1177/09697330221085776" target="_blank" rel="noreferrer noopener">10.1177/09697330221085776</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
August 2022 List
Dignity
end of life stages
Fatemeh C
Khalili A
Khodaveisi M
Kyle H
Mohammadi F
Nursing Ethics
Oshvandi K
Qualitative Study
teenager
Tehrani TH
-
Dublin Core
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Title
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August 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
August 2022 List
URL Address
<a href="http://doi.org/10.1016/j.anpede.2022.04.004" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.anpede.2022.04.004</a>
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Title
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Descriptive analysis of palliative sedation in a pediatric palliative care unit
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Anales de pediatria
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Pediatric palliative care; Palliative; Descriptive analysis; Sedation
Creator
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de Noriega I; Rigal Andres M; Martino Alba R
Description
An account of the resource
INTRODUCTION: Data surrounding palliative sedation in pediatric patients is scarce. Our objective is to assess the utility of creating a quality standard for pediatric palliative sedation. MATERIAL AND METHODS: A non-systematic review of the literature was used to find recommendations for pediatric palliative sedation, after which a definition was established based on three items: (1) indication, (2) consent, and (3) application. Afterwards, a retrospective analysis of palliative sedations applied by our unit over 5 years was performed. RESULTS: Out of 163 patients, palliative sedation was applied in 20, in 17 of them by our unit (14/20 males; median: 11.9 years). Twelve patients had oncological diseases, seven had neurological conditions, and one had a polymalformative syndrome. Nine patients had more than one symptom at the time of PS initiation with pain (11/17) and dyspnoea (10/17) being the most frequent. As for the definition, only three patients achieved a global completion, with the registration of the consent, specification of refractoriness and the establishment of an adequate initial sedative dose being the areas with more possible improvement. CONCLUSIONS: The application of the definition allowed us to analyze and find areas of improvement for our clinical practice of palliative sedation in pediatric patients.
Identifier
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<a href="http://doi.org/10.1016/j.anpede.2022.04.004" target="_blank" rel="noreferrer noopener">10.1016/j.anpede.2022.04.004</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Anales de Pediatría
August 2022 List
de Noriega Í
descriptive analysis
Martino Alba R
Palliative
Pediatric Palliative Care
Rigal Andrés M
Sedation
-
Dublin Core
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Title
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August 2022 List
Text
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Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.3390/children9050664" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children9050664</a>
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Documentation of Psychosocial Distress and Its Antecedents in Children with Rare or Life-Limiting Chronic Conditions
Publisher
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Children (Basel)
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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pediatrics; complex chronic conditions; rare diseases; psychosocial distress
Creator
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McCarthy SR; Golembiewski EH; Gravholt DL; Clark JE; Clark J; Fischer C; Mulholland H; Babcock K; Montori VM; Jones A
Description
An account of the resource
Children with rare or life-limiting chronic conditions and their families are at high risk of psychosocial distress. However, despite its impact on patient and family health and functioning, psychosocial distress and its antecedents may not routinely be captured in medical records. The purpose of this study was to characterize current medical record documentation practices around psychosocial distress among children with rare or life-limiting chronic conditions and their families. Medical records for patients with rare or life-limiting chronic conditions (n = 60) followed by a pediatric complex care program were reviewed. Study team members extracted both structured data elements (e.g., diagnoses, demographic information) and note narratives from the most recent visit with a clinician in the program. Psychosocial topics were analyzed using a mixed quantitative (i.e., frequency counts of topics) and qualitative approach. Topics related to psychosocial distress that were documented in notes included child and parent emotional problems, parent social support, sibling emotional or physical problems, family structure (e.g., whether parents were together), and financial concerns. However, 35% of notes lacked any mention of psychosocial concerns. Although examples of psychosocial concerns were included in some notes, none were present in over one-third of this sample. For both patients with rare or life-limiting chronic conditions and their caregivers, more active elicitation and standard documentation of psychosocial concerns may improve the ability of healthcare providers to identify and intervene on psychosocial concerns and their risk factors.
Identifier
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<a href="http://doi.org/10.3390/children9050664" target="_blank" rel="noreferrer noopener">10.3390/children9050664</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
August 2022 List
Babcock K
Children (Basel)
Clark J
Clark JE
Complex Chronic Conditions
Fischer C
Golembiewski EH
Gravholt DL
Jones A
McCarthy SR
Montori VM
Mulholland H
Pediatrics
psychosocial distress
Rare Diseases
-
Dublin Core
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Title
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August 2022 List
Text
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Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1038/s41436-021-01245-3" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41436-021-01245-3</a>
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Ethical challenges for a new generation of early-phase pediatric gene therapy trials
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Genetics in Medicine
Date
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2021
Subject
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pediatrics; ethics; human; review; clinical trial (topic); patient selection; patient engagement; risk benefit analysis; gene therapy; giant axonal neuropathy
Creator
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Iyer AA; Saade D; Bharucha-Goebel D; Foley AR; Averion GM; Paredes E; Gray S; Bonnemann CG; Grady C; Hendriks S; Rid A
Description
An account of the resource
After decades of setbacks, gene therapy (GT) is experiencing major breakthroughs. Five GTs have received US regulatory approval since 2017, and over 900 others are currently in development. Many of these GTs target rare pediatric diseases that are severely life-limiting, given a lack of effective treatments. As these GTs enter early-phase clinical trials, specific ethical challenges remain unresolved in three domains: evaluating risks and potential benefits, selecting participants fairly, and engaging with patient communities. Drawing on our experience as clinical investigators, basic scientists, and bioethicists involved in a first-in-human GT trial for an ultrarare pediatric disease, we analyze these ethical challenges and offer points to consider for future GT trials. Copyright © 2021, This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply.
