1
40
12
-
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>
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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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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/apa.16981" target="_blank" rel="noreferrer noopener">10.1111/apa.16981</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).
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
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.50</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
Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Palliative Care; child; controlled study; female; human; male; retrospective study; quality of life; palliative therapy; hospice; practice guideline; follow up; outcome assessment; artificial ventilation; clinical article; patient referral; education; consultation; pediatric intensive care unit; awareness; diagnosis; life sustaining treatment; hospital discharge; adolescent; surgery; infant; demographics; conference abstract; e-mail; decision making; trust; length of stay; nurse; writing; community care; heart graft; nursing staff; clinical nurse specialist; apparent life threatening event; organizational restructuring; oxygenation
Creator
An entity primarily responsible for making the resource
Subhash S; Freitas D; Aidoo E; Nkulu G; Chan-Dominy A
Description
An account of the resource
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus wishes of the child and family on preferred place of care.2 3 We evaluated the temporal effect on PC referrals at a quarternary cardiorespiratory paediatric intensive care unit (PICU) following organisational restructuring to integrate people-centred changes amidst complex diagnoses and advanced life-sustaining treatments. Methods Retrospective review of PC referral database between January and December 2022 was conducted, analysed on referral pathway, reviewed with decision-making process, patient demographics and outcome. Results The nurse-led service with ad hoc informal visits to offer PC support following requests from medical team was reorganised since service-level agreement for paediatric PC consultant attendance at our weekly complex care multidisciplinary meetings. Departmental education sessions and trust governance events were platforms to promote staff awareness on service and enhance referral pathway. PC referrals were made for 23 children(M:F 1.3:1), median age 13.8 months (range 10days -16.8years), under categories of life-limiting diagnoses (n=12, 52%) or acute life-threatening events (n=11, 48%), including resuscitative extracorporealmembrane-oxygenation.(Graph 1) Median time from admission to PC referral was 59 days (range 6-162) prior to standardised referral proforma in May2022, this reduced to 36 days (range -35 to 68) and 6 days (range 3-30) per 4-month period. One referral was made 5 weeks prior to an international repatriation for child with life-limiting diagnosis on long-term ventilation. Completed referral forms sent to a designated email address were passed onto PC consultants and clinical nurse specialist. Dedicated weekly PC days provided introductory 'meet-andgreet', follow-up 'check-in' or semi-structured meeting with PC team members for patients, families and staff. PC-led multidisciplinary meetings (including 2 online) were followed by real-time correspondence to medical and nursing staff with feedback, recommendations and action plan. 4 advanced care plans and 3 symptom management plans were completed; 9 hospice and 5 community care nursing team referrals were made whilst 2 families declined hospice. Median hospital length of stay was 69 days (range 6-390). 5 children survived to hospital discharge (3 died at home), and 8 are still in hospital (1 as heart transplant recipient). Conclusion Integrative culture during reorganisation can positively influence paediatric PC referrals. Event-triggered and diagnosis-based cues may help foster PC participation as continuing strategy to respond with support during disease, treatment and psychosocial burden for children and families.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.50</a>
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).
2023
Adolescent
Aidoo E
apparent life threatening event
Archives of Disease in Childhood
Artificial Ventilation
Awareness
Chan-Dominy A
Child
Clinical Article
Clinical Nurse Specialist
community care
conference abstract
Consultation
Controlled Study
Decision Making
Demographics
Diagnosis
E-mail
Education
Female
Follow Up
Freitas D
heart graft
Hospice
hospital discharge
Human
Infant
Length Of Stay
Life Sustaining Treatment
Male
Nkulu G
Nurse
Nursing Staff
October List 2031
organizational restructuring
outcome assessment
Oxygenation
Palliative Care
Palliative Therapy
Patient Referral
Pediatric Intensive Care Unit
Practice Guideline
Quality Of Life
Retrospective Study
Subhash S
Surgery
Trust
writing
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1089/pmr.2021.0005" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/pmr.2021.0005</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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Care Provider Behaviors That Shape Parent Identity as a "Good Parent" to Their Seriously Ill Child
Publisher
An entity responsible for making the resource available
Palliative Medicine Reports
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
child; United States; article; female; hospital admission; human; male; priority journal; quality of life; palliative therapy; hospice; Europe; parent; interpersonal communication; legal guardian; patient comfort; physician; child parent relation; demographics; care behavior; health belief; voice; nurse; medical decision making; encouragement; reassurance
Creator
An entity primarily responsible for making the resource
