1
40
49
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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April List 2024
URL Address
<a href="http://doi.org/10.1111/apa.17084" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.17084</a>
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Serious news communication between clinicians and parents impacts parents' experiences, decision-making, and clinical care for critically ill neonates
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
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Infant Newborn; Critical Illness; article; human; newborn; quality of life; palliative therapy; health care; parent; interpersonal communication; shared decision making; clinical outcome; neonatal intensive care unit; communication disorder; critically ill patient; decision making; prenatal diagnosis; semi structured interview; conversation; personal experience; purposive sample; clinician
Creator
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Kukora S; Krenz C; DeVries R; Spector-Bagdady K
Description
An account of the resource
Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations rather than engage with empathy.1 Poor communication in the neonatal intensive care unit (NICU) when an infant is critically ill or dies can have deleterious effects on decision-making and long-term parental coping.2 Provision of information is imperative to shared decision-making about clinical therapies or care goals.3 Failure to effectively convey information could lead to decisions that do not align with parents' values, associated with long-term grief, decisional conflict, and regret.4, 5 Additionally, inability of clinicians to listen and engage with parents can lead to mistrust in the care team.3, 6 Parents recall in detail how serious news is delivered even years after hospitalisation,7 and their perceptions of these interactions impact their well-being.4, 7 Despite this, few studies have investigated parents' perspectives on serious news communication in the NICU. In this study, we sought to better characterise the communication problems parents of critically ill infants perceive in the antenatal and neonatal period around serious news conversations and to identify potential clinical care consequences arising from these communication issues...
Identifier
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<a href="http://doi.org/10.1111/apa.17084" target="_blank" rel="noreferrer noopener">10.1111/apa.17084</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Acta Paediatrica
April List 2024
Article
Clinical Outcome
Clinician
communication disorder
Conversation
Critical Illness
Critically Ill Patient
Decision Making
DeVries R
Health Care
Human
Infant Newborn
Interpersonal Communication
Krenz C
Kukora S
Neonatal Intensive Care Unit
Newborn
Palliative Therapy
Parent
Personal Experience
Prenatal Diagnosis
Purposive Sample
Quality Of Life
Semi Structured Interview
shared decision making
Spector-Bagdady K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1111/apa.16981" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.16981</a>
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Finnish children who needed long-term home respiratory support had severe sleep-disordered breathing and complex medical backgrounds
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
Child; child; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; treatment duration; anxiety; comorbidity; Sleep Disorders; tracheostomy; long term care; follow up; Only Child; home care; university hospital; clinical feature; clinical outcome; psychological aspect; central nervous system disease; disease severity; apnea hypopnea index; adolescent; polysomnography; adenotonsillectomy; Down syndrome; infant; onset age; brain tumor; demographics; multidisciplinary team; data analysis software; developmental delay; tonsillectomy; neuromuscular disease; pneumonia; respiratory distress syndrome; craniofacial surgery; asthma; acute respiratory failure; beta adrenergic receptor blocking agent/pv [Special Situation for Pharmacovigilance]; montelukast/pv [Special Situation for Pharmacovigilance]; developmental disorder; aspiration pneumonia/co [Complication]; childhood obesity; continuous positive airway pressure; Finn (citizen); invasive ventilation; noninvasive positive pressure ventilation; sleep apnea syndromes/th [Therapy]; adenoid hypertrophy; angiotensin receptor antagonist/pv [Special Situation for Pharmacovigilance]; automatic positive airway pressure; beta 2 adrenergic receptor stimulating agent/ih [Inhalational Drug Administration]; beta 2 adrenergic receptor stimulating agent/pv [Special Situation for Pharmacovigilance]; brain hypoxia; cardiovascular agent/pv [Special Situation for Pharmacovigilance]; central sleep apnea syndrome/th [Therapy]; choana atresia/su [Surgery]; corticosteroid/ih [Inhalational Drug Administration]; corticosteroid/pv [Special Situation for Pharmacovigilance]; craniofacial malformation; cranioplasty; diaphragm hernia; dipeptidyl carboxypeptidase inhibitor/pv [Special Situation for Pharmacovigilance]; hypoventilation/th [Therapy]; ICD-10; laryngomalacia; Le Fort III osteotomy; lung hypoplasia; mask/am [Adverse Device Effect]; maxilla hypoplasia/co [Complication]; medical device complication/co [Complication]; nasal mask; nose obstruction/co [Complication]; obstructive sleep apnea/th [Therapy]; orthodontic procedure; respiratory care; skin irritation/co [Complication]; Sleep Apnea Syndromes; sleep disorder/co [Complication]; SPSS version 28.00; steroid/pv [Special Situation for Pharmacovigilance]; tonsillotomy
Creator
An entity primarily responsible for making the resource
Jarvela M; Katila M; Eskola V; Makinen R; Mandelin P; Saarenpaa-Heikkila O; Lauhkonen E
Description
An account of the resource
Aim: No studies have described long-term paediatric home respiratory support in Nordic countries. We examined the clinical characteristics and long-term outcomes of paediatric patients who received continuous positive airway pressure, non-invasive-positive-pressure ventilation and invasive ventilation from a multidisciplinary home respiratory support team. Methods: Retrospective tertiary-level data were collected between 1 January 2010 and 31 December 2020 in Tampere University Hospital. These comprised patient demographics, treatment course and polysomnography-confirmed sleep-disordered breathing (SDB). Results: There were 93 patients (63.4% boys). The median age at treatment initiation was 8.4 (range 0.11-16.9) years. The patients had: neuromuscular disease (16.1%), central nervous system disease (14.0%), developmental disabilities and congenital syndrome (29.0%), lung-airway conditions (11.8%), craniofacial syndrome (15.1%) and severe obesity (14.0%). More than two-thirds had severe SDB (66.7%) and the most common one was obstructive sleep apnoea in 66.7%. We found that 92.5% received long-term therapy for more than 3 months and the mean treatment duration was 3.3 ± 2.7 years. A non-invasive mask interface was used in 94.7% of cases and 5.3% needed tracheostomy ventilation. More than a quarter (26.7%) achieved disease resolution during the study period. Conclusion: Most children who needed long-term home respiratory support had complex conditions and severe, persistent SDB.
Identifier
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<a href="http://doi.org/10.1111/apa.16981" target="_blank" rel="noreferrer noopener">10.1111/apa.16981</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Acta Paediatrica
acute respiratory failure
adenoid hypertrophy
adenotonsillectomy
Adolescent
angiotensin receptor antagonist/pv [Special Situation for Pharmacovigilance]
anxiety
apnea hypopnea index
April List 2024
Article
aspiration pneumonia/co [Complication]
Asthma
automatic positive airway pressure
beta 2 adrenergic receptor stimulating agent/ih [Inhalational Drug Administration]
beta 2 adrenergic receptor stimulating agent/pv [Special Situation for Pharmacovigilance]
beta adrenergic receptor blocking agent/pv [Special Situation for Pharmacovigilance]
brain hypoxia
Brain Tumor
cardiovascular agent/pv [Special Situation for Pharmacovigilance]
central nervous system disease
central sleep apnea syndrome/th [Therapy]
Child
childhood obesity
choana atresia/su [Surgery]
Clinical Feature
Clinical Outcome
Cohort Analysis
Comorbidity
Continuous Positive Airway Pressure
Controlled Study
corticosteroid/ih [Inhalational Drug Administration]
corticosteroid/pv [Special Situation for Pharmacovigilance]
craniofacial malformation
craniofacial surgery
cranioplasty
Data Analysis Software
Demographics
Developmental delay
developmental disorder
diaphragm hernia
dipeptidyl carboxypeptidase inhibitor/pv [Special Situation for Pharmacovigilance]
Disease Severity
Down Syndrome
Eskola V
Female
Finn (citizen)
Follow Up
Home Care
Human
hypoventilation/th [Therapy]
Icd-10
Infant
invasive ventilation
Jarvela M
Katila M
laryngomalacia
Lauhkonen E
Le Fort III osteotomy
Long Term Care
lung hypoplasia
Major Clinical Study
Makinen R
Male
Mandelin P
mask/am [Adverse Device Effect]
maxilla hypoplasia/co [Complication]
medical device complication/co [Complication]
montelukast/pv [Special Situation for Pharmacovigilance]
Multidisciplinary team
nasal mask
Neuromuscular Disease
noninvasive positive pressure ventilation
nose obstruction/co [Complication]
obstructive sleep apnea/th [Therapy]
Only Child
onset age
orthodontic procedure
Palliative Therapy
Pneumonia
Polysomnography
psychological aspect
respiratory care
Respiratory Distress Syndrome
Retrospective Study
Saarenpaa-Heikkila O
skin irritation/co [Complication]
Sleep Apnea Syndromes
Sleep Apnea Syndromes/th [Therapy]
sleep disorder/co [Complication]
Sleep Disorders
SPSS version 28.00
steroid/pv [Special Situation for Pharmacovigilance]
Tonsillectomy
tonsillotomy
Tracheostomy
treatment duration
University Hospital
-
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Title
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March 2024 List
Text
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March List 2024
URL Address
<a href="http://doi.org/10.1111/apa.17109" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.17109</a>
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Title
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Parents' experiences of palliative care decision-making in neonatal intensive care units: An interpretative phenomenological analysis
Publisher
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Acta Paediatrica
Date
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2024
Subject
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decision making; medical ethics; neonatal intensive care unit; newborn intensive care; palliative therapy; parent; qualitative research; ambivalence; article; clinical article; father; female; human; Infant Newborn; Intensive Care Units; interview; life sustaining treatment; male; meaning-making; shared decision making
Creator
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SaintDenny K; Lamore K; Nandrino JL; Rethore S; Prieur C; Mur S; Storme L
Description
An account of the resource
Aim: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn. Methods: Audio-recorded face-to-face interviews were led and analysed using interpretative phenomenological analysis. Eight families (seven mothers and five fathers) whose baby underwent withholding and/or withdrawing of life-sustaining treatment in three neonatal intensive care units from two regions in France were included. Results: The findings reveal two paradoxes within the meaning-making process of parents: role ambivalence and choice ambiguity. We contend that these paradoxes, along with the need to mitigate uncertainty, form protective psychological mechanisms that enable parents to cope with the decision, maintain their parental identity and prevent decisional regret. Conclusion: Role ambivalence and choice ambiguity should be considered when shared decision-making in the neonatal intensive care unit. Recognising and addressing these paradoxical beliefs is essential for informing parent support practices and professional recommendations, as well as add to ethical discussions pertaining to parental autonomy and physicians' rapport to uncertainty.
