1
40
298
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Title
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April 2024 List
Text
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April List 2024
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2023.53264" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2023.53264</a>
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Title
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Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates
Publisher
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JAMA Network Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
Infant Newborn; Decision Making; Germany; terminal care; adult; female; human; major clinical study; male; newborn; quality of life; aged; interview; physician; life sustaining treatment; shared decision making; cross-sectional study; medical ethics; middle aged; adolescent; parent; conference paper; decision making; euthanasia; treatment withdrawal; socioeconomics; attitude to health; sociodemographics; comprehension; German (language)
Creator
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Schneider K; Roll S; Tissen-Diabate T; Buhrer C; Garten L
Description
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Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the general public have not yet been investigated. Objective: To assess (1) attitudes in the general public toward euthanasia and withdrawal of life-prolonging treatment in neonates with severe life-limiting conditions, (2) knowledge of current German recommendations, and (3) values in the German society regarding ethical issues and proxy decisions at the beginning of life. Design, setting, and participants: This cross-sectional study was performed in Germany and used an exploratory design to analyze responses to an interview conducted by an independent, established commissioned polling institute in March and April 2022. Participants were 16 years or older, with German language fluency and comprehension and living in Germany. Main outcomes and measures: Knowledge about recommendations for euthanasia and withdrawal of life-prolonging treatment as well as personal attitudes toward (1) euthanasia and withdrawal of life-prolonging treatment and (2) surrogate end-of-life decision-making for newborn infants were assessed. Results: The study included 2116 participants (1077 females [50.9%]; mean [SD] age 52.1 [18.7] years). Of the participants, 16.8% (311 of 1851) reported knowing the German recommendations for euthanasia and withdrawal of life-prolonging treatment for neonates. Euthanasia and withdrawal of life-prolonging treatment were supported by 64.7% (1369 of 2116) and 77.9% (1649 of 2116) of respondents, respectively. Shared decision-making between parents and physicians for neonates in end-of-life situations was supported by 65.6% of participants (1388). In situations where shared decision-making was not possible, 73.4% of respondents (1019 of 1388) put the ultimate decision to the parents. The magnitude of the associations was low between sociodemographic factors and views on ethical issues and customary practices involved in end-of-life decisions for neonates. Conclusions and relevance: Results of this cross-sectional study suggested that most respondents were not aware of the national German recommendations for euthanasia and withdrawal of life-prolonging treatment for sick and extremely preterm newborns. When counseling parents of periviable newborns, clinicians may need to exert more effort in explaining the legal and ethical framework; a highly individualized approach is warranted.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2023.53264" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2023.53264</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Adolescent
Adult
Aged
April List 2024
Attitude To Health
Bührer C
Comprehension
Conference Paper
Cross-sectional Study
Decision Making
Euthanasia
Female
Garten L
German (language)
Germany
Human
Infant Newborn
Interview
JAMA Network Open
Life Sustaining Treatment
Major Clinical Study
Male
Medical Ethics
Middle Aged
Newborn
Parent
Physician
Quality Of Life
Roll S
Schneider K
shared decision making
sociodemographics
Socioeconomics
Terminal Care
Tissen-Diabate T
Treatment Withdrawal
-
Dublin Core
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Title
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April 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.3389/fped.2023.1266929" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fped.2023.1266929</a>
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Title
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Psychometrics assessment of ethical decision-making around end-of-life care scale for adolescents in the final stage of life
Publisher
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Frontiers in Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Adolescent; Terminal Care; terminal care; article; female; human; male; validity; Psychometrics; reliability; Iran; human experiment; health care personnel; adolescent; case control study; decision making; nurse manager; psychometry; ethical decision making; confirmatory factor analysis; Cronbach alpha coefficient; internal consistency; exploratory factor analysis
Creator
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Mohammadi F; Masoumi SZ; Khazaei S; Hosseiny SMM
Description
An account of the resource
Introduction: Healthcare professionals have a critical role in ethical decision-making around end-of-life care. Properly evaluating the ethical decision-making of health care professionals in end-of-life care requires reliable, tailored, and comprehensive assessments. The current study aimed to translate and assess psychometrically a Persian version of the ethical decision making in end-of-life care scale for Iranian adolescents in the final stages of life. Methods: The present study investigates the methodology and multicenter research. 310 healthcare professionals who treat/care for adolescents at the end of life were selected from 7 cities in Iran. The original version of the end-of-life care decision-making scale was translated into Persian using the forward-backward translation method, and its psychometric properties were evaluated using COSMIN criteria. Results: Exploratory factor analysis revealed that the factor loadings of the items ranged from 0.68 to 0.89, all of which were statistically significant. Furthermore, three factors had eigenvalues greater than 1, accounting for 81.64% of the total variance. Confirmatory factor analysis indicated a proper goodness of fit in the hypothesized factor structure. The internal consistency reliability of the tool was assessed in terms of its homogeneity, yielding a Cronbach's alpha coefficient of 0.93. Conclusion: The Persian version of the End-of-Life Care Decision-Making Scale demonstrates satisfactory validity and reliability among healthcare professionals working with adolescents in the final stages of life. Therefore, nursing managers can utilize this tool to measure and evaluate ethical decision-making in end-of-life care for adolescents in the final stages of life and identify the most appropriate strategies, including educational interventions, to improve ethical decision-making in end-of-life care if necessary.
Identifier
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<a href="http://doi.org/10.3389/fped.2023.1266929" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1266929</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).
2023
Adolescent
April List 2024
Article
case control study
Child
confirmatory factor analysis
Cronbach alpha coefficient
Decision Making
Ethical Decision Making
exploratory factor analysis
Female
Frontiers in Pediatrics
Health Care Personnel
Hosseiny SMM
Human
Human Experiment
Internal Consistency
Iran
Khazaei S
Male
Masoumi SZ
Mohammadi F
nurse manager
Psychometrics
psychometry
Reliability
Terminal Care
Validity
-
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Title
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April 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1186/s12904-024-01345-2" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-024-01345-2</a>
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Title
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Exploring spirituality, religion and life philosophy among parents of children receiving palliative care: a qualitative study
Publisher
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BMC Palliative Care
Date
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2024
Subject
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child; Palliative Care; adult; article; female; human; male; palliative therapy; aged; coping; knowledge; Spain; personal experience; terminal disease; parent; qualitative research; health care personnel; decision making; interview; pediatric hospital; clinician; religion; philosophy; religiosity; Southern European
Creator
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Miquel P; Clemente I; Ciccorossi M
Description
An account of the resource
Background: Few studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an increase of cultural and religious diversities resulting in a much broader spectrum of spiritual and religious beliefs. This study aimed to explore the parents' own spirituality, religiosity, and philosophy of life in coping with the care of their child with palliative needs. Methods: Qualitative interviews of 14 parents of children included in a palliative care program in a pediatric hospital in Barcelona, Spain. Inclusion criteria were parents of children who have been cared for the palliative care program for a minimum of 3 months and who displayed a willingness to talk about their personal experiences and gave written consent. Interviews were audio-recorded, transcribed by an independent service, and analyzed on a case-by-case basis using Interpretative Phenomenological Analysis. Results: The three domains identified were life philosophy, relational, and transcendent. Life philosophy included principles that guided parents' decision-making, and how the onset of their child's serious illness had promoted a change in their values. Relational was focused on how they perceived themselves (e.g. motherhood), others (e.g. one's own child exceptionality), and the way they believed others perceived and supported them (e.g. relatives, friends, and healthcare providers). The transcendent domain involved God-related concepts, divinity and divine intervention (e.g. a miracle as an interpretive framework for that which cannot be explained within scientific knowledge limitations). Conclusions: Inflexible categories identifying parents as having a particular religious faith tradition are not sufficient to capture the interrelation of knowledges (ethical, religious, scientific) that each parent generates when faced with their child receiving palliative care. Clinicians should explore parents' spirituality in an individualized way that responds to the uniqueness of their experiential process.
Identifier
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<a href="http://doi.org/10.1186/s12904-024-01345-2" target="_blank" rel="noreferrer noopener">10.1186/s12904-024-01345-2</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Adult
Aged
April List 2024
Article
BMC Palliative Care
Child
Ciccorossi M
Clemente I
Clinician
Coping
Decision Making
Female
Health Care Personnel
Human
Interview
Knowledge
Male
Miquel P
Palliative Care
Palliative Therapy
Parent
Pediatric Hospital
Personal Experience
Philosophy
Qualitative Research
Religion
religiosity
Southern European
Spain
terminal disease
-
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Title
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April 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1111/apa.17084" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.17084</a>
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Serious news communication between clinicians and parents impacts parents' experiences, decision-making, and clinical care for critically ill neonates
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
Infant Newborn; Critical Illness; article; human; newborn; quality of life; palliative therapy; health care; parent; interpersonal communication; shared decision making; clinical outcome; neonatal intensive care unit; communication disorder; critically ill patient; decision making; prenatal diagnosis; semi structured interview; conversation; personal experience; purposive sample; clinician
Creator
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Kukora S; Krenz C; DeVries R; Spector-Bagdady K
Description
An account of the resource
Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations rather than engage with empathy.1 Poor communication in the neonatal intensive care unit (NICU) when an infant is critically ill or dies can have deleterious effects on decision-making and long-term parental coping.2 Provision of information is imperative to shared decision-making about clinical therapies or care goals.3 Failure to effectively convey information could lead to decisions that do not align with parents' values, associated with long-term grief, decisional conflict, and regret.4, 5 Additionally, inability of clinicians to listen and engage with parents can lead to mistrust in the care team.3, 6 Parents recall in detail how serious news is delivered even years after hospitalisation,7 and their perceptions of these interactions impact their well-being.4, 7 Despite this, few studies have investigated parents' perspectives on serious news communication in the NICU. In this study, we sought to better characterise the communication problems parents of critically ill infants perceive in the antenatal and neonatal period around serious news conversations and to identify potential clinical care consequences arising from these communication issues...
