1
40
49
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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March 2018 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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URL Address
<a href="http://doi.org/10.11124/jbisrir-2015-2413" target="_blank" rel="noreferrer">http://doi.org/10.11124/jbisrir-2015-2413</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions: a qualitative systematic review protocol
Publisher
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Jbi Database Of Systematic Reviews And Implementation Reports
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Communication; Critical Illness/px [Psychology]; Palliative Care/px [Psychology]; Parents/px [Psychology]; Professional-Family Relations; adolescent; Adult; Child; Female; Health Personnel/px [Psychology]; Humans; infant; Male; Newborn; Preschool; Qualitative Research; Young Adult
Creator
An entity primarily responsible for making the resource
Ekberg S; Bradford N; Herbert A; Danby S; Yates P
Description
An account of the resource
REVIEW QUESTION/OBJECTIVE: The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions. For the purposes of this review, "healthcare users" will be taken to include children who have life-limiting conditions and their families. The question to be addressed is:What are healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions? BACKGROUND: The prospect of the death of a child from an incurable medical condition is harrowing, yet finding a way to discuss this prospect is crucial to maximize the quality of life for such children and their families. High-quality communication is well recognized as a core skill health care professionals need to maximize the quality of care they provide. This skill is valued by service users, who consistently rate it as one of the highest priorities for the care they receive. Evidence suggests, however, that healthcare professionals can feel ill-equipped or uncomfortable communicating with and about such children. Therefore, it is important to understand what represents high-quality communication and what is involved in accomplishing this within pediatric palliative care.In recent decades there has been an increased focus on providing palliative care for children who have life-limiting conditions. These are conditions for which no cure is available and for which the probable outcome is premature death. Palliative care may also be appropriate for children who have life-threatening conditions; these are conditions where there is not only a high probability of premature death but also a chance of long-term survival into adulthood Although pediatric palliative care is underpinned by the same philosophy as adult palliative care, children who have life-limiting conditions and their families have particular needs that distinguish them from users of adult palliative care. For example, at a physical level children are more likely than adults to have non-malignant conditions that follow trajectories in which children oscillate between feeling relatively well and acutely unwell. The social dynamic of their care is also radically different, particularly given the role of parents or guardians in making surrogate decisions about their child's care. Such factors warrant considering pediatric palliative care as distinct from palliative care more generally.Although the particular circumstances of children who have life-limiting conditions have led to development of pediatric palliative care, the particular provisions of this care differs among countries. One aspect of variation is the age range of patients. Pediatric palliative care is usually provided to neonates, infants, children, adolescents and young adults, but international variations in the definitions of these age ranges, particularly for adolescents and young adults, means pediatric palliative care is provided to different age groups in different countries. This review therefore adopts a pragmatic rather than an age-based definition of a pediatric palliative care, considering all studies relating to service users who are being cared for by pediatric rather than adult healthcare services.In catering for the unique needs of children who have life-limiting conditions and their families, pediatric palliative care aims to achieve pain and symptom management, enhanced dignity and quality of life, and psychosocial and spiritual care. It also seeks to incorporate care for patients' broader families and facilitating access to appropriate services and support. High-quality communication is crucial for achieving these aims. It enables healthcare users and providers to make decisions that underpin the care that is provided and the quality of the life that is possible for patients and their families.Although both users and providers recognize the value of high-quality communication with and about children who have life-limiting conditions, this does not mean that these stakeholders necessarily share the same perspective of what constitutes high-quality communication and the best way of accomplishing this. Focusing on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions, the present review will explore the subjective impact of professionals' communication on the people for whom they provide care. It may be necessary to consider a range of contextual factors to understand healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions. For instance, age, developmental stage, cognitive capacity, emotional and social strengths, and family dynamics can influence a child's level of involvement in discussions about their condition and care.13,28,29,35 Although there are factors that appear more consistent across the range of pediatric palliative care users, such as parents' preferences for being treated by healthcare professionals as partners in making decisions about the care of their child, there is not always such consistency.29 Nor is it clear whether such findings can be generalized across different cultural contexts.13,36 In appraising existing research, this systematic review will therefore consider the relationship between the context of individual studies and their reported findings. Background The primary aim of this review is to identify, appraise and synthesize existing qualitative evidence of healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions. The review will consider relevant details of these findings, particularly whether factors like age are relevant for understanding particular experiences of communication. An outcome of this review will be the identification of best available qualitative evidence that can be used to inform professional practice, as well as an identification of priorities for future research in pediatric palliative care. Background A preliminary search in MEDLINE and CINAHL found primary studies exploring healthcare users' experiences of aspects of communicating with healthcare professionals about children who have life-limiting conditions. A search was also conducted for existing systematic reviews in PubMed, CINAHL, EMBASE, PsycINFO, the Cochrane Database of Systematic Reviews, the JBI Database of Systematic Reviews and Implementation Reports, and PROSPERO. No systematic reviews on this topic were found.
2015-11
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.11124/jbisrir-2015-2413" target="_blank" rel="noreferrer">10.11124/jbisrir-2015-2413</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2015
Adolescent
Adult
Bradford N
Child
Communication
Critical Illness/px [psychology]
Danby S
Ekberg S
Female
Health Personnel/px [psychology]
Herbert A
Humans
Infant
Jbi Database Of Systematic Reviews And Implementation Reports
Male
March 2018 List
Newborn
Palliative Care/px [psychology]
Parents/px [psychology]
Preschool
Professional-family Relations
Qualitative Research
Yates P
Young Adult
-
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 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1038/jp.2015.188" target="_blank" rel="noreferrer">http://doi.org/10.1038/jp.2015.188</a>
Dublin Core
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Title
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Palliative care in neonatal neurology: robust support for infants, families and clinicians
Publisher
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Journal Of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Infant; Nervous System Diseases; Palliative Care; Parents/px [Psychology]; Clinical Decision-Making/es [Ethics]; Diseases; Diseases/px [Psychology]; Diseases/th [Therapy]; Humans; infant; Intensive Care Units; Neonatal/og [Organization & Administration]; Nervous System Diseases/px [Psychology]; Nervous System Diseases/th [Therapy]; Neurology/mt [Methods]; Newborn; Palliative Care/es [Ethics]; Palliative Care/mt [Methods]; Palliative Care/px [Psychology]; social support
Creator
An entity primarily responsible for making the resource
Lemmon ME; Bidegain M; Boss RD
Description
An account of the resource
Infants with neurological injury and their families face unique challenges in the neonatal intensive care unit. As specialty palliative care support becomes increasingly available, we must consider how to intentionally incorporate palliative care principles into the care of infants with neurological injury. Here, we review data regarding neonatal symptom management, prognostic uncertainty, decision making, communication and parental support for neonatal neurology patients and their families.
2015
Identifier
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<a href="http://doi.org/10.1038/jp.2015.188" target="_blank" rel="noreferrer">10.1038/jp.2015.188</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).
2015
Bidegain M
Boss RD
Clinical Decision-Making/es [Ethics]
Diseases
Diseases/px [Psychology]
Diseases/th [Therapy]
Humans
Infant
Intensive Care Units
Journal Of Perinatology
Lemmon ME
March 2018 List
Neonatal/og [Organization & Administration]
Nervous System Diseases
Nervous System Diseases/px [Psychology]
Nervous System Diseases/th [Therapy]
Neurology/mt [Methods]
Newborn
Palliative Care
Palliative Care/es [Ethics]
Palliative Care/mt [methods]
Palliative Care/px [psychology]
Parents/px [psychology]
Social Support
-
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 2018 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
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URL Address
<a href="http://doi.org/10.1053/j.semperi.2016.09.002" target="_blank" rel="noreferrer">http://doi.org/10.1053/j.semperi.2016.09.002</a>
Dublin Core
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Title
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Early neurodevelopmental outcomes of extremely preterm infants
Publisher
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Seminars In Perinatology
Date
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2016
Subject
The topic of the resource
Biomedical Research; Infant; neonatology; Adhd; Brain/embryology/ physiopathology; cerebral palsy; Developmental Disabilities/etiology/ physiopathology; Diseases/ physiopathology; Extremely Premature/growth & development/physiology/psychology; Fetal Organ Maturity; Humans; infant; intellectual impairment; intraventricular hemorrhage; Nervous System Diseases/etiology/ physiopathology; neurodevelopment; neurodevelopmental outcomes; Newborn; Premature; preterm birth; Risk Factors; sensory impairment; Survival Rate/trends; Very Low Birth Weight/growth & development/physiology/psychology; white matter injury
Creator
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Rogers EE; Hintz SR
Description
An account of the resource
Infants born at extreme preterm gestation are at risk for both death and disability. Although rates of survival have improved for this population, and some evidence suggests a trend toward decreased neuromotor impairment over the past decades, a significant improvement in overall early neurodevelopmental outcome has not yet been realized. This review will examine the rates and types of neurodevelopmental impairment seen after extremely preterm birth, including neurosensory, motor, cognitive, and behavioral outcomes. We focus on early outcomes in the first 18-36 months of life, as the majority of large neonatal studies examining neurodevelopmental outcomes stop at this age. However, this early age is clearly just a first glimpse into lifetime outcomes; the neurodevelopmental effects of extreme prematurity may last through school age, adolescence, and beyond. Importantly, prematurity appears to be an independent risk factor for adverse development, but this population demonstrates considerable variability in the types and severity of impairments. Understanding both the nature and prevalence of neurodevelopmental impairment among extremely preterm infants is important because it can lead to targeted interventions that in turn may lead to improved outcomes.
2016-12
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1053/j.semperi.2016.09.002" target="_blank" rel="noreferrer">10.1053/j.semperi.2016.09.002</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).