Identifier
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<a href="http://doi.org/10.1111/apa.17109" target="_blank" rel="noreferrer noopener">10.1111/apa.17109</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Acta Paediatrica
ambivalence
Article
Clinical Article
Decision Making
Father
Female
Human
Infant Newborn
Intensive Care Units
Interview
Lamore K
Life Sustaining Treatment
Male
March List 2024
meaning-making
Medical Ethics
Mur S
Nandrino JL
Neonatal Intensive Care Unit
Newborn Intensive Care
Palliative Therapy
Parent
Prieur C
Qualitative Research
Rethore S
SaintDenny K
shared decision making
Storme L
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April List 2023
URL Address
<a href="http://doi.org/10.1111/apa.16716" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.16716</a>
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A Grounded Theory Study on the Dynamics of Parental Grief during the Children's End of Life
Publisher
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Acta Paediatrica
Date
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2023
Subject
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Child; loss; end of life; Only Child; palliative; bereavement; coping with grief
Creator
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Kochen EM; Grootenhuis MA; Teunissen Sccm; Boelen PA; Tataranno ML; Fahner JC; de Jonge RR; Houben ML; Kars MC
Description
An account of the resource
AIM: Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life. METHODS: A grounded theory study was performed, using semi-structured interviews with parents during the child's end of life and recently bereaved parents. Data were collected in four children's university hospitals and paediatric homecare services between October 2020 and December 2021. A multidisciplinary team conducted the analysis. RESULTS: In total, 38 parents of 22 children participated. Parents strived to sustain family life, to be a good parent and to ensure a full life for their child. Meanwhile parents' grief increased because of their hypervigilance towards signs of loss. Parents' coping with grief is characterised by an interplay of downregulating grief and connecting with grief, aimed at creating emotional space to be present and connect with their child. Parents connected with grief when it was forced upon them or when they momentarily allowed themselves to. CONCLUSION: The parents' ability to engage with grief becomes strained during the end of life. Healthcare professionals should support parents in their search for a balance that facilitates creating emotional space.
Identifier
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<a href="http://doi.org/10.1111/apa.16716" target="_blank" rel="noreferrer noopener">10.1111/apa.16716</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Acta Paediatrica
April List 2023
Bereavement
Boelen PA
Child
coping with grief
de Jonge RR
End Of Life
Fahner JC
Grootenhuis MA
Houben ML
Kars MC
Kochen EM
Loss
Only Child
Palliative
Tataranno ML
Teunissen SCCM
-
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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2021 Special Edition 2 - Oncology
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
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1111/apa.15415" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.15415</a>
Dublin Core
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Title
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Customised Pediatric Palliative Care: Integrating Oncological and Palliative Care Priorities
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Oncology, intensive care unit; child; human; controlled study; female; hospice; male; cohort analysis; article; prognosis; cancer therapy; clinical article; human tissue; cancer patient; cancer prognosis; central nervous system tumor; phase 1 clinical trial (topic); Childhood cancer; cancer staging; Palliative therapy; sarcoma
Creator
An entity primarily responsible for making the resource
Podda M; Schiavello E; Visconti G; Clerici CA; Armiraglio M; Casiraghi G; Ambroset S; Grossi A; Rizzi B; Lonati G; Massimino M
Description
An account of the resource
Aim: To describe the experience involving the early introduction of palliative care (PC) in oncological patients treated within the paediatric oncology unit of the Istituto Nazionale Tumori of Milan and compare this cohort with a cohort of patients resident in the same area treated before the introduction of early palliative care. Method(s): A virtual team was assembled in 2015. The PC providers operate outside the hospital. Conference calls were scheduled to discuss patients' problems. This sample was compared with the clinical records of patients residing in the same area who died between 2009 and 2014. Result(s): Between January 2015 and April 2019, 41 patients residing in the Milan area mainly with CNS tumours or sarcomas were referred to the team. Comparing the results with the previous cohort, there was a rise in the number of patients dying at home or in a hospice and the duration of PC increased over time. From 2015, none of the patients died in an intensive care unit. Conclusion(s): Patients managed by the virtual team were able to continue their cancer treatments, take part in Phase I trials and receive PC. All patients with a poor prognosis should have PC at an early stage. Copyright © 2020 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd
Identifier
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<a href="http://doi.org/10.1111/apa.15415" target="_blank" rel="noreferrer noopener">10.1111/apa.15415</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
2021 Special Edition - Oncology
Acta Paediatrica
Ambroset S
Armiraglio M
Casiraghi G
Clerici CA
Grossi A
Lonati G
Massimino M
Oncology
Podda M
Rizzi B
Schiavello E
Visconti G
-
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 2023 List
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March List 2023
URL Address
<a href="http://doi.org/10.1111/apa.16663" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.16663</a>
Dublin Core
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International Project on Troublesome Symptoms in Paediatric Palliative Care Will Focus on Neuro-Irritability, Dystonia and Sleep Disorders
Publisher
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Acta Paediatrica
Date
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2023
Subject
The topic of the resource
Dystonia; Palliative Care; Sleep Disorders
Creator
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Avagnina I; Giacomelli L; Mercante A; Benini F
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<a href="http://doi.org/10.1111/apa.16663" target="_blank" rel="noreferrer noopener">10.1111/apa.16663</a>
Description
An account of the resource
The World Health Organization describes paediatric palliative care (PPC) as the active total care of the child's body, mind and spirit and supporting their family.1 It should be established as early as possible and continued along the entire disease trajectory.2 Advances in medical care for children with life-limiting or life-threatening diseases mean that PPC plans can last for years and may change according to the disease progression, the child's development and the evolution of symptoms.2 [...]
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Acta Paediatrica
Avagnina I
Benini F
Dystonia
Giacomelli L
March List 2023
Mercante A
Palliative Care
Sleep Disorders
-
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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Special Edition #2 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Special Edition #2
URL Address
<a href="http://doi.org/10.1111/apa.15429" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.15429</a>
Dublin Core
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Title
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Palliative and end of life care for a child: understanding parents' coping strategies
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
child; coping; end of life; parent
Creator
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Darlington AS; Randall D; Leppard L; Koh M
Description
An account of the resource
AIM: Understanding of coping strategies that parents use before the death of their child is crucial, and will enable us to best provide support. The current study aimed to explore parents' coping strategies, and map these onto an existing theoretical framework. METHODS: Bereaved parents and parents of a child with a life-limiting/threatening condition were interviewed to investigate coping strategies, recruited through Intensive Care Units (2 Neonatal, 2 Paediatric, 1 Paediatric Cardiac), and a children's hospice. Analysis focused on coping strategies, and mapping these onto the framework. RESULTS: 24 parents of 20 children were interviewed, and identified Parents use a variety of coping strategies (n=25) such as humour, staying positive, advocating and staying strong for others, expressing emotions and preparing, while also living life to the full, supported by others. The themes were successfully mapped onto the theoretical framework, which focuses on the constructs of approach and avoidance, as well as coping for self and others. CONCLUSION: The findings have provided a detailed account of the breadth and depth of coping strategies parents use, including those classed as avoidance. The strategies were successfully mapped onto the theoretical framework. Future research should investigate changes over times, and associations to negative long-term outcomes.
Identifier
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<a href="http://doi.org/10.1111/apa.15429" target="_blank" rel="noreferrer noopener">10.1111/apa.15429</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
2022 Special Edition 2 - Parent Perspectives
Acta Paediatrica
Child
Coping
Darlington AS
End Of Life
Koh M
Leppard L
Parent
Randall D
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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March 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2022 List
URL Address
<a href="http://doi.org/10.1111/apa.16250" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.16250</a>
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What hinders and helps in the end-of-life decision-making process for children: Parents' and physicians' views
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
ethics; decision-making; paediatrics; communication; end-of-life decisions
Creator
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Zaal-Schuller IH; Geurtzen R; Willems D; de Vos MA; Hogeveen M
Description
An account of the resource
AIM: To investigate the main factors which facilitate or hinder end-of-life decision-making (EoLDM) in neonates and children. METHODS: A qualitative inductive, thematic analysis was performed of interviews with a total of 73 parents and 71 physicians. The end-of-life decisions mainly concern decisions to withhold or withdraw life-sustaining treatment. RESULTS: The importance of taking sufficient time and exchanging clear, neutral and relevant information was main facilitators expressed by both parents and physicians. Lack of time, uncertain information and changing doctors were seen as important barriers by both parties. Most facilitators and barriers could be seen as two sides of the same coin, but not always. For example, some parents and physicians considered the fact that parents hold strong opinions as a barrier while others considered this a facilitator. Furthermore, parents and physicians showed differences. Parents especially underlined the importance of physician-related facilitators, such as a personalised approach, empathy and trust. On the contrary, physicians underlined the importance of the child's visible deterioration and parents' awareness of the seriousness of their child's condition and prognosis as facilitators of EoLDM. CONCLUSIONS: This study gained insight into what parents and physicians experience as the main barriers and facilitators in EoLDM for neonates and children.