Identifier
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<a href="http://doi.org/10.1111/apa.17084" target="_blank" rel="noreferrer noopener">10.1111/apa.17084</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Acta Paediatrica
April List 2024
Article
Clinical Outcome
Clinician
communication disorder
Conversation
Critical Illness
Critically Ill Patient
Decision Making
DeVries R
Health Care
Human
Infant Newborn
Interpersonal Communication
Krenz C
Kukora S
Neonatal Intensive Care Unit
Newborn
Palliative Therapy
Parent
Personal Experience
Prenatal Diagnosis
Purposive Sample
Quality Of Life
Semi Structured Interview
shared decision making
Spector-Bagdady K
-
Dublin Core
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Title
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April 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1186/s12904-024-01394-7" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-024-01394-7</a>
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Title
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Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
child; Adolescent; Questionnaires; article; controlled study; female; human; male; palliative therapy; clinical article; caregiver; school child; human experiment; prospective study; adolescent; wakefulness; therapy; decision making; drug therapy; chronic disease; questionnaire; special situation for pharmacovigilance; actimetry; diagnostic procedure; protocol; sleep; actigraph; sleep efficiency; sleep time; stage 1 sleep; wake after sleep onset
Creator
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Kubek LA; Claus B; Zernikow B; Wager J
Description
An account of the resource
Background: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other measures of sleep diagnostics. Methods: In this monocentric prospective study N = 26 children and adolescents with life-limiting conditions treated on a pediatric palliative care unit were assessed. For three consecutive nights they wore an actigraph; the 24-hours sleep protocol documented by nurses and the Sleep Screening for Children and Adolescents with Complex Chronic Conditions (SCAC) answered by parents were analyzed. Patient characteristics and the parameters sleep onset, sleep offset, wake after sleep onset (WASO), number of wake phases, total sleep time (TST) and sleep efficiency (SE) were descriptively examined. Percentage bend correlations evaluated the three measures' concordance. Results: Descriptively, and except for the number of waking episodes, the different measures' estimations were comparable. Significant correlations existed between actigraphy and the sleep protocol for sleep onset (r = 0.83, p = < 0.001) and sleep offset (r = 0.89, p = < 0.001), between actigraphy and SCAC for SE (r = 0.59, p = 0.02). Conclusion: Agreement of actigraphy with the focused sleep measures seems to be basically given but to varying degrees depending on the considered parameters.
Identifier
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<a href="http://doi.org/10.1186/s12904-024-01394-7" target="_blank" rel="noreferrer noopener">10.1186/s12904-024-01394-7</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).
2024
actigraph
actimetry
Adolescent
April List 2024
Article
BMC Palliative Care
Caregiver
Child
Chronic Disease
Claus B
Clinical Article
Controlled Study
Decision Making
diagnostic procedure
Drug Therapy
Female
Human
Human Experiment
Kubek LA
Male
Palliative Therapy
Prospective Study
protocol
Questionnaire
Questionnaires
School Child
Sleep
sleep efficiency
sleep time
special situation for pharmacovigilance
stage 1 sleep
Therapy
Wager J
wake after sleep onset
Wakefulness
Zernikow B
-
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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April 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1016/j.cppeds.2024.101569" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.cppeds.2024.101569</a>
Dublin Core
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Title
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How to move forward in shared decision-making in pediatric palliative care
Publisher
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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
2024
Subject
The topic of the resource
child; Palliative Care; Decision Making; article; human; palliative therapy; clinical article; adolescent; therapy; infant; shared decision making; special situation for pharmacovigilance
Creator
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Joren CY; Aris-Meijer JL; Verhagen AAE; Lantos J
Description
An account of the resource
Pediatric palliative care has grown immensely in recent years in the world. However, shared decision-making remains a complex process, especially in pediatric palliative care. In particular, a number of issues are priorities to improve the shared decision-making process and ensure high-quality pediatric palliative care for every child. Working on these priorities will improve shared decision-making and thereby enhance high-quality pediatric palliative care around the globe.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.cppeds.2024.101569" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2024.101569</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Adolescent
April List 2024
Aris-Meijer JL
Article
Child
Clinical Article
Current Problems in Pediatric and Adolescent Health Care
Decision Making
Human
Infant
Joren CY
Lantos J
Palliative Care
Palliative Therapy
shared decision making
special situation for pharmacovigilance
Therapy
Verhagen AAE
-
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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April 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1016/j.semperi.2023.151870" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.semperi.2023.151870</a>
Dublin Core
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Title
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The most painful estrangement: Death at birth
Publisher
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Seminars in Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
article; human; social support; palliative therapy; coping; mourning; stillbirth; guilt; depression; emotion; identity; suicide; posttraumatic stress disorder; personal experience; bereavement; avoidance behavior; emotional stress; child death; prevalence; decision making; family history; regret; emotional support; lactation; sadness; fear; continuing education; sorrow; community care; stigma; spontaneous abortion; self concept; shame; loneliness; alienation; complicated grief/dt [Drug Therapy]; family stress; naltrexone/dt [Drug Therapy]; rage; social bonding; traffic accident
Creator
An entity primarily responsible for making the resource
Cacciatore J
Description
An account of the resource
More than two million babies a year die during or before birth around the world, evoking grief that is traumatic. Because the psychological, physical, social, and emotional ramifications of grief following a baby's death are so enduring and intense, social support is essential to helping families cope. In particular, emotional acts of caring and judicious use of language are crucial, avoiding the use of the terms that belittle the value of the baby's life and the importance of the baby as part of a family history. Traumatic grief informed continuing education can aid providers in increasing sensitivity to the needs of grieving families and minimize additional trauma and suffering in the aftermath of such loss.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.semperi.2023.151870" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2023.151870</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
alienation
April List 2024
Article
avoidance behavior
Bereavement
Cacciatore J
Child Death
community care
complicated grief/dt [Drug Therapy]
continuing education
Coping
Decision Making
Depression
Emotion
Emotional Stress
emotional support
family history
Family Stress
Fear
Guilt
Human
Identity
lactation
Loneliness
mourning
naltrexone/dt [Drug Therapy]
Palliative Therapy
Personal Experience
PostTraumatic Stress Disorder
Prevalence
rage
regret
Sadness
Self Concept
Seminars in Perinatology
shame
social bonding
Social Support
sorrow
spontaneous abortion
Stigma
Stillbirth
Suicide
traffic accident
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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March 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March List 2024
URL Address
<a href="http://doi.org/10.1136/bmjopen-2023-075740" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjopen-2023-075740</a>
Dublin Core
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Title
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Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia
Publisher
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BMJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Australia; care behavior; decision making; interpersonal communication; parent; pediatrician; phenomenology; article; child; courage; human; interview; male; palliative therapy; shared decision making; signal transduction; simulation
Creator
An entity primarily responsible for making the resource
Vemuri S; Hynson J; Williams K; O'Neill J; Gillam L
Description
An account of the resource
Background/objectives: Shared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find benefit in preparing for such decisions. However, little detail is known about this preparatory process. This study aims to explore how paediatricians prepare parents for end-of-life decision-making for a child with a life-limiting condition using clinical simulation. Design: Individual, semistructured, post-simulation qualitative interviews of paediatricians and parent-actors. Setting: Acute intensive and long-term outpatient paediatric care in Victoria, Australia. Participants: 18 purposively sampled paediatricians who treat children with life-limiting conditions and the two parent-actors involved in all simulations. Paediatricians were excluded if they assisted in the study design, worked within specialist palliative care teams or did not provide clinical care outside the neonatal period. Results: Three key themes in a preparatory process (termed 'shepherding') were identified: (1) paediatricians aim to lead parents along a pathway to future end-of-life decisions, (2) paediatricians prefer to control the pace of these discussions and (3) paediatricians recognise they need to have courage to face risk with this preparation. Paediatricians use a variety of shepherding strategies to influence the pace, content and framing of discussions, which may help prepare parents to make the best end-of-life treatment decisions when the time comes. Conclusions: Shepherding is a newly identified, subtle process intended to influence parents by guiding their understanding of their child's health and potential suffering in advance of decision-making. Shepherding does not fit within current descriptions of physicians' decision-making influence. Paced reflection, thinking and provision of information are shepherding strategies preferred by paediatricians, and these appear the same regardless of whether paediatricians intend to steer parents towards particular treatment decisions or simply prepare them for the process of decision-making. Further study about the intention of this influence and parental perception of this communication is needed.
Identifier
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<a href="http://doi.org/10.1136/bmjopen-2023-075740" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2023-075740</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).
2023
Article
Australia
Bmj Open
care behavior
Child
courage
Decision Making
Gillam L
Human
Hynson J
Interpersonal Communication
Interview
Male
March List 2024
O'Neill J
Palliative Therapy
Parent
Pediatrician
Phenomenology
shared decision making
Signal Transduction
Simulation
Vemuri S
Williams K
-
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Text
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March List 2024
URL Address
<a href="http://doi.org/10.1111/apa.17109" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.17109</a>
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Title
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Parents' experiences of palliative care decision-making in neonatal intensive care units: An interpretative phenomenological analysis
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Acta Paediatrica
Date
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2024
Subject
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decision making; medical ethics; neonatal intensive care unit; newborn intensive care; palliative therapy; parent; qualitative research; ambivalence; article; clinical article; father; female; human; Infant Newborn; Intensive Care Units; interview; life sustaining treatment; male; meaning-making; shared decision making
Creator
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SaintDenny K; Lamore K; Nandrino JL; Rethore S; Prieur C; Mur S; Storme L
Description
An account of the resource
Aim: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn. Methods: Audio-recorded face-to-face interviews were led and analysed using interpretative phenomenological analysis. Eight families (seven mothers and five fathers) whose baby underwent withholding and/or withdrawing of life-sustaining treatment in three neonatal intensive care units from two regions in France were included. Results: The findings reveal two paradoxes within the meaning-making process of parents: role ambivalence and choice ambiguity. We contend that these paradoxes, along with the need to mitigate uncertainty, form protective psychological mechanisms that enable parents to cope with the decision, maintain their parental identity and prevent decisional regret. Conclusion: Role ambivalence and choice ambiguity should be considered when shared decision-making in the neonatal intensive care unit. Recognising and addressing these paradoxical beliefs is essential for informing parent support practices and professional recommendations, as well as add to ethical discussions pertaining to parental autonomy and physicians' rapport to uncertainty.
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<a href="http://doi.org/10.1111/apa.17109" target="_blank" rel="noreferrer noopener">10.1111/apa.17109</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Acta Paediatrica
ambivalence
Article
Clinical Article
Decision Making
Father
Female
Human
Infant Newborn
Intensive Care Units
Interview
Lamore K
Life Sustaining Treatment
Male
March List 2024
meaning-making
Medical Ethics
Mur S
Nandrino JL
Neonatal Intensive Care Unit
Newborn Intensive Care
Palliative Therapy
Parent
Prieur C
Qualitative Research
Rethore S
SaintDenny K
shared decision making
Storme L
-
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Title
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Text
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March List 2024
URL Address
<a href="http://doi.org/10.1097/PCC.0000000000001488" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/PCC.0000000000001488</a>
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Ethical, Cultural, Social, and Individual Considerations Prior to Transition to Limitation or Withdrawal of Life-Sustaining Therapies
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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decision making; ethics; child; child parent relation; critical illness/th [Therapy]; female; human; male; patient participation; pediatric intensive care unit; psychology; social media; terminal care; transcultural care; treatment withdrawal
Creator
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Kirsch RE; Balit CR; Carnevale FA; Latour JM; Larcher V
Description
An account of the resource
As part of the invited supplement on Death and Dying in the PICU, we reviewed ethical, cultural, and social considerations for the bedside healthcare practitioner prior to engaging with children and families in decisions about limiting therapies, withholding, or withdrawing therapies in a PICU. Clarifying beliefs and values is a necessary prerequisite to approaching these conversations. Striving for medical consensus is important. Discussion, reflection, and ethical analysis may determine a range of views that may reasonably be respected if professional disagreements persist. Parental decisional support is recommended and should incorporate their information needs, perceptions of medical uncertainty, child's condition, and their role as a parent. Child's involvement in decision making should be considered, but may not be possible. Culturally attuned care requires early examination of cultural perspectives before misunderstandings or disagreements occur. Societal influences may affect expectations and exploration of such may help frame discussions. Hospital readiness for support of social media campaigns is recommended. Consensus with family on goals of care is ideal as it addresses all parties' moral stance and diminishes the risk for superseding one group's value judgments over another. Engaging additional supportive services early can aid with understanding or resolving disagreement. There is wide variation globally in ethical permissibility, cultural, and societal influences that impact the clinician, child, and parents. Thoughtful consideration to these issues when approaching decisions about limitation or withdrawal of life-sustaining therapies will help to reduce emotional, spiritual, and ethical burdens, minimize misunderstanding for all involved, and maximize high-quality care delivery.
