1
40
82
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Text
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Citation List Month
September 2017 List
Notes
<p>Using Smart Source Parsing Jul doi: 1111/jan</p>
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Title
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The Changing Nature Of Relationships Between Parents And Healthcare Providers When A Child Dies In The Paediatric Intensive Care Unit
Publisher
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Journal Of Advanced Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Bereaved Parent; End-of-life; Grounded Theory; Healthcare Provider; Interaction; Nurse; Paediatric Intensive Care Unit; Relationship
Creator
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Butler A E; Hall H; Copnell B
Description
An account of the resource
AIM: To explore bereaved parents' interactions with healthcare providers when a child dies in a paediatric intensive care unit. BACKGROUND: Though most children admitted to a paediatric intensive care unit will survive, 2-5% will die during their stay. The parents of these children interact and form relationships with numerous healthcare staff during their child's illness and death. Though previous studies have explored the parental experience of child death in intensive care generally, the nature of their relationships with healthcare providers during this time remains unknown. DESIGN: This study used a constructivist grounded theory approach. METHODS: Data were collected via semi-structured, audio-recorded interviews with 26 bereaved parents from 4 paediatric intensive care units over 18 months in 2015-2016. Constant comparative analysis and theoretical memos were used to analyse the data. FINDINGS: The theory 'Transitional togetherness' demonstrates the changing nature of the parent-healthcare provider relationship across three key phases of the parents' journey. Phase one, 'Welcoming expertise', focuses on the child's medical needs, with the healthcare provider dominant in the relationship. Phase two, 'Becoming a team', centres around the parents' need to recreate a parental role and work collaboratively with healthcare providers. Finally, 'Gradually disengaging' describes the parents' desire for the relationship to continue after the child's death as a source of support until no longer needed. CONCLUSIONS: Findings from this study offer valuable insights into the changing nature of the parent-healthcare provider relationship and highlight the key foci of the relationship at each stage of the parental journey. This article is protected by copyright. All rights reserved.
Identifier
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DOI: 10.1111/jan.13401
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Bereaved Parent
Butler A E
Copnell B
end-of-life
Grounded Theory
Hall H
Healthcare Provider
Interaction
Journal Of Advanced Nursing
Nurse
Paediatric Intensive Care Unit
Relationship
September 2017 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
September 2017 List
URL Address
https://www.ncbi.nlm.nih.gov/pubmed/28751157
Notes
<p>Using Smart Source Parsing Jul pii: S0884-2175( doi: 10.1016/j.jogn.2017.06.006</p>
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Title
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End-of-life Decision Making For Parents Of Extremely Preterm Infants
Publisher
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Journal Of Obstetric, Gynecologic, And Neonatal Nursing: Jognn
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
End-of-life; Extremely Preterm Infants; Parental Involvement; Qualitative Research; Shared Decision Making
Creator
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Hendriks M J; Abraham A
Description
An account of the resource
OBJECTIVE: To explore parental attitudes and values in the end-of-life decision-making process of extremely preterm infants (gestational age < 28 weeks). DESIGN: Hermeneutically oriented qualitative research design with in-depth interviews. SETTING: Level III NICU in Switzerland. PARTICIPANTS: Purposive sample of seven couples, five mothers, and one father (20 parents). METHODS: Qualitative content analysis was used to categorize and interpret themes from parents' narratives. RESULTS: Parents described factors that affected the decision-making process in satisfactory or unsatisfactory ways. Transparent information, empathy, and honesty enhanced communication between parents and the health care team. Lack of transparent information and continuous support decreased satisfaction. The level of involvement in decisions differed by setting. Most parents made decisions regarding lung maturation and/or initiation of care in the delivery room. Parent participation in the NICU was experienced differently. Contrary to the hospital's ethical model, few parents recalled being involved in the decision-making process. Some parents experienced a dissociative state of mind that hindered their involvement, whereas others felt actively involved. CONCLUSIONS: Our results suggest the need for careful and continuous professional evaluation of parents' wishes about involvement in the decision-making process, along with descriptions of medical facts and treatment options. A lack of attentive listening and dialogue may cause paternalistic decision trajectories.
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DOI: 10.1016/j.jogn.2017.06.006
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Abraham A
end-of-life
Extremely Preterm Infants
Hendriks M J
Journal of obstetric, gynecologic, and neonatal nursing: JOGNN
Parental Involvement
Qualitative Research
September 2017 List
shared decision making
-
Text
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Citation List Month
September 2017 List
URL Address
https://www.ncbi.nlm.nih.gov/pubmed/28684928
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Title
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End-of-life Transitions And Hospice Utilization For Adolescents: Does Having A Usual Source Of Care Matter?
Publisher
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Journal Of Hospice And Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Adolescent; End-of-life; Hospice; Pediatric; Transition
Creator
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Keim-Malpass J; Lindley LC
Description
An account of the resource
Adolescents with life-limiting illnesses have intensive end-of-life trajectories and could benefit from initiation of hospice services. The medical home model, which includes having a usual source of primary care, may help facilitate quality outcomes at the end-of-life for adolescents. The purpose of this study was to determine the relationship between having a usual source of primary care on hospice utilization and end-of-life transitions among adolescents between 15-20 years with a life-limiting illness. A retrospective cohort design used 2007-2010 California Medicaid claims data (n=585). Our dependent variables were hospice utilization (i.e., hospice enrollment, hospice length of stay) and the independent variable was usual source of primary care. Multivariate regression techniques including least squares regression, multivariate logistic regression, and negative binomial regression were used in the analysis of the relationship between usual source of primary care and hospice utilization and end-of-life transitions. Ten percent of our sample utilized hospice services. Having a usual source of primary care was associated with an increase in hospice enrollment, hospice length of stay, and end-of-life transitions. Adolescents with a cancer diagnosis were more likely to enroll in hospice services. For adolescents at the end of life, having a usual source of primary care had a significant impact on hospice enrollment and length of stay. This study is among the first to demonstrate a relationship between primary care and hospice use among this vulnerable population.
Identifier
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DOI: 10.1097/NJH.0000000000000361
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adolescent
end-of-life
Hospice
Journal of Hospice and Palliative Nursing
Keim-Malpass J
Lindley LC
Pediatric
September 2017 List
Transition
-
Text
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Citation List Month
October 2017 List
Notes
<p>1541-3764<br />Tenzek, Kelly E<br />Nickels, Bonnie M<br />Journal Article<br />United States<br />Omega (Westport). 2017 Jan 1:30222817726258. doi: 10.1177/0030222817726258.</p>
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Title
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End-of-life In Disney And Pixar Films: An Opportunity For Engaging In Difficult Conversation
Publisher
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Omega
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Cinemeducation; Disney And Pixar; End-of-life; Film
Creator
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Tenzek K E; Nickels B M
Description
An account of the resource
This study expanded upon previous scholarship by examining end-of-life (EOL) depictions and messages of death within Disney and Pixar animated films. We argue Disney and Pixar depictions of EOL and death can provide critical opportunities for discussing death and dying processes with children and adults alike. A content analysis of 57 movies resulted in a total of 71 character deaths. These instances of death became the discourse used for analysis. The EOL discourse was coded based on five categories (character status, depiction of death, death status, emotional reaction, and causality). After quantitative analysis, the films were qualitatively analyzed. Four themes emerged from analysis, unrealistic moments, managing EOL, intentions to kill, and transformation and spiritual connection. Discussion of results, limitations, and directions for future research are included.
Identifier
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10.1177/0030222817726258
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Cinemeducation
Disney And Pixar
end-of-life
Film
Nickels B M
October 2017 List
Omega
Tenzek K E
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2017 List
URL Address
http://www.ncbi.nlm.nih.gov/pubmed/28359212
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Title
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A Randomized Clinical Trial Of Adolescents With Hiv/aids: Pediatric Advance Care Planning
Publisher
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Aids Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Advance Care Planning; Congruence; Decision-making; End-of-life; Palliative Care; Pediatric
Creator
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Lyon Maureen E; D'Angelo Lawrence J; Dallas Ronald H; Hinds S; Garvie A; Wilkins Megan L; Garcia A; Briggs Linda; Flynn Patricia M; Rana Sohail R; Cheng Yao Iris; Wang Jichuan
Description
An account of the resource
The objective of this study is to determine if pediatric advance care planning (pACP) increases adolescent/family congruence in end-of-life (EOL) treatment preferences longitudinally. Adolescents aged 14-21 years with HIV/AIDS and their families were randomized (N = 105 dyads) to three-60-minute sessions scheduled one week apart: either the pACP intervention (survey administered independently, facilitated conversation with adolescent and family present, completion of legal advance directive document with adolescent and family present) or an active control (developmental history, safety tips, nutrition and exercise education). This longitudinal, single-blinded, multi-site, randomized controlled trial was conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities. The Statement of Treatment Preferences measured adolescent/family congruence in EOL treatment preferences at immediately following the facilitated pACP conversation (Session 2), and at 3-month post-intervention. The mean age of adolescent participants was 18 years (range 14-21 years); 54% were male; and 93% were African-American. One-third had an AIDS diagnosis. Immediately post-intervention the Prevalence Adjusted Bias Adjusted Kappa showed substantial treatment preference agreement for pACP dyads compared to controls (High burden/low chance of survival, PABAK = 0.688 vs. 0.335; Functional impairment, PABAK = 0.687 vs. PABAK= 0.34; Mental impairment, PABKA = 0.717 vs. 0.341). Agreement to limit treatments was greater among intervention dyads than controls (High burden: 14.6% vs. 0%; Functional impairment = 22.9% vs. 4.4%; and Mental impairment: 12.5% vs. 4.4%). Overall treatment preference agreement among pACP dyads was high immediately post-intervention, but decreased over time. In contrast, treatment agreement among control dyads was low and remained low over time. As goals of care change over time with real experiences, additional pACP conversations are needed.
Identifier
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10.1080/09540121.2017.1308463
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Advance Care Planning
AIDS care
Briggs Linda
Cheng Yao Iris
congruence
D'Angelo Lawrence J
Dallas Ronald H
Decision Making
end-of-life
Flynn Patricia M
Garcia A
Garvie A
Hinds S
June 2017 List
Lyon Maureen E
Palliative Care
Pediatric
Rana Sohail R
Wang Jichuan
Wilkins Megan L
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2017 List
Dublin Core
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Title
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‘no Second Chance’ – Junior Neonatal Nurses Experiences Of Caring For An Infant At The End-of-life And Their Family
Publisher
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Journal Of Neonatal Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Anxieties; End-of-life; Infants; Junior Nurses; Neonatal Unit (nnu)
Creator
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Nurse Sharon; Price Jayne
Description
An account of the resource
Death of an infant is acutely stressful for parents and professionals. Little is known about junior nurses' experiences providing end-of-life care in Neonatal units (NNU). This study aimed to better understand junior nurses' experiences providing end-of-life care in NNU. Neonatal nurses (n = 12) with less than 3 years experience participated in a focus group. Nominal Group Technique (NGT) was used to build consensus around the challenges faced, alongside suggested developments in improving future care provision. Primary analysis involved successive rounds of ranking and decision-making whilst secondary analysis involved thematic analysis. All issues, whether environmental, professional or social appeared driven by an awareness on the part of nurses, that there was no ‘second chance’ which created a huge pressure to ‘get if right’ for the infants and families. Regarding future care 2 areas of improvement identified were ‘Education and Training’ and Support. This paper unpacks these findings making recommendations for practice.