2016
Adhd
Biomedical Research
Brain/embryology/ physiopathology
Cerebral Palsy
Developmental Disabilities/etiology/ physiopathology
Diseases/ physiopathology
Extremely Premature/growth & development/physiology/psychology
Fetal Organ Maturity
Hintz SR
Humans
Infant
Intellectual Impairment
intraventricular hemorrhage
March 2018 List
Neonatology
Nervous System Diseases/etiology/ physiopathology
neurodevelopment
Neurodevelopmental Outcomes
Newborn
Premature
preterm birth
Risk Factors
Rogers EE
Seminars in Perinatology
sensory impairment
Survival Rate/trends
Very Low Birth Weight/growth & development/physiology/psychology
white matter injury
-
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 2018 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 2018 List
URL Address
<a href="http://doi.org/10.4314/ahs.v16i4.2" target="_blank" rel="noreferrer">http://doi.org/10.4314/ahs.v16i4.2</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Pediatric out-of-hospital deaths following hospital discharge: a mixed-methods study
Publisher
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African Health Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Child Mortality; Infant Mortality; Caregivers/psychology; Child; Communicable Diseases/ mortality; Educational Status; Female; Health Services Accessibility/ statistics & numerical data; Humans; infant; infectious diseas; Length of Stay; Logistic Models; Male; Patient Acceptance of Health Care/psychology; Patient Discharge/ statistics & numerical data; Pediatrics; post-discharge mortality; Preschool; qualitative interviews; Time Factors; Uganda; Uganda/epidemiology; Water Supply
Creator
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English L; Kumbakumba E; Larson CP; Kabakyenga J; Singer J; Kissoon N; Ansermino JM; Wong H; Kiwanuka J; Wiens MO
Description
An account of the resource
BACKGROUND: Out-of-hospital death among children living in resource poor settings occurs frequently. Little is known about the location and circumstances of child death following a hospital discharge. OBJECTIVES: This study aimed to understand the context surrounding out-of-hospital deaths and the barriers to accessing timely care for Ugandan children recently discharged from the hospital. METHODS: This was a mixed-methods sub-study within a larger cohort study of post-discharge mortality conducted in the Southwestern region of Uganda. Children admitted with an infectious illness were eligible for enrollment in the cohort study, and then followed for six months after discharge. Caregivers of children who died outside of the hospital during the six month post-discharge period were eligible to participate in this sub-study. Qualitative interviews and univariate logistic regression were conducted to determine predictors of out-of-hospital deaths. RESULTS: Of 1,242 children discharged, 61 died during the six month post-discharge period, with most (n=40, 66%) dying outside of a hospital. Incremental increases in maternal education were associated with lower odds of out-of-hospital death compared to hospital death (OR: 0.38, 95% CI: 0.19 - 0.81). The qualitative analysis identified health seeking behaviors and common barriers within the post-discharge period which delayed care seeking prior to death. For recently discharged children, caregivers often expressed hesitancy to seek care following a recent episode of hospitalization. CONCLUSION: Mortality following discharge often occurs outside of a hospital context. In addition to resource limitations, the health knowledge and perceptions of caregivers can be influential to timely access to care. Interventions to decrease child mortality must consider barriers to health seeking among children following hospital discharge.
2016-12
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.4314/ahs.v16i4.2" target="_blank" rel="noreferrer">10.4314/ahs.v16i4.2</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
African Health Sciences
Ansermino JM
Caregivers/psychology
Child
Child Mortality
Communicable Diseases/ mortality
Educational Status
English L
Female
Health Services Accessibility/ statistics & numerical data
Humans
Infant
Infant Mortality
infectious diseas
Kabakyenga J
Kissoon N
Kiwanuka J
Kumbakumba E
Larson CP
Length Of Stay
Logistic Models
Male
March 2018 List
Patient Acceptance of Health Care/psychology
Patient Discharge/ statistics & numerical data
Pediatrics
post-discharge mortality
Preschool
Qualitative interviews
Singer J
Time Factors
uganda
Uganda/epidemiology
Water Supply
Wiens MO
Wong H
-
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 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1016/j.apnr.2016.08.012" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.apnr.2016.08.012</a>
Dublin Core
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Title
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Recruiting bereaved parents for research after infant death in the neonatal intensive care unit
Publisher
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Applied Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Bereavement; Intensive Care Units; Adult; bereaved parents; Humans; infant; infant death; Neonatal; Neonatal Intensive Care Unit; Newborn; Parents/ psychology; Qualitative Research; Recruitment; Sensitive topic
Creator
An entity primarily responsible for making the resource
Currie ER; Roche C; Christian BJ; Bakitas M; Meneses K
Description
An account of the resource
Understanding parental experiences following infant death in the neonatal intensive care unit (NICU) is a high research priority and a necessary first step to improving health services. However, recruiting bereaved parents to discuss their experiences on such an extremely sensitive topic can be challenging and research procedures must be planned carefully in order to get an adequate sample. There is little published in the literature detailing specific strategies for recruiting bereaved parents for grief research, especially strategies for contacting parents and identifying factors that might affect participation. The purpose of this paper is to describe the process of recruiting bereaved parents into a qualitative research study exploring parental NICU experiences and grief responses following infant death. We describe a successful recruitment plan that led to the enrollment of difficult to recruit participants such as fathers, and individuals representing minorities and those from lower socioeconomic (SES) groups. Bereaved parents of infants after an NICU hospitalization should continue to be recruited for research studies for their unique perspectives and valuable insights about the devastating experience of infant death. Participants in this study reported more benefits than harm and the results addressed a critical gap in the literature.
2016-11
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.apnr.2016.08.012" target="_blank" rel="noreferrer">10.1016/j.apnr.2016.08.012</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).
2016
Adult
Applied Nursing Research
Bakitas M
Bereaved Parents
Bereavement
Christian BJ
Currie ER
Humans
Infant
Infant Death
Intensive Care Units
March 2018 List
Meneses K
Neonatal
Neonatal Intensive Care Unit
Newborn
Parents/ Psychology
Qualitative Research
Recruitment
Roche C
Sensitive topic
-
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 2018 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 2018 List
URL Address
<a href="http://doi.org/10.5546/aap.2016.298" target="_blank" rel="noreferrer">http://doi.org/10.5546/aap.2016.298</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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Opinions of members of the National Civil (Family Proceedings) and Criminal Courts in withholding or withdrawing of life support situations in pediatrics
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
2016
Subject
The topic of the resource
Attitude to Death; Argentina; Child; Cross-Sectional Studies; decision-making; ethics; Health Care Surveys; Humans; legislation and jurisprudence; Life Support Care/ legislation & jurisprudence; Pediatric intensive care unit; Pediatrics/ legislation & jurisprudence; Withholding Treatment; Withholding Treatment/ legislation & jurisprudence
Creator
An entity primarily responsible for making the resource
Selandari JO; Ciruzzi MS; Roitman AJ; Ledesma F; Menendez C; Garcia HO
Description
An account of the resource
INTRODUCTION: The possibility of sustaining life functions makes it difficult to distinguish between a dying patient and a patient with chances of survival, raising a dilemma for everyone around them. On the one side, continuing with life support techniques that would only extend an irreversible process and result in physical and psychological damage and harm their dignity. On the other side, withholding or withdrawing life support without an adequate reflection and diagnostic-therapeutic effort which may lead to the death of a potentially recoverable child. In addition, making decisions in this context implies facing barriers that hinder the possibility of pursuing the patient's best interest. Among such barriers, the fear of litigation plays a major role. To what extent is this fear justified? OBJECTIVE: To explore the opinions of the members of the National Judiciary regarding the approach to withholding or withdrawing of life support from a legal stance. POPULATION AND METHODS: Professionals working in the criminal, civil and forensic medicine settings. Semistructured survey on three hypothetical case histories that implied making a decision to withhold or withdraw life support. RESULTS: One hundred and eighty-five surveys were distributed; 68 (36.76%) were partially completed and 51 (30.3%), in full. Twenty-eight (55%) survey respondents did not criminalize any of the three cases presented. Thirteen (25%) respondents considered that the decisions made in the three cases constituted a crime; 6 (12%), only in one case; and 4 (8%), in two out of the three. Crimes described by survey respondents included intentional homicide, wrongful death, and failure to render assistance. CONCLUSIONS: Forty-five percent of survey respondents considered that decisions made involved some form of crime.
2016-08
Identifier
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<a href="http://doi.org/10.5546/aap.2016.298" target="_blank" rel="noreferrer">10.5546/aap.2016.298</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).
2016
Archivos Argentinos De Pediatria
Argentina
Attitude To Death
Child
Ciruzzi MS
Cross-sectional Studies
Decision-making
Ethics
Garcia HO
Health Care Surveys
Humans
Ledesma F
Legislation And Jurisprudence
Life Support Care/ legislation & jurisprudence
March 2018 List
Menendez C
Pediatric Intensive Care Unit
Pediatrics/ legislation & jurisprudence
Roitman AJ
Selandari JO
Withholding Treatment
Withholding Treatment/ legislation & jurisprudence
-
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 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1177/1359105314550349" target="_blank" rel="noreferrer">http://doi.org/10.1177/1359105314550349</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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Development and validation of the Communicating with Family about Brain Death Scale
Publisher
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Journal Of Health Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Communication; Family; Tissue and Organ Procurement; adolescent; Adult; Attitudes; brain-dead organ donation; Brain Death/ diagnosis; communicating with family about brain death; Cross-Sectional Studies; decision making; end-of-life decision making; FACTOR analysis; Female; first-person organ donation consent laws; Health Knowledge; Humans; Male; Middle Aged; misconceptions about brain death; Practice; Reproducibility of Results; statistical; Young Adult
Creator
An entity primarily responsible for making the resource
Bresnahan M; Zhuang J
Description
An account of the resource
This study reports development of a scale assessing communication with family about brain-dead organ donation. Two cross-sectional studies demonstrated scale validity. Tests of internal, external, and predictive validity were conducted using confirmatory factor analysis. In both studies, the same 6 items were shown to be unidimensional with acceptable reliability. Parallelism was shown between the Brain Death Scale and a measure of communication with family. Predictive validity was exhibited between participants' donor status and the Brain Death Scale. The scale was associated with knowledge about brain death confirming misconceptions about brain-dead organ donation.
2016-07
Identifier
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<a href="http://doi.org/10.1177/1359105314550349" target="_blank" rel="noreferrer">10.1177/1359105314550349</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adolescent
Adult
Attitudes
Brain Death/ diagnosis
brain-dead organ donation
Bresnahan M
communicating with family about brain death
Communication
Cross-sectional Studies
Decision Making
End-of-life Decision Making
Factor Analysis
Family
Female
first-person organ donation consent laws
Health Knowledge
Humans
Journal Of Health Psychology
Male
March 2018 List
Middle Aged
misconceptions about brain death
Practice
Reproducibility of Results
statistical
Tissue and Organ Procurement
Young Adult
Zhuang J
-
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
March 2018 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 2018 List
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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Palliative Care. Workforce Development
Publisher
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Australian Nursing & Midwifery Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Clinical Competence; education; Hospice and Palliative Care Nursing/ed [Education]; Hospice and Palliative Care Nursing/ma [Manpower]; Australia; continuing; Humans; nursing
Creator
An entity primarily responsible for making the resource
Ash K; Yates P
Description
An account of the resource
Palliative care is delivered in almost all settings where healthcare is provided, including neonatal units, paediatric services, acute hospitals, general practices, community settings and aged care services. People who are dying have needs which require that nurses are able to deliver high quality evidence based and compassionate care no matter what their setting of practice.
2016
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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).