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<a href="http://doi.org/10.1097/PCC.0000000000001488" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000001488</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Balit CR
Carnevale FA
Child
Child Parent Relation
Critical Illness/th [therapy]
Decision Making
Ethics
Female
Human
Kirsch RE
Larcher V
Latour JM
Male
March List 2024
Patient Participation
Pediatric Critical Care Medicine
Pediatric Intensive Care Unit
Psychology
social media
Terminal Care
transcultural care
Treatment Withdrawal
-
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Title
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March 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March List 2024
URL Address
<a href="http://doi.org/10.1097/PCC.0000000000001557" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/PCC.0000000000001557</a>
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Title
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Discussing Death as a Possible Outcome of PICU Care
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
attitude to death; death; child; critical illness; decision making; doctor patient relationship; family; female; human; interpersonal communication; male; pediatric intensive care unit; physician; psychology; risk assessment; terminal care; uncertainty
Creator
An entity primarily responsible for making the resource
Gilleland JC; Parshuram CS
Description
An account of the resource
OBJECTIVES: To describe practical considerations related to discussions about death or possible death of a critically ill child. DATA SOURCES: Personal experience and reflection. Published English language literature. STUDY SELECTION: Selected illustrative studies. DATA EXTRACTION: Not available. DATA SYNTHESIS: Narrative and experiential review were used to describe the following areas benefits and potential adverse consequences of conversations about risk of death and the timing of, preparation for, and conduct of conversations about risk of death. <br/>CONCLUSION(S): Timely conversations about death as a possible outcome of PICU care are an important part of high-quality ICU care. Not all patients "require" these conversations; however, identifying patients for whom conversations are indicated should be an active process. Informed conversations require preparation to provide the best available objective information. Information should include distillation of local experience, incorporate the patients' clinical trajectory, the potential impact(s) of alternate treatments, describe possible modes of death, and acknowledge the extent of uncertainty. We suggest the more factual understanding of risk of death should be initially separated from the more inherent value-laden treatment recommendations and decisions. Gathering and sharing of collective knowledge, conduct of additional investigations, and time can increase the factual content of risk of death discussions. Timely and sensitive delivery of this best available knowledge then provides foundation for high-quality treatment recommendations and decision-making.
Identifier
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<a href="http://doi.org/10.1097/PCC.0000000000001557" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000001557</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Attitude To Death
Child
Critical Illness
Death
Decision Making
doctor patient relationship
Family
Female
Gilleland JC
Human
Interpersonal Communication
Male
March List 2024
Parshuram CS
Pediatric Critical Care Medicine
Pediatric Intensive Care Unit
Physician
Psychology
Risk Assessment
Terminal Care
Uncertainty
-
Dublin Core
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Title
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March 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March List 2024
URL Address
<a href="http://doi.org/10.1016/j.cppeds.2023.101549" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.cppeds.2023.101549</a>
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Title
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Shared decision-making in pediatric palliative care in the Netherlands
Publisher
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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
2024
Subject
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Netherlands; palliative therapy; shared decision making; advance care planning; article; child; clinical article; Decision Making; diagnosis; evidence based practice; health care personnel; human; Netherlands; Palliative Care
Creator
An entity primarily responsible for making the resource
Em M; Cy J; Mc K; Jl A; Aae V
Description
An account of the resource
Shared decision-making (SDM) is a process in which health care professionals (HCPs) involve parents and children - when appropriate- to decide together on future treatment. These decisions are based on values that are important for the family, goals of care and preferences for future care and treatment. Elucidation of these values and preferences is preferably done early in the disease trajectory via so-called Advance Care Planning (ACP) conversations. In the Netherlands, ACP and SDM are being adopted by most health care professionals. This has happened only recently. Ten years ago, ACP and SDM were unknown concepts for the vast majority of Dutch HCPs. Today, interest in these conversational approaches is booming in both daily practice and in research. This rise has been reinforced by two recent major advancements in Dutch pediatric palliative care: the Individual Care Plan (ICP) and the Dutch Evidence-Based Guideline on Pediatric Palliative Care (DGPPC). Despite this positive evolution, a lot of work is still ahead. ACP and SDM demand a change in mindset from the traditional paternalistic approach by which the HCP 'knows what is best for this child' to a more humble and open approach in which (non-medical) factors that are important to the child and family and may influence the final treatment decision. Such changes in mindset don't happen overnight. In this article we describe the situation of pediatric palliative care in the Netherlands, with focus on the recent evolution of ACP and SDM.
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<a href="http://doi.org/10.1016/j.cppeds.2023.101549" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2023.101549</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Aae V
Advance Care Planning
Article
Child
Clinical Article
Current Problems in Pediatric and Adolescent Health Care
Cy J
Decision Making
Diagnosis
Em M
evidence based practice
Health Care Personnel
Human
Jl A
March List 2024
Mc K
Netherlands
Palliative Care
Palliative Therapy
shared decision making
-
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Title
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March 2024 List
Text
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Citation List Month
March List 2024
URL Address
<a href="http://doi.org/10.1016/j.arcped.2023.10.004" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.arcped.2023.10.004</a>
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Parents' participation in collegial meetings to discuss withholding or withdrawing treatment for their newborn: Working to improve information-sharing
Publisher
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Archives de Pediatrie
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
decision making; life sustaining treatment; parent; adult; advisory committee; child; conference paper; female; follow up; grief; human; Infant Newborn; Information Dissemination; newborn; refusal to participate; retrospective study; terminal care; Withholding Treatment
Creator
An entity primarily responsible for making the resource
Boize P; Garner Y; Neaud E; Borrhomee S
Description
An account of the resource
Aim: The role of parents in decision-making concerning their child's end-of-life care is not clearly defined. Their participation is encouraged by ethical reflection, in particular by the CCNE (French National Ethics Advisory Committee), but laws are limited to imposing a duty to provide information to doctors. Decisions are taken at the end of a collegial meeting (CM) intended to better inform the child's referring physician (RP) who is in charge of the final decision following the French law. The aim of this study was to describe the support provided to bereaved families after they had been invited to attend a CM concerning their child, if they so wished. Additional aims were to determine the differences resulting from their acceptance or their refusal to participate as regards their perception of their child's history and as regards their grieving process. Material and method: We conducted a retrospective study of all CMs held between November 2016 and May 2021, drawing a distinction between proposals made or not made to parents and their decision to accept or refuse. Results: In total, 49 CMs concerning 46 children were held during the study period. The proposal was not made to the parents in three cases; the parents chose to be present in 28 cases. The psychological follow-up (15/28 parents attending, 10/16 parents absent) illustrated that their presence enabled them to reflect on their child's death after having listened to and understood the reasons why it happened. They did not dispute the team's approach or decisions taken. Conclusion: It is possible to include parents in CMs if they so wish. It would appear more beneficial than merely providing them with the information required. Studies must be carried out to ensure potential long-term benefit.
Identifier
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<a href="http://doi.org/10.1016/j.arcped.2023.10.004" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2023.10.004</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Adult
advisory committee
Archives de Pediatrie
Boize P
Borrhomee S
Child
Conference Paper
Decision Making
Female
Follow Up
Garner Y
Grief
Human
Infant Newborn
Information Dissemination
Life Sustaining Treatment
March List 2024
Neaud E
Newborn
Parent
Refusal To Participate
Retrospective Study
Terminal Care
Withholding Treatment
-
Dublin Core
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Title
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February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1177/10497323231201023" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10497323231201023</a>
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Title
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Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study
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
2023
Subject
The topic of the resource
child; article; controlled study; human; prematurity; palliative therapy; child parent relation; grief; uncertainty; bereavement; ethics; congenital malformation; morality; neonatal intensive care unit; infant; decision making; medical care; narrative
Creator
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Lakhani J; Mack C; Kunyk D; van Manen M
Description
An account of the resource
Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are many infants that not only do not survive but also have a medicalized death necessitating complex decision-making, weighing quality versus duration of life. We can learn from the stories of parents who chose palliative care for their children. In this narrative inquiry study, we elicited bereaved parents' stories and reflections on the lives of their children and the care they received in the NICU. From a narrative ethics perspective, their stories speak to normative aspects of parenting, decision-making, and receiving medical care that affect their moral sense-making of their NICU experiences as well as their longer-term living with the loss of their children. Their stories express the importance of having had meaningful time with their children, maintaining direct and frequent communication, acknowledging uncertainty, and emphasizing compassion as methods of providing support to parents as they navigate their bereavement.
Identifier
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<a href="http://doi.org/10.1177/10497323231201023" target="_blank" rel="noreferrer noopener">10.1177/10497323231201023</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).
2023
Article
Bereavement
Child
Child Parent Relation
Congenital Malformation
Controlled Study
Decision Making
Ethics
February List 2024
Grief
Human
Infant
Kunyk D
Lakhani J
Mack C
Medical Care
Morality
Narrative
Neonatal Intensive Care Unit
Palliative Therapy
Prematurity
Qualitative Health Research
Uncertainty
van Manen M
-
Dublin Core
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Title
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February 2024 List
Text
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Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1097/JPN.0000000000000780" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/JPN.0000000000000780</a>
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Title
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A Qualitative Study of Parents' Experiences of Bonding in End-of-Life Care in a Neonatal Intensive Care Unit
Publisher
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Journal of Perinatal & Neonatal Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; diagnosis; terminal care; adult; article; human; newborn; clinical article; interview; content analysis; parent; pilot study; qualitative research; newborn intensive care; neonatal intensive care unit; health care personnel; infant; decision making; powerlessness; parenthood; shame
Creator
An entity primarily responsible for making the resource
Funkquist EL; Lindquist A; Edner A
Description
An account of the resource
To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive. Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a neonatal intensive care unit. Methods: The interviews were pilot processed using inductive content analysis and then processed again using deductive content analysis with the attachment theory applied as a theoretical frame. Results: Three main themes emerged from the parents' descriptions: 1. The parents' relationship with the healthcare provider: an alliance between the parent and the healthcare provider can facilitate communication, for example, the use of proposals to promote parents' role in the care; 2. The parents' relationship with the infant: parents' wish to fulfill the role of a protective parent, and it is of importance for the parents' future well-being to take part in care and decision making; and 3. The parents' relationship with the own self: in this unknown situation, parents' expectations of parenthood are broken, and they experience feelings of shame and powerlessness. Conclusion: The relationship between the parent and the healthcare provider affects how the parents bond with their child and their experiences of the healthcare.