Identifier
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10.1016/j.jnn.2016.04.008
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Anxieties
end-of-life
Infants
Journal of Neonatal Nursing
June 2017 List
Junior nurses
Neonatal unit (NNU)
Nurse Sharon
Price Jayne
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2017 List
URL Address
http://www.ncbi.nlm.nih.gov/pubmed/28436742
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Title
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Training Pediatric Fellows In Palliative Care: A Pilot Comparison Of Simulation Training And Didactic Education
Publisher
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Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Communication; End-of-life; Medical Education; Palliative Care; Pediatric Fellows; Pediatrics; Simulation
Creator
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Brock Katharine E; Cohen Harvey J; Sourkes Barbara M; Good Julie J; Halamek Louis P
Description
An account of the resource
BACKGROUND: Pediatric fellows receive little palliative care (PC) education and have few opportunities to practice communication skills. OBJECTIVE: In this pilot study, we assessed (1) the relative effectiveness of simulation-based versus didactic education, (2) communication skill retention, and (3) effect on PC consultation rates. DESIGN: Thirty-five pediatric fellows in cardiology, critical care, hematology/oncology, and neonatology at two institutions enrolled: 17 in the intervention (simulation-based) group (single institution) and 18 in the control (didactic education) group (second institution). Intervention group participants participated in a two-day program over three months (three simulations and videotaped PC panel). Control group participants received written education designed to be similar in content and time. MEASUREMENTS: (1) Self-assessment questionnaires were completed at baseline, post-intervention and three months; mean between-group differences for each outcome measure were assessed. (2) External reviewers rated simulation-group encounters on nine communication domains. Within-group changes over time were assessed. (3) The simulation-based site's PC consultations were compared in the six months pre- and post-intervention. RESULTS: Compared to the control group, participants in the intervention group improved in self-efficacy (p = 0.003) and perceived adequacy of medical education (p < 0.001), but not knowledge (p = 0.20). Reviewers noted nonsustained improvement in four domains: relationship building (p = 0.01), opening discussion (p = 0.03), gathering information (p = 0.01), and communicating accurate information (p = 0.04). PC consultation rate increased 64%, an improvement when normalized to average daily census (p = 0.04). CONCLUSIONS: This simulation-based curriculum is an effective method for improving PC comfort, education, and consults. More frequent practice is likely needed to lead to sustained improvements in communication competence.
Identifier
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10.1089/jpm.2016.0556
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Brock Katharine E
Cohen Harvey J
Communication
end-of-life
Good Julie J
Halamek Louis P
Journal of Palliative Medicine
June 2017 List
Medical Education
Palliative Care
pediatric fellows
Pediatrics
Simulation
Sourkes Barbara M
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2017 List
Notes
<p>1091-7683<br />Russell, Ceilidh Eaton<br />Widger, Kimberley<br />Beaune, Laura<br />Neville, Alexandra<br />Cadell, Susan<br />Steele, Rose<br />Rapoport, Adam<br />Rugg, Maria<br />Barrera, Maru<br />Journal Article<br />United States<br />Death Stud. 2017 May 25. doi: 10.1080/07481187.2017.1334009.</p>
URL Address
<a href="http://dx.doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer">http://dx.doi.org/10.1080/07481187.2017.1334009</a>
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Title
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Siblings' Voices: A Prospective Investigation Of Experiences With A Dying Child
Publisher
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Children; End-of-life; Palliative Care; Pediatrics; Sibling
Creator
An entity primarily responsible for making the resource
Russell CE; Widger K; Beaune L; Neville A; Cadell S; Steele R; Rapoport A; Rugg M; Barrera M
Description
An account of the resource
Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal qualitative study over two years using interpretive descriptive methodology to understand siblings' perspectives when a brother or sister was dying at home or in hospital. The insights from the 10 siblings revealed complex experiences, both personal and with the ill child, their families, and peers. These experiences were paradoxically sources of strain and of support, revealing the importance of validation and normalization in assisting siblings to successfully navigate the experience.
Identifier
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<a href="https://doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer">10.1080/07481187.2017.1334009</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Barrera M
Beaune L
Cadell S
Children
Death studies
end-of-life
July 2017 List
Neville A
Palliative Care
Pediatrics
Rapoport A
Rugg M
Russell CE
Sibling
Steele R
Widger K
-
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 2017 List
URL Address
<a href="http://acc.aacnjournals.org/content/28/2/124.long" target="_blank" rel="noreferrer">http://acc.aacnjournals.org/content/28/2/124.long</a>
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Title
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Improving Health Care Provider Communication in End-of-Life Decision-Making
Publisher
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Aacn Advanced Critical Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Communication; Critically Ill; End-of-life; Family Meeting; Intensive Care
Creator
An entity primarily responsible for making the resource
Wilson T; Haut C; Akintade B
Description
An account of the resource
Critical care providers are responsible for many aspects of patient care, primarily focusing on preserving life. However, nearly 40% of patients who are admitted to an adult critical care unit will not survive. Initiating a conversation about end-of-life decision-making is a daunting task. Often, health care providers are not trained, experienced, or comfortable facilitating these conversations. This article describes a quality improvement project that identified current views on end-of-life communication in the intensive care unit and potential barriers that obstruct open discussion, and offering strategies for improvement.
©2017 American Association of Critical-Care Nurses.
Identifier
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<a href="https://doi.org/10.4037/aacnacc2017302" target="_blank" rel="noreferrer">10.4037/aacnacc2017302</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Aacn Advanced Critical Care
Akintade B
August 2017 List
Communication
Critically Ill
end-of-life
Family Meeting
Haut C
Intensive Care
Wilson T
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2017 List
Notes
<p>1938-2715<br />Kim, Myo-Jing<br />ORCID: http://orcid.org/0000-0002-8296-3382<br />Lee, Jin-Hyeok<br />Lee, Hyoung-Doo<br />Journal Article<br />United States<br />Am J Hosp Palliat Care. 2017 Jan 1:1049909117730024. doi: 10.1177/1049909117730024.</p>
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Title
A name given to the resource
Recent Changes in End-of-Life Decisions for Newborns in a Korean Hospital
Publisher
An entity responsible for making the resource available
American Journal Of Hospice And Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Decision-making; End-of-life; Ethics; Neonatal Care; Neonatal Intensive Care Unit; Newborns
Creator
An entity primarily responsible for making the resource
Kim MJ; Lee JH; Lee HD
Description
An account of the resource
INTRODUCTION: Despite recent advances in neonatal intensive care in Korea, few studies exist on the end-of-life decisions in newborns. In this study, we sought to examine the status of end-of-life decisions in neonates, changes over time, and affecting factors. METHODS: This is a retrospective study of neonates who died between 2001 and 2015 in the neonatal intensive care unit of Dong-A University Hospital in Busan. The types of end-of-life decisions were divided into active resuscitation, withholding treatment, and withdrawing treatment. The study period was divided into 3 time frames using 5-year intervals to investigate changes over time. To identify the associated factors, we analyzed the demographic and clinical characteristics of the neonates and their parents using the chi2 test and independent t test. RESULTS: Of the neonatal deaths included in the analysis (n = 222), active resuscitation, withholding treatment, and withdrawing treatment groups accounted for 73.4%, 25.2%, and 1.4% of cases, respectively. When comparing changes over time, between period 1 (2001-2005), 2 (2006-2010), and 3 (2011-2015), the proportion of active resuscitation decreased significantly, from 80.9% to 60.8%, while that of nonactive resuscitation increased significantly from 19.1% to 39.2%. The factors associated with end-of-life decisions were the clinical condition of the neonate at the time of death, rather than general characteristics or socioeconomic factors. CONCLUSIONS: In Korea, changes in the decisions on end-of-life care in neonates are shifting from active resuscitation to nonactive resuscitation based on clinical conditions.
Identifier
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10.1177/1049909117730024
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
American Journal of Hospice and Palliative Medicine
Decision Making
end-of-life
Ethics
Kim MJ
Lee HD
Lee JH
Neonatal Care
Neonatal Intensive Care Unit
Newborns
November 2017 List
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2017 List
URL Address
<a href="https://doi.org/10.1177/1049732317721476" target="_blank" rel="noreferrer">https://doi.org/10.1177/1049732317721476</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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"You Can Only Give Warmth to Your Baby When It's Too Late": Parents' Bonding With Their Extremely Preterm and Dying Child.
Publisher
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Qualitative Health Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Embodied Parenthood; End-of-life; Extreme Prematurity; Neonatal Intensive Care Unit; Palliative And Bereavement Care; Parental Bonding; Qualitative Content Analysis; Switzerland
Creator
An entity primarily responsible for making the resource
Abraham A; Hendriks MJ
Description
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This study on end-of-life decisions in extremely preterm babies shows that the parents under study experience a multitude of stressors due to the immediate separation after birth, the alienating setting of the neonatal intensive care unit (NICU), the physical distance to the child, medical uncertainties, and upcoming decisions. Even though they are considered to be parents (assigned parenthood), they cannot act as primary caregivers. Instead, they depend on professional instructions for access and care. Embodied parenthood can be experienced only at the end-of-life, that is, during the dying trajectory and after the child's death. Professionally supporting parents during this compressed process (from assigned and distant to embodied parenthood) contributes fundamentally to their perception of being a family and supports their mourning. This calls for the further establishment of palliative and bereavement care concepts in neonatology.