Neumann ML; Weaver MS; Lord B; Wiener L; Hinds PS
Description
An account of the resource
Full text linksCite Abstract Background: Parents of medically complex children hold deeply personal definitions of how to be "good parents" that guide their medical decision making and interactions with providers and are impacted by provider behaviors. Objective: This study explored whether and how these beliefs are shaped by interactions with care providers and which provider behaviors foster or impede parents' ability to achieve their "good parent" definitions. Methods: A 63-item web-based survey distributed by an online support network for parents of medically complex children. Responses to closed- and open-ended questions from 67 caregivers based in the United States and Europe were analyzed. Results: Respondents' medical decisions are driven by goals of unselfishly doing what is best for my child (61%) and being my child's voice (18%). Almost half indicated that their personal "good parent" definition was impacted by provider behaviors or interactions with physicians or nurses. Although most parents reported wanting trusted care providers to ask them about their personal "good parent" definition, only 7% had ever been directly asked by members of their care teams about this topic. Provider behaviors such as kind and caring interactions, acknowledging the parents' role in caring for the child, and truly seeing the child as more than a diagnosis were reported as fostering caregivers' ability to achieve their "good parent" beliefs. Conclusions: The findings indicate that trusted provider-initiated conversations about "good parent" beliefs would be well received and are an opportunity to improve family-centered care. Care provider behaviors deemed by parents as supportive facilitate their efforts to achieve their "good parent" beliefs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/pmr.2021.0005" target="_blank" rel="noreferrer noopener">10.1089/pmr.2021.0005</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).
2021
Article
August List 2041
care behavior
Child
Child Parent Relation
Demographics
encouragement
Europe
Female
Health Belief
Hinds PS
Hospice
Hospital Admission
Human
Interpersonal Communication
legal guardian
Lord B
Male
Medical Decision Making
Neumann ML
Nurse
Palliative Medicine Reports
Palliative Therapy
Parent
Patient Comfort
Physician
Priority Journal
Quality Of Life
reassurance
United States
Voice
Weaver MS
Wiener L
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1001/jamapediatrics.2023.1602" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamapediatrics.2023.1602</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
Goals of Care Among Parents of Children Receiving Palliative Care
Publisher
An entity responsible for making the resource available
JAMA Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Palliative Care; article; cohort analysis; controlled study; human; major clinical study; male; chronic disease; Patient Care Planning; quality of life; palliative therapy; comfort; demographics; life extension
Creator
An entity primarily responsible for making the resource
Feudtner C; Beight LJ; Boyden JY; Hill DL; Hinds PS; Johnston EE; Friebert SE; Bogetz JF; Kang TI; Hall M; Nye RT; Wolfe J
Description
An account of the resource
Importance: While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known. <br/>Objective(s): To determine parental prioritization of GOCs and patterns of change over time for parents of children receiving palliative care. <br/>Design, Setting, and Participant(s): A Pediatric Palliative Care Research Network's Shared Data and Research cohort study with data collected at 0, 2, 6, 12, 18, and 24 months in hospital, outpatient, or home settings from April 10, 2017, to February 15, 2022, at 7 PPC programs based at children's hospitals across the US. Participants included parents of patients, birth to 30 years of age, who received PPC services. Exposures: Analyses were adjusted for demographic characteristics, number of complex chronic conditions, and time enrolled in PPC. Main Outcomes: Parents' importance scores, as measured using a discrete choice experiment, of 5 preselected GOCs: seeking quality of life (QOL), health, comfort, disease modification, or life extension. Importance scores for the 5 GOCs summed to 100. <br/>Result(s): A total of 680 parents of 603 patients reported on GOCs. Median patient age was 4.4 (IQR, 0.8-13.2) years and 320 patients were male (53.1%). At baseline, parents scored QOL as the most important goal (mean score, 31.5 [SD, 8.4]), followed by health (26.3 [SD, 7.5]), comfort (22.4 [SD, 11.7]), disease modification (10.9 [SD, 9.2]), and life extension (8.9 [SD, 9.9]). Importantly, parents varied substantially in their baseline scores for each goal (IQRs more than 9.4), but across patients in different complex chronic conditions categories, the mean scores varied only slightly (means differ 8.7 or less). For each additional study month since PPC initiation, QOL was scored higher by 0.06 (95% CI, 0.04-0.08) and comfort scored higher by 0.3 (95% CI, 0-0.06), while the importance score for life extension decreased by 0.07 (95% CI, 0.04-0.09) and disease modification by 0.02 (95% CI, 0-0.04); health scores did not significantly differ from PPC initiation. <br/>Conclusions and Relevance: Parents of children receiving PPC placed the highest value on QOL, but with considerable individual-level variation and substantial change over time. These findings emphasize the importance of reassessing GOCs with parents to guide appropriate clinical intervention.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jamapediatrics.2023.1602" target="_blank" rel="noreferrer noopener">10.1001/jamapediatrics.2023.1602</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).