Identifier
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<a href="http://doi.org/10.1038/s41436-021-01245-3" target="_blank" rel="noreferrer noopener">10.1038/s41436-021-01245-3</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
August 2022 List
Averion GM
Bharucha-Goebel D
Bonnemann CG
Clinical Trial (topic)
Ethics
Foley AR
Gene Therapy
Genetics in Medicine
giant axonal neuropathy
Grady C
Gray S
Hendriks S
Human
Iyer AA
Paredes E
patient engagement
Patient Selection
Pediatrics
Review
Rid A
Risk Benefit Analysis
Saade D
-
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 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
August 2022 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2021-322262" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2021-322262</a>
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Title
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Fifteen-minute consultation: How to communicate with parents who have a child on life support with no hope of recovery
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
2022
Subject
The topic of the resource
child; psychology; ethics; human; consultation; article; palliative therapy; trust; child psychiatry; counter transference; court; motivational interviewing; transference
Creator
An entity primarily responsible for making the resource
Swanepoel A
Description
An account of the resource
A child on life support with no hope of recovery is the worst nightmare for parents and for paediatricians. Unfortunately, some children have illnesses or injuries that are not compatible with life. Being in a vegetative state with no meaningful interaction does not safeguard children from feeling discomfort and pain. Letting nature take its course and allowing the child to die may well be the least worse option. However, this decision is fraught with difficulties for parents and for clinicians and can lead to unnecessary and painful conflict between them, even leading to court proceedings. In this paper, the impact of having a child on life support is discussed and recommendations are given in order to improve professional communication. It is hoped that an understanding of the impact on parents, cultural considerations, and the psychiatric concepts of 'denial', 'projection', the 'meta-level', 'transference', 'countertransference' and the techniques of 'motivational interviewing' will help clinicians prevent a breakdown of trust and improve doctor-parent relationships in these tragic cases. Copyright © Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.
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<a href="http://doi.org/10.1136/archdischild-2021-322262" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2021-322262</a>
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2022
Archives of Disease in Childhood
Article
August 2022 List
Child
Child Psychiatry
Consultation
counter transference
court
Ethics
Human
motivational interviewing
Palliative Therapy
Psychology
Swanepoel A
transference
Trust
-
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August 2022 List
Text
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August 2022 List
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<a href="http://doi.org/10.1111/jpc.16095" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jpc.16095</a>
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How can advance care planning tools help young people's voices be heard?
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Journal of Paediatrics and Child Health
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2022
Subject
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child; pediatrics; female; male; human; review; advance care planning; palliative therapy; human experiment; skill; legal aspect; pediatrician; conversation; tension; voice
Creator
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Trang J; Herbert A; Sansom-Daly UM
Description
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The integration of the child or young person (CYP) in conversations around advance care planning (ACP) is an important area of paediatric practice. These discussions provide CYP with the opportunity to voice their values, goals and preferences, enabling health-care professionals to ensure they are aligned with their planned course of treatment. This process, often undertaken within the context of the child's family, empowers children to participate in decisions and experience the dignity of self-determination. It also facilitates an increased understanding between the CYP and those involved in their care. The objectives of this paper are to highlight the importance of these conversations for paediatricians and identify barriers, both real and perceived, that may prevent them from engaging with a CYP about their preferences for future care including focusing more on discussion with the parents, and concern about or not having the skills to engage the child in such sensitive conversations. Triggers that can prompt clinicians to undertake ACP are also discussed. A further complexity is that after seeking their perspective, it may become apparent that the CYP may hold different views and perspectives to their parents and/or clinician. This review article will especially examine elements of end-of-life conversations that are critical to support the important goal of listening to the voice of the CYP. This includes considerations around timing, legal aspects, ethical tensions that arise when amplifying a child's voice, clinician/team-member roles, clinical process considerations, and the use of specific interventions and ACP tools to facilitate these conversations with CYP. Copyright © 2022 Paediatrics and Child Health Division (The Royal Australasian College of Physicians).
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<a href="http://doi.org/10.1111/jpc.16095" target="_blank" rel="noreferrer noopener">10.1111/jpc.16095</a>
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2022
Advance Care Planning
August 2022 List
Child
Conversation
Female
Herbert A
Human
Human Experiment
Journal of Paediatrics and Child Health
Legal Aspect
Male
Palliative Therapy
Pediatrician
Pediatrics
Review
Sansom-Daly UM
Skill
tension
Trang J
Voice
-
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August 2022 List
Text
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August 2022 List
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<a href="http://doi.org/10.1111/hsc.13870" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/hsc.13870</a>
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I feel like my house was taken away from me': Parents' experiences of having home adaptations for their medically complex, technology-dependent child
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Health and social care in the community
Date
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2022
Subject
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child; England; female; male; adult; human; Scotland; home care; Wales; patient care; article; controlled study; interview; preschool child; human experiment; wellbeing; conceptual framework; adolescent; thinking; decision making; father; mother; thematic analysis; heat; disabled person; chronic patient; biotechnology; regeneration
Creator
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Mitchell TK; Bray L; Blake L; Dickinson A; Carter B
Description
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Technology-dependent children are a sub-population of seriously ill children with life-limiting conditions who are being cared for at home by their families. Although home-based care has been the model of care for these children since the late 1980s, there is a paucity of literature about parents' experiences of having home adaptations made to enable their home to be a place of care for their child. Using the findings from auto-driven photo-elicitation interviews conducted between August 2017 and June 2018 with 12 parents (10 mothers and 2 fathers) who have a technology-dependent child (aged 5-25years) living in England, Scotland and Wales and David Seamon's five concepts of at-homeness (appropriation, at-easeness, regeneration, rootedness and warmth) as a conceptual framework, this paper addresses how parents' experienced home adaptations. Thematic analysis generated a meta-theme of 'Home needs to be a home for all family members' and the three key themes: (1) 'You just get told' and 'you're not involved'; (2) It's just the 'cheapest', 'quickest', 'short-term' approach; (3) Having 'control' and 'thinking things through.' The need to involve parents in decision-making about adaptations that are made to their home (family-informed design) is clear, not only from a cost-saving perspective for the state, but for creating an aesthetic and functional home that optimises health, well-being and feelings of at-homeness for the entire family. Copyright © 2022 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.