2016
Ash K
Australia
Australian Nursing & Midwifery Journal
Clinical Competence
Continuing
Education
Hospice and Palliative Care Nursing/ed [Education]
Hospice and Palliative Care Nursing/ma [Manpower]
Humans
March 2018 List
Nursing
Yates P
-
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<a href="http://doi.org/10.1016/j.medpal.2017.08.008" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.medpal.2017.08.008</a>
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Title
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Palliative care in neonatology: French neonatologists' practice
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Medecine Palliative
Date
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2017
Subject
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cohort; ethics; neonatal-period; Neonatology; Palliative Care; prematurity
Creator
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Martini P; Alluin R; Vieux R
Description
An account of the resource
Background. - Though ethical dilemma is common in neonatal practice, it is only recently subject to scientific research. Objectives. - We aimed to describe neonatologists' practices in end of life decision-making processes and in palliative care, and their practical implementation in NICU. Methods. - This cross-sectional prospective study was performed by an online survey. Pediatricians from French level III maternity wards were selected. Data collected concerned the general characteristics of the participants as well as their personal awareness of palliative reflection. Five clinical cases explored processes of discussion and decision in palliative care, as well as their implementation. Results. - Seventy-one practitioners responded on 65 level III NICUs. Ten percent were trained in palliative medicine and 17% had this project. The palliative care team was invited in less than a third of the multidisciplinary meetings, although most responders acknowledged its usefulness in accompanying children, their families or caregivers. Parents' weight in the final decision was important for the responders but less than that of doctors. It concerned parents' vision on disability. For palliative care in the delivery room, 13% did not use any medication. Others mostly used the umbilical vein. Midwives more often took responsibility of palliative care in the delivery rooms. Conclusions. - Neonatologists expert in palliative care are still too few in level III centers. Palliative teams are not yet involved in patient's regular care. Practices in palliative care in France are still quite dependent on the center, especially regarding medications. This study underlines the importance of interventions training neonatologists in the field of palliative medicine. (c) 2017 Elsevier Masson SAS. All rights reserved.
2017-12
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<a href="http://doi.org/10.1016/j.medpal.2017.08.008" target="_blank" rel="noreferrer">10.1016/j.medpal.2017.08.008</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Alluin R
cohort
Ethics
March 2018 List
Martini P
Medecine Palliative
neonatal-period
Neonatology
Palliative Care
Prematurity
Vieux R
-
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Title
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March 2018 List
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<a href="http://doi.org/10.1055/s-0036-1586753" target="_blank" rel="noreferrer">http://doi.org/10.1055/s-0036-1586753</a>
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Title
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Neonatal Hospital Course and Outcomes of Live-born Infants with Trisomy 18 at Two Tertiary Care Centers in the United States
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American Journal Of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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Birth Weight; Patient Discharge; Artificial; Cardiotonic Agents/therapeutic use; Congenital/etiology; Female; gestational age; Heart Defects; Humans; infant; infant death; Intensive Care Units; Length of Stay; Live Birth; Male; Neonatal; Newborn; Perinatal Death; Respiration; Sex Factors; Survival Rate; Tertiary Care Centers; Trisomy 18 Syndrome/complications/ therapy; United States
Creator
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Dereddy NR; Pivnick EK; Upadhyay K; Dhanireddy R; Talati AJ
Description
An account of the resource
Objectives Trisomy 18 is presumed to be a lethal chromosomal abnormality; medical management of infants with this aneuploidy is controversial. Our objective was to describe our approach and experience with trisomy 18 infants. Study Design We reviewed the initial hospital course, management, and factors predicting discharge from the hospital from two large tertiary care neonatal intensive care units in the southern United States over 26 years. Results Of the 29 infants with trisomy 18, 21 (72%) died in the hospital and 8 (28%) were discharged home. 19 (66%) infants received mechanical ventilation and 10 (34%) received inotropic medications. Eight infants had critical congenital heart defects; only one survived to discharge. Three infants underwent major surgeries; one cardiac surgery, one tracheoesophageal fistula repair, and one myelomeningocele repair. Median length of hospital stay was 14 days (range, 0-78) for all the infants and 31 days (range, 18-66) for those that were discharged home. Factors associated with discharge from the hospital were female sex, higher gestational age, and absence of critical congenital heart defects. Median survival time was 13 days and was significantly longer for females compared with males. Our 1-month and 1-year survival rates were 31% and 3.9% respectively. Conclusion A significant proportion of infants with trisomy 18 were discharged home. These data are helpful in counseling parents of infants with trisomy 18.
2017-02
Identifier
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<a href="http://doi.org/10.1055/s-0036-1586753" target="_blank" rel="noreferrer">10.1055/s-0036-1586753</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
American Journal of Perinatology
Artificial
Birth Weight
Cardiotonic Agents/therapeutic use
Congenital/etiology
Dereddy NR
Dhanireddy R
Female
Gestational Age
Heart Defects
Humans
Infant
Infant Death
Intensive Care Units
Length Of Stay
Live Birth
Male
March 2018 List
Neonatal
Newborn
Patient Discharge
Perinatal Death
Pivnick EK
Respiration
Sex Factors
Survival Rate
Talati AJ
Tertiary Care Centers
Trisomy 18 Syndrome/complications/ therapy
United States
Upadhyay K
-
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<a href="http://doi.org/10.1016/j.pedhc.2016.04.015" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pedhc.2016.04.015</a>
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Title
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Hospice Use for Infants With Life-Threatening Health Conditions, 2007 to 2010
Publisher
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Journal Of Pediatric Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Pediatric Nurse Practitioners; Andersen model; California; Cardiovascular Diseases; complex chronic conditions; Congenital Abnormalities; end of life; hospice; Hospice Care/statistics & numerical data/ utilization; Humans; infant; Infants; Insurance Claim Review/statistics & numerical data; Length of Stay/economics/ statistics & numerical data; Medicaid; Medicaid/ statistics & numerical data; Nurse-Patient Relations; Nurse's Role; Palliative Care/statistics & numerical data/ utilization; Parents/ psychology; Professional-Family Relations; Respiratory Insufficiency; United States
Creator
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Lindley LC; Newnam KM
Description
An account of the resource
BACKGROUND: Infant deaths account for a majority of all pediatric deaths. However, little is known about the factors that influence parents to use hospice care for their infant with a life-threatening health condition. METHODS: Data were used from 2007 to 2010 California Medicaid claims files (N = 207). Analyses included logistic and negative binomial multivariate regression models. RESULTS: More than 15% of infants enrolled in hospice care for an average of 5 days. Infant girls and infants with congenital anomalies were more likely to enroll in hospice care and to have longer stays. However, cardiovascular and respiratory conditions were negatively related to hospice enrollment and hospice length of stay. CONCLUSIONS: This study provides insights for nurses and other clinicians who care for infants and their families at end of life and suggests that nurses can assist families in identifying infant hospice providers who may help families understand their options for end-of-life care.
2017-01
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<a href="http://doi.org/10.1016/j.pedhc.2016.04.015" target="_blank" rel="noreferrer">10.1016/j.pedhc.2016.04.015</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Andersen model
California
Cardiovascular Diseases
Complex Chronic Conditions
Congenital Abnormalities
End Of Life
Hospice
Hospice Care/statistics & numerical data/ utilization
Humans
Infant
Infants
Insurance Claim Review/statistics & numerical data
Journal Of Pediatric Health Care
Length of Stay/economics/ statistics & numerical data
Lindley LC
March 2018 List
Medicaid
Medicaid/ statistics & numerical data
Newnam KM
Nurse-patient Relations
Nurse's Role
Palliative Care/statistics & numerical data/ utilization
Parents/ Psychology
Pediatric Nurse Practitioners
Professional-family Relations
Respiratory Insufficiency
United States
-
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Title
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March 2018 List
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URL Address
<a href="http://doi.org/10.1111/dmcn.13622" target="_blank" rel="noreferrer">http://doi.org/10.1111/dmcn.13622</a>
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Title
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Prevalence and management of dystonia in a paediatric palliative care cohort
Publisher
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Developmental Medicine And Child Neurology
Date
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2017
Subject
The topic of the resource
dystonia; palliative therapy; prevalence; 302-17-0 (chloral hydrate); 4205-90-7 (clonidine); 4205-91-8 (clonidine); 57066-25-8 (clonidine); benzodiazepine derivative; Child; chloral hydrate; Clinical Article; clonidine; cohort analysis; cross-sectional study; Diagnosis; documentation; England; Female; Human; joint; Male; neurology; precancer; preschool child; seizure
Creator
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Slater T; Laddie J; Hughes G; Lumsden DE
Description
An account of the resource
Objectives: Dystonia and seizures can be common, unpredictable and distressing neurological symptoms in paediatric palliative care. Emergency seizure management is increasingly under joint neurology and palliative care, often incorporated into "passport type" individual plans, as advocated by the Royal College of Paediatrics and Child Health. This is rarer in dystonia. We evaluated the comparative frequency of dystonia and seizures in a cohort of children receiving paediatric palliative care and examined how emergency plans differ between neurology, palliative care and in collaboration. Methods: We performed a cross-sectional analysis of the palliative care database at Evelina London Children's Hospital, a non-malignant caseload covering southeast England. Documentation over 12 months (preceding July 2017) was reviewed to assess the frequency of patients with dystonia and seizures, current relevant therapies and proposed emergency management. Results: In a cohort of 109 children with a complex range of diagnoses (mean age = 6.0 years), 37% (n=40) suffered from seizures, 27% (n=29) from dystonia and 43% (n=47) from both. Emergency dystonia plans were identified in 51.7% (15/29) of patients: 7 by palliative care and 8 by neurology. No collaborative plans were found. Emergency seizure plans were identified in 80% (32/40) of patients: 11 by palliative care, 9 by neurology and 12 in collaboration. Conclusions: Dystonia is almost as common as seizures in children with non-malignant conditions receiving palliative care. Individualised seizures plans were commonly documented, but less for prolonged dystonic episodes. Dystonia management was more often led by neurology, in contrast to clear evidence of joint working in patients with seizures. Medications differed for dystonia: palliative care promoted conservative measures and benzodiazepines, whereas clonidine hydrochloride and chloral hydrate were favoured by neurology. Paediatric palliative care is playing an increasing role in life-limiting and life-threatening neurological conditions. However, increased collaborative working is essential to ensure consistent patient-focussed management.