Identifier
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<a href="http://doi.org/10.1097/JPN.0000000000000780" target="_blank" rel="noreferrer noopener">10.1097/JPN.0000000000000780</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).
2023
Adult
Article
Child
Clinical Article
Content Analysis
Decision Making
Diagnosis
Edner A
February List 2024
Funkquist EL
Health Care Personnel
Human
Infant
Interview
Journal of Perinatal & Neonatal Nursing
Lindquist A
Neonatal Intensive Care Unit
Newborn
Newborn Intensive Care
Parent
parenthood
Pilot Study
Powerlessness
Qualitative Research
shame
Terminal Care
-
Dublin Core
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Title
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February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1016/j.cppeds.2023.101455" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.cppeds.2023.101455</a>
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Title
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Pediatric palliative care in Sweden
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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
2023
Subject
The topic of the resource
child; diagnosis; article; human; male; palliative therapy; adolescent; therapy; infant; decision making; Sweden; health care facility
Creator
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Castor C; Iveus K; Kreicbergs U
Description
An account of the resource
In Sweden, the governance of healthcare is decentralized, so PC is provided with regional or local differences in organization, level of competence, and recourses. Ongoing regional and national initiative to increase quality of pediatric palliative care in Sweden aligns with the international standard of pediatric palliative care as a care directed towards all children with life-threatening or life-limiting illness or conditions from the time of diagnosis. Examples of such initiatives and of different care-services providing pediatric palliative care will be presented. Finally a case to highlighting how a child's care needs might change throughout the illness trajectory and how various healthcare facilities and organizations when collaborating can support the child's participation in decision making is presented.
Identifier
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<a href="http://doi.org/10.1016/j.cppeds.2023.101455" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2023.101455</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).
2023
Adolescent
Article
Castor C
Child
Current Problems in Pediatric and Adolescent Health Care
Decision Making
Diagnosis
February List 2024
health care facility
Human
Infant
Iveus K
Kreicbergs U
Male
Palliative Therapy
Sweden
Therapy
-
Dublin Core
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Title
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February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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February List 2024
URL Address
<a href="http://doi.org/10.1186/s12904-023-01307-0" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01307-0</a>
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Title
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A shared decision-making model in pediatric palliative care: a qualitative study of healthcare providers
Publisher
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BMC Palliative Care
Date
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2023
Subject
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child; adult; article; controlled study; human; male; palliative therapy; knowledge; health care personnel; physician; qualitative research; social worker; phenomenology; decision making; semi structured interview; nurse; shared decision making; conceptual model; family centered care; pharmaceutics
Creator
An entity primarily responsible for making the resource
Cai S; Cheng L; Wang R; Zhou X; Peng X
Description
An account of the resource
Pediatric shared decision-making (SDM) is a fundamental part of family-centered care. Pediatric palliative care (PPC) is one of the more difficult fields for healthcare providers when choosing to utilize SDM. However, to our knowledge, there are still few structured approaches of SDM in PPC. We aimed to build a model of SDM in PPC that achieves better care and outcomes for children and their family members. Methods: This study is a descriptive phenomenology study. Participants included physicians, nurses, and social workers in the PPC team. Participants were individually interviewed face-to-face or via an online meeting software. Data were collected in semi-structured interviews and analyzed using a thematic framework analysis. Results: In total, 27 healthcare providers were interviewed. The model of SDM in PPC identified three themes, including the participants, the principle and the process of SDM. Decision participants involved the children, parents, the PPC team and others. The decision principle had three sub-themes including type, standard and precondition. The decision process describes the fundamental process of SDM and provides suggestions for mobilizing patients and parents to engage in decision-making and seeking conflict resolution. Conclusions: This is the first study to develop a SDM model in PPC. This model can provide guidance to PPC teams on SDM practices. In addition, the model contributes to the existing body of knowledge by providing a conceptual model for SDM in the context of PPC.
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01307-0" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01307-0</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).
2023
Adult
Article
BMC Palliative Care
Cai S
Cheng L
Child
conceptual model
Controlled Study
Decision Making
Family Centered Care
February List 2024
Health Care Personnel
Human
Knowledge
Male
Nurse
Palliative Therapy
Peng X
pharmaceutics
Phenomenology
Physician
Qualitative Research
Semi Structured Interview
shared decision making
Social Worker
Wang R
Zhou X
-
Dublin Core
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Title
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2023 Special Edition 5 - Low Resource Setting List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1080/24694193.2022.2085821" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/24694193.2022.2085821</a>
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Title
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The Cry to Be Involved: Experiences of Caregivers on Participation in Decision Making and Care Provision at Mercy James PICU in Blantyre, Malawi
Publisher
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Comprehensive Child and Adolescent Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Humans; Child; Female; Male; Decision Making; Intensive Care Units Pediatric; Qualitative Research; Hospitalization; Crying; Malawi; Caregivers
Creator
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Chasweka G; Majamanda MD; Namathanga A
Description
An account of the resource
A child's illness and admission in a hospital are stressful and can negatively affect the child and his/her caregivers. The stress is further exacerbated when a child is critically ill and has been admitted to an intensive care unit (ICU). The effects can be reduced when caregivers of the sick children are present and involved in decision making and actual care of their hospitalized children, a care model called family-centered care. Malawi has adopted family-centered care model in the newly instituted Mercy James Pediatric ICU. Little is known about experiences of caregivers with FCC in Malawi. This qualitative study was therefore conducted to explore experiences of caregivers on their involvement in decision making and care at Mercy James Pediatric ICU in Blantyre, Malawi. This was a descriptive qualitative study with a sample size of fifteen participants, however, data saturation was reached with ten participants. One on one in-depth interviews were conducted among a purposively selected sample of ten caregivers whose children had been discharged from the PICU. Content analysis was deductively and manually undertaken to analyze data with the aid of delve software to organize the data. Findings show that not every caregiver was involved in the decision making of their children's care, and if they did, it was not adequate. Barriers to effective involvement such as using a foreign language had a negative impact on comprehensive involvement of caregivers in decision making for their children's care. All participants were, however, involved in the physical care of their children. It is important that health care workers should continuously encourage caregivers to get involved in the decision making and care of their children.
Identifier
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<a href="http://doi.org/10.1080/24694193.2022.2085821" target="_blank" rel="noreferrer noopener">10.1080/24694193.2022.2085821</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).
2023
2023 SE5 - Low Resource Setting
Caregivers
Chasweka G
Child
Comprehensive Child and Adolescent Nursing
Crying
Decision Making
Female
Hospitalization
Humans
Intensive Care Units Pediatric
Majamanda MD
Malawi
Male
Namathanga A
Qualitative Research
-
Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1016/j.pedn.2022.12.004" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.pedn.2022.12.004</a>
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Title
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Experiences with the end-of-life decision-making process in children with cancer, their parents, and healthcare professionals: A systematic review and meta-ethnography
Publisher
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Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Humans; Child; Delivery of Health Care; Decision Making; Pediatric; Qualitative Research; Decision-making; Cancer; Anthropology Cultural; Only Child; Death; End-of-life; Neoplasms/therapy; Parents/psychology; Meta-ethnography
Creator
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Hirata M; Kobayashi K
Description
An account of the resource
BACKGROUND: Decision-making during the end-of-life (EOL) phase for children with cancer is extremely difficult for parents. We synthesized the qualitative experiences of children with cancer, parents, and healthcare professionals (HCPs), and their social interactions during the EOL decision-making process in the pediatric oncology setting. METHODS: Meta-ethnography was used to conduct a systematic review and meta-synthesis. We searched four online databases to identify original studies published in English and Japanese and examined 21 relevant studies. Two Japanese reviewers discussed the differences/relationships and included studies that synthesized the translated qualitative findings. A conceptual model of social interactions was created. RESULTS: We identified four themes regarding children's, parents', and HCPs' experiences: hope and confrontation with the child's death, guidance and support during uncertainty, awareness of being protected and having hope, and mutual unspoken integration of values. CONCLUSIONS: These themes evince the experiences of children, parents, and HCPs during the EOL decision-making process and suggests a complex three-way social interaction model. While considering such distinctive social interactions during a child's EOL, this study revealed the sharing of prudent information and psychosocial support by HCPs. The findings indicate that hope and uncertainty are key elements for effectively understanding the experiences of children and parents and that EOL decision-making should not be rushed but should be supported by leaving room for uncertainty and acknowledging parents' emotional needs and fostering new hope. Further research into how hope can be further supported in situations that are rife with uncertainty is needed.
Identifier
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<a href="http://doi.org/10.1016/j.pedn.2022.12.004" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.12.004</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE3 - Oncology
Anthropology Cultural
Cancer
Child
Death
Decision Making
Decision-making
Delivery of Health Care
end-of-life
Hirata M
Humans
Journal of Pediatric Nursing
Kobayashi K
meta-ethnography
Neoplasms/therapy
Only Child
Parents/psychology
Pediatric
Qualitative Research
-
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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2023 Special Edition 3 - Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1097/NCC.0000000000000783" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/NCC.0000000000000783</a>
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Title
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Treatment Decision Making and Regret in Parents of Children With Incurable Cancer
Publisher
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Cancer Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Child; child; Decision Making; article; controlled study; female; human; male; palliative therapy; education; Only Child; risk factor; prospective study; multicenter study; decision making; propensity score; incurable cancer; risk perception
Creator
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Ye ZJ; Cheng MH; Zhang XY; Tang Y; Liang J; Sun Z; Liang MZ; Yu YL
Identifier
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<a href="http://doi.org/10.1097/NCC.0000000000000783" target="_blank" rel="noreferrer noopener">10.1097/NCC.0000000000000783</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2023 SE3 - Oncology
Article
Cancer Nursing
Cheng MH
Child
Controlled Study
Decision Making
Education
Female
Human
incurable cancer
Liang J
Liang MZ
Male
Multicenter Study
Only Child
Palliative Therapy
Propensity Score
Prospective Study
risk factor
risk perception
Sun Z
Tang Y
Ye ZJ
Yu YL
Zhang XY
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Dublin Core
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Title
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October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1136/medhum-2022-012507" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/medhum-2022-012507</a>
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Metaphors and decision making in parental blogs about their children with life-limiting diseases: who's afraid of the war metaphor?
Publisher
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Med Humanit
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Child; Decision Making; child health; War; linguistics; Blogging; Metaphor; metaphor; Metaphor; patient narratives
Creator
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Neefjes V
Description
An account of the resource
The use of metaphors aids understanding by allowing us to think of complex problems in terms of relatively simple and more concrete information. As such, metaphors shape thought and guide future action. While metaphors are known to play a role in medical treatment decision-making, the effect of particular metaphors is unknown.This paper explores the metaphors West-European parents use for their child suffering from a life-limiting condition by analysing 15 blogs from Dutch, German and English and Welsh parents. The analysis found that all parents use war metaphors to describe their child and their disease. Describing their child in war metaphors, for example, 'fighter', 'hero' or 'trooper' allows parents to express their pride in their child. To describe the familial situation parents use both 'life as a fight' and a 'time as space' metaphor. Time is conceptualised as a space to be filled with positive experiences to allow the child to live as full a life as possible. In medical treatment decisions, parents balance 'fighting the disease' against their child's ability to live a good life. No evidence was found that the use of war metaphors increase a tendency to treat when benefit is unlikely. Instead, parents primarily use war metaphors as a conduit to express their love for their child and to empower them to manage the familial situation.