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<a href="http://doi.org/10.1111/hsc.13870" target="_blank" rel="noreferrer noopener">10.1111/hsc.13870</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Adolescent
Adult
Article
August 2022 List
biotechnology
Blake L
Bray L
Carter B
Child
Chronic Patient
Conceptual Framework
Controlled Study
Decision Making
Dickinson A
disabled person
England
Father
Female
Health And Social Care In The Community
Heat
Home Care
Human
Human Experiment
Interview
Male
Mitchell TK
Mother
Patient Care
Preschool Child
regeneration
Scotland
Thematic Analysis
thinking
Wales
Wellbeing
-
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Title
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August 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
August 2022 List
URL Address
<a href="http://doi.org/10.1016/j.japh.2022.04.005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.japh.2022.04.005</a>
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Title
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Identifying opportunities for pediatric medication therapy management in children with medical complexity
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Journal of the American Pharmacists Association
Date
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2022
Subject
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Child; Pediatrics; Medical complexity; Medication therapy management
Creator
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Marquez C; Thompson R; Feinstein JA; Orth LE
Description
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BACKGROUND: Despite potential benefits of medication therapy management (MTM) for complex pediatric patients, implementation of pediatric MTM services is rare. OBJECTIVES: To describe how a standardized pediatric MTM model identifies potential interventions and their impact on medication regimen complexity index (MRCI) scores in children with medical complexity (CMC) and polypharmacy. METHODS: This retrospective proof-of-concept study included pediatric patients receiving primary care in a large outpatient primary care medical home for CMC within a tertiary freestanding children's hospital from August 2020 to July 2021. Medication profiles of established patients aged 0-18 years with at least 5 active medications at the time of the index visit were assessed for medication-related concerns, potential interventions, and potential impact of proposed interventions on MRCI scores. RESULTS: Among 100 patients, an average of 3.4 ± 0.3 medication-related concerns was identified using the pediatric MTM model. Common medication-related concerns (>25% of patients) included inappropriate or unnecessary therapy, suboptimal therapy, undertreated symptom, adverse effect, clinically impactful drug-drug interaction, or duplication of therapy. A total of 97% had opportunities for 5.0 ± 2.9 potential interventions. Most common proposed interventions included drug discontinuation trial (69%), patient or caregiver education (55%), dosage form modification (51%), dose modification (49%), and frequency modification (46%). The mean baseline MRCI score was 32.6 (95% CI 29.3-35.8) among all patients. MRCI scores decreased by a mean of 4.9 (95% CI 3.8-5.9) after application of the theoretical interventions (P < 0.001). Mean potential score reduction was not significantly affected by patient age or number of complex chronic conditions. Potential impact of the proposed interventions on MRCI score was significantly greater in patients with higher baseline medication counts (P < 0.001). CONCLUSION: Most CMC would likely benefit from a pharmacist-guided pediatric MTM service. A standardized review of active medication regimens identified multiple medication-related concerns and potential interventions for nearly all patients. Proposed medication interventions would significantly reduce medication regimen complexity as measured by MRCI. Further prospective evaluation of a pharmacist-guided pediatric MTM service is warranted.
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<a href="http://doi.org/10.1016/j.japh.2022.04.005" target="_blank" rel="noreferrer noopener">10.1016/j.japh.2022.04.005</a>
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2022
August 2022 List
Child
Feinstein JA
Journal of the American Pharmacists Association
Marquez C
Medical Complexity
Medication therapy management
Orth LE
Pediatrics
Thompson R
-
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Title
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August 2022 List
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August 2022 List
URL Address
<a href="http://doi.org/10.3928/00220124-20220505-08" target="_blank" rel="noreferrer noopener">http://doi.org/10.3928/00220124-20220505-08</a>
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Title
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Impact of an Evidence-Based Pediatric Palliative Care Program on Nurses' Self-Efficacy
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Journal of Continuing Education in Nursing
Date
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2022
Subject
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Nurses; Evidence-based practice; Pediatric palliative; Professional development
Creator
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Hamre TJ; O'Shea ER; Hinderer KA; Mosha MH; Wentland BA
Description
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Background The purpose of this study was to determine the effect of a 1-day evidence-based pediatric palliative care continuing professional development program on nurses' and advanced practice registered nurses' perceived self-efficacy regarding palliative care. Method The revised Pediatric Palliative Care Questionnaire was administered to participants before and after a 71/2-hour program. A multimodal approach was used to teach topics specific to pediatric palliative care. Results Thirty-one participants completed questionnaires. Notably, most of the participants had provided palliative or end-of-life care, but few had previous education specific to pediatrics. The self-efficacy scores of the participants significantly increased after program attendance (Z = 3.53, p < .001). Conclusion Continuing professional development in pediatric palliative care improves nurses' and advanced practice registered nurses' confidence in their skills to provide this care. Findings of this study support the need for pediatric-specific education in nursing training programs and continuing professional development offerings. Continuing education may be the key to improving access to high-quality care for children living with serious illness and their families. <b>[J Contin Educ Nurs. 2022;53(6):264-272.]</b>.
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<a href="http://doi.org/10.3928/00220124-20220505-08" target="_blank" rel="noreferrer noopener">10.3928/00220124-20220505-08</a>
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2022
August 2022 List
Evidence-based Practice
Hamre TJ
Hinderer KA
Journal of Continuing Education in Nursing
Mosha MH
Nurses
O'Shea ER
pediatric palliative
Professional Development
Wentland BA
-
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Title
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August 2022 List
Text
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Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1016/j.pedhc.2022.05.005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pedhc.2022.05.005</a>
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Title
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Impact of Concurrent Hospice Care on Primary Care Visits Among Children in Rural Southern Appalachia
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Journal of Pediatric Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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child; female; male; human; article; retrospective study; health care planning; hospice care; medicaid; primary medical care
Creator
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Fornehed MLC; Svynarenko R; Lindley LC
Description
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Introduction: The purpose of the study was to test the effect of receiving pediatric concurrent hospice care on primary care visits. Method(s): This retrospective study was limited to pediatric decedents younger than 21 years with a hospice service claim from 2011 to 2013. Our outcome of interest concerned whether concurrent hospice care impacted primary care visits. Result(s): Of the 460 pediatric decedents in rural Southern Appalachia, 42% continued to visit their primary care provider during hospice enrollment, whereas 51% received concurrent hospice care. Concurrent hospice care was significantly related to pediatric primary care visits (beta = 2.31; p < .001). Discussion(s): Findings revealed that receipt of concurrent hospice care impacted primary care. Children in concurrent care were twice as likely to continue to receive care from their primary care provider. This finding is consistent with our hypothesis; however, the magnitude of the finding was unexpected given their residence in medically underserved areas. Copyright © 2022 National Association of Pediatric Nurse Practitioners
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<a href="http://doi.org/10.1016/j.pedhc.2022.05.005" target="_blank" rel="noreferrer noopener">10.1016/j.pedhc.2022.05.005</a>
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2022
Article
August 2022 List
Child
Female
Fornehed MLC
health care planning
Hospice Care
Human
Journal Of Pediatric Health Care
Lindley LC
Male
Medicaid
primary medical care
Retrospective Study
Svynarenko R
-
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August 2022 List
Text
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Long Term Support of Children with Life-Threatening Disease - Summary of the First Two Years of the Pediatric Palliative Care Service in Shaare Zedek Medical Center Jerusalem
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Harefuah
Date
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2022
Subject
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Children; Israel; Long-term care; Pediatric pallative care
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Freid I; Wajntraub R; Bartov S
Description
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INTRODUCTION: Palliative care involves management of medical, psychological, mental and social symptoms of children with life-threatening illnesses. AIMS: The article describes the organization and function of a multidisciplinary palliative care service within the pediatric hospital. The service supports children throughout their follow-up: in admission, in the community and in home care. METHODS: Retrospective summary of data from the hospital database. RESULTS: Over the last two years, seventy-five children with life-threatening illnesses were followed and treated by the palliative care team. Medical, nursing, psychosocial, educational and alternative medicine personnel were part of the team; 32 children died, 15 of them died in home hospice. Ten of the children were discharged to home hospice as an only alternative to prolonged admission. Financial coverage was provided by the health maintenance organizations. CONCLUSIONS: Hospital-based palliative care may provide long-term holistic support to the families and medical teams at the end of life. Long-term support of palliative care service is feasible and may be highly valuable to the children and the medical teams. DISCUSSION: Children at end-of-life require complicated multidisciplinary follow-up during admissions and at home. A hospital-based palliative care team - involving all caretakers, may improve holistic long-term support at the end of life.