2017
Identifier
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<a href="http://doi.org/10.1111/dmcn.13622" target="_blank" rel="noreferrer">10.1111/dmcn.13622</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
302-17-0 (chloral hydrate)
4205-90-7 (clonidine)
4205-91-8 (clonidine)
57066-25-8 (clonidine)
benzodiazepine derivative
Child
chloral hydrate
Clinical Article
clonidine
Cohort Analysis
Cross-sectional Study
Developmental Medicine and Child Neurology
Diagnosis
Documentation
Dystonia
England
Female
Hughes G
Human
joint
Laddie J
Lumsden DE
Male
March 2018 List
Neurology
Palliative Therapy
precancer
Preschool Child
Prevalence
Seizure
Slater T
-
Dublin Core
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Title
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March 2018 List
Text
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March 2018 List
URL Address
<a href="http://doi.org/10.1111/dmcn.13623" target="_blank" rel="noreferrer">http://doi.org/10.1111/dmcn.13623</a>
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Title
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Neurodegenerative conditions: Exploring the role of music to enhance speech and cognitive functioning in children with batten disease
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Developmental Medicine And Child Neurology
Date
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2017
Subject
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Music Therapy; neuronal ceroid lipofuscinosis; speech; Child; cohort analysis; endogenous compound; Female; Human; Language; Male; Mood; Perception; singing; Teaching
Creator
An entity primarily responsible for making the resource
Ockelford A; Atkinson R
Description
An account of the resource
Batten disease, the most common form of the neuronal ceroid lipofuscinoses, is a genetic life-limiting neurodegenerative condition that presents as early-onset dementia in children (Mole, Williams and Goebel, 2011). Symptoms include blind-ness, epilepsy, hallucinations, memory loss, the decline of speech, language and swallowing abilities, and the catastrophic deterioration of fine and gross motor skills (Bills et al., 1998). In a recent European research initiative led by Bengt Elmerskog (National Resource Centre for VI, Norway), exploring educational and therapeutic strategies for children with Batten disease, parents reported that music plays an increasingly significant role in their children's lives as the disease progresses. Evidence investigating the effects of music on neurological conditions has highlighted important links between music perception and speech, language, cognition and movement (Zatorre, 2013, Magee, 2017). This presentation will illustrate initial findings from two studies currently in train at the Applied Music Research Centre at the University of Roehampton. The first is following a cohort of 12 children and young people with Batten disease (CLN2, CLN3, CLN5, CLN 6 and CLN8) over a period of three years, to ascertain the extent to which weekly musical interventions and music therapy may have the capacity to regulate speech, control movement, enhance mood and promote social interac-tion. The second, doctoral study, which focuses on CLN3, the juvenile form of Batten disease, explores how singing may facilitate the production of expressive language when speech is in decline through (a) encouraging patients to learn the benefits of melodic intonation and rhythmic speaking techniques, and (b) teaching patients a repertoire of 'micro-songs', that embody key functional language. It is proposed that techniques may help scaffold language and everyday speech and, subsequently, maintain functional speech and communication for longer.
2017
Identifier
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<a href="http://doi.org/10.1111/dmcn.13623" target="_blank" rel="noreferrer">10.1111/dmcn.13623</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Atkinson R
Child
Cohort Analysis
Developmental Medicine and Child Neurology
Endogenous Compound
Female
Human
Language
Male
March 2018 List
Mood
Music Therapy
neuronal ceroid lipofuscinosis
Ockelford A
Perception
singing
Speech
Teaching
-
Dublin Core
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Title
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March 2018 List
Text
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Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jaac.2017.07.593" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jaac.2017.07.593</a>
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Title
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Posttraumatic growth in hospitalized children and adolescents
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Journal Of The American Academy Of Child And Adolescent Psychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
hospitalized child; Attention; California; Child; childhood; Female; Human; injury; Male; Palliative therapy; psychiatrist; psychologist; Psychology; role stress; systematic review; wellbeing
Creator
An entity primarily responsible for making the resource
Ihle EC
Description
An account of the resource
Objectives: This presentation will describe the phenomenon of posttraumatic growth through a review of the literature on complex developmental trauma and salutogenesis. A description of a multidisciplinary approach to support posttraumatic growth (PTG) will also be presented. Methods: A review of the literature on adverse childhood events, complex developmental trauma,medical trauma in children, positive psychology, and PTG will be presented. This seminarwill thendescribe amultidisciplinary, collaborative approach [developed at University of California, San Francisco Benioff Children's Hospital (UCSF BCH)] to enhance well-being and support PTG. Results: There is much attention being paid to the role that complex developmental trauma and adverse childhood events (ACEs) play in determining the overall well-being of children and adolescents. One ACE that is particularly relevant to consultation-liaison (C/L) pediatric psychiatrists is the threat to bodily integrity; serious medical illness (and its treatment) is one such threat. ACEs have been associated with the maladaptive consequences of the stress response. However, it is important to highlight the auspicious role of stress in addition to its adaptive role (supporting survival). One positive aspect of stress is PTG where individuals gain strength and insight from crises. When medical trauma can be reframed as a stressor that promotes PTG, ACE is transformed from something pathogenic to an experience that is salutogenic. At UCSF BCH, a number of specialists play complementary roles in the effort to support salutogenesis. Our multidisciplinary, collaborative approach involves child and adolescent C/L psychiatrists, pediatric palliative care physicians, psychologists, and child life specialists in the effort to promote coping and enhance the emotional well-being of hospitalized patients. Conclusions: Medical trauma can be considered an ACE that challenges the resilience of both patients and their families. Interventions informed by the field of positive psychology can enhance resilience by supporting salutogenesis. Diverse disciplines can work collaboratively to support well-being and enhance PTG.
2017
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jaac.2017.07.593" target="_blank" rel="noreferrer">10.1016/j.jaac.2017.07.593</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Attention
California
Child
childhood
Female
Hospitalized Child
Human
Ihle EC
injury
Journal Of The American Academy Of Child And Adolescent Psychiatry
Male
March 2018 List
Palliative Therapy
psychiatrist
Psychologist
Psychology
role stress
Systematic Review
Wellbeing
-
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
March 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jaac.2017.07.064" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jaac.2017.07.064</a>
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Title
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Enhancing resilience in hospitalized children and adolescents
Publisher
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Journal Of The American Academy Of Child And Adolescent Psychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
hospitalized child; Anxiety; biofeedback; California; Child; clinical psychology; Comorbidity; complication; distress syndrome; Female; Hospitalization; Human; Male; Mental Health; music; pain; Palliative therapy; pet therapy; PostTraumatic Stress Disorder; psychiatrist; psychosocial care; Socialization; wellbeing
Creator
An entity primarily responsible for making the resource
Ihle EC
Description
An account of the resource
Objectives: This presentation will describe a collaborative intervention that can enhance resilience in hospitalized patients when they are struggling with the emotional sequelae of their medical illness. The presentation will discuss the specialty services at the University of California, San Francisco, Benioff Children's Hospital (UCSF BCH) that work cooperatively to support salutogenesis (the origin of health), in contrast to pathogenesis. The efficacy of our multidisciplinary approach will be demonstrated through descriptions of changes in patients' mental status and subjective reports of distress from patients and parents. Methods: This seminar will present our multidisciplinary approach to enhancing well-being and supporting resilience. The presentation will describe the collaboration of several complementary specialties. Primary source material and anecdotal reports from clinical cases will be presented from these medical, psychological, and psychosocial disciplines. Results: At UCSF BCH, specialists play complementary roles in the effort to support the emotional well-being of hospitalized patients. The child and adolescent consultation-liaison psychiatrist provides insight into psychiatric comorbidities that may be contributing to distress and interfere with coping. Pharmacologic interventions target the symptoms of these comorbid illnesses. Pediatric palliative care physicians address the physiologic symptoms endured by children with serious medical illnesses. Clinical psychologists help to identify the feedback loop between anxiety and pain and enhance a sense of safety through empirically validated interventions for anxiety and traumatic stress. The Child Life Specialist's role includes preparation for procedures; creating and implementing a coping plan for individual procedures and overall hospitalization through art and music; and providing psychosocial support through socialization, medical play, pet therapy, and biofeedback. Conclusions: Diverse disciplines can work collaboratively to support the overall well-being of the hospitalized child and his/her family members by effectively promoting coping. This multidisciplinary approach to enhancing resilience enables children to thrive even if their illnesses are life-limiting.
2017
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jaac.2017.07.064" target="_blank" rel="noreferrer">10.1016/j.jaac.2017.07.064</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
anxiety
biofeedback
California
Child
clinical psychology
Comorbidity
Complication
Distress Syndrome
Female
Hospitalization
Hospitalized Child
Human
Ihle EC
Journal Of The American Academy Of Child And Adolescent Psychiatry
Male
March 2018 List
Mental Health
music
Pain
Palliative Therapy
Pet Therapy
PostTraumatic Stress Disorder
psychiatrist
psychosocial care
Socialization
Wellbeing
-
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
March 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jns.2017.08.093" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jns.2017.08.093</a>
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Title
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Neurological palliative care in children
Publisher
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Journal Of The Neurological Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
palliative therapy; adolescent; Adult; Child; chromosome aberration; Controlled Study; Female; Home Care; hospice; Human; Icd-10; infant; major clinical study; Male; metabolic disorder; mortality; neoplasm; nervous system malformation; neurology; preschool child; retrospective study; Statistics
Creator
An entity primarily responsible for making the resource
Fuhrer M
Description
An account of the resource
Background: The Centre for Pediatric Palliative Care at the Medical Center of the University of Munich is one of the largest in Germany. Care is provided yearly to 90-100 children with advanced lifelimiting diseases living at home (at a distance of up to 150 km from the Center) and since 2016 also on a dedicated 8-beds palliative care inpatient unit, the first at a German University Hospital. Objective: Clinical experience suggests an important role of neurological disorders and neurological symptoms in pediatric palliative care. Patients and Methods/Material and Methods: We conducted a retrospective survey of 212 patients (median age 5.7 years, interquartile range [IR] 10.9) followed between 2009-2015 by the specialized pediatric palliative home care (SPPHC) team of the Center. Results * The main ICD-10 groups were nervous system, congenital abnormalities, neoplasia and metabolic disease, reflecting the German mortality statistics for patients 1-20 years. * The cumulative duration of SPPHC was 3.5 months (IR: 7.7). * Seventy-five percent of patients (N=160/212) suffered from neurological problems including neuromuscular conditions (n=17, 8%). Primary neurologic diseases were present in 70 patients. Neurological involvement, often severe, was seen in 96% of patients with metabolic diseases (n=24/25), 60% of patients with congenital/ chromosomal abnormalities (n=39/65), and 53% of tumor patients (n=25/47). * Eighty-four percent of patients died at home, 12% in hospital and 4% in a hospice, with 96% dying at their preferred place. Conclusion This data shows the pivotal importance of neurological diseases and symptoms in pediatric palliative care. Child neurology expertise should therefore be an integral part of any pediatric palliative care team. More research is needed in this area.