Identifier
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<a href="http://doi.org/10.1136/medhum-2022-012507" target="_blank" rel="noreferrer noopener">10.1136/medhum-2022-012507</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).
2023
Blogging
Child
Child Health
Decision Making
Humans
Linguistics
Med Humanit
Metaphor
Neefjes V
October List 2044
patient narratives
War
-
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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October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1111/nin.12594" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/nin.12594</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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Parental agency in pediatric palliative care
Publisher
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Nursing Inquiry
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Palliative Care; child; terminal care; article; female; human; male; caregiver; palliative therapy; pediatrics; human experiment; care behavior; decision making; social environment; relational autonomy; empiricism
Creator
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Szabat M
Identifier
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<a href="http://doi.org/10.1111/nin.12594" target="_blank" rel="noreferrer noopener">10.1111/nin.12594</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).
2023
Article
care behavior
Caregiver
Child
Decision Making
Empiricism
Female
Human
Human Experiment
Male
Nursing Inquiry
October List 2036
Palliative Care
Palliative Therapy
Pediatrics
relational autonomy
Social Environment
Szabat M
Terminal Care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1017/S1047951123001099" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1047951123001099</a>
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Support for families of a child in a palliative situation in the cardiac pediatric intensive care unit
Publisher
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Cardiology in the Young
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; female; human; male; Intensive Care Units; patient care; palliative therapy; intensive care; pediatric intensive care unit; nursing; terminal care; Medline; systematic review; Cinahl; satisfaction; rare disease; conference abstract; decision making; memory; holistic care; heart
Creator
An entity primarily responsible for making the resource
Wieden N; Eissler AB; Kroger Y
Description
An account of the resource
Background and Aim: The birth prevalence of children with congenital heart disease is about one percent a year. This might mean that a palliative diagnosis maybe directly exists from birth due to the complexity of the congenital heart disease. The required intensive care stay that may follow after birth presents a challenge for parents. To care for the family, the concept of family-centered care is presented and the involvement of the pediatric palliative care team is considered. The aim was to identify nursing measures which support families of a child in a palliative situation in the cardiac pediatric intensive care unit. Method(s): This literature search was conducted between January 1, 2022 and May 31, 2022 in Medline via PubMed, CINAHL and Cochrane research databases and was based on defined inclusion and exclusion criteria. Studies from the PICU and NICU as well as studies focusing on end-of-life care were considered, as it can be assumed that the results may be transferable. Studies with an exclusive oncological focus or specific rare diseases were excluded. Result(s): Seven main categories could be identified to support the parents. The communication, the parental participation in the decision-making process, continuity of care and relationship building. Also the griefing process and memory making takes place. At least challenges in the intensive care unit and satisfaction with care and unmet needs are highlighted. Conclusion(s): The included studies suggest important features of communication and can be partially transferred to the implementation of nursing measures with the help of family-centered care. The necessity of the need to involve parents in the care of the child can be demonstrated in the majority of the studies. Therefore, appropriate communication and parental participation in the whole process should be considered as the focus of care. For holistic care, the involvement of the palliative pediatric care team should be evaluated early. Due to the limitations of the studies and the low level of evidence, the results must be viewed with caution. Further research is needed to comprehensively map the specific area of the cardiac pediatric intensive care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S1047951123001099" target="_blank" rel="noreferrer noopener">10.1017/S1047951123001099</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Cardiology In The Young
Child
Cinahl
conference abstract
Decision Making
Eissler AB
Female
Heart
Holistic Care
Human
Intensive Care
Intensive Care Units
Kroger Y
Male
Medline
Memory
Nursing
October List 2034
Palliative Therapy
Patient Care
Pediatric Intensive Care Unit
Rare Disease
Satisfaction
Systematic Review
Terminal Care
Wieden 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
A name given to the resource
October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.50</a>
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Title
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Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Palliative Care; child; controlled study; female; human; male; retrospective study; quality of life; palliative therapy; hospice; practice guideline; follow up; outcome assessment; artificial ventilation; clinical article; patient referral; education; consultation; pediatric intensive care unit; awareness; diagnosis; life sustaining treatment; hospital discharge; adolescent; surgery; infant; demographics; conference abstract; e-mail; decision making; trust; length of stay; nurse; writing; community care; heart graft; nursing staff; clinical nurse specialist; apparent life threatening event; organizational restructuring; oxygenation
Creator
An entity primarily responsible for making the resource
Subhash S; Freitas D; Aidoo E; Nkulu G; Chan-Dominy A
Description
An account of the resource
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus wishes of the child and family on preferred place of care.2 3 We evaluated the temporal effect on PC referrals at a quarternary cardiorespiratory paediatric intensive care unit (PICU) following organisational restructuring to integrate people-centred changes amidst complex diagnoses and advanced life-sustaining treatments. Methods Retrospective review of PC referral database between January and December 2022 was conducted, analysed on referral pathway, reviewed with decision-making process, patient demographics and outcome. Results The nurse-led service with ad hoc informal visits to offer PC support following requests from medical team was reorganised since service-level agreement for paediatric PC consultant attendance at our weekly complex care multidisciplinary meetings. Departmental education sessions and trust governance events were platforms to promote staff awareness on service and enhance referral pathway. PC referrals were made for 23 children(M:F 1.3:1), median age 13.8 months (range 10days -16.8years), under categories of life-limiting diagnoses (n=12, 52%) or acute life-threatening events (n=11, 48%), including resuscitative extracorporealmembrane-oxygenation.(Graph 1) Median time from admission to PC referral was 59 days (range 6-162) prior to standardised referral proforma in May2022, this reduced to 36 days (range -35 to 68) and 6 days (range 3-30) per 4-month period. One referral was made 5 weeks prior to an international repatriation for child with life-limiting diagnosis on long-term ventilation. Completed referral forms sent to a designated email address were passed onto PC consultants and clinical nurse specialist. Dedicated weekly PC days provided introductory 'meet-andgreet', follow-up 'check-in' or semi-structured meeting with PC team members for patients, families and staff. PC-led multidisciplinary meetings (including 2 online) were followed by real-time correspondence to medical and nursing staff with feedback, recommendations and action plan. 4 advanced care plans and 3 symptom management plans were completed; 9 hospice and 5 community care nursing team referrals were made whilst 2 families declined hospice. Median hospital length of stay was 69 days (range 6-390). 5 children survived to hospital discharge (3 died at home), and 8 are still in hospital (1 as heart transplant recipient). Conclusion Integrative culture during reorganisation can positively influence paediatric PC referrals. Event-triggered and diagnosis-based cues may help foster PC participation as continuing strategy to respond with support during disease, treatment and psychosocial burden for children and families.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.50</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).
2023
Adolescent
Aidoo E
apparent life threatening event
Archives of Disease in Childhood
Artificial Ventilation
Awareness
Chan-Dominy A
Child
Clinical Article
Clinical Nurse Specialist
community care
conference abstract
Consultation
Controlled Study
Decision Making
Demographics
Diagnosis
E-mail
Education
Female
Follow Up
Freitas D
heart graft
Hospice
hospital discharge
Human
Infant
Length Of Stay
Life Sustaining Treatment
Male
Nkulu G
Nurse
Nursing Staff
October List 2031
organizational restructuring
outcome assessment
Oxygenation
Palliative Care
Palliative Therapy
Patient Referral
Pediatric Intensive Care Unit
Practice Guideline
Quality Of Life
Retrospective Study
Subhash S
Surgery
Trust
writing
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1186/s12904-023-01194-5" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01194-5</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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Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Palliative Care; adult; article; controlled study; female; human; male; palliative therapy; pediatrics; clinical article; qualitative research; skill; health care system; thematic analysis; decision making; multidisciplinary team; semi structured interview; organization; patient care team
Creator
An entity primarily responsible for making the resource
Rico-Mena P; Gueita-Rodriguez J; Martino-Alba R; Chocarro-Gonzalez L; Sanz-Esteban I; Palacios-Cena D
Description
An account of the resource
Purpose: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents. Methods: A qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital. The study participants included a specialized pediatric palliative care team from Madrid's pediatric palliative care program, other professional teams involved in interdisciplinary care and parents of children under pediatric palliative care. Data were collected via semi-structured interviews, focus groups and researchers' field notes. A thematic analysis was performed. Results: This study included 28 participants (20 women, 8 men), of whom 18 were professionals who belonged to the pediatric palliative care interdisciplinary team, 4 professionals were from other units that collaborated with the pediatric palliative care, and 6 were parents (5 women, 1 man). The mean age of the pediatric palliative care members was 38.2 years (SD ± 7.9), that of the collaborating professionals was 40.5 (SD ± 6.8), and that of the parents was 44.2 (SD ± 5.4). Two main themes emerged: a) Pediatric palliative care has a distinct identity, associated with life. It represents the provision of special care in highly complex children, in the context of the home, far from the hospital environment; b) The team is key: its interdisciplinary organization provides a more comprehensive view of the child and their family, fosters communication among professionals, and improves coordination with other services involved in the care of children. The mindset shift experienced by ID-PPC professionals towards a palliative approach makes them more sensitive to the needs of their patients and leads them to develop specific skills in areas such as communication, decision-making, and adaptability that were identified as differentiating aspects of pediatric palliative care. Conclusions: Describing pediatric palliative care from the professional and parental perspective helps to establish realistic and comprehensive goals for the care of children and their parents. The findings of this study may help with the establishment of a pediatric palliative care team, as a necessary organizational change in a health care system that cares for children with complex and life-threatening conditions. Promoting training in pediatric palliative care, prioritizing more horizontal organizations, providing tools and spaces for coordination and communication between professionals from different services, together with the creation of a position of case coordinator in the care process of children could enhance the understanding of pediatric palliative care services.
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01194-5" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01194-5</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).