Identifier
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<a href="https://doi.org/10.1177/1049732317721476" target="_blank" rel="noreferrer">10.1177/1049732317721476</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Abraham A
December 2017 List
Embodied Parenthood
end-of-life
Extreme Prematurity
Hendriks MJ
Neonatal Intensive Care Unit
Palliative And Bereavement Care
Parental Bonding
Qualitative Content Analysis
Qualitative Health Research
Switzerland
-
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Title
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Oncology
Text
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Oncology 2017 List
URL Address
<a href="http://doi.org/10.1089/jayao.2017.0032" target="_blank" rel="noreferrer">http://doi.org/10.1089/jayao.2017.0032</a>
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Title
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Advance Care Planning Discussions with Adolescent and Young Adult Cancer Patients Admitted to a Community Palliative Care Service: A Retrospective Case-Note Audit
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Journal Of Adolescent And Young Adult Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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Advance Care Planning; Cardiopulmonary Resuscitation; Do Not Resuscitate; End-of-life
Creator
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Fletcher S; Hughes R; Pickstock S; Auret K
Description
An account of the resource
PURPOSE: Adolescents and young adults (AYA) with cancer are a cohort requiring specialized healthcare models to address unique cognitive and physical challenges. Advance care planning (ACP) discussions likely warrant age-appropriate adaptation, yet, there is little Australian research data available to inform best practice for this group. The goal of this work is to inform future models of ACP discussions for AYA. METHODS: Retrospective medical record audit of AYA patients and an adult comparison group, diagnosed with a malignancy and referred to a community hospice service, in Western Australia, in the period between January 1, 2012 and December 1, 2015. Information was collected regarding end-of-life care discussions, documentation of agreed plan of care, and care received. RESULTS: Twenty-seven AYA and 37 adult medical records were reviewed. Eighteen (66.7%) AYA patients died at home, compared with 19 (51.4%) adults (p = 0.028). Desire to pursue all available oncological therapies, including clinical trials, was documented for 14 (51.9%) AYA patients compared with 9 (24.3%) of the adult group (p = 0.02). Eleven AYA patients (40.7%) received chemotherapy during the last month of life compared with two (5.4%) adults (p = 0.001). CONCLUSIONS: The results indicate that end-of-life care preferences for this unique cohort may differ from those of the adult population and need to be captured and understood. An ACP document incorporating a discussion regarding goals of care, preferred location of care, preference for place of death, and consent to future intervention, including cardiopulmonary resuscitation and prompts for review, could assist in pursuing this objective.
Identifier
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<a href="http://doi.org/10.1089/jayao.2017.0032" target="_blank" rel="noreferrer">10.1089/jayao.2017.0032</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Advance Care Planning
Auret K
Cardiopulmonary Resuscitation
Do Not Resuscitate
end-of-life
Fletcher S
Hughes R
Journal Of Adolescent And Young Adult Oncology
Oncology 2017 List
Pickstock S
-
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Title
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February 2018 List
Text
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Citation List Month
February 2018 List
URL Address
<a href="http://doi.org/10.1016/j.ridd.2017.12.015" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ridd.2017.12.015</a>
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Title
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Considering quality of life in end-of-life decisions for severely disabled children
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Research In Developmental Disabilities
Date
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2017
Subject
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Child; disabled children; End-of-life; Healthcare professional; Intellectual Disability; Only Child; parent; Qualitative Research; quality of life
Creator
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Zaal-Schuller IH; Willems DL; Ewals Fvpm; van Goudoever JB; de Vos MA
Description
An account of the resource
BACKGROUND: End-of-life decisions (EoLDs) are very difficult to make. How parents and physicians incorporate quality of life (QoL) considerations into their end-of-life decision making (EoLDM) for children with profound intellectual and multiple disabilities (PIMD) remains unknown. AIMS: To determine which elements contribute to QoL according to parents and physicians, how QoL is incorporated into EoLDM and how parents and physicians discuss QoL considerations in the Netherlands. METHODS: Semi-structured interviews were conducted with the physicians and parents of 14 children with PIMD for whom an EoLD had been made within the past two years. RESULTS: Parents and physicians agreed on the main elements that contribute to QoL in children with PIMD. The way in which QoL was incorporated differed slightly for different types of decisions. Parents and physicians rarely discussed elements contributing to the child's QoL when making EoLDS. CONCLUSIONS: and Implications Although QoL was highly important during EoLDM for children with PIMD, parents and physicians did not fully explore the elements that contribute to the child's QoL when they made EoLDs. We recommend the development of a communication tool that will help parents and physicians discuss elements that contribute to QoL and the consequences these elements have for upcoming decisions.
Identifier
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<a href="http://doi.org/10.1016/j.ridd.2017.12.015" target="_blank" rel="noreferrer">10.1016/j.ridd.2017.12.015</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Child
de Vos MA
Disabled Children
end-of-life
Ewals Fvpm
February 2018 List
Healthcare Professional
Intellectual Disability
Only Child
Parent
Qualitative Research
Quality Of Life
Research in Developmental Disabilities
van Goudoever JB
Willems DL
Zaal-Schuller IH
-
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Title
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January 2019 List
Text
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January 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2018-001538" target="_blank" rel="noreferrer noopener"> http://doi.org/ 10.1136/bmjspcare-2018-001538</a>
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Title
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Palliative care in a tertiary neonatal intensive care unit: a 10-year review
Publisher
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BMJ Supportive & Palliative
Date
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2018
Subject
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palliation; neonatal; end-of-life; palliative; neonatology; integrative
Creator
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Ng SKF; Keenan N; Swart S; Berry MJ
Description
An account of the resource
OBJECTIVES: When active treatment is no longer in the best interests of the patient, redirection of care to palliation is an important transition. We review, within a tertiary neonatal intensive care unit (NICU), the journey leading to the decision to redirect care, the means of symptom control and the provision of psychosocial supports. METHODS: A retrospective review of all 166 deaths of NICU-affiliated patients during a 10- year epoch. Medical notes were reviewed, and the provision and type of, or barriers to, effective palliative care was defined. RESULTS: Extreme prematurity accounted for 71/145 (49%) of deaths with relatively high proportions of Maori 17/71 (25%) and Pacific Islanders 9/71 (13%). Almost all eligible infants received some form of palliation. Transition from curative to palliative care was refused by the family in a single case. Median time from decision to redirect care until first recorded action was 80 min, and median time from action until death was 60 min. The majority of infants received some form of comfort cares, (128/166) most commonly morphine (94/128, 73%). Three infants had documented seizure activity or respiratory distress but did not receive any pharmacological intervention. Psychosocial supports were offered in 98/145 (67%) of cases, but only 71/145 (49%) of families were formally offered an opportunity to discuss the infant's clinical course after their death. CONCLUSIONS: Clinical documentation of care plans was often incomplete, potentially leading to inconsistent delivery of care, increased risk of symptom breakthrough and/or inadequate psychosocial supports for family. Formal individualised palliative care plans are under development to standardise documentation and improve therapeutic and psychosocial interventions available to the infant and their family.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2018-001538" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001538</a>
2018
Berry MJ
BMJ Supportive & Palliative
end-of-life
integrative
January 2019 List
Keenan N
Neonatal
Neonatology
Ng SKF
palliation
Palliative
Swart S
-
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Title
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2018 Developing World List
Text
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Citation List Month
Developing World 2018 List
URL Address
<a href="http://doi.org/10.1016/j.pedn.2018.10.014" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1016/j.pedn.2018.10.014</a>
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Title
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End-of-life Decisions at Neonatal Intensive Care Units: Jordanian Nurses Attitudes and Viewpoints of Who, When, and How
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Journal of Pediatric Nursing
Date
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2018
Subject
The topic of the resource
End-of-life; Neonates; Ethical dilemma; Jordan; Neonatal nurses; Neonates' intensive care
Creator
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Abdel Razeq NM
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<a href="http://doi.org/10.1016/j.pedn.2018.10.014" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2018.10.014</a>
2018
Abdel Razeq NM
Developing World 2018 List
end-of-life
Ethical dilemma
Jordan
Journal of Pediatric Nursing
Neonatal Nurses
Neonates
Neonates' intensive care
-
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Title
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April 2019 List
Text
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Citation List Month
April 2019 List
URL Address
<a href="http://doi.org/10.1111/petr.13373" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1111/petr.13373</a>
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Title
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Communication about prognosis and end-of-life in pediatric organ failure and transplantation
Publisher
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Pediatric Transplantation
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
advance care planning; pediatric; communication; end-of-life; solid organ transplant
Creator
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Cousino MK; Schumacher KR; Magee J C; Wolfe J; Yu S; Eder SJ; Fredericks EM
Description
An account of the resource
BACKGROUND: Despite advancements in treatment and survival, pediatric organ failure and transplant populations continue to face significant risks of morbidity and mortality. Little scientific attention has been given to addressing the end-of-life care needs of this growing population of young people. This study characterized current practices, beliefs, and challenges specific to the disclosure of prognosis and end-of-life care topics among providers caring for pediatric organ failure and transplant populations. METHODS: This cross-sectional study included 144 healthcare providers actively caring for children, adolescents, and young adults with organ failure or solid organ transplant history. Participants completed an electronic survey measuring frequency and comfort in discussing the following topics with patients and parents: prognosis/survival statistics, re-transplantation, advance care planning (ACP), and death/dying. Descriptive statistics, two-sample t tests, and analysis of variance were used. RESULTS: Fewer than half of respondents regularly discuss prognosis/survival statistics and potential need for re-transplantation with their pediatric and young adult patients. Less than 20% of providers engage their pediatric patients in ACP discussions, and approximately 30% facilitate such discussions with young adult patients. Pediatric organ failure and transplant providers endorse a number of barriers specific to discussing these topics. CONCLUSION: Pediatric organ failure and transplant providers do not regularly discuss prognosis or end-of-life care topics with this patient population. Communication-focused intervention research is needed to improve honest and compassionate discussion of these topics that is aligned with both patients' and parents' needs and preferences.
Identifier
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<a href="http://doi.org/10.1111/petr.13373" target="_blank" rel="noreferrer noopener">10.1111/petr.13373</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Advance Care Planning
April 2019 List
Communication
Cousino MK
Eder SJ
end-of-life
Fredericks EM
Magee J C
Pediatric
Pediatric Transplantation
Schumacher KR
solid organ transplant
Wolfe J
Yu S
-
Dublin Core
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Title
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April 2019 List
Text
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Citation List Month
April 2019 List
URL Address
<a href="http://doi.org/10.12968/ijpn.2019.25.2.72" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.12968/ijpn.2019.25.2.72</a>
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Title
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Advancing the science of outcome measurement in paediatric palliative care
Publisher
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International journal of palliative nursing
Date
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2019
Subject
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End-of-life; Outcomes; Paediatrics; Palliative; Measurement
Creator
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Harding R; Chambers L; Bluebond-Langner M
Description
An account of the resource
BACKGROUND:: There is a lack of appropriate, validated person-centred outcome measures (PCOM) for paediatric palliative care in the scientific literature, and as a result there is not a tool to drive and evaluate care of children and young people. METHODS:: In line with COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidance, an expert group was convened to elicit views on the domains/items to include in a PCOM, implementation challenges and requirements for use in routine care by practitioners. Data were content analysed. RESULTS:: 36 UK-wide clinicians, advocates, and researchers participated. 1) Items included were: specific symptoms, education, play and social interaction, parental time for partner and other children, sex and intimacy, and sibling wellbeing. 2) Implementation challenges: supporting children and young people to engage meaningfully, that the instrument could be seen as a 'test' of parents' care quality, raising unrealistic expectations, proxy validity. 3) There is a need for clear administration and interpretation guidance and for data ownership/access to be agreed. CONCLUSIONS:: This expert meeting addressed the initial step in COSMIN guidance, informing face validity and acceptability. It provides the information necessary for the first phase of tool development and informs potential use and implementation.