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2022
August 2022 List
Bartov S
Children
Freid I
Harefuah
Israel
Long-Term Care
Pediatric pallative care
Wajntraub R
-
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Title
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August 2022 List
Text
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Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1186/s12904-022-00971-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-022-00971-y</a>
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Title
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Looking back: Identifying supportive care and unmet needs of parents of children receiving specialist paediatric palliative care from the bereavement perspective
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Children; Humans; Parents/psychology; Parents; Child; Cancer; Palliative Care/psychology; Palliative care; Grief; Bereavement; Supportive care needs; Neoplasms/psychology; Fin-ped ii; Support services
Creator
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Bronsema A; Theißen T; Oechsle K; Wikert J; Escherich G; Rutkowski S; Bokemeyer C; Ullrich A
Description
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BACKGROUND: This study examined care needs and utilisation of psychosocial support services among parents of children who had received specialist paediatric palliative care, as well as the relationship between need fulfilment and grief. Possible differences between parents of children who died of cancer versus a non-cancer disease were explored. METHODS: This exploratory study, conducted in two specialist paediatric palliative care facilities, included parents who had lost a child within a period of 0.5 to 8 years before this investigation. From the bereavement perspective, parents reported their needs during paediatric palliative care using the Family Inventory of Needs - Peadiatric II (FIN-PED II). Utilisation of psychosocial support services during paediatric palliative care and after the child's death, as well as potential barriers to accessing services were assessed. Grief symptoms were measured using the Inventory of Complicated Grief - German Version (ICG-D). RESULTS: Overall, 56 of 157 approached parents participated in the study. Mean time interval after the child's death was 3.2 years. Of the 17 FIN-PED II needs, 13 needs were reported to be very/extremely important to more than 75% of the parents each. Highest ranked needs related to asking questions at any time (100%), sincere care for the child (100%), and information about changes in the child's condition (98%). The highest ranked unmet needs related to hope (61%), interactions with siblings (41-42%), and trust in the health care system (39%). Comparisons showed no significant differences between parents whose child died of cancer (n = 18) versus a non-cancer disease (n = 38). During paediatric palliative care, 61% of the parents had accessed at least one psychosocial support service and 84% had done so after the child's death. The most prominent barriers for accessing services were sufficient informal support (38%), no subjective need (23%), and lack of time (20%). Overall, 52% of the parents showed noticeable symptoms for complicated grief (ICG-D > 25). A higher level of grief symptoms significantly correlated with a lower fulfilment of the need to say goodbye to the child (p = .042) with a medium correlational effect. CONCLUSIONS: Our findings may help to guide health care professionals in their assessment of parental needs and provision of support to parents during paediatric palliative care.
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<a href="http://doi.org/10.1186/s12904-022-00971-y" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-00971-y</a>
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2022
August 2022 List
Bereavement
BMC Palliative Care
Bokemeyer C
Bronsema A
Cancer
Child
Children
Escherich G
Fin-ped ii
Grief
Humans
Neoplasms/psychology
Oechsle K
Palliative Care
Palliative Care/psychology
Parents
Parents/psychology
Rutkowski S
Support services
Supportive care needs
Theißen T
Ullrich A
Wikert J
-
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August 2022 List
Text
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Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1016/j.semperi.2021.151525" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.semperi.2021.151525</a>
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Moral equivalence theory in neonatology
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Seminars in Perinatology
Date
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2022
Subject
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Humans; Decision Making; Infant, Newborn; Withholding Treatment; Morals; Neonatology
Creator
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Lin M; Vitcov GG; Cummings CL
Description
An account of the resource
This article explores the ethical concept of "the equivalence thesis" (ET), or the idea that withdrawing and withholding life sustaining treatments are morally equivalent practices, within neonatology. We review the historical origins, theory, and clinical rationale behind ET, and provide an analysis of how ET relates to literature that describes neonatal mode of death and healthcare professional and parent attitudes towards end-of-life care. While ET may serve as an ethical tool to optimize resource allocation in theory, its clinical utility is limited given the complexity of end-of-life care decisions.