Identifier
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<a href="http://doi.org/10.1111/apa.16250" target="_blank" rel="noreferrer noopener">10.1111/apa.16250</a>
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2022
Acta Paediatrica
Communication
de Vos MA
Decision-making
End-of-life Decisions
Ethics
Geurtzen R
Hogeveen M
March 2022 List
Paediatrics
Willems D
Zaal-Schuller IH
-
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<a href="http://doi.org/10.1111/apa.16248" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.16248</a>
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Insight into the content of and experiences with follow-up conversations with bereaved parents in paediatrics: A systematic review
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Acta Paediatrica
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2022
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follow-up; end-of-life; paediatrics; parents; bereavement
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van Kempen MM; Kochen EM; Kars MC
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AIM: A follow-up conversation with bereaved parents is a relatively well-established intervention in paediatric clinical practice. Yet, the content and value of these conversations remain unclear. This review aims to provide insight into the content of follow-up conversations between bereaved parents and regular healthcare professionals (HCPs) in paediatrics and how parents and HCPs experience these conversations. METHODS: Systematic literature review using the methods PALETTE and PRISMA. The search was conducted in PubMed and CINAHL on 3 February 2021. The results were extracted and integrated using thematic analysis. RESULTS: Ten articles were included. This review revealed that follow-up conversations are built around three key elements: (1) gaining information, (2) receiving emotional support and (3) facilitating parents to provide feedback. In addition, this review showed that the vast majority of parents and HCPs experienced follow-up conversations as meaningful and beneficial for several reasons. CONCLUSION: An understanding of what parents and HCPs value in follow-up conversations aids HCPs in conducting follow-up conversations and improves care for bereaved parents by enhancing the HCPs' understanding of parental needs.
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<a href="http://doi.org/10.1111/apa.16248" target="_blank" rel="noreferrer noopener">10.1111/apa.16248</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Acta Paediatrica
Bereavement
end-of-life
Follow-up
Kars MC
Kochen EM
March 2022 List
Paediatrics
Parents
van Kempen MM
-
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February 2022 List
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February 2022 List
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<a href="http://doi.org/10.1111/apa.16235" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.16235</a>
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Provider concordance regarding elements of goals-of-care discussions in neonatal intensive care
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Acta Paediatrica
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2021
Subject
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end of life; neonatal; palliative care; provider perspectives
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Guttmann K; Liu B; Kelley A
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Clinicians may struggle to discuss goals of care with parents in the Neonatal Intensive Care Unit (NICU) and may view key elements of such conversations differently. We previously described the relationship between components of goals-of-care discussions and change in moral distress following goals-of-care discussions.1 With the analysis described here, we sought to determine how providers who participated in the same goals-of-care discussion viewed key discussion elements in comparison with other provider participants. Understanding differences and concordance in perceptions may help to (1) understand the quality of goals-of-care discussions, (2) improve metrics of communication quality and (3) inform the development of targeted interventions to improve communication quality.
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<a href="http://doi.org/10.1111/apa.16235" target="_blank" rel="noreferrer noopener">10.1111/apa.16235</a>
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2021
Acta Paediatrica
End Of Life
February 2022 List
Guttmann K
Kelley A
Liu B
Neonatal
Palliative Care
provider perspectives
-
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Title
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July 2021 List
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July 2021 List
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<a href="http://doi.org/10.1111/apa.15061" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.15061</a>
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Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Child; Surveys and Questionnaires; Communication; Parents; communication; Pediatricians; paediatric palliative care; Advance Care Planning; shared decision-making
Creator
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Fahner JC; Rietjens JAC; van der Heide A; van Delden JJM; Kars MC
Description
An account of the resource
AIM: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. METHODS: Paediatricians from five Dutch university hospitals and the national oncology centre completed a survey during May to September 2017, which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general. RESULTS: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n = 39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60%, it was stated that ACP has to result in a documented code status. CONCLUSION: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment.
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<a href="http://doi.org/10.1111/apa.15061" target="_blank" rel="noreferrer noopener">10.1111/apa.15061</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Acta Paediatrica
Advance Care Planning
Child
Communication
Fahner JC
July 2021 List
Kars MC
paediatric palliative care
Parents
Pediatricians
Rietjens JAC
Shared Decision-making
Surveys And Questionnaires
van Delden JJM
van der Heide A
-
Dublin Core
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July 2021 List
Text
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July 2021 List
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<a href="http://doi.org/10.1111/apa.14797" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.14797</a>
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Neonatologists and neonatal nurses have positive attitudes towards perinatal end-of-life decisions, a nationwide survey
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Acta Paediatrica
Date
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2020
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Surveys and Questionnaires; Newborn Infant; Pregnancy; Attitude of Health Personnel; Decision Making; Belgium; Terminal Care; Perinatal death; End-of-life decisions; Death; Termination of pregnancy; Neonatologists; Optimism; Attitude questionnaire; Attitudes of neonatologists and neonatal nurses; Neonatal Nurses
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Dombrecht L; Deliens L; Chambaere K; Baes S; Cools F; Goossens L; Naulaers G; Roets E; Piette V; Cohen J; Beernaert K
Description
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AIM: Perinatal death is often preceded by an end-of-life decision (ELD). Disparate hospital policies, complex legal frameworks and ethically difficult cases make attitudes important. This study investigated attitudes of neonatologists and nurses towards perinatal ELDs. METHODS: A survey was handed out to all neonatologists and neonatal nurses in all eight neonatal intensive care units in Flanders, Belgium in May 2017. Respondents indicated agreement with statements regarding perinatal ELDs on a Likert-scale and sent back questionnaires via mail. RESULTS: The response rate was 49.5% (302/610). Most neonatologists and nurses found nontreatment decisions such as withholding or withdrawing treatment acceptable (90-100%). Termination of pregnancy when the foetus is viable in cases of severe or lethal foetal problems was considered highly acceptable in both groups (80-98%). Physicians and nurses do not find different ELDs equally acceptable, e.g. nurses more often than physicians (74% vs 60%, p = 0.017) agree that it is acceptable in certain cases to administer medication with the explicit intention of hastening death. CONCLUSION: There was considerable support for both prenatal and neonatal ELDs, even for decisions that currently fall outside the Belgian legal framework. Differences between neonatologists' and nurses' attitudes indicate that both opinions should be heard during ELD-making.
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<a href="http://doi.org/10.1111/apa.14797" target="_blank" rel="noreferrer noopener">10.1111/apa.14797</a>
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2020
Acta Paediatrica
Attitude Of Health Personnel
Attitude questionnaire
Attitudes of neonatologists and neonatal nurses
Baes S
Beernaert K
Belgium
Chambaere K
Cohen J
Cools F
Death
Decision Making
Deliens L
Dombrecht L
End-of-life Decisions
Goossens L
July 2021 List
Naulaers G
Neonatal Nurses
Neonatologists
Newborn Infant
Optimism
Perinatal Death
Piette V
Pregnancy
Roets E
Surveys And Questionnaires
Terminal Care
Termination of pregnancy
-
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Title
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April 2021 List
Text
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April 2021 List
URL Address
<a href="http://doi.org/10.1111/apa.15713" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.15713</a>
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Disparities in intensity of treatment at end-of-life among children according to the underlying cause of death
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Acta Paediatrica
Date
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2021
Subject
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children; palliative care; end-of-life; place of death; treatment intensity
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Wolff S; Christiansen CF; Johnsen SP; Schroeder S; Darlington AS; Neergaard MA
Description
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Aim: To compare indicators of high-intensity treatment at end-of-life (HI-EOL) among children according to causes of death. Method(s): We conducted a nationwide registry study in Denmark among 938 children of 1-17 years of age who died from natural causes from 2006 to 2016. We identified and compared indicators of HI-EOL within the last month of life across diagnoses. Indicators were hospital admissions, days in hospital, intensive care unit admission, mechanical ventilation, and hospital death. Result(s): Proportions of each indicator of HI-EOL ranged from 27% to 75%. The most common indicators were hospital death (75%) and ICU admission (39%). Compared to children with solid tumours, children with non-cancerous conditions had an adjusted odds ratio of 3.5 (95% CI 2.1-5.9) of having >=3 indicators of HI-EOL within the last month of life and children with haematological cancer had an odds ratio of 11.8 (95% CI 6.1-23.0). Conclusion(s): The underlying diagnosis was strongly associated with HI-EOL. Children who died from solid tumours experienced substantially less intensive treatment than both children with haematological cancer and non-cancerous conditions did. Across non-cancerous diagnoses, the intensity of treatment appeared consistent, which may indicate, that the awareness of palliative care is higher among oncologists than within other paediatric fields. Copyright ©2020 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd
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<a href="http://doi.org/10.1111/apa.15713" target="_blank" rel="noreferrer noopener">10.1111/apa.15713</a>
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2021
Acta Paediatrica
April 2021 List
Children
Christiansen CF
Darlington AS
end-of-life
Johnsen SP
Neergaard MA
Palliative Care
Place Of Death
Schroeder S
treatment intensity
Wolff S
-
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April 2021 List
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April 2021 List
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<a href="http://doi.org/10.1111/apa.15828" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.15828</a>
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Swiss neonatal caregivers express diverging views on parental involvement in shared decision-making for extremely premature infants
Publisher
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Acta Paediatrica
Date
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2021
Subject
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shared decision-making; attitudes; extremely premature infants; neonatal healthcare professionals; parental authority
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Fauchère JC; Klein SD; Hendriks MJ; Baumann-Hölzle R; Berger TMB; Bucher HU
Description
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AIM: Due to scarce available national data, this study assessed current attitudes of neonatal caregivers regarding decisions on life-sustaining interventions, and their views on parents' aptitude to express their infant's best interest in shared decision-making. METHODS: Self-administered web-based quantitative empirical survey. All 552 experienced neonatal physicians and nurses from all Swiss NICUs were eligible. RESULTS: There was a high degree of agreement between physicians and nurses (response rates 79% and 70%, respectively) that the ability for social interactions was a minimal criterion for an acceptable quality of life. A majority stated that the parents' interests are as important as the child's best interest in shared decision-making. Only a minority considered the parents as the best judges of what is their child's best interest. Significant differences in attitudes and values emerged between neonatal physicians and nurses. The language area was very strongly associated with the attitudes of neonatal caregivers. CONCLUSION: Despite clear legal requirements and societal expectations for shared decision-making, survey respondents demonstrated a gap between their expressed commitment to shared decision-making and their view on parental aptitude to formulate their infant's best interest. National guidelines need to address these barriers to shared decision-making to promote a more uniform nationwide practice.