2017
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<a href="http://doi.org/10.1016/j.jns.2017.08.093" target="_blank" rel="noreferrer">10.1016/j.jns.2017.08.093</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adolescent
Adult
Child
Chromosome Aberration
Controlled Study
Female
FĂĽhrer M
Home Care
Hospice
Human
Icd-10
Infant
Journal Of The Neurological Sciences
Major Clinical Study
Male
March 2018 List
Metabolic Disorder
Mortality
Neoplasm
nervous system malformation
Neurology
Palliative Therapy
Preschool Child
Retrospective Study
Statistics
-
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Text
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What do transplant physicians think about palliative care? A national survey study
Publisher
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Blood
Date
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2017
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medical oncologist; palliative therapy; Adult; bone marrow; Caregiver; Child; conference abstract; Female; friend; graft recipient; graft versus host reaction; hematologic disease; Hematopoietic stem cell transplantation; Hispanic; hospice; Human; human tissue; Male; outpatient care; patient referral; Perception; Questionnaire; Trust; United States
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El-Jawahri A; LeBlanc TW; Burns LJ; Denzen E; Meyer CL; Mau LW; Roeland EJ; Wood WA; Petersdorf E
Description
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Background: Palliative care (PC) has been shown to improve quality of life, symptom burden, and mood in patients with advanced solid tumors as well as those with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT). Despite these improvements in patientcentered outcomes, PC is under-utilized in the care of patients undergoing HSCT. We hypothesized that this may in part be due to transplant physicians' perceptions and attitudes about PC, which have not been fully elucidated. Methods: We conducted a cross-sectional, web-based survey of transplant physicians who care for patients with hematologic diseases in January-February 2017. Participants were recruited from the American Society for Blood and Marrow Transplantation (ASBMT) membership list. Using a 28-item questionnaire adapted from prior studies of medical oncologists, we examined transplant physicians' 1) access to PC services; 2) perceptions and attitudes about PC; and 3) perceptions of the unmet PC needs of HSCT patients and their caregivers. Results: Of 1005 eligible physicians, 277 transplant physicians completed the questionnaire yielding a response rate of 28%. The majority were white (194/277, 70%), not Hispanic or Latino (194/277, 70%), and male (179/277, 65%). All regions in the United States were represented. Most physicians (179/277, 65%) provided care to adult patients, with 28% (77/277) to pediatric patients and 8% (21/277) to both groups. The majority (159/277, 57%) provided care to both non-HSCT and HSCT patients, with 43% (118/277) to HSCT patients only. Overall, 36% (101/277) had < 10 years of practice, 29% (80/277) had 10-20 years, and 35% (96/277) had > 20 years in practice. Physicians collaborated with PC services more often for inpatient (121/277, 44%) than outpatient care (57/277, 21%). The quality of inpatient and outpatient PC services were considered excellent by 45% (124/77) and 30% (82/277) of physicians, respectively. Only 14% (39/277) reported collaborating often with home hospice services. Most physicians (233/277, 84%) felt that they should coordinate the care of their patients across all stages of disease including at the end of life (EOL). The majority (210/277, 76%) stated that they trust PC clinicians to care for their patients, but 40% (110/277) agreed that PC clinicians do not have enough understanding to counsel their HSCT patients regarding their treatment. Most expressed concerns about how patients perceive PC [Figure 1 and Figure 2]. For example, 82% (227/277) of physicians reported that when patients hear the term PC, they feel scared. In addition, 65% (180/277) reported that if a PC referral is suggested, patients might think nothing more can be done for their disease. The majority of transplant physicians reported that the service name 'palliative care' is a barrier to PC utilization [Figure 3]. However, most physicians recognized substantial unmet PC needs in their population including 1) physical symptoms (56%); 2) graft-versus-host disease symptoms (51%), 3) emotional and psychological needs (71%); 4) spiritual needs (63%); 5) preparing for future medical care (65%); and 6) supporting family and friends (69%). Conclusions: Despite reporting immense PC needs for HSCT patients, transplant physicians have a strong sense of commitment to address these needs. While the majority of respondents reported trusting PC, they also expressed substantial concerns about PC clinicians' knowledge about HSCT. In addition, most transplant physicians were concerned about patients' perception of the term 'palliative care'. Interventions are needed to promote collaboration, improve perceptions, and enhance integration of PC for transplant recipients. (Figure Presented).
2017
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adult
Blood
bone marrow
Burns LJ
Caregiver
Child
conference abstract
Denzen E
El-Jawahri A
Female
friend
Graft Recipient
graft versus host reaction
hematologic disease
Hematopoietic stem cell transplantation
Hispanic
Hospice
Human
Human Tissue
LeBlanc TW
Male
March 2018 List
Mau LW
medical oncologist
Meyer CL
outpatient care
Palliative Therapy
Patient Referral
Perception
Petersdorf E
Questionnaire
Roeland EJ
Trust
United States
Wood WA
-
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Text
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Paediatric palliative care in Denmark should be strengthened
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Ugeskrift For Laeger
Date
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2014
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standards; adolescent; Child; complication; Denmark; Family; Human; infant; neoplasm/ep [Epidemiology]; neoplasm/th [Therapy]; Palliative therapy; Patient Care; preschool child
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Jespersen BA; Clausen N; Sjogren P
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Paediatric palliative care is the total care for the child's body, mind and spirit, and involves support to the family. It begins when a life-threatening disease is diagnosed and depends on an interdisciplinary team approach. In 2013, 295 children under the age of 16 years died in Denmark. Of these, 195 were less than one year old. Most children and their families may prefer death at home if possible. Early planning allows for better integration of home-care services and ensures that death occurs at the place that is best for the child and family.
2014
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2014
Adolescent
Child
Clausen N
Complication
Denmark
Family
Human
Infant
Jespersen BA
March 2018 List
neoplasm/ep [Epidemiology]
neoplasm/th [Therapy]
Palliative Therapy
Patient Care
Preschool Child
Sjogren P
Standards
Ugeskrift For Laeger
-
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<a href="http://doi.org/10.1542/peds.2012-1916" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-1916</a>
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Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care
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Pediatrics
Date
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2013
Subject
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artificial feeding; concept formation; hydration; Terminal Care; Article; Child care; child death; clinical practice; Controlled Study; decision making; Female; Human; Male; parental attitude; personal experience; priority journal; Qualitative Research; quality of life; Religion; satisfaction
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Rapoport A; Shaheed J; Newman C; Rugg M; Steele R
Description
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BACKGROUND AND OBJECTIVE: Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under speci fi c circumstances. However, most of the evidence on FANH involves dying adults. There is a paucity of pediatric evidence to guide health care providers' and parents' decision-making around this practice. Objectives were (1) to explore the experiences of bereaved parents when a decision had been made to FANH during EOL care for their child and (2) to describe the perceived quality of death in these children, as reported by their parents. METHODS: This was a qualitative study using in-depth interviews with parents whose children died after a decision to FANH. Parental perceptions about the experience and their child's quality of death were explored. Interviews were audiotaped and transcribed, then data were analyzed by using interpretive description methodology. RESULTS: All parents were satisfi ed with their decision to FANH and believed that their child's death was generally peaceful and comfortable. The child's perceived poor quality of life was central to the decision to FANH, with feeding intolerance often contributing to this perception. Despite overall satisfaction, all parents had doubts and questions about the decision and benefited from ongoing assurances from the clinical team. CONCLUSIONS: FANH in children at the EOL is an acceptable form of palliation for some parents and may contribute to a death that is perceived to be peaceful and comfortable. In situations in which FANH may be a reasonable possibility, physicians should be prepared to introduce the option. Copyright _ 2013 by the American Academy of Pediatrics.
2013
Identifier
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<a href="http://doi.org/10.1542/peds.2012-1916" target="_blank" rel="noreferrer">10.1542/peds.2012-1916</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).
2013
Article
Artificial Feeding
Child Care
Child Death
Clinical Practice
Concept Formation
Controlled Study
Decision Making
Female
Human
Hydration
Male
March 2018 List
Newman C
Parental Attitude
Pediatrics
Personal Experience
Priority Journal
Qualitative Research
Quality Of Life
Rapoport A
Religion
Rugg M
Satisfaction
Shaheed J
Steele R
Terminal Care
-
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Title
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Text
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URL Address
<a href="http://doi.org/10.1542/peds.2012-0981" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-0981</a>
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Neonatal end-of-life care: A single-center NICU experience in Israel over a decade
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Pediatrics
Date
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2013
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newborn care; newborn mortality; adrenal insufficiency/ep [Epidemiology]; anemia/ep [Epidemiology]; Article; brain edema/ep [Epidemiology]; brain hemorrhage/ep [Epidemiology]; cause of death; child parent relation; congenital malformation/ep [Epidemiology]; gestational age; Human; Incidence; Israel; Jerusalem; kidney failure/ep [Epidemiology]; Medical Decision Making; Middle East; necrotizing enterocolitis/ep [Epidemiology]; Newborn; newborn death; newborn hypoxia/ep [Epidemiology]; Newborn Intensive Care; newborn sepsis/ep [Epidemiology]; practice guideline; prematurity; priority journal; quality of life; Religion; respiratory failure/ep [Epidemiology]; sepsis/ep [Epidemiology]; shock/ep [Epidemiology]; treatment duration
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Eventov-Friedman S; Kanevsky H; Bar-Oz B
Description
An account of the resource
OBJECTIVES: To follow changes in the causes of neonatal deaths in the NICU at Hadassah Medical Center, Jerusalem, Israel, over a decade; to examine trends regarding types of end-of-life-care provided (primary nonintervention, maximal intensive, and redirection of intensive care, including limitation of care and withdrawal of life-sustaining treatment); and to assess the parental role in the decision-making process given that the majority of the population is religious. METHODS: All neonates who died between 2000 and 2009 were identified. The causes and circumstances of death were Abstract: ed from the medical records. Trends in end-of-life decisions were compared between 2 time periods: 2000-2004 versus 2005-2009. RESULTS: Overall, 239 neonates died. The leading cause of death in both study periods was prematurity and its complications (76%). Among term infants, the leading cause of death was congenital anomalies (48%). Fifty-six percent of the infants received maximal intensive care; 28% had redirection of intensive care, of whom 10% had withdrawal of life-sustaining treatment; and 16% had primary nonintervention care. Over the years, maximal intensive care decreased from 65% to 46% (P < .02), whereas redirection of care increased from 19.2% to 37.5% (P < .0005). An active parental role in the end-of-life decision process increased from 38% to 84%. CONCLUSIONS: Even among religious families of extremely sick neonates, redirection of care is a feasible treatment option, suggesting that apart from survival, quality-of-life considerations emerge as an important factor in the decision-making process for the infant, parents, and caregivers.
2013-06
Identifier
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<a href="http://doi.org/10.1542/peds.2012-0981" target="_blank" rel="noreferrer">10.1542/peds.2012-0981</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).
2013
adrenal insufficiency/ep [Epidemiology]
anemia/ep [Epidemiology]
Article
Bar-Oz B
brain edema/ep [Epidemiology]
brain hemorrhage/ep [Epidemiology]
Cause Of Death
Child Parent Relation
congenital malformation/ep [Epidemiology]
Eventov-Friedman S
Gestational Age
Human
Incidence
Israel
Jerusalem
Kanevsky H
kidney failure/ep [Epidemiology]
March 2018 List
Medical Decision Making
Middle East
necrotizing enterocolitis/ep [Epidemiology]
Newborn
Newborn Care
Newborn Death
newborn hypoxia/ep [Epidemiology]
Newborn Intensive Care
newborn mortality
newborn sepsis/ep [Epidemiology]
Pediatrics
Practice Guideline
Prematurity
Priority Journal
Quality Of Life
Religion
respiratory failure/ep [Epidemiology]
sepsis/ep [Epidemiology]
shock/ep [Epidemiology]
treatment duration
-
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Title
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Text
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URL Address
<a href="http://doi.org/10.5546/aap.2018.eng.62" target="_blank" rel="noreferrer">http://doi.org/10.5546/aap.2018.eng.62</a>
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Opioid treatment for mixed pain in pediatric patients assisted by the Palliative Care team. Five years of experience
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Archivos Argentinos De Pediatria
Date
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2018
Subject
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Child; Methadone; Morphine; opioid analgesics; pain
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Yazde Puleio ML; Gomez KV; Majdalani A; Pigliapoco V; Santos Chocler G
Description
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Pain is defined as an unpleasant sensory and emotional experience associated with actual or potential tissue damage. Depending on its pathophysiological mechanism, it may be classified into nociceptive, neuropathic, and mixed pain. If pain is moderate to severe, a strong opioid should be administered and, when this is the case, morphine is the drug of choice. If morphine is ineffective or causes intolerable adverse effects, opioid rotation is recommended. Our objective was to describe the drug management for mixed pain used in patients assisted by the Palliative Care team of Hospital General de Ninos Pedro de Elizalde between August 2011 and September 2015. A total of 72 patients were included. Their mean age was 10.1 years, and the most common underlying disease was cancer. The initial opioid was morphine in 57 cases; 48 patients received adjuvant drugs. Opioid rotation was indicated in half of cases, and the most common switch was from morphine to methadone.