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<a href="http://doi.org/10.1016/j.semperi.2021.151525" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2021.151525</a>
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2022
August 2022 List
Cummings CL
Decision Making
Humans
Infant, Newborn
Lin M
Morals
Neonatology
Seminars in Perinatology
Vitcov GG
Withholding Treatment
-
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August 2022 List
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August 2022 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2022-003544" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2022-003544</a>
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Paediatric advance care planning in life-limiting conditions: Scoping review of parent experiences
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BMJ Supportive and Palliative Care
Date
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2022
Subject
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child; pediatrics; female; male; comparative study; Cinahl; human; quality of life; systematic review; review; advance care planning; Medline; decision making; conversation; care behavior; participatory research; sense of coherence
Creator
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Bennett HE; Duke S; Richardson A
Description
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Background: Advance care planning is considered best practice for children and young people with life-limiting conditions but there is limited evidence how parents' perceive, understand and engage with the process. Aim(s): To understand parents' experience of advance care planning for a child or young person with a life-limiting condition. Design(s): Scoping review, theoretically informed by Family Sense of Coherence. Parents' experience was conceptualised in terms of meaningfulness, comprehensibility and manageability. Data sources: Electronic databases Medline, CINAHL and PyschINFO were searched for studies published between 1990 and 2021, using MeSH and broad-base terms. Result(s): 150 citations were identified and screened; 15 studies were included: qualitative (n=10), survey (n=3) and participatory research (n=2). Parents' experience of advance care planning was contextualised by their family values and beliefs, needs and goals and the day-to-day impact of caring for their child and family. They valued conversations, which helped them to maximise their child's quality of life and minimise their suffering. They preferred flexible, rather than definitive decisions about end-of-life care and treatment. Conclusion(s): Advance care planning which solely focuses on treatment decisions is at odds with parents' concerns about the current and future impact of illness on their child and family. Parents want advance care planning for their child to reflect what matters to them as a family. Future longitudinal and comparative studies are needed to understand the influence of advance care planning on parental decision-making over time and how social, cultural and contextual nuances influence parental experience. Copyright © Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2022-003544" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2022-003544</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Advance Care Planning
August 2022 List
Bennett HE
BMJ Supportive and Palliative Care
care behavior
Child
Cinahl
Comparative Study
Conversation
Decision Making
Duke S
Female
Human
Male
Medline
participatory research
Pediatrics
Quality Of Life
Review
Richardson A
sense of coherence
Systematic Review
-
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Title
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Text
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August 2022 List
URL Address
<a href="http://doi.org/10.12968/ijpn.2022.28.5.208" target="_blank" rel="noreferrer noopener">http://doi.org/10.12968/ijpn.2022.28.5.208</a>
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Pictures as mementos after perinatal death: a case study
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International Journal of Palliative Nursing
Date
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2022
Subject
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Bereavement; Perinatal death; Grief; Case study
Creator
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Jesus RCA; Benute G; Bertolassi N; Barbosa T; Bolibio R; Figueiredo F; Setubal MS; Gibelli MA; Gomes A; Ferreira R; Francisco R; Bernardes L
Description
An account of the resource
BACKGROUND: The grieving process following perinatal loss caused by life-limiting conditions presents some particularities associated with the family's culture and the symbolic relationship with the deceased. OBJECTIVE: To reflect on the symbolic meaning attributed to mementos, particularly pictures taken immediately after birth. METHOD: Case study-a qualitative analysis of the data collected through semidirected interviews. RESULTS: Of the three women that took part in the study, one woman chose not to take a picture but opted to take home the hat with her son's name on it that was provided as a regular procedure for every birth at the maternity centre. During the interview, she questioned her decision. The two other women took pictures and still look at them affectionate. One of the women keeps the picture of her child in a shrine at home, thus attributing a symbolic religious meaning to the whole experience that alleviates her pain. CONCLUSION: The symbolic meaning attributed to pictures of the deceased can help parents process grief.
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<a href="http://doi.org/10.12968/ijpn.2022.28.5.208" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2022.28.5.208</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
August 2022 List
Barbosa T
Benute G
Bereavement
Bernardes L
Bertolassi N
Bolibio R
Case Study
Ferreira R
Figueiredo F
Francisco R
Gibelli MA
Gomes A
Grief
International Journal of Palliative Nursing
Jesus RCA
Perinatal Death
Setubal MS
-
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August 2022 List
Text
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August 2022 List
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.05.020" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2022.05.020</a>
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Polypharmacy in children and young people with life-limiting conditions from 2000-2015: a repeated cross-sectional study in England
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Journal of pain and symptom management
Date
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2022
Subject
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child; pediatrics; England; chronic disease; female; male; adult; human; young adult; age; article; controlled study; major clinical study; nervous system; cross-sectional study; cohort analysis; observational study; prevalence; polypharmacy; congenital disorder
Creator
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Fraser LK; Gibson-Smith D; Jarvis S; Papworth A; Neefjes V; Hills M; Doran T; Taylor J
Description
An account of the resource
CONTEXT: Polypharmacy is often appropriate for children with life-limiting conditions but is associated with an increase in hospitalisations and inappropriate prescribing, and can affect the quality of life of children and their families as they manage complex medication schedules. Despite this, little is known about polypharmacy in this population. OBJECTIVE(S): To describe the prevalence and patterns of polypharmacy in children with a life-limiting condition in a nationally representative cohort in England. METHOD(S): Observational study of children (age 0-19 years) with a life-limiting condition in a national database from 2000 to 2015. Common definitions of polypharmacy were used to determine polypharmacy prevalence in each year based on unique medications and regular medications. Hierarchical regression analyses were used to explore factors associated with polypharmacy. RESULT(S): Data on 15,829 individuals were included. Each year 27-39% of children were prescribed >=5 unique medications and 8-12% were prescribed >=10.Children with a respiratory (OR 7.6, 95%CI 6.4-9.0), neurological (OR 2.8, 95%CI 2.4-3.2) or metabolic (OR 2.2, 95%CI 1.7-2.8) condition were more likely than those with a congenital condition to experience polypharmacy. Increasing age, being diagnosed with a LLC under 1 year of age, having >1 life-limiting or chronic condition or living in areas of higher deprivation were also associated with higher prevalence of polypharmacy. CONCLUSION(S): Children with life-limiting conditions have a high prevalence of polypharmacy and some children are at greater risk than others. More research is needed to understand and address the factors that lead to problematic polypharmacy in this population. Copyright © 2022. Published by Elsevier Inc.