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<a href="http://doi.org/10.1111/apa.15828" target="_blank" rel="noreferrer noopener">10.1111/apa.15828</a>
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2021
Acta Paediatrica
April 2021 List
Attitudes
Baumann-Hölzle R
Berger TMB
Bucher HU
extremely premature infants
Fauchère JC
Hendriks MJ
Klein SD
neonatal healthcare professionals
parental authority
Shared Decision-making
-
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Title
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January 2021 List
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January 2021 List
URL Address
<a href="http://doi.org/10.1111/apa.15681" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.15681</a>
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No impact of previous evidence advocating openness to talk to children about their imminent death
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Acta Paediatrica
Date
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2020
Subject
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Communication; palliative care; child death; imminent death; psychological morbidity
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Kreicbergs U; Pohlkamp L; Sveen J
Description
An account of the resource
Communication is as important as the drug and the knife in medical care, particularly when patients are facing life-threatening conditions. However, the ability to communicate effectively has been commonly associated with strong emotional barriers among healthcare professionals and family members. Studies that have focused on paediatric oncology have showed that openness about the transition from curative to palliative care is frequently avoided (1,2). As long ago as the 1980s a paper in this journal reported that children often wanted to share their thoughts and feelings at the end of life, but that adults often failed to recognise that need (3).
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<a href="http://doi.org/10.1111/apa.15681" target="_blank" rel="noreferrer noopener">10.1111/apa.15681</a>
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2020
Acta Paediatrica
Child Death
Communication
Imminent Death
January 2021 List
Kreicbergs U
Palliative Care
Pohlkamp L
psychological morbidity
Sveen J
-
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Title
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August 2020 List
Text
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Citation List Month
August 2020 List
URL Address
<a href="http://doi.org/10.1111/apa.15429" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.15429</a>
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Title
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Palliative and end of life care for a child: understanding parents' coping strategies
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Acta Paediatrica
Date
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2020
Subject
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child; coping; end of life; parent
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Darlington A S; Randall D; Leppard L; Koh M
Description
An account of the resource
AIM: Understanding of coping strategies that parents use before the death of their child is crucial, and will enable us to best provide support. The current study aimed to explore parents' coping strategies, and map these onto an existing theoretical framework. METHODS: Bereaved parents and parents of a child with a life-limiting/threatening condition were interviewed to investigate coping strategies, recruited through Intensive Care Units (2 Neonatal, 2 Paediatric, 1 Paediatric Cardiac), and a children's hospice. Analysis focused on coping strategies, and mapping these onto the framework. RESULTS: 24 parents of 20 children were interviewed, and identified Parents use a variety of coping strategies (n=25) such as humour, staying positive, advocating and staying strong for others, expressing emotions and preparing, while also living life to the full, supported by others. The themes were successfully mapped onto the theoretical framework, which focuses on the constructs of approach and avoidance, as well as coping for self and others. CONCLUSION: The findings have provided a detailed account of the breadth and depth of coping strategies parents use, including those classed as avoidance. The strategies were successfully mapped onto the theoretical framework. Future research should investigate changes over times, and associations to negative long-term outcomes.
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<a href="http://doi.org/10.1111/apa.15429" target="_blank" rel="noreferrer noopener">10.1111/apa.15429</a>
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2020
Acta Paediatrica
August 2020 List
Child
Coping
Darlington A S
End Of Life
Koh M
Leppard L
Parent
Randall D
-
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Title
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July 2020 List
Text
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Citation List Month
July 2020 List
URL Address
<a href="http://doi.org/10.1111/apa.15370" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.15370</a>
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Evaluation showed that stakeholders valued the support provided by the Implementing Pediatric Advance Care Planning Toolkit
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Advance care planning; care goals; communication; decision-making; life-limiting conditions
Creator
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Fahner J; Rietjens J; van der Heide A; Milota M; van Delden J; Kars M
Description
An account of the resource
AIM: This study described the development, and pilot evaluation, of the Implementing Pediatric Advance Care Planning Toolkit (IMPACT). METHODS: Key elements of paediatric advance care planning (ACP) were defined using a systematic review, a survey of 168 paediatricians and qualitative studies of 13 children with life-limiting conditions, 20 parents and 18 paediatricians. Participants were purposively recruited from six Dutch university hospitals during September 2016 and November 2018. Key elements were translated into intervention components guided by theory. The acceptability of the content was evaluated by a qualitative pilot study during February and September 2019. This focused on 27 children with life-limiting conditions from hospitals, a hospice and home care, together with 41 parents, 11 physicians and seven nurses who cared for them. RESULTS: IMPACT provided a holistic, caring approach to ACP, gave children a voice and cared for their parents. It provided information on ACP for families and clinicians, manuals to structure ACP conversations and training for clinicians in communication skills and supportive attitudes. The 53 pilot study participants felt that IMPACT was appropriate for paediatric ACP. CONCLUSION: IMPACT was an appropriate intervention that supported a holistic approach towards paediatric ACP, focused on the child's perspective and provided care for their parents.
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<a href="http://doi.org/10.1111/apa.15370" target="_blank" rel="noreferrer noopener">10.1111/apa.15370</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Acta Paediatrica
Advance Care Planning
care goals
Communication
Decision-making
Fahner J
July 2020 List
Kars M
Life-limiting Conditions
Milota M
Rietjens J
van Delden J
van der Heide A
-
Dublin Core
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Title
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May 2020 List
Text
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Citation List Month
May 2020 List
URL Address
<a href="http://doi.org/10.1111/apa.14969" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.14969</a>
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Paediatric palliative care in practice: Perspectives between acute and long-term healthcare teams
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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clinical ethics; continuity of care; paediatric palliative care; quality of care
Creator
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Côté A; Payot A; Gaucher N
Description
An account of the resource
AIM: To explore and compare acute and long-term care professionals' perspectives about paediatric palliative care. METHODS: Focus group interviews were conducted in 2016-2017 with professionals from acute (Emergency Department, Intensive Care Unit) and long-term care (Complex Care Service, Palliative Care) teams. RESULTS: Fifty-eight participants were enrolled. Palliative care definitions were similar throughout groups: to provide active care early in the illness, focusing on the child as a whole and supporting families. Each group perceived a different role in the patient's illness trajectory, reflecting their own culture of care. They demonstrated important differences in their approach to palliative care. Disagreements regarding when or how to discuss goals of care were expressed. Acute care professionals reported discomfort when having to introduce these discussions for the first time, while long-term care professionals perceived negative judgements about their patients' quality of life by acute care teams during health events. Personalised care, communication with families and continuity of care were thought to be key elements to improve care. CONCLUSION: Paediatric palliative care is well recognised throughout specialties, yet continuity of care is challenged by groups' roles and interventions in a patient's illness. A reflective and mutual clinical approach is needed to improve quality of care and professionals' satisfaction.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/apa.14969" target="_blank" rel="noreferrer noopener">10.1111/apa.14969</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Acta Paediatrica
Clinical Ethics
Continuity of care
Côté A
Gaucher N
May 2020 List
paediatric palliative care
Payot A
Quality Of Care
-
Dublin Core
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Title
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November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2019 List
URL Address
<a href="http://doi.org/10.1111/apa.14203" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.14203</a>
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Title
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Paediatricians' expectations and perspectives regarding genetic testing for children with developmental disorders
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Array comparative genomic hybridisation; Attitude of Health Personnel; Autism spectrum disorder; Chromosomal microarray; Developmental disorders; Genetic Testing; Global developmental delay; Autism Spectrum Disorder/genetics; Child; Developmental Disabilities/genetics; Humans; Microarray Analysis; Pediatricians/psychology
Creator
An entity primarily responsible for making the resource
Tremblay I; Laberge AM; Cousineau D; Carmant L; Rowan A; Janvier A
Description
An account of the resource
AIM: To investigate paediatricians' expectations and perspectives of genetic testing for children with developmental disorders. METHODS: Paediatricians working in a developmental clinic were surveyed each time they ordered a chromosomal microarray (CMA) for a child with developmental disorders. Clinical charts were reviewed. Results were analysed using mixed methodology. RESULTS: Ninety-seven % (73/76) of surveys were completed. Paediatricians reported that 36% of parents had difficulties understanding genetic testing and that 40% seemed anxious. The majority expected testing to have positive impacts on children/families. The themes raised were (i) clarifying the diagnosis (56%), (ii) understanding the aetiology of the condition (55%), (iii) enabling prenatal diagnosis/counselling (43%), (iv) improving medical care for the child (15%) and (v) decreasing parental guilt/anxiety (8%). Less than half anticipated negative impacts; 74% expected that the most helpful result for their patient would be an abnormal result explaining the disorder. Among the 73 children for whom CMA was ordered, 81% got tested: 66% of the results were normal, 19% were abnormal and contributed to explain the condition and 12% were abnormal but of unknown significance. CONCLUSION: Paediatricians generally expect many positive and less negative impacts of genetic testing for children with developmental disorders. Parental perspectives are needed.