Identifier
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<a href="http://doi.org/10.12968/ijpn.2019.25.2.72" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2019.25.2.72</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
April 2019 List
Bluebond-Langner M
Chambers L
end-of-life
Harding R
International Journal of Palliative Nursing
Measurement
Outcomes
Paediatrics
Palliative
-
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Title
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June 2019 List
Text
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Citation List Month
June 2019 List
URL Address
<a href="http://doi.org/10.1177/1049909119838985" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909119838985</a>
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Pediatric Complex Chronic Conditions: Does the Classification System Work for Infants?
Publisher
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The American Journal of Hospice & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
infant; complex chronic conditions; chronic disease; hospital patient; end-of-life; Caucasian; health care cost; serious illness; human; article; child; controlled study; attention; comorbidity; palliative therapy; prevalence; infants; African American; hcup kid; insurance; neonates; regression analysis
Creator
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Lindley L C; Fortney C A
Description
An account of the resource
BACKGROUND:: One widely accepted approach to identify children with life-limiting health problems is the complex chronic conditions (CCCs) classification system. Although considered the "gold standard" for classifying children with serious illness, little is known about its performance, especially among infants. OBJECTIVE/HYPOTHESIS:: This research examined the prevalence of CCCs and the infant characteristics related to a CCC classification. METHOD(S):: Multivariate regression analysis was conducted with 2012 Kids' Inpatient Database, Healthcare Cost and Utilization Project data files, using a national sample of infant decedents less than 1 year. RESULT(S):: Our findings showed that 40% of the infants were classified with a CCC. African Americans were negatively associated with a CCC classification (adjusted odds ratio [aOR] = 0.63; 95% confidence interval [CI] = 0.543-0.731). When infants had other insurance coverage, they were less likely (aOR = 0.63; 95% CI = 0.537-0.748) to have a CCC classification. Infants who resided in nonurban areas (aOR = 1.21; 95% CI =1.034-1.415) and had comorbidities (aOR = 38.19; 95% CI = 33.12-44.04) had greater odds of having a CCC classification. CONCLUSION(S):: The findings suggested that the infants are not commonly classified with a CCC and highlighted the significant variation in race with African American infants exhibiting different CCC classifications than Caucasian infants. Given the importance of reducing disparities in palliative care, critical attention to using CCC classifications in research is warranted.
Identifier
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<a href="http://doi.org/10.1177/1049909119838985" target="_blank" rel="noreferrer noopener">10.1177/1049909119838985</a>
2019
African American
Article
Attention
Caucasian
Child
Chronic Disease
Comorbidity
Complex Chronic Conditions
Controlled Study
end-of-life
Fortney C A
hcup kid
Health Care Cost
Hospital Patient
Human
Infant
Infants
Insurance
June 2019 List
Lindley L C
Neonates
Palliative Therapy
Prevalence
Regression Analysis
Serious Illness
The American Journal of Hospice & Palliative Care
-
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Title
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September 2019 List
Text
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Citation List Month
September 2019 List
URL Address
<a href="http://doi.org/10.1177/1049909119858931" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909119858931</a>
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A Systematic Literature Review of the Current State of Knowledge Related to Interventions for Bereaved Parents
Publisher
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American Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
pediatric palliative care; bereavement; grief; end-of-life; bereavement care; interventions; pediatric bereavement care
Creator
An entity primarily responsible for making the resource
Dias N; Hendricks-Ferguson VL; Wei H; Boring E; Sewell K; Haase JE
Description
An account of the resource
AIMS: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations. METHODS: We searched MEDLINE via PubMed (1966-2018), CINAHL (1937-present), PsycINFO (1887-present), and Embase (1947-present) using various search words and MeSH terms related to the study purpose. A blinded screening of title/abstract was performed, with conflicting inclusion decisions resolved through group discussions. Matrices for remaining articles were created and discussed among the team. The levels of evidence of the 9 records were rated from very low to high based on the Grading of Recommendations Assessment, Development, and Evaluation guidelines. RESULTS: Our initial pool included 1025 articles. After the screening of titles/abstracts, 63 articles were retained for full-text reviews. Evaluated based on the inclusion/exclusion criteria, 9 records met the review criteria. Of the 9 records, 1 was graded as very low, 3 low, and 5 low to moderate. The interventions for bereaved parents varied from using single-model interventions such as expressive arts therapy and telephone support to multimodal interventions that combined resources (ie, peer support, resource packets, and health-care support). Only 1 study explicitly illustrated how its bereavement intervention was designed based on the proposed theoretical model. CONCLUSIONS: This review highlights the need for individualized, well-tested, and effective bereavement care interventions to support bereaved parents. In summary, the state of the science on interventions for bereaved parents is poor and much work needs to be done to effectively address the needs of bereaved parents, including both their physical and emotional health needs.
Identifier
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<a href="http://doi.org/10.1177/1049909119858931" target="_blank" rel="noreferrer noopener">10.1177/1049909119858931</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
American Journal Of Hospice And Palliative Care
Bereavement
Bereavement Care
Boring E
Dias N
end-of-life
Grief
Haase JE
Hendricks-Ferguson VL
Interventions
pediatric bereavement care
Pediatric Palliative Care
September 2019 List
Sewell K
Wei H
-
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Title
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September 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2019-001766" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2019-001766</a>
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Title
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Family caregivers of children and adolescents with rare diseases: a novel palliative care intervention
Publisher
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BMJ Supportive Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
decision making; end-of-life; family caregiver; intervention; intervention. She receives a small royalty.; palliative care needs; pediatric advanced care planning; rare disease
Creator
An entity primarily responsible for making the resource
Lyon ME; Thompkins JD; Fratantoni K; Fraser JL; Schellinger SE; Briggs L; Friebert S; Aoun S; Cheng YI; Wang J
Description
An account of the resource
OBJECTIVE: To develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)). METHODS: FACE-Rare development involved an iterative, family-guided process including review by a Patient and Family Advisory Council, semistructured family interviews and adaptation of two evidence-based person-centred approaches and pilot testing their integration. Eligible families were enrolled in FACE-Rare (the Carer Support Needs Assessment Tool (CSNAT) Approach Paediatric sessions 1 and 2; plus Respecting Choices Next Steps pACP intervention sessions 3 and 4). Satisfaction, quality of communication and caregiver appraisal were assessed. RESULTS: Parents were mean age 40 years, and children 7 years. Children's diseases were rare enough that description would identify patients. All children were technology dependent. Telemedicine, used with four of seven families, was an effective engagement strategy and decreased subject burden. Families found FACE-Rare valuable following a strategy that first elicited palliative care needs and a support plan. Eight families were approached for pilot testing. Of the seven mothers who agreed to participate, six began session 1, and of those, 100% completed: all four FACE-Rare sessions, baseline and 2-week postintervention assessments, and a written pACP which described their preferences for medical decision-making to share with their providers. 100% reported FACE-Rare was helpful. The top three CSNAT concerns were: knowing what to expect in the future, having enough time for yourself and financial issues. Benchmarks were achieved and questionnaires were acceptable to parents and thus feasible to use in a larger trial. CONCLUSIONS: FACE-Rare provides an innovative, structured approach for clinicians to deliver person-centred care.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2019-001766" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001766</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Aoun S
Bmj Supportive Palliative Care
Briggs L
Cheng YI
Decision Making
end-of-life
family caregiver
Fraser JL
Fratantoni K
Friebert S
Intervention
intervention. She receives a small royalty.
Lyon ME
palliative care needs
pediatric advanced care planning
Rare Disease
Schellinger SE
September 2019 List
Thompkins JD
Wang J
-
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December 2019 List
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December 2019 List
URL Address
<a href="http://doi.org/10.1136/medethics-2019-105639" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/medethics-2019-105639</a>
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Worth living or worth dying? The views of the general public about allowing disabled children to die
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Journal of Medical Ethics
Date
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2019
Subject
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Allocation of Health Care Resources; Clinical Ethics; End-of-life; Ethics; Quality/Value of Life/Personhood
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Brick C; Kahane G; Wilkinson D; Caviola L; Savulescu J
Description
An account of the resource
BACKGROUND: Decisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed. METHODS: An online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making. RESULTS: One hundred and thirty participants completed the survey. The majority (94%) agreed that an infant's life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant's ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continue or withdraw treatment. CONCLUSION: Despite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents' decisions. These findings may be useful when constructing guidelines for clinical practice.
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<a href="http://doi.org/10.1136/medethics-2019-105639" target="_blank" rel="noreferrer noopener">10.1136/medethics-2019-105639</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Allocation of Health Care Resources
Brick C
Caviola L
Clinical Ethics
December 2019 List
end-of-life
Ethics
Journal of Medical Ethics
Kahane G
Quality/Value of Life/Personhood
Savulescu J
Wilkinson D
-
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Title
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January 2020 List
Text
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January 2020 List
URL Address
<a href="http://doi.org/10.1007/s00246-019-02231-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00246-019-02231-y</a>
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Early Integration of Palliative Care in Families of Children with Single Ventricle Congenital Heart Defects: A Quality Improvement Project to Enhance Family Support
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Pediatric Cardiology
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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Cardiac; Collaboration; End-of-life; Palliative; Pediatric; Single ventricle
Creator
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Davis J A M; Bass A; Humphrey L; Texter K; Garee A
Description
An account of the resource
Children with single ventricle congenital heart defects (SVCHD) experience a significant risk of early mortality throughout their lifespan, particularly during their first year of life. Due to the intense care needed for these children and families, pediatric palliative care (PPC) team consults should be routine; however, medical staff are often reluctant to broach the idea of PPC to families. The involvement of PPC for many carries with it an association to end-of-life (EOL) care. Setting the standard of PPC involvement from the time of admission for the first palliative surgery led to increased family support, decreased days to consult, improved acceptance and communication. The purpose of this article is to describe a quality improvement project of early integration of PPC with families of children with SVCHD. Lessons learned will be presented, including the resources needed and the barriers encountered in assimilating PPC into the standard of care for all patients with SVCHD. The single ventricle (SV) and PPC teams collaborated to enhance the support given to SV families. Education was initiated with cardiology and PPC providers to understand the goal of consistent PPC consults beginning after birth for patients with SVCHD. Parents were educated during fetal consultation regarding the involvement of the PPC team. The SV team ensured compliance with the PPC initiative by identifying eligible patients and requesting consult orders from the primary providers. PPC consultation increased significantly over the 40 month study period to nearly 100% compliance for children with SVCHD who are undergoing pre-Fontan surgery. In addition, mean days to consult decreased dramatically during the study to a current average of 3 days into the patient's hospitalization; the data likely suggest that more PPC consults were routinely ordered versus urgently placed for unexpected complications. Data indicate that patients are being followed by the PPC team at an earlier age and stage in their SV journey which allows for more opportunity to provide meaningful support to these patients and families. The early involvement of the PPC team for children with SV physiology was operationally feasible and was accepted by families, thus allowing PPC providers to establish a therapeutic relationship early in the disease trajectory with the family. It allowed more continuity throughout the SV journey in a proactive fashion rather than a reactive manner.