2023
Adult
Article
August List 2046
BMC Palliative Care
Child
Chocarro-González L
Clinical Article
Controlled Study
Decision Making
Female
Gueita-Rodriguez J
Health Care System
Human
Male
Martino-Alba R
Multidisciplinary team
Organization
Palacios-Cena D
Palliative Care
Palliative Therapy
Patient Care Team
Pediatrics
Qualitative Research
Rico-Mena P
Sanz-Esteban I
Semi Structured Interview
Skill
Thematic Analysis
-
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Title
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August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1007/s00431-023-05030-z" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00431-023-05030-z</a>
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Title
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Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data
Publisher
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European Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; Cohort Studies; Belgium; Terminal Care; terminal care; article; female; human; major clinical study; male; palliative therapy; pediatrics; cohort analysis; physician; nuclear magnetic resonance imaging; health care system; general practitioner; decision making; bereavement; computer assisted tomography; congenital disorder; drawing; administrative health data; genetic association; genetic disorder; empirical research; paramedical personnel; X ray
Creator
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Piette V; Deliens L; Debulpaep S; Cohen J; Beernaert K
Description
An account of the resource
Abstract This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing children (1-17) who died with genetic and congenital conditions in Belgium between 2010 and 2017. We measured 22 quality indicators, face-validated using a previously published RAND/UCLA methodology. Appropriateness of care was defined as the overall "expected health benefit" of given healthcare interventions within a healthcare system exceeding expected negative outcomes. In the 8-year study period, 200 children were identified to have died with genetic and congenital conditions. Concerning appropriateness of care, in the last month before death, 79% of children had contact with specialist physicians, 17% had contact with a family physician, and 5% received multidisciplinary care. Palliative care was used by 17% of the children. Concerning inappropriateness of care, 51% of the children received blood drawings in the last week before death, and 29% received diagnostics and monitoring (2 or more magnetic resonance imaging scans, computed tomography scans, or X-rays) in the last month. Conclusion: Findings suggest end-of-life care could be improved in terms of palliative care, contact with a family physician and paramedics, and diagnostics and monitoring in the form of imaging. What is Known: • Previous studies suggest that end-of life care for children with genetic and congenital conditions may be subject to issues with bereavement, psychological concerns for child and family, financial cost at the end of life, decision-making when using technological interventions, availability and coordination of services, and palliative care provision. Bereaved parents of children with genetic and congenital conditions have previously evaluated end-of-life care as poor or fair, and some have reported that their children suffered a lot to a great deal at the end of life. • However, no peer-reviewed population-level quality evaluation of end-of-life care for this population is currently present. What is New: • This study provides an evaluation of the appropriateness of end-of-life care for children who died in Belgium with genetic and congenital conditions between 2010 and 2017, using administrative healthcare data and validated quality indicators. The concept of appropriateness is denoted as relative and indicative within the study, not as a definitive judgement. • Our study suggests improvements in end-of-life care may be possible, for instance, in terms of the provision of palliative care, contact with care providers next to the specialist physician, and diagnostics and monitoring in terms of imaging (e.g., magnetic resonance imaging, computed tomography scans). Further empirical research is necessary, for instance, into unforeseen and foreseen end-of-life trajectories, to make definitive conclusions about appropriateness of care.
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<a href="http://doi.org/10.1007/s00431-023-05030-z" target="_blank" rel="noreferrer noopener">10.1007/s00431-023-05030-z</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).
2023
administrative health data
Article
August List 2043
Beernaert K
Belgium
Bereavement
Child
Cohen J
Cohort Analysis
Cohort Studies
computer assisted tomography
congenital disorder
Debulpaep S
Decision Making
Deliens L
Drawing
Empirical Research
European Journal of Pediatrics
Female
General Practitioner
genetic association
Genetic Disorder
Health Care System
Human
Major Clinical Study
Male
nuclear magnetic resonance imaging
Palliative Therapy
paramedical personnel
Pediatrics
Physician
Piette V
Terminal Care
X ray
-
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1089/jpm.2022.0520" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2022.0520</a>
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Title
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Parental Ethical Decision Making and Implications for Advance Care Planning: A Systematic Review and Secondary Analysis of Qualitative Literature from England and Wales, Germany, and the Netherlands
Publisher
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Journal of Palliative Medicine
Date
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2023
Subject
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child; Decision Making; Germany; female; human; male; Netherlands; systematic review; review; advance care planning; Wales; ethics; care behavior; decision making; thematic analysis; qualitative research; theoretical study; Advance Care Planning; ethical decision making; England; law suit; secondary analysis; Wales; Netherlands; Germany
Creator
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Neefjes V
Description
An account of the resource
Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make ethical decisions is an under-researched area. A possible model for parental decision making is the Ethics of Care (EoC) theory. Ethical decision making within this framework aims to preserve the caring relationship. What is right or wrong depends on the circumstances at the time. <br/>Objective(s): To identify the parental ethical values and determine whether parental decision making is consistent with EoC, a systematic review and secondary analysis of qualitative research from England and Wales, the Netherlands, and Germany was performed. As part of a larger project investigating conflicts between parents and clinicians about children's medical treatment, the choice of countries was determined by differences in litigation. <br/>Method(s): Eight databases were searched for articles published between 2010 and 2020 reporting on at least one medical treatment decision made by parents of a child with any life-limiting condition and analyzed using reflexive thematic analysis. Twelve included articles directly addressing advance care planning (ACP) were reanalyzed to investigate whether this specific decision parents are increasingly being asked to make is also consistent with EoC. <br/>Result(s): Forty-three articles were included. Parents use the same 6 ethical values which, consistent with EoC, are mostly in the context of their relationship with the child. All values contributed to the previously identified theme of "being a good parent/person." Analysis of parental decision making in ACP confirmed consistency with EoC. <br/>Conclusion(s): The parental decision-making process is consistent with EoC. That parental decisions aim to maintain the caring relationship and are dependent on the circumstances at the time has implications for parental decision making in ACP and should be reflected in future policies.
Identifier
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<a href="http://doi.org/10.1089/jpm.2022.0520" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0520</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).
2023
Advance Care Planning
August List 2040
care behavior
Child
Decision Making
England
Ethical Decision Making
Ethics
Female
Germany
Human
Journal of Palliative Medicine
law suit
Male
Neefjes V
Netherlands
Qualitative Research
Review
Secondary Analysis
Systematic Review
Thematic Analysis
theoretical study
Wales
-
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Title
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August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.5546/aap.2022-02872.eng" target="_blank" rel="noreferrer noopener"> http://doi.org/10.5546/aap.2022-02872.eng</a>
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Title
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Decisions concerning resuscitation and end-of-life care in neonates. Bioethical aspects (Part II)
Publisher
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Archivos Argentinos de Pediatria
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Infant, Newborn; Infant; Decision Making; Terminal Care; Withholding Treatment; Medical Futility; Bioethics; Terminal Care; Death; Resuscitation
Creator
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Mariani G; Arimany M
Description
An account of the resource
Coping with the death of a newborn infant requires training and reflection regarding the end-of-life decision-making process, communication with the family, and the care to be provided. The objective of this article is to analyze in depth the salient aspects of neonatal bioethics applied to end-of-life situations in newborn infants. Part I describes notions of therapeutic futility, redirection of care criteria, patient and family rights, and concepts about the value of life. Part II analyzes situations that deserve considering the redirection of care and delves into aspects of communication and the complex process of end-of-life decision-making in newborn infants.
Identifier
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<a href="http://doi.org/10.5546/aap.2022-02872.eng" target="_blank" rel="noreferrer noopener">10.5546/aap.2022-02872.eng</a>
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2023
Archivos Argentinos De Pediatria
Arimany M
August List 2039
Bioethics
Death
Decision Making
Humans
Infant
Infant, Newborn
Mariani G
Medical Futility
Resuscitation
Terminal Care
Withholding Treatment
-
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Title
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August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1177/13674935211059041" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935211059041</a>
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Title
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Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Humans; Infant; Decision Making; Communication; Qualitative Research; Uncertainty; Emotions; Parents; Parents/px [Psychology]; Decision Making
Creator
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Koch A; Albrecht T; Kozhumam AS; Son H; Brandon D; Docherty SL
Description
An account of the resource
Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitative descriptive study explores how parent and provider hope may influence decision making and care of a child born with CLTCs. A total of 193 interviews from 46 individuals (parents, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease (CCHD) were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making. Overall, parental hope remained strong and played a pivotal role in parental decision making. Parents and professional healthcare providers expressed a range of emotions that appeared to be integrally linked to hope and affected decision making. Providers and parents brought their own judgments, perceptions, and measure of hope to relationships, when there was common ground for expressing, and having, hope, shared decision making was more productive and they developed more effective relationships and communication. Relationships between parents and providers were particularly influenced by and contributory to hope. Communication between parents and providers was also responsible for and responsive to hope.
Identifier
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<a href="http://doi.org/10.1177/13674935211059041" target="_blank" rel="noreferrer noopener">10.1177/13674935211059041</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).
2023
Albrecht T
August List 2036
Brandon D
Communication
Decision Making
Docherty SL
Emotions
Humans
Infant
Journal Of Child Health Care
Koch A
Kozhumam AS
Parents
Parents/px [psychology]
Qualitative Research
Son H
Uncertainty
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.3389/fped.2023.1205543" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fped.2023.1205543</a>
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Title
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Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope
Publisher
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Frontiers in Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Palliative Care; diagnosis; human; patient care; palliative therapy; neurology; grief; Referral and Consultation; review; consultation; fetus; shared decision making; infant; decision making; medical care; uncertainty; prenatal period; vignette; social belief; brain; counseling; encephalocele; pregnancy; prognosis
Creator
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Cortezzo DE; Vawter-Lee M; Shoaib A; Venkatesan C
Description
An account of the resource
Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological diagnoses due to limitations of fetal imaging, prognostic uncertainty, and variability in neurodevelopmental outcomes. In the midst of uncertainty, families are challenged with preparing a care plan for their baby while simultaneously experiencing profound grief. The paradigms of perinatal palliative care can assist with the grieving process and help frame diagnostic testing and complex decision-making within the context of a family's spiritual, cultural, and social belief system. This ultimately leads to a shared decision-making process and value driven medical care. While perinatal palliative care programs have expanded, many families faced with such diagnoses never meet with a palliative care team prior to delivery. Moreover, there is significant variability in the availability of palliative care services throughout the country. Using an illustrative vignette of a patient with a prenatally diagnosed encephalocele, this review aims to provide a basic framework of perinatal palliative care for fetal neurology diagnoses that emphasizes 1) importance of clear, consistent, and transparent communication among all subspecialists and families, 2) creation of a palliative care birth plan, 3) importance of consistent care providers and longitudinal points of contact prenatally and post-delivery, 4) close communication between the prenatal and post-natal providers to allow for optimal continuity of care, and 5) recognize that information, care plans, and goals of care often evolve over time.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3389/fped.2023.1205543" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1205543</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).