Identifier
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<a href="http://doi.org/10.1111/apa.14203" target="_blank" rel="noreferrer noopener">10.1111/apa.14203</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
Acta Paediatrica
Array comparative genomic hybridisation
Attitude Of Health Personnel
Autism spectrum disorder
Autism Spectrum Disorder/genetics
Carmant L
Child
Chromosomal microarray
Cousineau D
Developmental Disabilities/genetics
Developmental disorders
Genetic Testing
Global developmental delay
Humans
Janvier A
Laberge AM
Microarray Analysis
November 2019 List
Pediatricians/psychology
Rowan A
Tremblay I
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="http://doi.org/10.1111/apa.14969" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.14969</a>
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Title
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Pediatric Palliative Care in Practice: Perspectives between Acute and Long-term Healthcare Teams
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Pediatric palliative care; clinical ethics; continuity of care; quality of care
Creator
An entity primarily responsible for making the resource
Cote A J; Payot A; Gaucher N
Description
An account of the resource
AIM: To explore and compare acute and long-term care professionals' perspectives about pediatric palliative care. METHODS: Focus group interviews were conducted in 2016-2017 with professionals from acute (Emergency Department, Intensive Care Unit) and long-term care (Complex Care Service, Palliative Care) teams. RESULTS: Fifty-eight participants were enrolled. Palliative care definitions were similar throughout groups: to provide active care early in the illness, focusing on the child as a whole and supporting families. Each group perceived a different role in the patient's illness trajectory, reflecting their own culture of care. They demonstrated important differences in their approach to palliative care. Disagreements regarding when or how to discuss goals of care were expressed. Acute care professionals reported discomfort when having to introduce these discussions for the first time, while long-term care professionals perceived negative judgments about their patients' quality of life by acute care teams during health events. Personalized care, communication with families and continuity of care were thought to be key elements to improve care. CONCLUSION: Pediatric palliative care is well recognized throughout specialties, yet continuity of care is challenged by groups' roles and interventions in a patient's illness. A reflective and mutual clinical approach is needed to improve quality of care and professionals' satisfaction. This article is protected by copyright. All rights reserved.
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<a href="http://doi.org/10.1111/apa.14969" target="_blank" rel="noreferrer noopener">10.1111/apa.14969</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Acta Paediatrica
Clinical Ethics
Continuity of care
Cote A J
Gaucher N
October 2019 List
Payot A
Pediatric Palliative Care
Quality Of Care
-
Dublin Core
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Title
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September 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2019 List
URL Address
<a href="http://doi.org/10.1111/apa.14935" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.14935</a>
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Title
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Telling the truth to dying children-End-of-life communication with families
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
pediatric palliative care; pediatrics; palliative care; families; end-of-life communication; communication
Creator
An entity primarily responsible for making the resource
Lovgren M; Melin-Johansson C; Udo C; Sveen J
Identifier
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<a href="http://doi.org/10.1111/apa.14935" target="_blank" rel="noreferrer noopener">10.1111/apa.14935</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Acta Paediatrica
Communication
End-of-life Communication
Families
Lovgren M
Melin-Johansson C
Palliative Care
Pediatric Palliative Care
Pediatrics
September 2019 List
Sveen J
Udo C
-
Dublin Core
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Title
A name given to the resource
September 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
October 2018 List
URL Address
<a href="http://doi.org/10.1111/apa.14331" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.14331</a>
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Title
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All cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Lykke C; Ekholm O; Schmiegelow K; Olsen M; Sjagren P
Description
An account of the resource
Aim Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994–2014. Methods We obtained data on 9462 children who died before the age of 18 from the Danish Register of Causes of Death. The causes of deaths were listed according to the codes in the International Classification of Diseases. Results The all‐cause mortality rate decreased by 52% over the study period, and infants below one year accounted for 61% of all deaths. The decline in infant mortality (26%) primarily reflected fewer deaths due to congenital malformations and chromosomal abnormalities (68%) and perinatal deaths (30%). In children aged one year to 17 years, the substantial decrease (65%) was due to external causes (75%) and neoplasms (57%). The relative proportion of hospital deaths increased, while home deaths decreased. Conclusion All‐cause mortality rate decreased markedly, and the relative proportion of hospital deaths increased. The results may reflect more aggressive and effective treatment attempts to save lives, but some terminally ill children may be deprived of the option of dying at home.
Identifier
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<a href="http://doi.org/10.1111/apa.14331" target="_blank" rel="noreferrer noopener">10.1111/apa.14331</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.
2018
Acta Paediatrica
Ekholm O
Lykke C
October 2018 List
Olsen M
Schmiegelow K
September 2018 List
Sjagren P
-
Dublin Core
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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/10.1111/apa.14102" target="_blank" rel="noreferrer">http://doi.org/10.1111/apa.14102</a>
Dublin Core
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Title
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Teamwork and conflicts in paediatric end-of-life care
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
conflict; Pediatrics; teamwork; Terminal Care; conflict management; Coping Behavior; editorial; emotion; health care personnel; Human; Medical Decision Making; nurse; parental attitude; physician; physiotherapist; priority journal; psychologist
Creator
An entity primarily responsible for making the resource
Verhagen AAE
Identifier
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<a href="http://doi.org/10.1111/apa.14102" target="_blank" rel="noreferrer">10.1111/apa.14102</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
2018
Acta Paediatrica
Conflict
conflict management
Coping Behavior
Editorial
Emotion
Health Care Personnel
Human
March 2018 List
Medical Decision Making
Nurse
Parental Attitude
Pediatrics
Physician
physiotherapist
Priority Journal
Psychologist
Teamwork
Terminal Care
Verhagen AAE
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1651-2227.2007.00566.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.2007.00566.x</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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Missed opportunities-adolescents with a chronic condition (insulin-dependent diabetes mellitus) describe their cigarette-smoking trajectories and consider health risks
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Female; Humans; Male; Adult; Attitude to Health; Parents; Interviews as Topic; Peer Group; adolescent; Adolescent Transitions; Chronic disease; Adolescent Behavior/psychology; Diabetes Mellitus; Type 1/psychology; Smoking Cessation/psychology; Smoking/adverse effects/prevention & control/psychology; Tobacco Use Disorder/psychology
Creator
An entity primarily responsible for making the resource
Regber S; Kelly KB
Description
An account of the resource
AIM: To enhance our knowledge on why adolescents with a chronic condition (insulin-dependent diabetes mellitus, IDDM) choose to smoke despite possible awareness of health risks. METHODS: Twelve patients aged 15-20 with IDDM who smoked cigarettes volunteered to participate in qualitative interviews. The results were analyzed with content analysis according to Miles and Huberman 1994. RESULTS: One set confirmed what is earlier known on cigarette smoking among adolescents, such as plain exploring, needs to conform with group norms, identity needs and denial of risks. Other themes gave new insights. One was the emotional attitudes-or lack of emotions-expressed by important others, which exerted strong influences on the smoking trajectories. These emotions affected both initiation and motivation for quitting cigarette smoking and seemed crucial as means of meaningful communications concerning smoking. One theme was a flow path of cigarette smoking, which demonstrated opportunities for secondary prevention. Finally, developmental reasons for smoking and motivation for quitting could be described. CONCLUSIONS: There are several windows of opportunities to lower the risk of adolescents with IDDM and other chronic conditions from becoming and remaining smokers, as reported by young people themselves.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1651-2227.2007.00566.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.2007.00566.x</a>
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Type
The nature or genre of the resource
Journal Article
2007
Acta Paediatrica
Adolescent
Adolescent Behavior/psychology
Adolescent Transitions
Adult
Attitude To Health
Backlog
Chronic Disease
Diabetes Mellitus
Female
Humans
Interviews As Topic
Journal Article
Kelly KB
Male
Parents
Peer Group
Regber S
Smoking Cessation/psychology
Smoking/adverse effects/prevention & control/psychology
Tobacco Use Disorder/psychology
Type 1/psychology
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1651-2227.2009.01626.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.2009.01626.x</a>
Dublin Core
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Title
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Pain in children with cerebral palsy: a cross-sectional multicentre European study.