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.05.020" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.05.020</a>
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2022
Adult
Age
Article
August 2022 List
Child
Chronic Disease
Cohort Analysis
congenital disorder
Controlled Study
Cross-sectional Study
Doran T
England
Female
Fraser LK
Gibson-Smith D
Hills M
Human
Jarvis S
Journal of Pain and Symptom Management
Major Clinical Study
Male
Neefjes V
Nervous System
Observational Study
Papworth A
Pediatrics
Polypharmacy
Prevalence
Taylor J
Young Adult
-
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Title
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Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1542/hpeds.2021-006263" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/hpeds.2021-006263</a>
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Racial and Ethnic Disparities in Medical Complexity and In-Hospital Death Among US-Born VLBW Infants
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Hospital Pediatrics
Date
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2022
Subject
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Humans; Infant; Retrospective Studies; Cross-Sectional Studies; Hospital Mortality; Birth Weight; Ethnicity
Creator
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Hannan KE; Bourque SL; Palmer C; Tong S; Hwang SS
Description
An account of the resource
BACKGROUND AND OBJECTIVE: To assess the racial and ethnic disparity in the prevalence of complex chronic conditions (CCC) and/or in-hospital death among US-born very low birth weight (VLBW, <1500 g) infants. METHODS: This retrospective, cross-sectional analysis of discharge data from the Kids' Inpatient Database, included VLBW infants born in US hospitals in 2009 and 2012 (n = 554825, weighted n = 573693) exlcuding those with missing demographics. The main outcome was CCC or death. Multiple logistic regression modeling estimated the association of various characteristics with CCC or death, considering race and ethnicity. RESULTS: There was heterogeneity in the association of insurance status and hospital region and experiencing CCC or death when compared across races and ethnicities. Infants of all races and ethnicities had higher odds of CCC or death if they had an operative procedure, were outborn, or had a birth weight of <500 g or 500 g to 999 g compared with 1000 g to 1499 g. Non-Hispanic Black infants <500 g, however, had the highest odds of CCC or death compared with those 1000 g to 1499 g (adjusted odds ratio 67.2, 95% confidence interval, 48.6-93.0), 2.3 times higher than the odds for non-Hispanic White infants (AOR 2.32, 95% confidence interval, 1.57-3.42). CONCLUSIONS: Insurance and region were associated with increased prevalence of CCC or death in certain racial and ethnic groups. Additionally, non-Hispanic Black infants <500 g had >2.3 times the odds of CCC or death compared with non-Hispanic White infants, relative to infants 1000 g to 1499 g. Additional investigation is needed to understand the drivers of these disparities.
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<a href="http://doi.org/10.1542/hpeds.2021-006263" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2021-006263</a>
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2022
August 2022 List
Birth Weight
Bourque SL
Cross-sectional Studies
Ethnicity
Hannan KE
Hospital Mortality
Hospital Pediatrics
Humans
Hwang SS
Infant
Palmer C
Retrospective Studies
Tong S
-
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Title
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August 2022 List
Text
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August 2022 List
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<a href="http://doi.org/10.1177/27527530211059435" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/27527530211059435</a>
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Title
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Reiki Therapy for Very Young Hospitalized Children Receiving Palliative Care
Publisher
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Journal of Pediatric Hematology/Oncology Nursing
Date
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2022
Subject
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Children; Hospitalization; Palliative care; Reiki
Creator
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Thrane SE; Williams E; Grossoehme DH; Friebert S
Description
An account of the resource
Background: Approximately half of children receiving palliative care are under age five; however, there are a few studies exploring palliative care interventions for this population. The purpose of this study was to evaluate the effects of Reiki on pain, stress, heart, and respiratory rates, oxygenation, and quality of life (QoL) in hospitalized young children receiving palliative care services.
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<a href="http://doi.org/10.1177/27527530211059435" target="_blank" rel="noreferrer noopener">10.1177/27527530211059435</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
August 2022 List
Children
Friebert S
Grossoehme DH
Hospitalization
Journal of Pediatric Hematology/Oncology Nursing
Palliative Care
Reiki
Thrane SE
Williams E
-
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Title
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August 2022 List
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August 2022 List
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<a href="http://doi.org/10.1177/08258597221098496" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/08258597221098496</a>
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Reimagining Perinatal Palliative Care: A Broader Role for Support in the Face of Uncertainty
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Journal of palliative care
Date
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2022
Subject
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female; grief; ethics; human; perinatal care; uncertainty; article; palliative therapy; comfort; fetus; patient referral; infant; bereavement support; decision making
Creator
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Lord S; Williams R; Pollard L; Ives-Baine L; Wilson C; Goodman K; Rapoport A
Description
An account of the resource
Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty. For clinicians who counsel families in these circumstances, determining which ones might benefit from early palliative care referral can be challenging. We assert that all women carrying a fetus diagnosed with a life-threatening condition for which comfort-focused care at birth is one ethically reasonable option ought to be offered palliative care support prenatally, regardless of the chosen plan of care. Early palliative care support can contribute to informed decision making, enhance psychological and grief support, and provide opportunities for care planning that includes ways to respect and honor the life of the fetus or baby, however long it may be.
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<a href="http://doi.org/10.1177/08258597221098496" target="_blank" rel="noreferrer noopener">10.1177/08258597221098496</a>
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2022
Article
August 2022 List
Bereavement Support
Comfort
Decision Making
Ethics
Female
Fetus
Goodman K
Grief
Human
Infant
Ives-Baine L
Journal Of Palliative Care
Lord S
Palliative Therapy
Patient Referral
Perinatal Care
Pollard L
Rapoport A
Uncertainty
Williams R
Wilson C
-
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Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.3390/children9050642" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children9050642</a>
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The COVID-19 Pandemic: Early Ripple Effects in Pediatric Palliative Care
Publisher
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Children (Basel)
Date
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2022
Subject
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pediatric; burnout; resilience; pediatric palliative care; Covid-19; SARS-CoV-2; global
Creator
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Bustamante LM; Okhuysen-Cawley R; Downing J; Connor SR; Muckaden MA; Phillips M; Icaza A; Garzon N; Nakashima Y; Morgan K; Mauser D; Grunauer M
Description
An account of the resource
Palliative care, which aims to provide comprehensive, interdisciplinary, holistic care to children, adolescents and adults with life-threatening, and ultimately life-limiting conditions, is a discipline that has emerged as an integral component of healthcare systems throughout the world. Although the value of life-affirming palliative care (PC) has been shown across many domains, funding and acceptance of palliative care teams have been variable: some hospital systems have free-standing, dedicated interdisciplinary teams while, in many instances, palliative care services are provided "pro bono" by individuals with a special interest in the discipline, who provide PC in addition to other responsibilities. In this article, we hope to highlight some of the observations on the early effects of the COVID-19 pandemic on the provision of PC in children.