2023
August List 2029
Brain
Consultation
Cortezzo DE
Counseling
Decision Making
Diagnosis
encephalocele
Fetus
Frontiers in Pediatrics
Grief
Human
Infant
Medical Care
Neurology
Palliative Care
Palliative Therapy
Patient Care
Pregnancy
prenatal period
Prognosis
Referral And Consultation
Review
shared decision making
Shoaib A
social belief
Uncertainty
Vawter-Lee M
Venkatesan C
vignette
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1016/j.pecinn.2023.100173" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.pecinn.2023.100173</a>
Dublin Core
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Title
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Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation
Publisher
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PEC Innovation
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; article; cohort analysis; female; human; male; quality of life; palliative therapy; Ventilators, Mechanical; tracheostomy; content analysis; pilot study; respiratory failure; adolescent; decision making; intensive care unit; semi structured interview; pediatric patient; length of stay; counseling; artificial ventilation; home ventilation; Question Prompt List
Creator
An entity primarily responsible for making the resource
Boss RD; Vo HH; Jabre NA; Shepard J; Mercer A; McDermott A; Lanier CL; Ding Y; Wilfond BS; Henderson CM
Description
An account of the resource
Objective: To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation. Methods: Parents and clinicians of children facing home ventilation decisions were enrolled at 3 centers using a pre/post cohort design. Family interventions included: 1) a website describing the experiences of families who previously chose for and against home ventilation 2) a Question Prompt List (QPL); 3) in-depth interviews exploring home life and values. Clinician HomeVENT intervention included a structured team meeting reviewing treatment options in light of the family's home life and values. All participants were interviewed one month after the decision. Results: We enrolled 30 families and 34 clinicians. Most Usual Care (14/15) but fewer Intervention (10/15) families elected for home ventilation. Families reported the website helped them consider different treatment options, the QPL promoted discussion within the family and with the team, and the interview helped them realize how home ventilation might change their daily life. Clinicians reported the team meeting helped clarify prognosis and prioritize treatment options. Conclusions: The HomeVENT pilot was feasible and acceptable. Innovation: This systematic approach to pediatric home ventilation decisions prioritizes family values and is a novel method to increase the rigor of shared decision-making in a rushed clinical environment.
Identifier
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<a href="http://doi.org/10.1016/j.pecinn.2023.100173" target="_blank" rel="noreferrer noopener">10.1016/j.pecinn.2023.100173</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).
2023
Adolescent
Article
Artificial Ventilation
August List 2025
Boss RD
Child
Cohort Analysis
Content Analysis
Counseling
Decision Making
Ding Y
Female
Henderson CM
home ventilation
Human
Intensive Care Unit
Jabre NA
Lanier CL
Length Of Stay
Male
McDermott A
Mercer A
Palliative Therapy
PEC Innovation
pediatric patient
Pilot Study
Quality Of Life
Question Prompt List
respiratory failure
Semi Structured Interview
Shepard J
Tracheostomy
Ventilators, Mechanical
Vo HH
Wilfond BS
-
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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June 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="https://www.liebertpub.com/doi/10.1089/jpm.2022.0559">https://www.liebertpub.com/doi/10.1089/jpm.2022.0559</a>
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Title
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Epidermolysis Bullosa in Pediatric Palliative Care: A Case Series
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
2023
Subject
The topic of the resource
Palliative Care; epidermolysis bullosa; pediatric palliative care; decision making; dermatology; Eb
Creator
An entity primarily responsible for making the resource
Ball K; Camilleri S; Kiefel S; Schulz I; Weston L; Sacks B
Description
An account of the resource
Background: Epidermolysis bullosa (EB) comprises a group of rare genetic conditions that are characterized by fragility of the skin and mucous membranes and formation of blisters with minor trauma. Severe forms can be life limiting. The palliative care needs of children with severe EB are poorly described. Aim: The aim of this case series was to examine the contribution of a pediatric palliative care service to the complex health care needs of children with severe EB. Methods: We present a case series of five children with severe forms of EB who were known to the state-wide Victorian Paediatric Palliative Care Service, with a discussion of our learnings in caring for these children and their families. Results: Medical treatment decision making in EB provokes complex ethical, psychological, personal, and professional dilemmas. This case series highlights the diversity of management approaches that may be considered, each tailored to the unique context of the child and family.
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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).
Identifier
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<a href="https://www.liebertpub.com/doi/10.1089/jpm.2022.0559">10.1089/jpm.2022.0559</a>
2023
Ball K
Camilleri S
Decision Making
Dermatology
eb
epidermolysis bullosa
Journal of Palliative Medicine
June 2022 List
Kiefel S
Palliative Care
Pediatric Palliative Care
Sacks B
Schulz I
Weston L
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
June 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="https://www.sciencedirect.com/science/article/pii/S1744165X23000136?via%3Dihub">https://www.sciencedirect.com/science/article/pii/S1744165X23000136?via%3Dihub</a>
Dublin Core
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Title
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Spiritual and cultural influences on end-of-life care and decision-making in NICU
Publisher
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Seminars in Fetal and Neonatal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Terminal Care; Decision Making; End-of-life; Rituals; Neonates; Cultures; Religions; Spiritual; Traditions
Creator
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Ng PC; Fung GPG
Description
An account of the resource
Understanding and respecting the spiritual beliefs, ethnic roots, cultural norms and customs of individual families is essential for neonatologists to provide clinically appropriate and humane end-of-life care. This review describes the religious/philosophical principles, cultural-related practices/rituals, and traditions in end-of-life care in major spiritual groups of today's multi-cultural, multi-faith societies. The spiritual groups include Christians, Muslims, Jewish Judaism believers and Asian religious/philosophy followers such as Buddhists, Hindus, Taoists, Confucianism devotees and ancestral worshippers. It is vital to understand that substantial variation in views and practices may exist even within the same religion and culture in different geographic locations. Ethical views and cultural practices are not static elements in life but behave in a fluidic and dynamic manner that could change with time. Interestingly, an evolving pattern has been observed in some Asian and Middle East countries that more parents and/or religious groups are beginning to accept a form of redirection of care most compatible with their spiritual belief and culture. Thus, every family must be assessed and counseled individually for end-of-life decision-making. Also, every effort should be made to comply with parents' requests and to treat infants/parents of different religions and cultures with utmost dignity so that they have no regret for their irreversible decisions.
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<a href="https://www.sciencedirect.com/science/article/pii/S1744165X23000136?via%3Dihub">10.1016/j.siny.2023.101437</a>
2023
Cultures
Decision Making
end-of-life
Fung GPG
June 2022 List
Neonates
Ng PC
Religions
Rituals
Seminars in Fetal and Neonatal Medicine
spiritual
Terminal Care
Traditions
-
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July 2023 List
Text
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July List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2022-324963" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2022-324963</a>
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Title
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Navigating two 'truths': a qualitative study of physician-led end-of-life decision-making for children with life-limiting conditions
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Archives of Disease in Childhood
Date
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2023
Subject
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Child; Decision Making; ethics; intensive care units paediatric; Only Child; paediatrics; palliative care; qualitative research
Creator
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Vemuri S; Hynson J; Williams K; Gillam L
Description
An account of the resource
OBJECTIVE: To describe how paediatricians undertake the process of end-of-life decision-making for a child with a life-limiting condition who is unable to participate in decision-making for themselves. DESIGN: A qualitative phenomenological study using semistructured interviews based around a clinical vignette matched to the clinical practice of individual paediatricians. Verbatim transcripts underwent thematic analysis. SETTING: Paediatricians practising in Victoria (Australia) between mid-2019 and mid-2020. PARTICIPANTS: Twenty-five purposively sampled paediatricians caring for children with specific life-limiting conditions: children with severe neurodisability, oncological or haematological malignancies or complex cardiac disease in an inpatient intensive care or outpatient clinic setting. RESULTS: A process of physician-led end-of-life decision-making was described. Paediatricians first contemplate that the child's death is approaching, then prepare themselves by ensuring there are no reversible factors at play. They then inform parents of this view and, if needed, hold discordant views between parents and themselves about the child's death in a 'fruitful tension'. Ultimately, they seek to bring parents' views of their child in line with theirs to facilitate goal alignment. CONCLUSIONS: Paediatricians feel responsible for facilitating the alignment of parental understanding of the child's health status with their own. This is achieved either through direction or by holding differences between parental and medical truths about the child's health in tension to provide time, space, and clarity. This alignment was seen as key to enabling end-of-life treatment decisions, without which conflict in end-of-life decision-making can arise or persist.
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<a href="http://doi.org/10.1136/archdischild-2022-324963" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2022-324963</a>
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2023
Archives of Disease in Childhood
Child
Decision Making
Ethics
Gillam L
Hynson J
intensive care units paediatric
July List 2023
Only Child
Paediatrics
Palliative Care
Qualitative Research
Vemuri S
Williams K
-
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July 2023 List
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July List 2023
URL Address
<a href="http://doi.org/10.1111/jpc.16357" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jpc.16357</a>
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Siblings and End-Of-Life Decision Making in the NICU
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Journal of Paediatrics and Child Health
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2023
Subject
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decision making; sibling; care behavior; child; clinical article; conference abstract; content analysis; critically ill patient; Decision Making; electronic medical record; female; human; infant; male; neonatal intensive care unit; perception; semi structured interview; wellbeing
Creator
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Power J; Gillam L; Prentice TM
Description
An account of the resource
Background: When making end-of-life decisions for a child in the neonatal intensive care unit (NICU), standard practice is to involve parents in shared decision-making so that the values of parents are considered and decisions are made in the interests of the child. In this decision-making process, it is not known whether parents are influenced by the needs of their other children. Method(s): A qualitative two-phase exploratory methodology was chosen to understand how considerations for other children in the family influence parents' decisions. The electronic medical records of children ( n = 20) previously admitted to the Royal Children's Hospital's NICU were analysed for relevant mentions of siblings. Then, families ( n = 3) participated in semi-structured interviews to understand considerations of siblings. Statements and interviews were analysed using inductive content analysis. Result(s): Parents articulate the considerate juggling act of balancing the day-to-day needs of multiple children during the NICU journey. With the wellbeing of siblings in mind, parents made a range of decisions with different degrees of medical impact in the NICU. For end-of-life decisions, parents differed in their perspectives about whether considerations of siblings should be taken into account. Moreover, clinicians were aware of the challenges of caring for multiple children and supported parents with these challenges. Conclusion(s): It is clinically and ethically significant that sibling considerations impact end-of-life decision-making. We suggest clinicians reflect on their own perception of how much siblings should be allowed to influence end-of-life decisions to protect critically ill babies from harm. More research is needed to better understand these influences.
Identifier
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<a href="http://doi.org/10.1111/jpc.16357" target="_blank" rel="noreferrer noopener">10.1111/jpc.16357</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).
2023
care behavior
Child
Clinical Article
conference abstract
Content Analysis
Critically Ill Patient
Decision Making
electronic medical record
Female
Gillam L
Human
Infant
Journal of Paediatrics and Child Health
July List 2023
Male
Neonatal Intensive Care Unit
Perception
Power J
Prentice TM
Semi Structured Interview
Sibling
Wellbeing
-
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July 2023 List
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July List 2023
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<a href="http://doi.org/10.1016/j.siny.2023.101438" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.siny.2023.101438</a>
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Title
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Ethics at the end of life in the newborn intensive care unit: Conversations and decisions
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Seminars in Fetal and Neonatal Medicine
Date
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2023
Subject
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bioethics; conversation; decision making; ethics; neonatal intensive care unit; treatment withdrawal; active euthanasia; artificial ventilation; controlled study; critically ill patient; human; hydration; hypoxic ischemic encephalopathy; infant; Infant Newborn; Intensive Care Units; Intensive Care Units Neonatal; neonatologist; newborn; nutrition; resuscitation; review
Creator
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Mercurio MR; Gillam L
Description
An account of the resource
The unexpected birth of a critically ill baby raises many ethical questions for neonatologists. Some of these are obviously ethical questions, about whether to attempt resuscitation, and, if the baby is resuscitated and survives, whether to continue life sustaining interventions. Other ethical decisions are more related to what to say rather than what to do. Although less obvious, they are equally as important, and may also have far-reaching ramifications. This essay presents the story of a newborn with profound hypoxic-ischemic encephalopathy, and reviews decisions regarding resuscitation, withdrawal of mechanical ventilation, withdrawal of medically administered nutrition and hydration, and active euthanasia. An overview of the ethical issues at work at each decision point is presented, as well as guidance regarding discussions with parents throughout the process, including specific wording. This may serve as a helpful guide for ethical deliberation, and helpful scripting for parental discussion, in similar cases.Copyright © 2023 Elsevier Ltd
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<a href="http://doi.org/10.1016/j.siny.2023.101438" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2023.101438</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).