2018-02
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<a href="http://doi.org/10.5546/aap.2018.eng.62" target="_blank" rel="noreferrer">10.5546/aap.2018.eng.62</a>
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2018
Archivos Argentinos De Pediatria
Child
Gomez KV
Majdalani A
March 2018 List
Methadone
Morphine
opioid analgesics
Pain
Pigliapoco V
Santos Chocler G
Yazde Puleio ML
-
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Title
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March 2018 List
Text
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March 2018 List
URL Address
<a href="http://doi.org/10.5546/aap.2018.eng.42" target="_blank" rel="noreferrer">http://doi.org/10.5546/aap.2018.eng.42</a>
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Neonatal mortality and associated factors in newborn infants admitted to a Neonatal Care Unit
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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
2018
Subject
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child mortality; Neonatal mortality; Neonatal respiratory distress syndrome; Perinatal mortality; preterm birth
Creator
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Lona Reyes JC; Perez Ramirez RO; Llamas Ramos L; Gomez Ruiz LM; Benitez Vazquez EA; Rodriguez Patino V
Description
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INTRODUCTION: The increasing survival rate of preterm infants has altered the epidemiology of neonatal diseases; however, neonatal mortality is still the main component of child mortality. The objective of this study was to evaluate neonatal mortality and associated factors in newborn infants admitted to a neonatal care unit. MATERIAL AND METHODS: Prospective cohort study conducted between January 2016 and January 2017 at Hospital Civil de Guadalajara "Dr. Juan I. Menchaca." The incidence of deaths and associated conditions was evaluated using a multivariate logistic regression analysis. RESULTS: A total of 9366 live births were registered; 15% (n: 1410) of these were admitted to the neonatal care unit. The mortality rate was 125.5 per 1000 hospitalized newborn infants (95% confidence interval [CI]: 109-144); the main reasons for admission were congenital malformations or genetic disorders (28.2%), infections (24.9%), and respiratory distress (20.9%). The conditions associated with death were gestational age < 37 weeks (OR: 2.41, 95% CI: 1.49-3.93), birth weight < 1500 grams (OR: 6.30, 95% CI: 4.15-9.55), moderate/severe respiratory distress at 10 minutes (OR: 1.89, 95% CI: 1.24-2.86), Apgar score < 7 at 5 minutes (OR: 9.40, 95% CI: 5.76-15.31), congenital malformations (OR: 5.52, 95% CI: 3.12-9.78), and less than 5 antenatal care visits (OR: 1.51, 95% CI: 1.09-2.08). CONCLUSIONS: Preterm birth, low birth weight, respiratory distress, Apgar score < 7, congenital malformations, and a history of < 5 antenatal care visits were associated with a higher risk for death.
2018-02
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<a href="http://doi.org/10.5546/aap.2018.eng.42" target="_blank" rel="noreferrer">10.5546/aap.2018.eng.42</a>
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2018
Archivos Argentinos De Pediatria
Benitez Vazquez EA
Child Mortality
Gomez Ruiz LM
Llamas Ramos L
Lona Reyes JC
March 2018 List
Neonatal mortality
Neonatal respiratory distress syndrome
Perez Ramirez RO
Perinatal Mortality
preterm birth
Rodriguez Patino V
-
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Title
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March 2018 List
Text
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<a href="http://doi.org/10.1080/15265161.2017.1401157" target="_blank" rel="noreferrer">http://doi.org/10.1080/15265161.2017.1401157</a>
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From "Longshot" to "Fantasy": Obligations to Pediatric Patients and Families When Last-Ditch Medical Efforts Fail
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American Journal Of Bioethics
Date
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2018
Subject
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futility; hope; Intensive Care; Pediatrics
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Weiss EM; Fiester A
Description
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Clinicians at quaternary centers see part of their mission as providing hope when others cannot. They tend to see sicker patients with more complex disease processes. Part of this mission is offering longshot treatment modalities that are unlikely to achieve their stated goal, but conceivably could. When patients embark on such a treatment plan, it may fail. Often treatment toward an initial goal continues beyond the point at which such a goal is feasible. We explore the progression of care from longshot to fantasy using two pediatric cases. This progression may be differentiated into four distinct stages of care related to the potential of achieving the initial goals of care. Physicians are often ill prepared for the progression of treatments from a longshot hope to an unfeasible and, therefore, typically unjustified intervention. We present a structured approach to guide clinicians at referral institutions where these situations may be common. The transition of care from "longshot" to "fantasy" is an inherent part of quaternary care for the sickest of patients that has been underexplored. Physicians are often poorly equipped to approach that transition. We advocate this approach to the shift from longshot to fantasy with the belief that such a structured method will have multiple benefits, including: reduced suffering for the patient; decreased emotional burden on patient and family; decreased provider moral distress; increased likelihood of seeking high quality palliative care earlier; and provision of honest and straightforward information to patients and their families.
2018-01
Identifier
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<a href="http://doi.org/10.1080/15265161.2017.1401157" target="_blank" rel="noreferrer">10.1080/15265161.2017.1401157</a>
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2018
American Journal of Bioethics
Fiester A
Futility
Hope
Intensive Care
March 2018 List
Pediatrics
Weiss EM
-
Dublin Core
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Title
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March 2018 List
Text
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URL Address
<a href="http://doi.org/10.3390/children5020016" target="_blank" rel="noreferrer">http://doi.org/10.3390/children5020016</a>
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A Review of Apps for Calming, Relaxation, and Mindfulness Interventions for Pediatric Palliative Care Patients
Publisher
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Children (basel)
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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Children; Meditation; mobile applications; multimedia; Palliative; relaxation; Stress; technology
Creator
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Weekly T; Walker N; Beck J; Akers S; Weaver M
Description
An account of the resource
Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on app quality assessment or review of these apps for level of engagement, functionality, aesthetics, or applicability for palliative pediatric patients. The pediatric palliative care study team searched smartphone application platforms for apps relevant to calming, relaxation, and mindfulness for pediatric and adolescent patients. Apps were reviewed using a systematic data extraction tool. Validated Mobile Application Rating Scale (MARS) scores were determined by two blinded reviewers. Apps were then characterized by infant, child, adolescent, and adult caregiver group categories. Reviewer discussion resulted in consensus. Sixteen of the 22 apps identified were included in the final analysis. The apps operated on either iOS or Android platforms. All were available in English with four available in Spanish. Apps featured a relaxation approach (12/16), soothing images (8/16), and breathing techniques (8/16). Mood and sleep patterns were the main symptoms targeted by apps. Provision of mobile apps resource summary has the potential to foster pediatric palliative care providers' knowledge of app functionality and applicability as part of ongoing patient care.
2018-01
Identifier
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<a href="http://doi.org/10.3390/children5020016" target="_blank" rel="noreferrer">10.3390/children5020016</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
Akers S
Beck J
Children
Children (Basel)
March 2018 List
Meditation
mobile applications
multimedia
Palliative
relaxation
Stress
Technology
Walker N
Weaver M
Weekly T
-
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Title
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March 2018 List
Text
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March 2018 List
URL Address
<a href="http://doi.org/10.3390/children5010013" target="_blank" rel="noreferrer">http://doi.org/10.3390/children5010013</a>
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Total Pain' in Children with Severe Neurological Impairment
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Children (basel)
Date
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2018
Subject
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cerebral palsy; Chronic Pain; cognitive impairment; neurological impairment; Paediatric palliative care; persistent pain; 'Total Pain'
Creator
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Warlow TA; Hain RDW
Description
An account of the resource
Many children with palliative care needs experience difficulty in managing pain. Perhaps none more so than those with severe neurological impairment. For many years; behaviours in these children were misunderstood. As a result; pain was poorly recognised and inadequately managed. Significant advances have been made in the assessment and management of pain in this challenging group of patients. We summarise these advances; drawing on our own experience working with infants; children and young adults with palliative care needs within a UK tertiary paediatric palliative care service. We expand on the recent understanding of 'Total Pain'; applying a holistic approach to pain assessment and management in children with severe neurological impairment.
2018-01
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<a href="http://doi.org/10.3390/children5010013" target="_blank" rel="noreferrer">10.3390/children5010013</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).
'Total Pain'
2018
Cerebral Palsy
Children (Basel)
Chronic Pain
cognitive impairment
Hain RDW
March 2018 List
neurological impairment
paediatric palliative care
persistent pain
Warlow TA
-
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Title
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March 2018 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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March 2018 List
URL Address
<a href="http://doi.org/10.1111/jpc.13845" target="_blank" rel="noreferrer">http://doi.org/10.1111/jpc.13845</a>
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The Pepi-Pod study: Overnight video, oximetry and thermal environment while using an in-bed sleep device for sudden unexpected death in infancy prevention
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Journal Of Paediatrics And Child Health
Date
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2018
Subject
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bed-sharing; indigenous; physiology; sudden infant death syndrome; temperature
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Tipene-Leach D; Baddock SA; Williams SM; Tangiora A; Jones R; McElnay C; Taylor BJ
Description
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AIM: The aim of this study was to identify the potential risks and benefits of sleeping infants in a Pepi-Pod distributed to families with high risk of sudden unexpected death in infancy compared to a bassinet. METHODS: Forty-five mostly indigenous Maori mothers who were referred by local health providers to receive a Pepi-Pod were surveyed at recruitment, 1 and 3 months. A sleep study at 1 month included infrared video, oximetry and temperature measures. RESULTS: When compared with 89 historical bassinet controls, an intention-to-treat analysis of questionnaires showed no increase in direct bed sharing but demonstrated significantly less sharing of the maternal bedroom at both interviews, with the majority of those not sleeping in the maternal bedroom, actually sleeping in the living room. The 1 month 'as-used' analysis showed poorer maternal sleep quality. The 'as-used' analysis of video data (24 Pepi-Pod and 113 bassinet infants) also showed no increase in direct bed sharing, head covering or prone/side sleep position. Differences in oxygen saturation were not significant, but heart rate was higher in the Pepi-Pod infants by 8.37 bpm (95% confidence interval 4.40, 12.14). Time in the thermal comfort zone was not different between groups despite Pepi-Pod infants being situated in significantly warmer rooms. CONCLUSIONS: Overall, we found that most differences in infant risk behaviours in a Pepi-Pod compared to a bassinet were small, with confidence intervals excluding meaningful differences. We noted poorer maternal sleep quality at 1 month. Higher infant heart rates in the Pepi-Pod group may be related to higher room temperatures. The Pepi-Pod appears physiologically safe but is associated with lower reported maternal sleep quality.