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<a href="http://doi.org/10.1007/s00246-019-02231-y" target="_blank" rel="noreferrer noopener">10.1007/s00246-019-02231-y</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Bass A
Cardiac
Collaboration
Davis J A M
end-of-life
Garee A
Humphrey L
January 2020 List
Palliative
Pediatric
Pediatric Cardiology
Single ventricle
Texter K
-
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Title
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2019 Developing World List
Text
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Developing World 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2016-001224" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2016-001224</a>
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Paediatric advance care planning survey: a cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families
Publisher
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BMJ supportive & palliative care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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adolescent; advance care planning; chronic illness; end-of-life; palliative care
Creator
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Lyon M E; Dallas R H; Garvie P A; Wilkins M L; Garcia A; Cheng Y I; Wang J
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<a href="http://doi.org/10.1136/bmjspcare-2016-001224" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2016-001224</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Adolescent
Advance Care Planning
BMJ Supportive & Palliative Care
Cheng Y I
Chronic Illness
Dallas R H
Developing World 2019 List
end-of-life
Garcia A
Garvie P A
Lyon M E
Palliative Care
Wang J
Wilkins M L
-
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Title
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2019 Oncology List
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Oncology 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0598" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0598</a>
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Development of a Proxy Quality-of-Life Rating Scale for the End-of-Life Care of Pediatric Cancer Patients, Evaluated from a Nurse's Perspective
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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end-of-life; pediatric palliative care; proxy rating scale; quality of life
Creator
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Nagoya Y; Miyashita M; Irie W; Yotani N; Shiwaku H
Description
An account of the resource
Background: Assessing the quality of life (QoL) of children receiving end-of-life (EoL) care through evaluations by the children and their bereaved families is challenging; presently, there is no QoL assessment measure that is appropriate for use in pediatric EoL and/or palliative care. Objective: To develop and test a proxy rating scale (the "Good Death Inventory for Pediatrics," GDI-P) for the QoL of pediatric cancer patients receiving EoL care, evaluated from the nurse's perspective, as well as a short version of the scale. Design, Setting, and Measurements: The GDI-P was developed based on previous studies. After initial testing, it was distributed to hospitals across Japan, where nurses in charge of patients with childhood cancer receiving EoL care used the scale to evaluate a patient retrospectively. To examine inter-rater reliability, we encouraged two nurses to evaluate one patient. The GDI-P was modified on the basis of the responses, and the validity and reliability were measured. Results: In total, 85 questionnaires were completed, including 32 pairs of responses from two nurses evaluating one patient. In addition, 47 retest questionnaires were returned. The final, modified GDI-P comprised eight factors with 22 items and showed high convergent and discriminant validity, scaling success rates for each item and factor, and Cronbach's alpha values. A short version of GDI-P was prepared, comprising eight representative items. Conclusions: The final GDI-P was confirmed to have adequate reliability and validity. The QoL scale developed in this study should provide useful outcome evaluation criteria for assessing the EoL care of pediatric cancer patients.
Identifier
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<a href="http://doi.org/10.1089/jpm.2018.0598" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0598</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
end-of-life
Irie W
Journal of Palliative Medicine
Miyashita M
Nagoya Y
Oncology 2019 List
Pediatric Palliative Care
proxy rating scale
Quality Of Life
Shiwaku H
Yotani N
-
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Title
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April 2020 List
Text
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April 2020 List
URL Address
<a href="http://doi.org/10.1016/j.pec.2020.02.013" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pec.2020.02.013</a>
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Initiating end-of-life decisions with parents of infants receiving neonatal intensive care
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Patient Education and Counseling
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Conversation analysis; Decision making; End-of-life; interest. NM declares personal fees for consultancy from Shire and Novartis; Neonates; outside the submitted work.; Parents; Withdrawing; Withholding
Creator
An entity primarily responsible for making the resource
Shaw C; Connabeer K; Drew P; Gallagher K; Aladangady N; Marlow N
Description
An account of the resource
OBJECTIVE: To investigate whether parent-initiated or doctor-initiated decisions about limiting life-sustaining treatment (LST) in neonatal care has consequences for how possible courses of action are presented. METHOD: Formal conversations (n = 27) between doctors and parents of critically ill babies from two level 3 neonatal intensive care units were audio or video recorded. Sequences of talk where decisions about limiting LST were presented were analysed using Conversation Analysis and coded using a Conversation Analytic informed coding framework. Relationships between codes were analysed using Fisher's exact test. RESULTS: When parents initiated the decision point, doctors subsequently tended to refer to or list available options. When doctors initiated, they tended to use 'recommendations' or 'single-option' choice (conditional) formats (p=0.017) that did not include multiple treatment options. Parent initiations overwhelmingly concerned withdrawal, as opposed to withholding of LST (p=0.030). CONCLUSION: Aligning parents to the trajectory of the news about their baby's poor condition may influence how the doctor subsequently presents the decision to limit LST, and thereby the extent to which parents are invited to participate in shared decision-making. PRACTICE IMPLICATIONS: Explicitly proposing treatment options may provide parents with opportunities to be involved in decisions for their critically ill babies, thereby fostering shared decision-making.
Identifier
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<a href="http://doi.org/10.1016/j.pec.2020.02.013" target="_blank" rel="noreferrer noopener">10.1016/j.pec.2020.02.013</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).
2020
Aladangady N
April 2020 List
Connabeer K
Conversation Analysis
Decision Making
Drew P
end-of-life
Gallagher K
interest. NM declares personal fees for consultancy from Shire and Novartis
Marlow N
Neonates
outside the submitted work.
Parents
Patient Education and Counseling
Shaw C
Withdrawing
Withholding
-
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Title
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June 2020 List
Text
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Citation List Month
June 2020 List
URL Address
<a href="http://doi.org/10.1080/17482631.2020.1756686" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/17482631.2020.1756686</a>
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Consulting with a folk deity before making decisions: spiritual practices in parents facing end-of-life decisions for their child on life support with brain stem dysfunction
Publisher
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International Journal of Qualitative Studies on Health and Well-being
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
brain stem dysfunction; decision making; end-of-life; parents; qualitative; Spiritual practices
Creator
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Lin S C; Huang M C
Description
An account of the resource
Background: Adolescents with brain stem dysfunction may undergo many invasive treatments, and parents are often faced with making the decision to withdraw treatment. However, in the face of their child's death, the spiritual practices of parents dealing with end-of-life decision-making remain under investigated.Purpose: This study explores the spiritual practices in parents making end-of-life decisions for adolescents on life support with brain stem dysfunction.Method: A descriptive phenomenological study was conducted through in-depth interviews with three parents of two adolescents in Taiwan. Data were analysed using Colaizzi's seven-step protocol.Results: Three main themes emerged: (1) faith during decision-making, (2) struggles during decision-making, (3) transformation during decision-making. The findings indicate that "transforming the nature of hope" is the essence of the experience.Conclusion: Family-centred care, gaining insight into parental spiritual practices, and developing culturally-appropriate care are recommended.
Identifier
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<a href="http://doi.org/10.1080/17482631.2020.1756686" target="_blank" rel="noreferrer noopener">10.1080/17482631.2020.1756686</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).
2020
brain stem dysfunction
Decision Making
end-of-life
Huang M C
International Journal Of Qualitative Studies On Health And Well-being
June 2020 List
Lin S C
Parents
Qualitative
Spiritual practices
-
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June 2020 List
Text
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Citation List Month
June 2020 List
URL Address
<a href="http://doi.org/10.1002/pbc.28229" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.28229</a>
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Parental experiences in end-of-life decision-making in allogeneic pediatric stem cell transplantation: "Have I been a good parent?"
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Pediatric Blood & Cancer
Date
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2020
Subject
The topic of the resource
decision-making; end-of-life; experiences; hematopoietic stem cell transplantation; parental; pediatric
Creator
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Mekelenkamp H; Lankester A C; Bierings M B; Smiers F J W; Vries M C; Kars M C; de Vries M C
Description
An account of the resource
Background: In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This demands a fast transition for parents. Therefore, an understanding of the parents' perspective on decision-making in such a complex situation is needed. This study aims to gain insight in parental experiences in EOL decision-making in allogeneic pediatric HSCT.Methods: A qualitative descriptive study was performed among parents of eight families. Data were thematically analyzed.Results: All parents were aware of their child's deterioration. Six families were confronted with a rapid deterioration, while two families experienced a gradual realization that their child would not survive. Parental EOL decision-making in pediatric HSCT shows a reflective perspective on the meaning of parenthood in EOL decision-making. Two central themes were identified: "survival-oriented decision-making" and "struggling with doubts in hindsight." Six subthemes within the first theme described the parents' goal of doing everything to achieve survival.Discussion: Parents experienced EOL decision-making mainly as a process guided by health care professionals (HCPs) based on the child's condition and treatment possibilities. The decision-making is characterized by following opportunities and focusing on hope for cure. In hindsight parents experienced doubts about treatment steps and their child's suffering. HCPs can strengthen the parental role by an early integration of palliative care, providing timely support to parents in the process of imminent loss. Advance care planning can be used to support communication processes, defining preferences for future care.
Identifier
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<a href="http://doi.org/10.1002/pbc.28229" target="_blank" rel="noreferrer noopener">10.1002/pbc.28229</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).