2023
active euthanasia
Artificial Ventilation
Bioethics
Controlled Study
Conversation
Critically Ill Patient
Decision Making
Ethics
Gillam L
Human
Hydration
hypoxic ischemic encephalopathy
Infant
Infant Newborn
Intensive Care Units
Intensive Care Units Neonatal
July List 2023
Mercurio MR
Neonatal Intensive Care Unit
Neonatologist
Newborn
Nutrition
Resuscitation
Review
Seminars in Fetal and Neonatal Medicine
Treatment Withdrawal
-
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Title
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July 2023 List
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July List 2023
URL Address
<a href="http://doi.org/10.1055/s-0043-1768488" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1055/s-0043-1768488</a>
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Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit
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American Journal of Perinatology
Date
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2023
Subject
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advance care planning; neonatal intensive care unit; Advance Care Planning; article; child; decision making; expectation; human; infant; Infant Newborn; outcome assessment; rank sum test; satisfaction; shared decision making
Creator
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Lin M; Williams D; Vitcov G; Sayeed S; DeCourcey DD; Wolfe J; Cummings C
Description
An account of the resource
OBJECTIVE: This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU). STUDY DESIGN: Single-center, cross-sectional mixed-methods survey study of bereaved parents who experienced the death of a child in the Boston Children's Hospital NICU between 2010 and 2021. Logistic regression, chi-square test, Fisher's exact test, and Wilcoxon rank-sum test were used to evaluate the relationship between ACP and parent-reported EOL outcomes. Qualitative content was analyzed through inductive coding. RESULT(S): A total of 40/146 (27%) of eligible parents responded to our survey. There was a significant association between ACP and improved EOL care processes and parental satisfaction with communication. Parents with ACP were more likely to report goal-concordant care and higher levels of perceived shared decision-making. Qualitatively, emerging themes in parents' descriptions of goal-concordant care included misaligned expectations and communication. Emerging themes for parental preparedness included infant symptoms, logistical aspects, impact on parents, and degrees of preparedness. For decisional regret, the primary theme was reevaluating supports. CONCLUSION(S): ACP is associated with improved EOL care outcomes and parents qualitatively conceptualize goal-concordant care, preparedness for their child's death, and decisional regret in nuanced ways. Families should have the opportunity to participate in ACP discussions that meet their unique communication and decision-making needs. KEY POINTS: . ACP is associated with improved parent-reported end-of-life outcomes.. . Parents conceptualize end-of-life care outcomes in nuanced ways.. . Families should have the opportunity to participate in ACP discussions that meet their unique needs..Copyright Thieme. All rights reserved.
Identifier
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<a href="http://doi.org/10.1055/s-0043-1768488" target="_blank" rel="noreferrer noopener">10.1055/s-0043-1768488</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).
2023
Advance Care Planning
American Journal of Perinatology
Article
Child
Cummings C
Decision Making
DeCourcey DD
Expectation
Human
Infant
Infant Newborn
July List 2023
Lin M
Neonatal Intensive Care Unit
outcome assessment
rank sum test
Satisfaction
Sayeed S
shared decision making
Vitcov G
Williams D
Wolfe J
-
Dublin Core
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Title
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July 2023 List
Text
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Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.1186/s12904-023-01170-z" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01170-z</a>
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Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns
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BMC Palliative Care
Date
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2023
Subject
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Critical Illness; Decision Making; Child; Communication; Critical Illness; Critical Illness/th [Therapy]; Death; Decision Making; Delivery of Health Care; Female; Humans; Infant Newborn; Parents; Pregnancy; Probability; Qualitative Research; Uncertainty
Creator
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Limacher R; Fauchere JC; Gubler D; Hendriks MJ
Description
An account of the resource
BACKGROUND: A significant number of critically ill neonates face potentially adverse prognoses and outcomes, with some of them fulfilling the criteria for perinatal palliative care. When counselling parents about the critical health condition of their child, neonatal healthcare professionals require extensive skills and competencies in palliative care and communication. Thus, this study aimed to investigate the communication patterns and contents between neonatal healthcare professionals and parents of neonates with life-limiting or life-threatening conditions regarding options such as life-sustaining treatment and palliative care in the decision-making process., METHODS: A qualitative approach to analysing audio-recorded conversations between neonatal team and parents. Eight critically ill neonates and a total of 16 conversations from two Swiss level III neonatal intensive care units were included., RESULTS: Three main themes were identified: the weight of uncertainty in diagnosis and prognosis, the decision-making process, and palliative care. Uncertainty was observed to impede the discussion about all options of care, including palliative care. Regarding decision-making, neonatologists oftentimes conveyed to parents that this was a shared endeavour. However, parental preferences were not ascertained in the conversations analysed. In most cases, healthcare professionals were leading the discussion and parents expressed their opinion reactively to the information or options received. Only few couples proactively participated in decision-making. The continuation of therapy was often the preferred course of action of the healthcare team and the option of palliative care was not mentioned. However, once the option for palliative care was raised, the parents' wishes and needs regarding the end-of-life care of their child were obtained, respected, and implemented by the team., CONCLUSION: Although shared decision-making was a familiar concept in Swiss neonatal intensive care units, parental involvement in the decision-making process illustrated a somewhat different and complex picture. Strict adherence to the concept of certainty might impede the process of decision-making, thereby not discussing palliation and missing opportunities to include parental values and preferences. Copyright © 2023. The Author(s).
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01170-z" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01170-z</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).
2023
BMC Palliative Care
Child
Communication
Critical Illness
Critical Illness/th [therapy]
Death
Decision Making
Delivery of Health Care
Fauchère JC
Female
Gubler D
Hendriks MJ
Humans
Infant Newborn
July List 2023
Limacher R
Parents
Pregnancy
Probability
Qualitative Research
Uncertainty
-
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Title
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July 2023 List
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Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.1016/j.phoj.2019.11.001" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.phoj.2019.11.001</a>
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Religious and cultural challenges in paediatrics palliative care: A review of literature
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Journal of Pediatric Hematology/Oncology
Date
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2019
Subject
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cultural anthropology; palliative therapy; pediatrics; religion; autopsy; caregiver; coping behavior; data base; decision making; human; interpersonal communication; life; organ donor; Palliative Care; review; software; systematic review; terminal care; terminally ill patient
Creator
An entity primarily responsible for making the resource
Khalid K; Ku Md Saad S; Abd Ghani NA; Mohamed Abdul Kadher AN
Description
An account of the resource
Introduction: Paediatric palliative care aims to improve the quality of life of both the patients and their families when facing life-threatening illnesses. However, regions with strong religious and cultural practices made caring for ill children even more challenging due to the various, and at times, contrasting expectations from the families and the healthcare providers. Objective(s): This article aimed to discover the challenges of paediatric palliative care delivery in the context of culture and religion. Method(s): A systematic review was conducted through an online search of three databases for free open access articles and book chapters published between 2000 and 2018: Medline, Scopus and Google Scholar. Search key terms included: culture, custom, spiritual, ethnic, or religion [AND] end-of-life, palliative care, cancer, hospice, [AND] children or paediatrics. Result(s): Thirty-two (32) articles met the eligibility criteria. Out of these, five distinct themes emerged on the basis of implications for paediatrics palliative care. These include the (i) role of religion and culture in decision-making, (ii) the involvement of clerics towards the end-of-life, (iii) specific communication with the children and their caregivers about imminent death, (iv) the acceptance of autopsy and organ donation, and (v) spiritual coping strategies. Discussion(s): This review paper provided an insight into the impact of religion and topographical culture to the paediatrics end-of-life care. Cultural and religious traditions are dynamic and cannot be generalized to all families, hence a guided framework is recommended for clinicians working in diverse ethnic population in dealing with culturally sensitive, end-of-life care.Copyright © 2019 Pediatric Hematology Oncology Chapter of Indian Academy of Pediatrics
Identifier
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<a href="http://doi.org/10.1016/j.phoj.2019.11.001" target="_blank" rel="noreferrer noopener">10.1016/j.phoj.2019.11.001</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).
2019
Abd Ghani NA
Autopsy
Caregiver
Coping Behavior
cultural anthropology
Data Base
Decision Making
Human
Interpersonal Communication
Journal Of Pediatric Hematology/oncology
July List 2023
Khalid K
Ku Md Saad S
Life
Mohamed Abdul Kadher AN
organ donor
Palliative Care
Palliative Therapy
Pediatrics
Religion
Review
Software
Systematic Review
Terminal Care
terminally Ill Patient
-
Dublin Core
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Title
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May 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May List 2023
URL Address
<a href="http://doi.org/10.1177/13674935231158456" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935231158456</a>
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Children's complex health: Maternal experiences of care and decision making
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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community health nursing; decision making; long term care; mother; qualitative research; advance care planning; article; child; Child; coronavirus disease 2019; Decision Making; female; human; Only Child; pandemic; thematic analysis; voice; vulnerability
Creator
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Willis E; Godbold R
Description
An account of the resource
An increasing number of children with complex life-limiting and life-threatening conditions are being cared for at home by their parents. Negative impacts on maternal health are now being recognised. This study sought to voice parental experiences to determine what matters most; explore day-to-day decision making and Advance Care Planning; and to inform local service development. Seven mothers from one community nursing service were interviewed using a semi-structured qualitative approach during the Coronavirus disease 2019 pandemic. Seven data-driven themes were identified following six phase thematic analysis: cherishing normality; navigating the system; being proactive; meaningful connections; beginner to expert - and back; they're not any child - they're my child; and Coronavirus disease 2019 pandemic. Practice implications include early discussion of what matters most and benefits of written plans to ensure fair access to treatment for children with complex health. Mothers highlighted that sharing their story enhanced their sense of coping and purpose. Increased support at times of vulnerability and permission to explore decisions were highly valued.
Identifier
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<a href="http://doi.org/10.1177/13674935231158456" target="_blank" rel="noreferrer noopener">10.1177/13674935231158456</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).
2023
Advance Care Planning
Article
Child
Community Health Nursing
coronavirus disease 2019
Decision Making
Female
Godbold R
Human
Journal Of Child Health Care
Long Term Care
May List 2023
Mother
Only Child
Pandemic
Qualitative Research
Thematic Analysis
Voice
VULNERABILITY
Willis E