Identifier
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<a href="http://doi.org/10.3390/children9050642" target="_blank" rel="noreferrer noopener">10.3390/children9050642</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
August 2022 List
Burnout
Bustamante LM
Children (Basel)
Connor SR
COVID-19
Downing J
Garzon N
global
Grunauer M
Icaza A
Mauser D
Morgan K
Muckaden MA
Nakashima Y
Okhuysen-Cawley R
Pediatric
Pediatric Palliative Care
Phillips M
Resilience
SARS-CoV-2
-
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Title
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August 2022 List
Text
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Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.03.006" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2022.03.006</a>
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Title
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The Design of a Data Management System for a Multicenter Palliative Care Cohort Study
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Journal of Pain and Symptom Management
Date
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2022
Subject
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Pediatric; Cohort study; Data management; Pallative care
Creator
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Nye RT; Hill DL; Carroll KW; Boyden JY; Katcoff H; Griffis H; Campos D; Hall M; Wolfe J; Feudtner C
Description
An account of the resource
CONTEXT: Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. OBJECTIVE: To describe the design and lessons learned regarding the data management system for the Pediatric Palliative Care Research Network's Shared Data and Research (SHARE) project, a multicenter prospective cohort study of children receiving pediatric palliative care (PPC) and their parents, and to describe important attributes of this system, with specific considerations for the design of future studies. METHODS: The SHARE study consists of 643 PPC patients and up to two of their parents who enrolled from April 2017 to December 2020 at seven children's hospitals across the United States. Data regarding demographics, patient symptoms, goals of care, and other characteristics were collected directly from parents or patients at 6 timepoints over a 24-month follow-up period and stored electronically in a centralized location. Using medical record numbers, primary collected data was linked to administrative hospitalization data containing diagnostic and procedure codes and other data elements. Important attributes of the data infrastructure include linkage of primary and administrative data; centralized availability of multilingual questionnaires; electronic data collection and storage system; time-stamping of instrument completion; and a separate but connected study administrative database used to track enrollment. CONCLUSIONS: Investigators planning future multicenter prospective cohort studies can consider attributes of the data infrastructure we describe when designing their data management system.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.03.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.03.006</a>
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2022
August 2022 List
Boyden JY
Campos D
Carroll KW
cohort study
Data Management
Feudtner C
Griffis H
Hall M
Hill DL
Journal of Pain and Symptom Management
Katcoff H
Nye RT
Pallative care
Pediatric
Wolfe J
-
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Title
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August 2022 List
Text
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August 2022 List
URL Address
<a href="http://doi.org/10.34197/ats-scholar.2021-0089IN" target="_blank" rel="noreferrer noopener">http://doi.org/10.34197/ats-scholar.2021-0089IN</a>
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Title
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The Gift of Life: Interprofessional Organ Donation Curriculum in Pediatric Critical Care
Publisher
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ATS Scholar
Date
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2022
Subject
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organ donation; curriculum; interprofessional education
Creator
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Bursac I; Mtaweh H; Lee D; Mema B
Description
An account of the resource
BACKGROUND: The number of patients awaiting organ transplantation is high, particularly in Pediatrics, in which available organs are scarce. To maximize organ donation opportunities and to provide quality end-of-life care, clinicians from all professions must be familiar with the process. There continues to be important gaps in core competencies regarding organ donation, including donor criteria and eligibility, timing of referral to organ procurement organizations, neurological determination of death, donation after cardiocirculatory death, and donor management. These gaps affect healthcare providers across multiple professions and are significant barriers to donation. OBJECTIVE: We describe an interprofessional curriculum that is designed to teach Pediatric Critical Care Medicine (PCCM) clinicians about the process of organ donation and supporting the families through that process. The approach of families is the purview of organ procurement organization, and the support of the families through the process remains with PCCM clinicians. METHODS: Kern's six-step approach to curriculum development was used to develop, implement, and evaluate an interprofessional curriculum on organ donation in PCCM for physicians, nurses, and respiratory therapists. RESULTS: Problem formulation and both general and targeted needs assessments were performed through a comprehensive literature review, including review of national guidelines and Royal College of Physicians and Surgeons of Canada training objectives. Learning objectives and educational strategies were then outlined using two educational frameworks. After implementation, the curriculum was evaluated using learner self-assessments with a retrospective pre-post design. CONCLUSION: After identifying educational gaps contributing to barriers to organ donation, an interprofessional curriculum was developed to increase competency in multiple aspects of organ donation, including team communication and collaboration, with the ultimate goal of promoting a culture of donation while ensuring it is part of quality end-of-life care.
Identifier
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<a href="http://doi.org/10.34197/ats-scholar.2021-0089IN" target="_blank" rel="noreferrer noopener">10.34197/ats-scholar.2021-0089IN</a>
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2022
ATS Scholar
August 2022 List
Bursac I
Curriculum
Interprofessional education
Lee D
Mema B
Mtaweh H
Organ Donation
-
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Title
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August 2022 List
Text
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Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1177/00099228221099135" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/00099228221099135</a>
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Title
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The Impact of Caring for Children With Severe Neurological Impairment on Clinicians
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Clinical Pediatrics
Date
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2022
Subject
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pediatric; palliative care; education; disability; burnout; workforce
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Bogetz JF; Trowbridge A; Jonas D; Root MC; Mullin J; Hauer J
Description
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Clinicians face many challenges in caring for children with severe neurological impairment (SNI). This study aimed to understand expert clinician perspectives on the personal impact of caring for children with SNI to highlight the challenges and potential solutions by underscoring the aspects of care that can be sustaining. Twenty-five clinicians participated including physicians (n = 8, 32%), social workers (n = 5, 20%), nurses/nurse practitioners (n = 5, 20%), case managers (n = 3, 12%), developmental therapists (n = 2, 8%), and other psychosocial clinicians (n = 2, 8%). Clinicians represented a variety of specialties including complex care/hospitalists (n = 10, 19%), palliative care (n = 7, 13%), and critical care (n = 6, 12%). Thematic content analysis revealed 3 major themes: (1) worries and challenges; (2) positive impact from being present; and (3) personal growth and meaning-making. Many clinicians described the ways listening, examining biases, learning about family perspectives, and normalizing the need for emotional processing helped them to understand their patients, families, and themselves more deeply.