2020
Bierings M B
de Vries M C
Decision-making
end-of-life
Experiences
Hematopoietic stem cell transplantation
June 2020 List
Kars M C
Lankester A C
Mekelenkamp H
parental
Pediatric
Pediatric Blood & Cancer
Smiers F J W
Vries M C
-
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Title
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July 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2020 List
URL Address
<a href="http://doi.org/10.1080/2331205X.2019.1694205" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/2331205X.2019.1694205</a>
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Discussing end-of-life issues in an adolescent with a terminal illness
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Cogent Medicine. Conference: 11th Annual Excellence in Pediatrics Conference. Denmark.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; advance care planning; end-of-life; terminal illness
Creator
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Chia S Y
Description
An account of the resource
Introduction: Adolescent palliative care is especially challenging because of complex developmental, social, clinical, and legal concerns. In adolescents with life-limiting illnesses, developmental tasks of normal adolescence such as developing an awareness of self and others, gaining selfconfidence, independence, and establishing one's own identity are halted. The difficulty lies in balancing the desire to gain independence while experiencing greater dependence on others as their disease progress. Purpose(s): This review discusses the multi-faceted barriers in discussion of end-of-life care with the adolescent and strategies to optimize this discussions. Case description: This case is about a wheelchair-bound 14-year-old boy with Duchenne's Muscular Dystrophy (DMD), and challenges faced discussing end-of-life issues. His condition was complicated by restrictive lung disease requiring nocturnal Bilevel Positive Airway Pressure (BiPAP) and dilated cardiomyopathy with severely reduced biventricular systolic function. His parents did not want the patient's deteriorating condition to be divulged to him, and he struggled to make sense of his medical experiences. This resulted in non-compliance to medication, fluid restriction, and nocturnal use of BIPAP, exacerbating a vicious circle of admissions for fluid overload due to symptomatic congestive cardiac failure. He had difficulty coming to terms with his illness, felt like a burden to his parents, struggled with frequent nightmares about death, and would wake up in a state of panic. Advanced Care Planning (ACP) with the family was challenging due to parental resistance. Results/Discussion: We reviewed the literature and identified challenges in discussing end-of-life issues with the adolescent. Perspectives from main stakeholders such as the parents, the adolescent, and the medical professionals were evaluated. Key strategies for taking on the end-of-life discussion with the adolescent are as follows: (1) Employing a multidisciplinary team approach for supporting decision-making by dying adolescent, including the physician, nurse, psychologist, social worker, and child life specialist; (2) overcoming parental barriers through physician truthtelling and effective communication, and breaking-down of parental self-defense mechanisms through psychosocial support and pediatric palliative care teams; (3) engaging the adolescent and determining their functional competence and decision-making ability; and (4) integrating truthtelling with modern bioethical principles. Conclusion(s): Our clinical case exemplifies the importance of involving the adolescent in the end-oflife discussion. Early involvement establishes trust between the medical team and the family, whilst providing control and independence as the adolescent's needs are incorporated into the treatment plan. As physicians, the aim is to engage the above strategies together with the multidisciplinary team, preserve opportunities for the adolescent and family to create meaningful legacies, say goodbye to each other, or find spiritual peace in end-of-life care.
Identifier
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<a href="http://doi.org/10.1080/2331205X.2019.1694205" target="_blank" rel="noreferrer noopener">10.1080/2331205X.2019.1694205</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Adolescent
Advance Care Planning
Chia S Y
Cogent Medicine. Conference: 11th Annual Excellence in Pediatrics Conference. Denmark.
end-of-life
July 2020 List
Terminal Illness
-
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Title
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July 2020 List
Text
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July 2020 List
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<a href="http://doi.org/10.1111/dmcn.14411" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.14411</a>
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Title
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The Chameleon Project: A children's end of life care quality improvement project
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Developmental Medicine and Child Neurology
Date
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2020
Subject
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Chameleon Project; children; end-of-life; quality improvement project
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Wolff A; Dorsett C; Haynes S; Whitehouse W P; Clements H; Griffin H; Chhaochharia A; Connolly A; Kelly N; Turnbull J; Deorukker S; Hill S; Batey N; Douglas E; Sheikh N; Bifani E; Lovegrove S; Webb K; Manning J
Description
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Objective: NHS England's Marginal Rate Emergency Threshold (MRET) and Readmission Fund funded the Chameleon Project 2018 (Twitter account: @chameleonproje1), to improve children's end of life care. This funded a lead disability paediatrician with expertise in Paediatric Palliative Care (10h/wk), a children's palliative care nurse (3d/wk) a network administrator (2d/wk), and additional hours for paediatricians in the critical care, oncology, and neonatal units, and in each of the local district general hospitals (total 18h/wk). Method(s): Tools were developed to aid identification of children in the last year of life and to support anticipatory care planning. The team attended ward rounds and provided teaching sessions, advice and support. Children who died an expected death in the 12 months of the project were ascertained from the child death review teams. Non-elective admissions, bed days, and costs were tabulated. We also evaluated the documentation of care plans and post bereavement family feedback questionnaires. Result(s): 29 children died an expected death. The same number died during the previous 12 months. The median number of non-elective admissions reduced from 2 to 1 per child, specialist ward bed days reduced from 504 to 251 (50% reduction). For children admitted to PICU in the last 12 months of life, the total PICU bed days reduced from 342 to 184 (46% reduction), the median length of stay reduced from 21 days to 11 days, and the maximum length of stay reduced from 141 days to 38 days. The percentage of children who died an expected death who had documented anticipatory care plans rose from 50% to 72%. Conclusion(s): The network of clinicians with expertise in paediatric palliative care working together across a region improved anticipatory care planning and reduced admissions and bed days for children in their last year of life: better care with reduced costs.
Identifier
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<a href="http://doi.org/10.1111/dmcn.14411" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14411</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).
2020
Batey N
Bifani E
Chameleon Project
Chhaochharia A
Children
Clements H
Connolly A
Deorukker S
Developmental Medicine and Child Neurology
Dorsett C
Douglas E
end-of-life
Griffin H
Haynes S
Hill S
July 2020 List
Kelly N
Lovegrove S
Manning J
quality improvement project
Sheikh N
Turnbull J
Webb K
Whitehouse W P
Wolff A
-
Dublin Core
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Title
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September 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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September 2020 List
URL Address
<a href="http://doi.org/10.1038/s41390-020-1036-x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41390-020-1036-x</a>
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Title
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Healthcare interventions improving and reducing quality of life in children at the end of life: a systematic review
Publisher
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Pediatric Research
Date
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2020
Subject
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children; end-of-life; healthcare interventions; quality of life; systematic review
Creator
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Piette V; Beernaert K; Cohen J; Pauwels N S; Scherrens A L; van der Werff ten Bosch J; Deliens L
Description
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Background: Children with serious illness suffer from symptoms at the end of life that often fail to be relieved. An overview is required of healthcare interventions improving and decreasing quality of life (QOL) for children with serious illness at the end of life. Method(s): A systematic review was performed in five databases, January 2000 to July 2018 without language limit. Reviewers selected quantitative studies with a healthcare intervention, for example, medication or treatment, and QOL outcomes or QOL-related measures, for example, symptoms, for children aged 1-17 years with serious illness. One author assessed outcomes with the QualSyst and GRADE (Grades of Recommendation, Assessment, Development, and Evaluation) Framework; two authors checked a 25% sample. QOL improvement or reduction was categorized. Result(s): Thirty-six studies met the eligibility criteria studying 20 unique interventions. Designs included 1 randomized controlled trial, 1 cross-sectional study, and 34 cohort studies. Patient-reported symptom monitoring increased QOL significantly in cancer patients in a randomized controlled trial. Dexmedetomidine, methadone, ventilation, pleurodesis, and palliative care were significantly associated with improved QOL, and chemotherapy, stem cell transplant, and hospitalization with reduced QOL, in cohort studies. Conclusion(s): Use of patient-controlled symptom feedback, multidisciplinary palliative care teams with full-time practical support, inhalation therapy, and off-label sedative medication may improve QOL. Curative therapy may reduce QOL. Impact: QOL for children at the end of life may be improved with patient-controlled symptom feedback, multidisciplinary palliative care teams with full-time practical support, inhalation therapy, and off-label sedative medication.QOL for children at the end of life may be reduced with therapy with a curative intent, such as curative chemotherapy or stem cell transplant.A comprehensive overview of current evidence to elevate currently often-failing QOL management for children at the end of life.New paradigm-level indicators for appropriate and inappropriate QOL management in children at the end of life.New hypotheses for future research, guided by the current knowledge within the field.Various healthcare interventions (as described above) could or might be employed as tools to provide relief in QOL management for children with serious illness, such as cancer, at the end of life, and therefore could be discussed in pediatrician end-of-life training to limit the often failed QOL management in this population, cave the one-size-fits-all approach for individual cases.Multidisciplinary team efforts and 24/7 presence, especially practical support for parents, might characterize effective palliative care team interventions for children with serious illness at the end of life, suggesting a co-regulating link between well-being of the child partly to that of the parentsHypothesis-oriented research is needed, especially for children with nonmalignant disorders, such as genetic or neurological disorders at the end of life, as well as QOL outcomes for intervention research and psychosocial or spiritual outcomes. Copyright © 2020, International Pediatric Research Foundation, Inc.
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<a href="http://doi.org/10.1038/s41390-020-1036-x" target="_blank" rel="noreferrer noopener">10.1038/s41390-020-1036-x</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).
2020
Beernaert K
Children
Cohen J
Deliens L
end-of-life
healthcare interventions
Pauwels N S
Pediatric Research
Piette V
Quality Of Life
Scherrens A L
September 2020 List
Systematic Review
Van Der Werff Ten Bosch J
-
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Title
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September 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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September 2020 List
URL Address
<a href="http://doi.org/10.1016/j.cppeds.2020.100814" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.cppeds.2020.100814</a>
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Title
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Primary palliative care: Skills for all clinicians
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Current Problems in Pediatric and Adolescent Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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advance care plan; American Academy of Pediatrics; end-of-life; goal of care; goals of care; hospice and palliative medicine; palliative care; quality of care
Creator
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Sreedhar S S; Kraft C; Friebert S
Description
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The number of children with life-threatening and life-limiting conditions is increasing, requiring an individualized approach and additional supportive care. The American Academy of Pediatrics has called for pediatric palliative care to be available to all children who would benefit.$^{\textrm{1,2}}$ High quality pediatric palliative care is essential for these children. Collaborative team-based methods focused on improving quality of life have shown to improve outcomes in physical, emotional, and cognitive domains.$^{\textrm{3}}$ Palliative care involvement at the time of diagnosis rather than just at the end of life has moved coordinated care upstream. All clinicians can and should deliver palliative care. The Joint Commission recommends having patient-centered palliative care services available for children, and the Centers for Medicare and Medicaid Services is reimbursing clinicians for this coordinated care. This article details how all pediatric clinicians can positively influence the care of seriously ill children by incorporating palliative care principles into their daily care, resulting in better outcomes for their patients and families. Copyright © 2020 Elsevier Inc.