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Child; Cross-Sectional Studies; Humans; Prevalence; Parent-Child Relations; Questionnaires; Age Factors; Severity of Illness Index; Regression Analysis; Cerebral Palsy/co [Complications]; Pain/et [Etiology]; Pain/ep [Epidemiology]; Europe/epidemiology
Creator
An entity primarily responsible for making the resource
Gibson L; Dickinson HO; Colver A
Description
An account of the resource
AIM: To determine the prevalence and associations of self-reported and parent-reported pain in children with cerebral palsy (CP) of all severities., METHOD: Cross-sectional design using a questionnaire; analysis using ordinal regression. Children aged 8-12 years were randomly selected from population-based registers of children with CP in eight European regions; a further region recruited 75 children from multiple sources. Outcome measures were pain in the previous week among children who could self-report and parents' perception of their child's pain in the previous 4 weeks., RESULTS: Data on pain were available from 490 children who could self-report and parents of 806 children (those who could and could not self-report). The estimated population prevalence of self-reported pain in the previous week was 60% (95% CI: 54-65%) and that of parent-reported pain in the previous 4 weeks was 73% (95% CI: 69-76%). In self-reporting children, older children reported more pain but pain was not significantly associated with severity of impairment. In parent reports, severity of child impairment, seizures and parental unemployment were associated with more frequent and severe pain., CONCLUSION: Pain in children with CP is common. Clinicians should enquire about pain and consider appropriate physical, therapeutic or psychological management.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1651-2227.2009.01626.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.2009.01626.x</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2010
Acta Paediatrica
Age Factors
Backlog
Cerebral Palsy/co [Complications]
Child
Colver A
Cross-sectional Studies
Dickinson HO
Europe/epidemiology
Gibson L
Humans
Journal Article
Pain/ep [Epidemiology]
Pain/et [Etiology]
Parent-child Relations
Prevalence
Questionnaires
Regression Analysis
Severity Of Illness Index
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1651-2227.2005.tb01887.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.2005.tb01887.x</a>
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Title
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Childhood idiopathic thrombocytopenic purpura in the Nordic countries: epidemiology and predictors of chronic disease
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Prognosis; Prospective Studies; Risk Factors; Incidence; adolescent; Preschool; infant; Newborn; Nonparametric; Statistics; Purpura; Thrombocytopenic; Chronic Disease/epidemiology; Finland/epidemiology; Scandinavia/epidemiology; Acute Disease/epidemiology; Hemorrhage/epidemiology/etiology; Iceland/epidemiology; Idiopathic/complications/diagnosis/epidemiology
Creator
An entity primarily responsible for making the resource
Zeller B; Rajantie J; Hedlund-Treutiger I; Tedgard U; Wesenberg F; Jonsson OG; Henter JI; NOPHO ITP
Description
An account of the resource
AIM: To describe the epidemiology of idiopathic thrombocytopenic purpura (ITP) in the Nordic countries, to define clinical subgroups and to investigate factors predicting chronic disease. METHODS: A prospective registration was done from 1998 to 2000, including all children with newly diagnosed ITP aged 0-14 y and at least one platelet count <30 x 10(9)/l. RESULTS: 506 children were registered and 423 followed for 6 mo. The incidence was 4.8/10(5) per year. Most children were aged 0-7 y (78%), with a predominance of boys, while patients aged 8-14 y had equal representation of the two sexes. There were seasonal variations determined by variations in postinfectious cases with sudden onset. The platelet count was <10 x 10(9)/l in 58%, but bleeding manifestations were mild or moderate in 97%. The insidious form (symptoms for more than 2 wk) was more frequent in older children and girls, showed little seasonal variation, had milder manifestations and ran a chronic course in more than half the cases. Intracranial haemorrhages did not occur in the first 6 mo after diagnosis. Chronic ITP developed in 25%. The strongest predictor of chronic disease was insidious onset of symptoms (OR 5.97). CONCLUSION: In the Nordic countries, ITP mainly affects children aged 0-7 y, with a winter bulk of postinfectious cases superimposed on a steady occurrence of non-infectious cases. Clinically, it may be useful to distinguish between children with sudden versus insidious onset of symptoms rather than between different age groups.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1651-2227.2005.tb01887.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.2005.tb01887.x</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2005
Acta Paediatrica
Acute Disease/epidemiology
Adolescent
Backlog
Child
Chronic Disease/epidemiology
Female
Finland/epidemiology
Hedlund-Treutiger I
Hemorrhage/epidemiology/etiology
Henter JI
Humans
Iceland/epidemiology
Idiopathic/complications/diagnosis/epidemiology
Incidence
Infant
Jonsson OG
Journal Article
Male
Newborn
Nonparametric
NOPHO ITP
Preschool
Prognosis
Prospective Studies
Purpura
Rajantie J
Risk Factors
Scandinavia/epidemiology
Statistics
Tedgard U
Thrombocytopenic
Wesenberg F
Zeller B
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1651-2227.2005.tb02094.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.2005.tb02094.x</a>
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Title
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Gender affects self-evaluation in children with cystic fibrosis and their healthy siblings
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
PedPal Lit
Creator
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Wennstrom IL; Berg U; Kornfalt R; Ryden O
Identifier
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<a href="http://doi.org/10.1111/j.1651-2227.2005.tb02094.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.2005.tb02094.x</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2005
2005
Acta Paediatrica
Backlog
Berg U
Journal Article
Kornfalt R
PedPal Lit
Ryden O
Wennstrom IL
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1651-2227.2006.tb02186.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.2006.tb02186.x</a>
Dublin Core
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Title
A name given to the resource
Clinical manifestations of Fabry disease in children: data from the Fabry Outcome Survey
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Female; Humans; Male; Outcome Assessment (Health Care); Heterozygote; adolescent; Preschool; Q3 Literature Search; Age of Onset; DNA Mutational Analysis; alpha-Galactosidase/metabolism/therapeutic use; Fabry Disease/diagnosis/drug therapy/physiopathology; Isoenzymes/therapeutic use
Creator
An entity primarily responsible for making the resource
Ramaswami U; Whybra C; Parini R; Pintos-Morell G; Mehta A; Sunder-Plassmann G; Widmer U; Beck M; FOS European Investigators
Description
An account of the resource
BACKGROUND: Fabry disease is a rare X-linked disorder caused by deficient activity of the enzyme alpha-galactosidase A. This produces progressive lysosomal accumulation of globotriaosylceramide throughout the body, leading to organ failure and premature death. AIM: Here, we present the clinical manifestations of Fabry disease in children enrolled in FOS--the Fabry Outcome Survey--a European database of the natural history of Fabry disease and the effects of enzyme replacement therapy with agalsidase alfa (Replagal). METHODS: Currently, there are 545 patients in FOS, from 11 European countries. We analysed the baseline demographic and clinical characteristics of 82 of these patients (40 boys, 42 girls) who were below 18 y of age. The median age at evaluation (defined as the median age at entry into FOS) was 12.5 and 13.2 y for boys and girls, respectively. RESULTS: The most frequent early clinical manifestations of Fabry disease were neurological (acroparaesthesiae, altered temperature sensitivity) and gastrointestinal symptoms (altered bowel habits and abdominal pain), which were documented in about 80% and 60% of patients, respectively, at the time of evaluation and subsequent entry into FOS. Tinnitus, vertigo, fatigue and angiokeratoma were present in over 40% of patients. Symptoms were noted in early childhood and occurred with similar frequency in boys and girls, although the onset of symptoms was 2-5 y later in girls than in boys. There was an approximately 3-y delay from onset of symptoms to diagnosis, and patients were frequently misdiagnosed. CONCLUSION: Although the life-threatening complications of Fabry disease, such as stroke and renal and heart failure, are not seen in children, the present analysis shows that other symptoms are common and may have an impact on quality of life.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1651-2227.2006.tb02186.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.2006.tb02186.x</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2006
Acta Paediatrica
Adolescent
Age of Onset
alpha-Galactosidase/metabolism/therapeutic use
Backlog
Beck M
Child
DNA Mutational Analysis
Fabry Disease/diagnosis/drug therapy/physiopathology
Female
FOS European Investigators
Heterozygote
Humans
Isoenzymes/therapeutic use
Journal Article
Male
Mehta A
Outcome Assessment (health Care)
Parini R
Pintos-Morell G
Preschool
Q3 Scoping Review Results
Ramaswami U
Sunder-Plassmann G
Whybra C
Widmer U
-
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
Backlog
URL Address
<a href="http://doi.org/10.1080/080352502753457851" target="_blank" rel="noreferrer">http://doi.org/10.1080/080352502753457851</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
A name given to the resource
Brain damage markers in children. Neurobiological and clinical aspects
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Child; Female; Humans; Male; Prognosis; Sensitivity and Specificity; Predictive Value of Tests; Nerve Growth Factors; Preschool; Brain Damage; Biological Markers/blood; Brain Injuries/blood/diagnosis; Chronic/blood/diagnosis; Glial Fibrillary Acidic Protein/blood; Phosphopyruvate Hydratase/blood; S100 Proteins/blood
Creator
An entity primarily responsible for making the resource
Leviton A; Dammann O
Description
An account of the resource
The presence in blood of proteins normally confined to the cytoplasm of brain cells is considered peripheral evidence of brain damage. Only recently have these proteins been measured in the blood of children at risk of brain damage. To show the value and limitations of measuring these proteins, we review their biology and the adult literature that has correlated the blood concentrations of these proteins with lesion size and dysfunction. Conclusion: We conclude that brain damage markers will increasingly be measured in the blood of newborns and other children at risk of brain damage.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/080352502753457851" target="_blank" rel="noreferrer">10.1080/080352502753457851</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).