Identifier
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<a href="http://doi.org/10.1177/00099228221099135" target="_blank" rel="noreferrer noopener">10.1177/00099228221099135</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
August 2022 List
Bogetz JF
Burnout
Clinical Pediatrics
Disability
Education
Hauer J
Jonas D
Mullin J
Palliative Care
Pediatric
Root MC
Trowbridge A
workforce
-
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Title
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August 2022 List
Text
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Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1007/s00246-022-02919-8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00246-022-02919-8</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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The Surprise Question as a Trigger for Primary Palliative Care Interventions for Children with Advanced Heart Disease
Publisher
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Pediatric Cardiology
Date
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2022
Subject
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Pediatric palliative care; Advanced care planning; Advanced heart disease; Pediatric cardiology; Prognostication; Surprise question
Creator
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Alizadeh F; Morell E; Hummel K; Wu Y; Wypij D; Matthew D; Esteso P; Moynihan K; Blume ED
Description
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There is significant uncertainty in describing prognosis and a lack of reliable entry criteria for palliative care studies in children with advanced heart disease (AHD). This study evaluates the utility of the surprise question-"Would you be surprised if this child died within the next year?"-to predict one-year mortality in children with AHD and assess its utility as entry criteria for future trials. This is a prospective cohort study of physicians and nurses caring for children (1 month-19 years) with AHD hospitalized ≥ 7 days. AHD was defined as single ventricle physiology, pulmonary vein stenosis or pulmonary hypertension, or any cardiac diagnosis with signs of advanced disease. Primary physicians were asked the surprise question and medical record review was performed. Forty-nine physicians responded to the surprise question for 152 patients. Physicians responded "No, I would not be surprised if this patient died" for 54 (36%) patients, 20 (37%) of whom died within 1 year, predicting one-year mortality with 77% sensitivity, 73% specificity, 37% positive predictive value, and 94% negative predictive value. Patients who received a "No" response had an increased 1-year risk of death (hazard ratio 7.25, p < 0.001). Physician years of experience, subspecialty, and self-rated competency were not associated with the accuracy of the surprise question. The surprise question offers promise as a bedside screening tool to identify children with AHD at high risk for mortality and help physicians identify patients who may benefit from palliative care and advance care planning discussions.
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<a href="http://doi.org/10.1007/s00246-022-02919-8" target="_blank" rel="noreferrer noopener">10.1007/s00246-022-02919-8</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
advanced care planning
Advanced Heart Disease
Alizadeh F
August 2022 List
Blume ED
Esteso P
Hummel K
Matthew D
Morell E
Moynihan K
Pediatric Cardiology
Pediatric Palliative Care
prognostication
Surprise question
Wu Y
Wypij D
-
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 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
August 2022 List
URL Address
<a href="http://doi.org/10.3390/children9050641" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children9050641</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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Using Communication Tools to Explore Young Siblings' Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs
Publisher
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Children (Basel)
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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palliative care; communication; bereavement; siblings; emotions
Creator
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Kreicbergs U; Nilsson S; Jenholt Nolbris M; Lövgren M
Description
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Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care needs, and to determine what is important to them. Nine siblings, aged 6-14 years, were interviewed using four different communication tools: See-Hear-Do pictures, including the empty body as a separate element, Bear cards, and words originating from previous sibling research. Data were analyzed using conventional content analysis. Five categories emerged concerning aspects that the siblings described about their situation and things that they found important: being part of a special family; school-a place for leisure, friends, and learning; relentless feelings of guilt and self-blame; losses and separations; and awareness of death-not if, but when. Siblings of children with rare diseases expressed an awareness that their brother or sister would die, although still felt they were part of a special, happy family. Siblings of children with palliative care needs due to an accident described relentless feelings of self-blame and guilt. The needs of siblings may vary depending on the condition that resulted in the ill sibling's palliative care needs.
Identifier
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<a href="http://doi.org/10.3390/children9050641" target="_blank" rel="noreferrer noopener">10.3390/children9050641</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
August 2022 List
Bereavement
Children (Basel)
Communication
Emotions
Jenholt Nolbris M
Kreicbergs U
Lövgren M
Nilsson S
Palliative Care
Siblings
-
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 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
August 2022 List
URL Address
<a href="http://doi.org/10.1111/petr.14217" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/petr.14217</a>
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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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Why is corneal donation so rare in children's hospices? A survey of multidisciplinary team members attitudes, knowledge, practice, and experience
Publisher
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Pediatr Transplant
Date
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2022
Subject
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Humans; Attitude of Health Personnel; Health Knowledge, Attitudes, Practice; Child; Patient Care Team; Surveys and Questionnaires; Hospices; attitude; children's hospice; corneal donation; Cornea
Creator
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Giugni C; Cecchi C; Santucci C; Giometto S; Lucenteforte E; Ricci Z
Description
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BACKGROUND: Corneal donation is a rare event among pediatric patients dying in children's hospices in Italy. Previous research suggests that lack of knowledge and negative attitude of Health Care Professionals (HCPs) are the most relevant factors for low donation rates in hospice, rather than patient ineligibility or public refusal. We conducted a national survey to explore children's hospice staff's knowledge and attitude toward corneal donation, to survey HCPs confidence in discussing the subject with patients and families, to investigate whether staff members receive specific training about corneal donation and its potential impact on the willingness to raise the topic with patients and families. METHODS: An anonymous web-based survey with multiple-choice responses was delivered to the team members of seven Italian children's hospices to test their knowledge and attitude about corneal donation. RESULTS: Of the seven children's hospices approached, four agreed to participate with a response rate of 48.5%. Among respondents, 70% declared that they had not received specific training about corneal donation. Results of statistical analysis showed that there were no significant differences in responses between trained and non-trained staff and among the different professionals (nurses, doctors, psychologists, AND social workers) regarding confidence in discussing the subject with patients and families. CONCLUSIONS: In our sample of HCPs working in Italian children's hospices, there was no difference in self-reported trust between professionals who reported receiving specific cornea donation training and those who did not. It is remarkable that training on corneal donation was endorsed by a minority of the sample.
Identifier
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<a href="http://doi.org/10.1111/petr.14217" target="_blank" rel="noreferrer noopener">10.1111/petr.14217</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
Attitude
Attitude Of Health Personnel
August 2022 List
Cecchi C
Child
Children's Hospice
Cornea
corneal donation
Giometto S
Giugni C
Health Knowledge, Attitudes, Practice
Hospices
Humans
Lucenteforte E
Patient Care Team
Pediatr Transplant
Ricci Z
Santucci C
Surveys And Questionnaires