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<a href="http://doi.org/10.1016/j.cppeds.2020.100814" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2020.100814</a>
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2020
advance care plan
American Academy of Pediatrics
Current Problems in Pediatric and Adolescent Health Care
end-of-life
Friebert S
goal of care
Goals Of Care
hospice and palliative medicine
Kraft C
Palliative Care
Quality Of Care
September 2020 List
Sreedhar S S
-
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Title
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November 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2020 List
URL Address
<a href="http://doi.org/10.1177/0030222820959941" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0030222820959941</a>
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Title
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Factors Associated With the Location of Expected Pediatric Deaths in the Palliative Care Context
Publisher
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Omega
Date
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2020
Subject
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child; death; end-of-life; location of death; planning
Creator
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Coombs S; Aouad P; Jaaniste T
Description
An account of the resource
Early planning and knowing which factors to consider when planning the location of death (LOD) of a palliative child, may help minimize the burden of hasty decision-making in the future, and may provide families with a sense of control. The current paper reviewed which factors were associated with pediatric LOD and further considered some emerging factors that should are important to better facilitate integrative planning. Three overarching areas of consideration related to pediatric LOD planning were identified including health service factors, familial factors and patient factors. Multiple sub-factor considerations are presented. Further, the paper presents a conceptual model of the factors found to be related to pediatric LOD planning. The limitations that exist with rigorously and empirically studying pediatric LOD preferences are apparent from the dearth of knowledge seen in the field. However, future studies should continue to examine such factors more closely to better understand the nuanced implications.
Identifier
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<a href="http://doi.org/10.1177/0030222820959941" target="_blank" rel="noreferrer noopener">10.1177/0030222820959941</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).
2020
Aouad P
Child
Coombs S
Death
end-of-life
Jaaniste T
Location Of Death
November 2020 List
Omega
planning
-
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Title
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November 2020 List
Text
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Citation List Month
November 2020 List
URL Address
<a href="http://doi.org/10.3389/fped.2020.574121" target="_blank" rel="noreferrer noopener">http://doi.org/10.3389/fped.2020.574121</a>
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Neonatal End-of-Life Symptom Management
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Frontiers in Pediatrics
Date
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2020
Subject
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end-of-life; neonatal; perinatal palliative care; pharmacological management; symptom management
Creator
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Cortezzo D E; Meyer M
Description
An account of the resource
Purpose of review: Despite advances in technology and treatment options, over 15,000 neonates die each year in the United States. The majority of the deaths, with some estimates as high as 80%, are the result of a planned redirection of care or comfort measures only approach to care. When curative or life-prolonging interventions are not available or have been exhausted, parents focus on preserving quality of life and eliminating needless suffering. Parents hope their child will have a peaceful death and will not feel pain. A significant component of end-of-life care is high quality symptom evaluation and management. It is important that neonatal providers are knowledgeable in symptom management to address common sources of suffering and distress for babies and their families at the end-of-life (EOL). Recent findings: Medically complex neonates with life-threatening conditions are a unique patient population and there is little research on end-of-life symptom assessment and management. While there are tools available to assess symptoms for adolescents and adults, there is not a recognized set of tools for the neonatal population. Nonetheless, it is widely accepted that neonates experience significant symptoms at end-of-life. Most commonly acknowledged manifestations are pain, dyspnea, agitation, and secretions. In the absence of data and established guidelines, there is variability in their clinical management. This contributes to provider discomfort and inadequate symptom control. Summary: End-of-life symptom assessment and management is an important component of neonatal end-of-life care. While there remains a paucity of studies and data, it is prudent that providers adequately manage symptoms. Likewise, it is important that providers are educated so that they can effectively guide families through the dying process by discussing disease progression, physical changes, and providing empathetic support. In this review, the authors make recommendations for non-pharmacological and pharmacological management of end-of-life symptoms in neonates. © Copyright © 2020 Cortezzo and Meyer.
Identifier
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<a href="http://doi.org/10.3389/fped.2020.574121" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.574121</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).
2020
Cortezzo D E
end-of-life
Frontiers in Pediatrics
Meyer M
Neonatal
November 2020 List
Perinatal Palliative Care
pharmacological management
Symptom Management
-
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Title
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December 2020 List
Text
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December 2020 List
URL Address
<a href="http://doi.org/10.1093/medlaw/fwz011" target="_blank" rel="noreferrer noopener">http://doi.org/10.1093/medlaw/fwz011</a>
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Title
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Reflecting on 'Hannah's Choice': Using the Ethics of Care to Justify Child Participation in End of Life Decision-Making
Publisher
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Medical Law Review
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Decision Making; Terminally Ill; Child; Children; Decision-Making; End-of-Life; Ethics of Care; Female; Gillick Competence; Guidelines as Topic; Humans; Informed Consent By Minors/ethics/legislation & jurisprudence; Mental Competency/legislation & jurisprudence; Palliative Care/ethics; Parents; Personal Autonomy; Terminal Care/ethics; Treatment Refusal; Treatment Refusal/ethics/legislation & jurisprudence; United Kingdom
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Moreton KL
Description
An account of the resource
It has been ten years since the case of Hannah Jones-the 12-year-old girl who was permitted to refuse a potentially life-saving heart transplant. In the past decade, there has been some progress within law and policy in respect of children's participatory rights (UNCRC-Article 12), and a greater understanding of family-centred decision-making. However, the courts still largely maintain their traditional reluctance to find children Gillick competent to refuse medical treatment. In this article, I revisit Hannah's case through the narrative account provided by Hannah and her mother, to ascertain what lessons can be learnt. I use an Ethics of Care framework specially developed for children in mid-childhood, such as Hannah, to argue for more a creative and holistic approach to child decision-making in healthcare. I conclude that using traditional paradigms is untenable in the context of palliative care and at the end of life, and that the law should be able to accommodate greater, and even determinative, participation of children who are facing their own deaths.
Identifier
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<a href="http://doi.org/10.1093/medlaw/fwz011" target="_blank" rel="noreferrer noopener">10.1093/medlaw/fwz011</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).
2020
Child
Children
December 2020 List
Decision Making
Decision-making
end-of-life
Ethics of Care
Female
Gillick Competence
Guidelines As Topic
Humans
Informed Consent By Minors/ethics/legislation & jurisprudence
Medical Law Review
Mental Competency/legislation & jurisprudence
Moreton KL
Palliative Care/ethics
Parents
Personal Autonomy
Terminal Care/ethics
Terminally Ill
Treatment Refusal
Treatment Refusal/ethics/legislation & jurisprudence
United Kingdom
-
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Title
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January 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.11.001" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.11.001</a>
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Title
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Health care professionals' experiences with pre-loss care in pediatrics; goals, strategies, obstacles and facilitators
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Bereavement; palliative care; end-of-life; Health Personnel; Terminal Care; Child Loss
Creator
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Kochen EM; Boelen PA; Teunissen SCCM; Jenken F; de Jonge RR; Grootenhuis MA; Kars MC
Description
An account of the resource
CONTEXT: Although parents experience grief when confronted with their child's deterioration and imminent death, most bereavement care is focused on supporting parents after child loss. Insight into the health care professionals' (HCPs) intentions and strategies in pre-loss care during the end-of-life is still lacking. OBJECTIVES: To create a starting point for improvement of pre-loss care, this study explores HCPs' experiences with providing support aimed at parental feelings of grief during the child's end-of-life. METHODS: Exploratory qualitative research using individual semi-structured interviews with clinicians in pediatrics and neonatology in hospital and homecare settings. Data were thematically analyzed by a multidisciplinary team. RESULTS: Nineteen HCPs participated. HCPs tried to ensure that (1) parents could reflect on the care received as concordant to their preferences and (2) were not hindered in their bereavement as a consequence of their professional actions. Strategies included maximizing parental presence, enabling parental involvement in decision making, and ensuring a dignified death. While employing these strategies, HCPs faced several difficulties: uncertainty about the illness-course, unpredictability of parental grief responses, and being affected themselves by the child's imminent death. It helped HCPs to develop a bond with parents, find comfort with colleagues and making joint decisions with colleagues. CONCLUSIONS: HCPs strive to improve parental coping after the child's death, yet apply strategies that positively influence parental preparedness and wellbeing during the end-of-life as well. Individual HCPs are left with many uncertainties. A more robust approach based on theory, evidence and training is needed to improve pre-loss care in pediatrics.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.11.001" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.11.001</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).
2020
Bereavement
Boelen PA
Child Loss
de Jonge RR
end-of-life
Grootenhuis MA
Health Personnel
January 2021 List
Jenken F
Journal of Pain and Symptom Management
Kars MC
Kochen EM
Palliative Care
Terminal Care
Teunissen SCCM
-
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Title
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2020 Oncology List
Text
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Oncology 2020 List
URL Address
<a href="http://doi.org/10.1007/s00520-020-05671-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00520-020-05671-y</a>
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Title
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Association of a pediatric palliative oncology clinic on palliative care access, timing and location of care for children with cancer
Publisher
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Supportive Care in Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Pediatric oncology; Pediatric palliative care; Supportive care; End-of-life
Creator
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Brock K E; Allen K E; Falk E; Velozzi-Averhoff C; DeGroote N P; Klick J; Wasilewski-Masker K
Description
An account of the resource
BACKGROUND: Most pediatric palliative care (PPC) services are inpatient consultation services and do not reach patients and families in the outpatient and home settings, where a vast majority of oncology care occurs. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated with receipt and timing of PPC and hospital days in the last 90 days of life. METHODS: Oncology patients (ages 0-25) with a high-risk event (death, relapse/progression, and/or phase I/II clinical trial enrollment) between 07/01/2015 and 06/30/2018 were included. PPO clinic started July 2017. Two cohorts were defined: pre-PPO (high-risk event(s) occurring 07/01/2015-06/30/2017) and post-PPO (high-risk event(s) occurring 07/01/2017-06/30/2018). Descriptive statistics were performed; demographic, disease course, and outcomes variables across cohorts were compared. RESULTS: A total of 426 patients were included (pre-PPO n = 235; post-PPO n = 191). Forty-seven patients with events in both pre- and post-PPO cohorts were included in the post-PPO cohort. Mean age at diagnosis was 8 years. Diagnoses were evenly distributed among solid tumors, brain tumors, and leukemia/lymphoma. Post-PPO cohort patients received PPC more often (45.6% vs. 21.3%, p < 0.0001), for a longer time before death than the pre-PPO cohort (median 88 vs. 32 days, p = 0.027), and spent fewer days hospitalized in the last 90 days of life (median 3 vs. 8 days, p = 0.0084). CONCLUSION: A limited-day, embedded PPO clinic was associated with receipt of PPC and spending more time at home in patients with cancer who had high-risk events. Continued improvements to these outcomes would be expected with additional oncology provider education and PPO personnel.
Identifier
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<a href="http://doi.org/10.1007/s00520-020-05671-y" target="_blank" rel="noreferrer noopener">10.1007/s00520-020-05671-y</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).