Type
The nature or genre of the resource
Journal Article
2002
Acta Paediatrica
Backlog
Biological Markers/blood
Brain Damage
Brain Injuries/blood/diagnosis
Child
Chronic/blood/diagnosis
Dammann O
Female
Glial Fibrillary Acidic Protein/blood
Humans
Journal Article
Leviton A
Male
Nerve Growth Factors
Phosphopyruvate Hydratase/blood
Predictive Value of Tests
Preschool
Prognosis
S100 Proteins/blood
Sensitivity and Specificity
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1651-2227.1988.tb10770.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.1988.tb10770.x</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
A name given to the resource
Juvenile neuronal ceroid lipofuscinosis (JNCL): quantitative description of its clinical variability
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
1988
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; Follow-Up Studies; Longitudinal Studies; adolescent; retrospective studies; Neuronal Ceroid-Lipofuscinoses/diagnosis
Creator
An entity primarily responsible for making the resource
Kohlschutter A; Laabs R; Albani M
Description
An account of the resource
The clinical courses of 17 JNCL patients were analyzed retrospectively with the use of a simple, disease-specific scoring system. The mean observation period was 14 years (range 8-18 years). Scores of 0 (maximal dysfunction) to 3 (normal function) were assigned to each patient's vision, intellect, language, motor function, and epilepsy for each year of observation. The lapse of medians and ranges of all patients' scores were established from age 3 to 20 years. This scoring system allowed quantitative description of an individual course in context of the wide natural variability of the disease. Patients with seizures starting before the age of 10 years tended to have intractable epilepsy, to receive multiple antiepileptic drug therapies, and to have poor courses including problems not related to epilepsy. One patient had a course clearly outside the usual variability of JNCL and is thought to represent a genetic variant.
1988
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1651-2227.1988.tb10770.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.1988.tb10770.x</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).
Type
The nature or genre of the resource
Journal Article
1988
Acta Paediatrica
Adolescent
Adult
Albani M
Backlog
Child
Female
Follow-up Studies
Humans
Journal Article
Kohlschutter A
Laabs R
Longitudinal Studies
Male
Neuronal Ceroid-Lipofuscinoses/diagnosis
Retrospective Studies
-
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
Backlog
URL Address
<a href="http://doi.org/10.1080/080352599750029367" target="_blank" rel="noreferrer">http://doi.org/10.1080/080352599750029367</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
A name given to the resource
Laboratory integration and utilization of tandem mass spectrometry in neonatal screening: a model for clinical mass spectrometry in the next millennium
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
1999
Subject
The topic of the resource
Female; Humans; infant; Male; United States; Sensitivity and Specificity; Forecasting; Biomarkers of Pain; Newborn; Inborn Errors/diagnosis; Metabolism; Clinical Laboratory Techniques/instrumentation; Mass Spectrometry/trends/utilization; Neonatal Screening/methods
Creator
An entity primarily responsible for making the resource
Chace DH; DiPerna JC; Naylor EW
Description
An account of the resource
Clinical and neonatal screening methods using a tandem mass spectrometer are clearly a model for modern laboratory testing in the new Millennium. By the year 2000, more than 1 million blood and plasma samples will have been tested in laboratories throughout the world for a battery of metabolic disorders using a tandem mass spectrometer as the primary analytical device. A tandem mass spectrometer is considered the "ultimate" analytical detector in a variety of biochemical and clinical methods because of its very high accuracy, selectivity, precision, versatility and robust nature. The ability to achieve very high and reproducible sample throughput (approximately 600 samples/instrument/24 h) has made this technology cost-effective for newborn screening. In order to reliably measure markers of inborn errors of metabolism while maintaining low costs and high efficiency, accuracy and quality, much attention needs to be placed on monitoring and maintenance of all components of the entire testing system. These components include specimen collection and sample preparation methods, analysis by LC tandem mass spectrometry, conversion of raw mass spectra (data) into clinically meaningful results (concentration), expert interpretation of these results so that the clinician can be provided with information to facilitate a diagnose, and follow-up and education so that the maximum benefits of newborn screening translate into prevention of disease symptoms or more effective treatments. Addressing each part of the whole system will produce a quality screening program that will detect a battery of disorders using tandem mass spectrometry with a disease frequency of nearly 1 in 4000 infants.
1999
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/080352599750029367" target="_blank" rel="noreferrer">10.1080/080352599750029367</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).
Type
The nature or genre of the resource
Journal Article
1999
Acta Paediatrica
Backlog
Biomarkers of Pain
Chace DH
Clinical Laboratory Techniques/instrumentation
DiPerna JC
Female
Forecasting
Humans
Inborn Errors/diagnosis
Infant
Journal Article
Male
Mass Spectrometry/trends/utilization
Metabolism
Naylor EW
Neonatal Screening/methods
Newborn
Sensitivity and Specificity
United States
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1651-2227.1994.tb13040.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.1994.tb13040.x</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
A name given to the resource
Physiological changes, plasma beta-endorphin and cortisol responses to tracheal intubation in neonates
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
1994
Subject
The topic of the resource
Humans; infant; Drug Therapy; Analgesia; Blood Pressure; Heart Rate; beta-Endorphin/blood; Biomarkers of Pain; Newborn; Blood Glucose/metabolism; Oxygen/blood; Intubation; Hydrocortisone/blood; Combination; Alfentanil; Glycopyrrolate/therapeutic use; Intratracheal/adverse effects; Meperidine; Premedication; Succinylcholine
Creator
An entity primarily responsible for making the resource
Pokela ML; Koivisto M
Description
An account of the resource
Physiological, plasma beta-endorphin and cortisol responses to nasotracheal intubation were studied in 20 distressed infants of median age 0.3 days (range 0.1-23 days) randomized into groups given pethidine 1 mg/kg (n = 10) or alfentanil 20 micrograms/kg plus suxamethonium 1.5 mg/kg (n = 10) before intubation. All of the infants were given glycopyrrolate 3-5 micrograms/kg. Hypoxaemia during intubation was found in all 10 infants in the pethidine group and in 7 of 10 infants in the alfentanil-suxamethonium group, its duration being significantly longer in the pethidine group and being associated with the duration of the intubation procedure. Blood pressure increased, but not statistically significantly, in all except 2 patients in the alfentanil-suxamethonium group and bradycardia appeared in 1 patient in each group. Plasma beta-endorphin and cortisol values did not show any statistically significant intra-group or inter-group differences. Newborn infants suffer from hypoxaemia during intubation when awake more and therefore need adequate premedication before elective intubation. One alternative is the combination of glycopyrrolate, alfentanil and suxamethonium described here, although the ideal medication and dosage still remain to be defined.
1994
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1651-2227.1994.tb13040.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.1994.tb13040.x</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).
Type
The nature or genre of the resource
Journal Article
1994
Acta Paediatrica
Alfentanil
Analgesia
Backlog
beta-Endorphin/blood
Biomarkers of Pain
Blood Glucose/metabolism
Blood Pressure
Combination
Drug Therapy
Glycopyrrolate/therapeutic use
Heart Rate
Humans
Hydrocortisone/blood
Infant
Intratracheal/adverse effects
Intubation
Journal Article
Koivisto M
Meperidine
Newborn
Oxygen/blood
Pokela ML
Premedication
Succinylcholine
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1651-2227.1995.tb13616.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.1995.tb13616.x</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
A name given to the resource
Late onset globoid cell leukodystrophy (Krabbe's disease)--Swedish case with 15 years of follow-up.
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
1995
Subject
The topic of the resource
Humans; Male; Adult; Follow-Up Studies; Longitudinal Studies; Sweden; Tomography; Age of Onset; X-Ray Computed; Leukodystrophy; Vision Disorders/etiology; Epilepsy/etiology; Galactosylceramidase/blood; Globoid Cell/complications/enzymology/radiography; Musculoskeletal Equilibrium
Creator
An entity primarily responsible for making the resource
Arvidsson J; Hagberg B; Mansson JE; Svennerholm L
Description
An account of the resource
We describe a male patient with late onset globoid cell leukodystrophy (GLD) (Krabbe's disease) still alive at 24 years of age, with a well preserved intellectual and communicative capacity, in contrast to visual failure and severe central pyramidal and extrapyramidal motor disability with spasticity, dystonia, ataxia and peripheral neuropathy. Visual dysfunction began at 4 years of age, limping and balance problems at 8 years and epilepsy at 14 years of age. Neuroimaging at 15 years of age revealed white matter lesions, and nerve conduction velocity examinations showed a slowly developing polyneuropathy. Galactosylceramidase activity was reduced in leukocytes to 0.07 mu kat/kg protein compared with 0.02 (SD 0.01) mu kat/kg protein in infantile GLD.
1995
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1651-2227.1995.tb13616.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.1995.tb13616.x</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).
Type
The nature or genre of the resource
Journal Article
1995
Acta Paediatrica
Adult
Age of Onset
Arvidsson J
Backlog
Epilepsy/etiology
Follow-up Studies
Galactosylceramidase/blood
Globoid Cell/complications/enzymology/radiography
Hagberg B
Humans
Journal Article
Leukodystrophy
Longitudinal Studies
Male
Mansson JE
Musculoskeletal Equilibrium
Svennerholm L
Sweden
Tomography
Vision Disorders/etiology
X-Ray Computed
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1651-2227.1996.tb13954.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.1996.tb13954.x</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
A name given to the resource
Studies on nutrition in severely neurologically disabled children in an institution
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
Child; Female; Humans; infant; Male; adolescent; Preschool; Nutritional Status; Newborn; Nervous System Diseases/complications; Brain Damage; Energy Intake; Epilepsy/complications; Mental Retardation/complications; Institutionalized; Nutrition Disorders/complications; Asphyxia Neonatorum/complications; Chronic/complications; Ferritin/blood; Growth Disorders/etiology; Hemoglobins/analysis; Selenium/blood; Vitamin D/blood; Vitamin E/blood
Creator
An entity primarily responsible for making the resource
Hals J; Ek J; Svalastog AG; Nilsen H
Description
An account of the resource
Severe neurological handicaps in children are frequently accompanied by growth retardation. We have studied 13 severely neurologically impaired children in an institution to see if their poor growth was related to a low intake of energy and nutrients, if this was reflected in biochemical nutritional parameters, and to modify their diet according to the results. The investigation showed low dietary intakes of energy and of several of the nutrients, with corresponding low Hb values and serum values of ferritin, selenium and vitamins E and D in some of the children. All the children were initially light for age, with catch-up growth after intervention. We conclude that severely disabled children are at high risk for under- and malnutrition, and that this may partly explain the growth retardation in the study group. To avoid the potential detrimental effects of malnutrition, it is important to aim at providing an optimal diet.