2018-01
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<a href="http://doi.org/10.1111/jpc.13845" target="_blank" rel="noreferrer">10.1111/jpc.13845</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
Baddock SA
bed-sharing
indigenous
Jones R
Journal of Paediatrics and Child Health
March 2018 List
McElnay C
physiology
Sudden Infant Death Syndrome
Tangiora A
Taylor BJ
temperature
Tipene-Leach D
Williams SM
-
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Title
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March 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1017/s1478951517001110" target="_blank" rel="noreferrer">http://doi.org/10.1017/s1478951517001110</a>
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The enactment stage of end-of-life decision-making for children
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Palliative & Supportive Care
Date
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2018
Subject
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end-of-life decision-making; life-limiting illness; paediatrics; Palliative Care; parental support
Creator
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Sullivan JE; Gillam LH; Monagle PT
Description
An account of the resource
OBJECTIVES: Typically pediatric end-of-life decision-making studies have examined the decision-making process, factors, and doctors' and parents' roles. Less attention has focussed on what happens after an end-of-life decision is made; that is, decision enactment and its outcome. This study explored the views and experiences of bereaved parents in end-of-life decision-making for their child. Findings reported relate to parents' experiences of acting on their decision. It is argued that this is one significant stage of the decision-making process. METHODS: A qualitative methodology was used. Semi-structured interviews were conducted with bereaved parents, who had discussed end-of-life decisions for their child who had a life-limiting condition and who had died. Data were thematically analysed. RESULTS: Twenty-five bereaved parents participated. Findings indicate that, despite differences in context, including the child's condition and age, end-of-life decision-making did not end when an end-of-life decision was made. Enacting the decision was the next stage in a process. Time intervals between stages and enactment pathways varied, but the enactment was always distinguishable as a separate stage. Decision enactment involved making further decisions - parents needed to discern the appropriate time to implement their decision to withdraw or withhold life-sustaining medical treatment. Unexpected events, including other people's actions, impacted on parents enacting their decision in the way they had planned. Several parents had to re-implement decisions when their child recovered from serious health issues without medical intervention. Significance of results A novel, critical finding was that parents experienced end-of-life decision-making as a sequence of interconnected stages, the final stage being enactment. The enactment stage involved further decision-making. End-of-life decision-making is better understood as a process rather than a discrete once-off event. The enactment stage has particular emotional and practical implications for parents. Greater understanding of this stage can improve clinician's support for parents as they care for their child.
2018-01
Identifier
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<a href="http://doi.org/10.1017/s1478951517001110" target="_blank" rel="noreferrer">10.1017/s1478951517001110</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
end-of-life decision-making
Gillam LH
life-limiting illness
March 2018 List
Monagle PT
Paediatrics
Palliative & Supportive Care
Palliative Care
parental support
Sullivan JE
-
Dublin Core
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Title
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March 2018 List
Text
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Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2017-314731" target="_blank" rel="noreferrer">http://doi.org/10.1136/archdischild-2017-314731</a>
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Intensive care: because we can or because we should?
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Archives Of Disease In Childhood
Date
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2018
Subject
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Intensive Care; mortality; Palliative Care
Creator
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Pearson GA
Identifier
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<a href="http://doi.org/10.1136/archdischild-2017-314731" target="_blank" rel="noreferrer">10.1136/archdischild-2017-314731</a>
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Description
An account of the resource
2018-01
2018
Archives of Disease in Childhood
Intensive Care
March 2018 List
Mortality
Palliative Care
Pearson GA
-
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Title
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March 2018 List
Text
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Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.1089/lgbt.2017.0157" target="_blank" rel="noreferrer">http://doi.org/10.1089/lgbt.2017.0157</a>
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LGBTQ-Inclusive Hospice and Palliative Care: Transforming Professional Practice
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Lgbt Health
Date
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2018
Creator
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Ng HH
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<a href="http://doi.org/10.1089/lgbt.2017.0157" target="_blank" rel="noreferrer">10.1089/lgbt.2017.0157</a>
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Description
An account of the resource
2018-01
2018
Lgbt Health
March 2018 List
Ng HH
-
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Title
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March 2018 List
Text
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Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.1136/bmjopen-2017-018266" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmjopen-2017-018266</a>
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The journey through care: study protocol for a longitudinal qualitative interview study to investigate the healthcare experiences and preferences of children and young people with life-limiting and life-threatening conditions and their families in the West Midlands, UK
Publisher
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Bmj Open
Date
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2018
Subject
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organisation of health services; Paediatric palliative care; Palliative Care; Qualitative Research
Creator
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Mitchell S; Slowther AM; Coad J; Dale J
Description
An account of the resource
INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their conditions are often complex and highly unpredictable. Palliative care is advocated for people with life-limiting and life-threatening conditions, but these services for children are highly variable in terms of availability and scope. Little is known about the lived experiences and preferences of children and their families in terms of the palliative care that they do, or do not, receive. This study aims to produce an in-depth insight into the experiences and preferences of such children and families in order to develop recommendations for the future provision of services. The study will be carried out in the West Midlands, UK. METHODS AND ANALYSIS: A qualitative study comprising longitudinal interviews over a 12-month period with children (aged 5-18 years) living with life-limiting or life-threatening conditions and their family members. Data analysis will start with thematic analysis, followed by narrative and cross-case analysis to examine changing experiences and preferences over time, at the family level and within the wider healthcare system. Patient and public involvement (PPI) has informed the design and conduct of the study. Findings will be used to develop recommendations for an integrated model of palliative care for children in partnership with the patient and public involvement (PPI) group. ETHICS AND DISSEMINATION: Ethical approval was granted in September 2016 by the National Health Service Health Research Authority (IRAS ID: 196816, REC reference: 16/WM/0272). Findings will be of immediate relevance to healthcare providers, policy-makers, commissioners and voluntary sector organisations in the UK and internationally. Reports will be prepared for these audiences, as well as for children and their families, alongside academic outputs.
2018-01
Identifier
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<a href="http://doi.org/10.1136/bmjopen-2017-018266" target="_blank" rel="noreferrer">10.1136/bmjopen-2017-018266</a>
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2018
Bmj Open
Coad J
Dale J
March 2018 List
Mitchell S
organisation of health services
paediatric palliative care
Palliative Care
Qualitative Research
Slowther AM
-
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Title
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March 2018 List
Text
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March 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909117751419" target="_blank" rel="noreferrer">http://doi.org/10.1177/1049909117751419</a>
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Title
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It's All About Communication: A Mixed-Methods Approach to Collaboration Between Volunteers and Staff in Pediatric Palliative Care
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American Journal Of Hospice & Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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Communication; cooperation; Palliative Care; patient care team; Pediatrics; volunteers
Creator
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Meyer D; Schmidt P; Zernikow B; Wager J
Description
An account of the resource
BACKGROUND: Multidisciplinary teamwork is considered central to pediatric palliative care. Although different studies state that volunteers play an essential role in palliative care, little is known about the collaboration between volunteers and staff. AIM: This study aims to explore and compare the perspectives of volunteers and staff regarding collaboration in a pediatric palliative care unit. DESIGN: A mixed-methods approach was chosen to appropriately reflect the complex aspects of collaboration. SETTING/PARTICIPANTS: Both face-to-face interviews with staff who work together with volunteers and a group discussion with all volunteers were conducted. These were supplemented by 2 questionnaires designed for this study that examined participants' characteristics and their estimation of what information volunteers need before they meet a patient. RESULTS: Nine staff members and 7 volunteers participated in this study. Their ideas of collaboration could be grouped into 3 categories: (i) factual level of collaboration, (ii) relationship level of collaboration, and (iii) overall appraisal of collaboration (suggestions for improvement). CONCLUSION: Communication can be considered a key factor in successful collaboration between volunteers and staff. Because many patients in pediatric palliative care units are not able to communicate verbally, good information flow between volunteers and staff is crucial for ensuring quality patient care. Moreover, communication is the key to establishing a team philosophy by clarifying roles and building relationships between volunteers and staff.
2018-01
Identifier
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<a href="http://doi.org/10.1177/1049909117751419" target="_blank" rel="noreferrer">10.1177/1049909117751419</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
American Journal of Hospice & Palliative Medicine
Communication
Cooperation
March 2018 List
Meyer D
Palliative Care
Patient Care Team
Pediatrics
Schmidt P
Volunteers
Wager J
Zernikow B
-
Dublin Core
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Title
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March 2018 List
Text
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Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.1097/aco.0000000000000570" target="_blank" rel="noreferrer">http://doi.org/10.1097/aco.0000000000000570</a>
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Withdrawal of life-sustaining therapy
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Current Opinion In Anesthesiology
Date
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2018
Creator
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Jericho BG
Description
An account of the resource
PURPOSE OF REVIEW: The aim of this review is to examine literature relating to the withdrawal of life-sustaining therapy (WLST). RECENT FINDINGS: Discussions regarding end-of-life issues in adults and children are not occurring comprehensively. Discussions relating to the WLST in the pediatric population varies by institution and may vary by race, age, health insurance, diagnosis, and severity of illness. Completing advance directives prior to placement of life-sustaining treatments is not consistent practice. With the WLST, differences in perspectives exist between medical specialties, within one specialty at different levels of training, and in physicians' ethical and psychological responses to the WLST. The timing of WLST appears to be influenced by ICU strain and communication issues. Study outcomes differ regarding the functionally favorable survival of patients who have had WLST. Universal guidelines for the WLST may not address individual patient circumstances. SUMMARY: Discussions of end-of-life issues early in the course of a patient's health care will contribute to the healthcare team's understanding and respect of the patient's wishes. This article addresses the withdrawal of left ventricular assist devices; attending physicians and physicians-in-training perspectives of WLST; do physicians distinguish between withholding and WLST; the timing of WLST; guidelines for the process of WLST; and pediatrics and end-of-life decisions.