2020
Allen K E
Brock K E
DeGroote N P
end-of-life
Falk E
Klick J
Oncology 2020 List
Pediatric Oncology
Pediatric Palliative Care
Supportive Care
Supportive Care In Cancer
Velozzi-Averhoff C
Wasilewski-Masker K
-
Dublin Core
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Title
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2020 Oncology List
Text
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Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2020.6696" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2020.6696</a>
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Association of Religious and Spiritual Factors With Patient-Reported Outcomes of Anxiety, Depressive Symptoms, Fatigue, and Pain Interference Among Adolescents and Young Adults With Cancer
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JAMA Network Open
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2020
Subject
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pediatrics; adolescent; end-of-life; oncology; pediatric cancer; psychiatry; depressive disorders; anxiety disorders
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Grossoehme D H; Friebert S; Baker J N; Tweddle M; Needle J; Chrastek J; Thompkins J; Wang J; Cheng Y I; Lyon M E
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ImportanceThe associations of spiritual and religious factors with patient-reported outcomes among adolescents with cancer are unknown.ObjectiveTo model the association of spiritual and religious constructs with patient-reported outcomes of anxiety, depressive symptoms, fatigue, and pain interference.Design, Setting, and ParticipantsThis cross-sectional study used baseline data, collected from 2016 to 2019, from an ongoing 5-year randomized clinical trial being conducted at 4 tertiary-referral pediatric medical centers in the US. A total of 366 adolescents were eligible for the clinical trial, and 126 were randomized; participants had to be aged 14 to 21 years at enrollment and be diagnosed with any form of cancer. Exclusion criteria included developmental delay, scoring greater than 26 on the Beck Depression Inventory II, non-English speaking, or unaware of cancer diagnosis.ExposuresSpiritual experiences, values, and beliefs; religious practices; and overall self-ranking of spirituality’s importance.Main Outcomes and MeasuresVariables were taken from the Brief Multidimensional Measurement of Religiousness/Spirituality (ie, feeling God’s presence, daily prayer, religious service attendance, being very religious, and being very spiritual) and the spiritual well-being subscales of the Functional Assessment of Chronic Illness Therapy (meaning/peace and faith). Predefined outcome variables were anxiety, depressive symptoms, fatigue, and pain interference from Patient-Reported Outcomes Measurement Information System pediatric measures.ResultsA total of 126 individuals participated (72 [57.1%] female participants; 100 [79.4%] white participants; mean [SD] age, 16.9 [1.9] years). Structural equation modeling showed that meaning and peace were inversely associated with anxiety (β = –7.94; 95% CI, –12.88 to –4.12), depressive symptoms (β = –10.49; 95% CI, –15.92 to –6.50), and fatigue (β = –8.90; 95% CI, –15.34 to –3.61). Feeling God’s presence daily was indirectly associated with anxiety (β = –3.37; 95% CI, –6.82 to –0.95), depressive symptoms (β = –4.50; 95% CI, –8.51 to –1.40), and fatigue (β = –3.73; 95% CI, –8.03 to –0.90) through meaning and peace. Considering oneself very religious was indirectly associated with anxiety (β = –2.81; 95% CI, –6.06 to –0.45), depressive symptoms (β = −3.787; 95% CI, –7.68 to –0.61), and fatigue (β = –3.11, 95% CI, –7.31 to –0.40) through meaning and peace. Considering oneself very spiritual was indirectly associated with anxiety (β = 2.11; 95% CI, 0.05 to 4.95) and depression (β = 2.8, 95% CI, 0.07 to 6.29) through meaning and peace. No associations were found between spiritual scales and pain interference.Conclusions and RelevanceIn this study, multiple facets of spirituality and religiousness were associated with anxiety, depression, and fatigue, all of which were indirectly associated with the participant’s sense of meaning and peace, which is a modifiable process. Although these results do not establish a causal direction, they do suggest palliative interventions addressing meaning-making, possibly including a spiritual or religious dimension, as a novel focus for intervention development.
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<a href="http://doi.org/10.1001/jamanetworkopen.2020.6696" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.6696</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).
2020
Adolescent
Anxiety Disorders
Baker J N
Cheng Y I
Chrastek J
depressive disorders
end-of-life
Friebert S
Grossoehme D H
JAMA Network Open
Lyon M E
Needle J
Oncology
Oncology 2020 List
Pediatric Cancer
Pediatrics
Psychiatry
Thompkins J
Tweddle M
Wang J
-
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Title
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2020 Oncology List
Text
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Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.020" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.04.020</a>
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Title
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Racial and Ethnic Differences in Communication and Care for Children With Advanced Cancer
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Journal of Pain and Symptom Management
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2020
Subject
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pediatric; prognosis; cancer; end-of-life; disparities; communication
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Mack J W; Uno H; Twist C J; Bagatell R; Rosenberg A R; Marachelian A; Granger M M; Glade Bender J; Baker J N; Park J R; Cohn S L; Fernandez J H; Diller L R; Shusterman S
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Context: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer. Objective(s): To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer. Method(s): We conducted a prospective cohort study at nine pediatric cancer centers enrolling 95 parents (42% racial/ethnic minorities) of children with poor prognosis cancer (relapsed/refractory high-risk neuroblastoma). Parents were surveyed about whether prognosis was discussed; likelihood of cure; intent of current treatment; and primary goal of care. Medical records were used to identify high-intensity medical care since the most recent recurrence. Logistic regression evaluated differences between white non-Hispanic and minority (black, Hispanic, and Asian/other race) parents. Result(s): About 26% of parents recognized the child's low likelihood of cure. Minority parents were less likely to recognize the poor prognosis (odds ratio [OR] = 0.19; 95% CI = 0.06-0.63; P = 0.006) and the fact that current treatment was unlikely to offer cure (OR = 0.07; 95% CI = 0.02-0.27; P < 0.0001). Children of minority parents were more likely to experience high-intensity medical care (OR = 3.01; 95% CI = 1.29-7.02; P = 0.01). After adjustment for understanding of prognosis, race/ethnicity was no longer associated with high-intensity medical care (adjusted odds ratio = 2.14; 95% CI = 0.84-5.46; P = 0.11), although power to detect an association was limited. Conclusion(s): Parental understanding of prognosis is limited across racial and ethnic groups; racial and ethnic minorities are disproportionately affected. Perhaps as a result, minority children experience higher rates of high-intensity medical care. Work to improve prognostic understanding should include focused work to meet needs of minority populations. Copyright © 2020 American Academy of Hospice and Palliative Medicine
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.020" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.020</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).
2020
Bagatell R
Baker J N
Cancer
Cohn S L
Communication
Diller L R
Disparities
end-of-life
Fernandez J H
Glade Bender J
Granger M M
Journal of Pain and Symptom Management
Mack J W
Marachelian A
Oncology 2020 List
Park J R
Pediatric
Prognosis
Rosenberg A R
Shusterman S
Twist C J
Uno H
-
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2020 Oncology List
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Oncology 2020 List
URL Address
<a href="http://doi.org/10.12968/ijpn.2020.26.3.100" target="_blank" rel="noreferrer noopener">http://doi.org/10.12968/ijpn.2020.26.3.100</a>
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Title
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Paediatric oncology providers' perspectives on early integration of paediatric palliative care
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International journal of palliative nursing
Date
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2020
Subject
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end-of-life; communication; paediatric palliative care; children with cancer; interdisciplinary collaboration; paediatric oncology providers
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Saad R; Kurdahi L B; Yazbick-Dumit N; Irani C; Muwakkit S
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BACKGROUND: Healthcare providers' perceptions of palliative care in children with cancer influence care management, specifically that of its early integration. Thus, it is crucial to understand the perspectives of the providers on early integration of palliative care so that measures to create informed care decisions are based on reconciling their views. AIMS: To explore the perceptions of paediatric oncology providers at the Children's Cancer Institute (CCI) in Lebanon regarding the integration of early paediatric palliative care (PPC) in the management of children with cancer. METHOD(S): A qualitative descriptive research design with focus groups was used in a leading paediatric oncology setting. FINDINGS: The thematic analysis yielded four themes: (1) healthcare providers understood palliative care as pain relief and psychological support mainly at the end of life; (2) the timing of integrating PPC is linked to end of life, advanced disease or treatment failure; (3) interdisciplinary collaboration is important for addressing patients' and families' needs effectively; and (4) communication with the child and family is one of the most difficult aspects of integrating PPC. CONCLUSION(S): This study demonstrated the perceptions of healthcare providers about early palliative care in paediatric oncology in Lebanon. It also highlighted the importance of interdisciplinary collaboration and effective communication with the child and family for better management of PPC.
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<a href="http://doi.org/10.12968/ijpn.2020.26.3.100" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2020.26.3.100</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).
2020
children with cancer
Communication
end-of-life
interdisciplinary collaboration
International Journal of Palliative Nursing
Irani C
Kurdahi L B
Muwakkit S
Oncology 2020 List
paediatric oncology providers
paediatric palliative care
Saad R
Yazbick-Dumit N
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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February 2021 List
Text
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February 2021 List
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<a href="http://doi.org/10.1177/0269216320967547" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216320967547</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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Home or hospital as the place of end-of-life care and death: A grounded theory study of parents' decision-making
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Palliative Medicine
Date
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2020
Subject
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hospital; home care; end-of-life; Decision-making; place of death; grounded theory
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Papadatou D; Kalliani V; Karakosta E; Liakopoulou P; Bluebond-Langner M
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BACKGROUND: While several studies have examined 'what' families want with regard to the place of a child's end-of-life care and death, few have explored 'how' parents reach a decision. AIMS: (1) to develop a model explaining how parents of a child with a life-threatening illness in Greece decide about the place of end-of-life care and death; (2) to identify the factors affecting decision-making; (3) to consider the implications for clinical practice. DESIGN: Grounded theory study of bereaved parents using semi-structured open-ended interviews following Strauss and Corbin's principles of data collection and analysis. SETTING/PARTICIPANTS: Semi-structured interviews with 36 bereaved parents of 22 children who died at home (n = 9) or in a paediatric hospital (n = 13) in Athens, Greece. RESULTS: (1) Decisions regarding place of care and death were reached in one of four ways: consensus, accommodation, imposition of professional decisions on parents or imposition of parents' decisions without including professionals. (2) Six factors were identified as affecting decisions: awareness of dying, perceived parental caregiving competence, perceived professional competence, parents' view of symptom management, timing of decision-making, and being a 'good parent'. (3) Decisions were clear-cut or shifting. Few parents did not engage in decisions. CONCLUSION: Parents' decisions about place of end-of-life care and death are affected by personal, interpersonal, timing and disease-related factors. Parents are best supported in decision-making when information is presented clearly and honestly with recognition of what acting as 'good parents' means to them, and opportunities to enhance their caregiving competence to care for their child at home, if they choose so.
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<a href="http://doi.org/10.1177/0269216320967547" target="_blank" rel="noreferrer noopener">10.1177/0269216320967547</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).
2020
Bluebond-Langner M
Decision-making
end-of-life
February 2021 List
Grounded Theory
Home Care
Hospital
Kalliani V
Karakosta E
Liakopoulou P
Palliative Medicine
Papadatou D
Place Of Death