1996
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1651-2227.1996.tb13954.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.1996.tb13954.x</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).
Type
The nature or genre of the resource
Journal Article
1996
Acta Paediatrica
Adolescent
Asphyxia Neonatorum/complications
Backlog
Brain Damage
Child
Chronic/complications
Ek J
Energy Intake
Epilepsy/complications
Female
Ferritin/blood
Growth Disorders/etiology
Hals J
Hemoglobins/analysis
Humans
Infant
Institutionalized
Journal Article
Male
Mental Retardation/complications
Nervous System Diseases/complications
Newborn
Nilsen H
Nutrition Disorders/complications
Nutritional Status
Preschool
Selenium/blood
Svalastog AG
Vitamin D/blood
Vitamin E/blood
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1651-2227.1996.tb14129.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.1996.tb14129.x</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
A name given to the resource
Feeding and nutritional characteristics in children with moderate or severe cerebral palsy
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
Child; Female; Humans; Male; Prevalence; Questionnaires; Disabled Persons; Risk Factors; Activities of Daily Living; Case-Control Studies; Non-U.S. Gov't; Research Support; Nutritional Status; Cerebral Palsy/complications; Age Distribution; Nutrition Assessment; Anthropometry; Child Nutrition Disorders/etiology; Eating Disorders/etiology
Creator
An entity primarily responsible for making the resource
Dahl M; Thommessen M; Rasmussen M; Selberg T
Description
An account of the resource
This study was undertaken to characterize the current feeding situation and nutritional status of moderately or severely disabled children with cerebral palsy (CP). Thirty-five children with CP (17 with diplegia, 11 with dystonia, 6 with tetraplegia and one child with ataxia) were investigated at a median age of 8 years. Information was obtained from parental interviews, medical records and clinical and anthropometric examinations. Twenty-one of the 35 children (60%), most of whom were severely disabled, were reported by the parents to have current feeding problems. Anthropometric indicators of undernutrition were found in 15 children (43%) and of overnutrition in 3 children (9%), compared with reference values of healthy children. Severely disabled children in the youngest age group were most at risk for poor nutritional status. Early identification of children at nutritional risk requires regular assessments of feeding skills and nutritional status.
1996
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1651-2227.1996.tb14129.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.1996.tb14129.x</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
1996
Acta Paediatrica
Activities of Daily Living
Age Distribution
Anthropometry
Backlog
Case-Control Studies
Cerebral Palsy/complications
Child
Child Nutrition Disorders/etiology
Dahl M
Disabled Persons
Eating Disorders/etiology
Female
Humans
Journal Article
Male
Non-U.S. Gov't
Nutrition Assessment
Nutritional Status
Prevalence
Questionnaires
Rasmussen M
Research Support
Risk Factors
Selberg T
Thommessen M
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1651-2227.1997.tb08955.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.1997.tb08955.x</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
A name given to the resource
Nutrition in disabled children
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Child; Humans; Disabled Persons; Nutritional Status; Quadriplegia/complications; Deglutition Disorders/complications; Nutrition Disorders/etiology
Creator
An entity primarily responsible for making the resource
Stathopolou E; Thomas AG
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1651-2227.1997.tb08955.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.1997.tb08955.x</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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
1997
1997
Acta Paediatrica
Backlog
Child
Deglutition Disorders/complications
Disabled Persons
Humans
Journal Article
Nutrition Disorders/etiology
Nutritional Status
Quadriplegia/complications
Stathopolou E
Thomas AG
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1651-2227.2001.tb02439.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.2001.tb02439.x</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
A name given to the resource
Infantile systemic hyalinosis: a case with atypical prolonged survival
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Humans; Male; infant; Fibroma/mortality/pathology
Creator
An entity primarily responsible for making the resource
Thauvin-Robinet C; Faivre L; Beer F; Justrabo E; Nivelon-Chevallier A; Huer F
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1651-2227.2001.tb02439.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.2001.tb02439.x</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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2001
2001
Acta Paediatrica
Backlog
Beer F
Faivre L
Fibroma/mortality/pathology
Huer F
Humans
Infant
Journal Article
Justrabo E
Male
Nivelon-Chevallier A
Thauvin-Robinet C
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1651-2227.2012.02680.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.2012.02680.x</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
A name given to the resource
Challenging symptoms in children with rare life-limiting conditions: findings from a prospective diary and interview study with families
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Child; Female; Humans; Male; Young Adult; Interviews as Topic; Prospective Studies; Disease Progression; Medical Records; Family Health; adolescent; Preschool; Charting the Territory; Psychological; Stress; Mucopolysaccharidoses/diagnosis/psychology/therapy; Mucopolysaccharidosis I/diagnosis/therapy; Mucopolysaccharidosis III/diagnosis/therapy; Neuronal Ceroid-Lipofuscinoses/diagnosis/psychology/therapy
Creator
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Malcolm C; Hain R; Gibson F; Adams S; Anderson G; Forbat L
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1651-2227.2012.02680.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.2012.02680.x</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).
Type
The nature or genre of the resource
Journal Article
2012
Acta Paediatrica
Adams S
Adolescent
Anderson G
Backlog
Child
Disease Progression
Family Health
Female
Forbat L
Gibson F
Hain R
Humans
Interviews As Topic
Journal Article
Malcolm C
Male
Medical Records
Mucopolysaccharidoses/diagnosis/psychology/therapy
Mucopolysaccharidosis I/diagnosis/therapy
Mucopolysaccharidosis III/diagnosis/therapy
Neuronal Ceroid-Lipofuscinoses/diagnosis/psychology/therapy
Preschool
Prospective Studies
Psychological
Stress
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
A name given to the resource
Oncology
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1111/apa.13365" target="_blank" rel="noreferrer">http://doi.org/10.1111/apa.13365</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
A name given to the resource
Metronomics during palliative care in paediatric oncology? For sure! But handle me with care
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
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Administration; Neoplasms/dt [drug Therapy]; Child; Humans; Metronomic; Palliative Care/mt [methods]
Creator
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Andre N; Pasquier E
Identifier
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<a href="http://doi.org/10.1111/apa.13365" target="_blank" rel="noreferrer">10.1111/apa.13365</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
Acta Paediatrica
Administration
Andre N
Child
Humans
Metronomic
Neoplasms/dt [drug Therapy]
Oncology 2017 List
Palliative Care/mt [methods]
Pasquier E
-
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
Oncology
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1111/apa.13338" target="_blank" rel="noreferrer">http://doi.org/10.1111/apa.13338</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
A name given to the resource
Metronomic therapy can increase quality of life during paediatric palliative cancer care, but careful patient selection is essential
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Neoplasms/dt [drug Therapy]; Palliative Care; Patient Selection; Quality Of Life; Administration; Child; Female; Humans; Karnofsky Performance Status; Male; Metronomic; Neoplasms/mo [mortality]; Prospective Studies
Creator
An entity primarily responsible for making the resource
Porkholm M; Toiviainen-Salo S; Seuri R; Lonnqvist T; Vepsalainen K; Saarinen-Pihkala UM; Pentikainen V; Kivivuori SM
Description
An account of the resource
AIM: Children with refractory or high-risk malignancies frequently suffer from poor quality of life during palliative care. This study explored the effect of metronomic drug administration on survival and quality of life in paediatric patients with various refractory or high-risk tumours. METHODS: We treated 17 patients with a maintenance therapy that consisted of metronomic thalidomide, etoposide and celecoxib. The endpoints of the study were overall and progression-free survival, changes in the Karnofsky-Lansky scores from baseline to the end of the study therapy and radiological responses. RESULTS: The median overall survival after the start of the study therapy was 6.2 months (range 2.0-57.7), and the six-, 12- and 24-month survival rates were 59%, 18% and 18%, respectively. The median progression-free survival was 3.2 months (range 0.3-17.8). The Karnofsky-Lansky scores increased significantly during the study therapy (p = 0.02), with 35% of the patients having a transient improvement in their clinical status. Radiologically, one partial response and two disease stabilisations were encountered. Grade III-V adverse events occurred in 76% of the patients. CONCLUSION: Metronomic therapy may increase the quality of life during palliative care for childhood cancer, but requires careful patient selection to minimise the risk of serious adverse events. Copyright _2016 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/apa.13338" target="_blank" rel="noreferrer">10.1111/apa.13338</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
Acta Paediatrica
Administration
Child
Female
Humans
Karnofsky Performance Status
Kivivuori SM
Lonnqvist T
Male
Metronomic
Neoplasms/dt [drug Therapy]
Neoplasms/mo [mortality]
Oncology 2017 List
Palliative Care
Patient Selection
Pentikainen V
Porkholm M
Prospective Studies
Quality Of Life
Saarinen-Pihkala UM
Seuri R
Toiviainen-Salo S
Vepsalainen K