2018-01
Identifier
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<a href="http://doi.org/10.1097/aco.0000000000000570" target="_blank" rel="noreferrer">10.1097/aco.0000000000000570</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
Current Opinion In Anesthesiology
Jericho BG
March 2018 List
-
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Title
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March 2018 List
Text
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March 2018 List
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<a href="http://doi.org/10.1037/dev0000483" target="_blank" rel="noreferrer">http://doi.org/10.1037/dev0000483</a>
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Title
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Early Parental Loss and Intimate Relationships in Adulthood: A Nationwide Study
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Developmental Psychology
Date
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2018
Creator
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Hoeg BL; Johansen C; Christensen J; Frederiksen K; Dalton SO; Dyregrov A; Boge P; Dencker A; Bidstrup PE
Description
An account of the resource
Being able to form and maintain intimate relationships is an essential part of development and the early loss of a parent may negatively affect this ability. This study investigates the association between parental loss before the age of 18 years and the formation and dissolution of marriage and cohabitation relationships in adulthood, in relation to factors that may help identify potentially vulnerable subgroups of bereaved children, that is, sex of the deceased parent, cause of death and child's age at the time of death. Using data from national registries, we followed all children born in Denmark between 1970 and 1995 (n = 1,525,173) and used Poisson regression models to assess rate ratios by gender for relationship formation and separation according to early parental loss. We stratified the analyses by sex of the deceased parent, cause of death and child's age at the time of death, and adjusted for the confounding effects of parental income, education level, and psychiatric illness. We found that parental loss was associated with a higher rate of relationship formation for young women, but not young men, and higher rates of separation for both men and women. The associations with separation were stronger for persons who lost a parent to suicide than to other causes. The effects were relatively small, a possible testimony to the resilience of developmental processes in most children. However, as long-term relationships are associated with physical and psychological health, interventions for bereaved children and families are important, especially in the subgroup bereaved by suicide. (PsycINFO Database Record
2018-01
Identifier
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<a href="http://doi.org/10.1037/dev0000483" target="_blank" rel="noreferrer">10.1037/dev0000483</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
Bidstrup PE
Boge P
Christensen J
Dalton SO
Dencker A
Developmental Psychology
Dyregrov A
Frederiksen K
Hoeg BL
Johansen C
March 2018 List
-
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Title
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March 2018 List
Text
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Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.1111/bioe.12428" target="_blank" rel="noreferrer">http://doi.org/10.1111/bioe.12428</a>
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Fragile lives with fragile rights: Justice for babies born at the limit of viability
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Bioethics
Date
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2018
Subject
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end-of-life decision-making; gestational age policies; justice; Neonatology
Creator
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Hendriks MJ; Lantos JD
Description
An account of the resource
There is an inconsistency in the ways that doctors make clinical decisions regarding the treatment of babies born extremely prematurely. Many experts now recommend that clinical decisions about the treatment of such babies be individualized and consider many different factors. Nevertheless, many policies and practices throughout Europe and North America still appear to base decisions on gestational age alone or on gestational age as the primary factor that determines whether doctors recommend or even offer life-sustaining neonatal intensive care treatment. These policies are well intentioned. They aim to guide doctors and parents to make decisions that are best for the baby. That is an ethically appropriate goal. But in relying so heavily on gestational age, such policies may actually do the babies a disservice by denying some babies treatment that might be beneficial and lead to intact survival. In this paper, we argue that such policies are unjust to premature babies and ought to be abolished. In their place, we propose individualized treatment decisions for premature babies. This would treat premature babies as we treat all other patients, with clinical decisions based on an individualized estimation of likelihood that treatment would be beneficial.
2018-01
Identifier
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<a href="http://doi.org/10.1111/bioe.12428" target="_blank" rel="noreferrer">10.1111/bioe.12428</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
Bioethics
end-of-life decision-making
gestational age policies
Hendriks MJ
Justice
Lantos JD
March 2018 List
Neonatology
-
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Title
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March 2018 List
Text
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March 2018 List
URL Address
<a href="http://doi.org/10.1080/07481187.2017.1407012" target="_blank" rel="noreferrer">http://doi.org/10.1080/07481187.2017.1407012</a>
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Reflections on the development of a therapeutic recreation-based bereavement camp for families whose child has died from serious illness
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Death Studies
Date
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2018
Subject
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bereavement; Death; Families; serious illness; therapeutic recreation
Creator
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Hanlon P; Guerin S; Kiernan G
Description
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While bereavement camps serve as a support for children, this study examines a therapeutic recreation-based camp for families who have lost a child. The study triangulated documents, researcher reflection and staff interviews to highlight the themes of Searching & Finding, Getting to Know, Finding the Balance and Joining. Developing opportunistically through internal and external factors, the camp's evolution represents a closing of the loop, from supporting families of living children to also supporting the families of children who have died. Understanding the camp's evolution may facilitate other programs by highlighting the challenges in developing the program and the lessons learned.
2018-01
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<a href="http://doi.org/10.1080/07481187.2017.1407012" target="_blank" rel="noreferrer">10.1080/07481187.2017.1407012</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
Bereavement
Death
Death studies
Families
Guerin S
Hanlon P
Kiernan G
March 2018 List
Serious Illness
therapeutic recreation
-
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March 2018 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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March 2018 List
URL Address
<a href="http://doi.org/10.1017/s1047951117002761" target="_blank" rel="noreferrer">http://doi.org/10.1017/s1047951117002761</a>
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A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease
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Cardiology In The Young
Date
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2018
Subject
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Chd; Hypoplastic Left Heart Syndrome; Paediatric palliative care; Parental stress
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Hancock HS; Pituch K; Uzark K; Bhat P; Fifer C; Silveira M; Yu S; Welch S; Donohue J; Lowery R; Aiyagari R
Description
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Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle population may have the same benefit for mothers. In this pilot randomised trial of early palliative care, mothers of infants with prenatal single-ventricle diagnoses completed surveys measuring depression, anxiety, coping, and quality of life at a prenatal visit and neonatal discharge. Infants were randomised to receive early palliative care - structured evaluation, psychosocial/spiritual, and communication support before surgery - or standard care. Among 56 eligible mothers, 40 enrolled and completed baseline surveys; 38 neonates were randomised, 18 early palliative care and 20 standard care; and 34 postnatal surveys were completed. Baseline Beck Depression Inventory-II and State-Trait Anxiety Index scores exceeded normal pregnant sample scores (mean 13.76+/-8.46 versus 7.0+/-5.0 and 46.34+/-12.59 versus 29.8+/-6.35, respectively; p=0.0001); there were no significant differences between study groups. The early palliative care group had a decrease in prenatal to postnatal State-Trait Anxiety Index scores (-7.6 versus 0.3 in standard care, p=0.02), higher postnatal Brief Cope Inventory positive reframing scores (p=0.03), and a positive change in PedsQL Family Impact Module communication and family relationships scores (effect size 0.46 and 0.41, respectively). In conclusion, these data show that mothers of infants with single-ventricle disease experience significant depression and anxiety prenatally. Early palliative care resulted in decreased maternal anxiety, improved maternal positive reframing, and improved communication and family relationships.
2018-01
Identifier
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<a href="http://doi.org/10.1017/s1047951117002761" target="_blank" rel="noreferrer">10.1017/s1047951117002761</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
Aiyagari R
Bhat P
Cardiology In The Young
Chd
Donohue J
Fifer C
Hancock HS
Hypoplastic Left Heart Syndrome
Lowery R
March 2018 List
paediatric palliative care
Parental Stress
Pituch K
Silveira M
Uzark K
Welch S
Yu S
-
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March 2018 List
Text
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March 2018 List
URL Address
<a href="http://doi.org/10.1080/07481187.2017.1370416" target="_blank" rel="noreferrer">http://doi.org/10.1080/07481187.2017.1370416</a>
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Title
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Pathfinders: Promoting healthy adjustment in bereaved children and families
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Death Studies
Date
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2018
Creator
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Griese B; Burns M; Farro SA
Description
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Pathfinders is a 10-session program developed in a community setting to creatively address the diverse needs of bereaved children and families, prevent complications of grief and trauma, and promote healthy adaptation. It is an accessible, grief-focused and trauma-informed family systems model that is theory-driven, research-informed, and grounded in practice-based evidence. Pathfinders incorporates principles central to narrative approaches, with a focus on restorative processes for helping children and families stay on track developmentally. This article outlines the structure, process, and content of Pathfinders, including examples of creative interventions used within the program.
2018-01
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<a href="http://doi.org/10.1080/07481187.2017.1370416" target="_blank" rel="noreferrer">10.1080/07481187.2017.1370416</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
Burns M
Death studies
Farro SA
Griese B
March 2018 List
-
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Title
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March 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1017/s1478951517001067" target="_blank" rel="noreferrer">http://doi.org/10.1017/s1478951517001067</a>
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Title
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The clock: Not a question of time
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Palliative & Supportive Care
Date
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2018
Creator
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Garcia-Salido A; Martino-Alba R
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<a href="http://doi.org/10.1017/s1478951517001067" target="_blank" rel="noreferrer">10.1017/s1478951517001067</a>
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Description
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2018-01
2018
GarcĂa-Salido A
March 2018 List
Martino-Alba R
Palliative & Supportive Care
-
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Title
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March 2018 List
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March 2018 List
URL Address
<a href="http://doi.org/10.1097/pcc.0000000000001440" target="_blank" rel="noreferrer">http://doi.org/10.1097/pcc.0000000000001440</a>
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The Importance of Parental Connectedness and Relationships With Healthcare Professionals in End-of-Life Care in the PICU
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Pediatric Critical Care Medicine
Date
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2018
Creator
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Falkenburg JL; Tibboel D; Ganzevoort RR; Gischler SJ; van Dijk M
Description
An account of the resource
OBJECTIVES: Support from healthcare professionals in a PICU is highly valuable for parents of dying children. The way they care for the patients and their families affects the parents' initial mourning process. This study explores what interaction with hospital staff is meaningful to parents in existential distress when their child is dying in the PICU. DESIGN: Qualitative interview study. SETTING: Level 3 PICU in the Erasmus University Medical Center-Sophia Children's Hospital, Rotterdam, and the Netherlands. SUBJECTS: Thirty-six parents of 20 children who had died in this unit 5 years previously. INTERVENTIONS: Parents participated in audio-recorded interviews in their own homes. The interviews were transcribed and analyzed using qualitative methods. MEASUREMENTS AND MAIN RESULTS: Parents' narratives of their child's end-of-life stage in the PICU bespeak experiences of estrangement, emotional distancing, and loneliness. Significant moments shared with hospital staff that remained valuable even after 5 years primarily involved personal connectedness, reflected in frequent informational updates, personal commitment of professionals, and interpersonal contact with doctors and nurses. CONCLUSIONS: Parents whose children died in the PICU value personal connectedness to doctors and nurses when coping with existential distress. Medical and nursing training programs should raise awareness of parents' need for contact in all interactions but especially in times of crisis and apprehension.
2018-01
Identifier
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<a href="http://doi.org/10.1097/pcc.0000000000001440" target="_blank" rel="noreferrer">10.1097/pcc.0000000000001440</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
Falkenburg JL
Ganzevoort RR
Gischler SJ
March 2018 List
Pediatric Critical Care Medicine
Tibboel D
van Dijk M
-
Dublin Core
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Title
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March 2018 List
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Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.26957" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.26957</a>
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High-risk communication at the time of hospice enrollment: Standardizing pediatric hospital to hospice sign out
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Pediatric Blood & Cancer
Date
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2018
Subject
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end-of-life care; handoff; hospice; Palliative Care; pediatric oncology; sign out
Creator
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Brock KE; Mullaney E
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<a href="http://doi.org/10.1002/pbc.26957" target="_blank" rel="noreferrer">10.1002/pbc.26957</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).
Description
An account of the resource
2018-01
2018
Brock KE
End-of-life Care
handoff
Hospice
March 2018 List
Mullaney E
Palliative Care
Pediatric Blood & Cancer
Pediatric Oncology
sign out