2023
Article
August List 2032
Beight LJ
Bogetz JF
Boyden JY
Child
Chronic Disease
Cohort Analysis
Comfort
Controlled Study
Demographics
Feudtner C
Friebert SE
Hall M
Hill DL
Hinds PS
Human
JAMA Pediatrics
Johnston EE
Kang TI
life extension
Major Clinical Study
Male
Nye RT
Palliative Care
Palliative Therapy
Patient Care Planning
Quality Of Life
Wolfe J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
June 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="https://www.ejgm.co.uk/download/the-efficacy-of-educational-interventions-on-neonatal-intensive-care-unit-nurses-knowledge-and-12902.pdf">https://www.ejgm.co.uk/download/the-efficacy-of-educational-interventions-on-neonatal-intensive-care-unit-nurses-knowledge-and-12902.pdf</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
The efficacy of educational interventions on neonatal intensive care unit nurses knowledge and attitude toward neonatal palliative care
Publisher
An entity responsible for making the resource available
Electronic Journal of General Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
fatigue; Palliative Care; Infant Newborn; adult; article; controlled study; female; hospital admission; human; male; death; family; pain; chronic pain; palliative therapy; neonatal intensive care unit; nursing; prognosis; grief; anxiety; morphine; human experiment; nurse; scoring system; aggression; questionnaire; demographics; sedation; nausea and vomiting; respiration depression; care behavior; Jordan; pretest posttest design; work experience; opiate; attitude; education program; knowledge; adjuvant therapy; analgesic activity; cocaine; drowsiness; drug dependence; educational status; electrolyte disturbance; emotional deprivation; intestine; marriage; neonatal intensive care unit attitude scale; pethidine
Creator
An entity primarily responsible for making the resource
Abuhammad S; Elayyan M; El-Bashir M
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).
Identifier
An unambiguous reference to the resource within a given context
<a href="https://www.ejgm.co.uk/download/the-efficacy-of-educational-interventions-on-neonatal-intensive-care-unit-nurses-knowledge-and-12902.pdf">10.29333/ejgm/12902</a>
2023
Abuhammad S
adjuvant therapy
Adult
Aggression
analgesic activity
anxiety
Article
Attitude
care behavior
Chronic Pain
cocaine
Controlled Study
Death
Demographics
drowsiness
drug dependence
Education Program
Educational Status
El-Bashir M
Elayyan M
electrolyte disturbance
Electronic Journal of General Medicine
emotional deprivation
Family
Fatigue
Female
Grief
Hospital Admission
Human
Human Experiment
Infant Newborn
Intestine
Jordan
June 2022 List
Knowledge
Male
Marriage
Morphine
Nausea And Vomiting
Neonatal Intensive Care Unit
neonatal intensive care unit attitude scale
Nurse
Nursing
Opiate
Pain
Palliative Care
Palliative Therapy
pethidine
pretest posttest design
Prognosis
Questionnaire
Respiration Depression
scoring system
Sedation
work experience
-
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
July 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
July List 2023
URL Address
<a href="http://doi.org/10.1016/S2666-6367%2823%2900237-3" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/S2666-6367%2823%2900237-3</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
Impact of Palliative Care Integration on End-of-Life Outcomes in Pediatric Hematopoietic Cell Transplant
Publisher
An entity responsible for making the resource available
Transplantation and Cellular Therapy
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
hematopoietic cell; palliative therapy; transplantation; anxiety; appetite; bleeding; bodily secretions; child; conference abstract; controlled study; coughing; data analysis; demographics; diarrhea; distress syndrome; do not resuscitate order; documentation; dyspnea; edema; fatigue; female; fever; hospice; human; human cell; intubation; irritability; lifespan; major clinical study; male; medical record review; nausea and vomiting; pain; Palliative Care; quality of life; retrospective study; surgery; survival; terminal care
Creator
An entity primarily responsible for making the resource
Levine DR; Cuviello A; Baker JN
Description
An account of the resource
Introduction: Pediatric hematopoietic cell transplant (HCT) confers a high risk of morbidity and mortality and palliative care (PC) integration in HCT may improve outcomes. PC services can aid in advanced care planning, symptom management, and wholistic support for patients and their families, especially at end-of-life, yet little empiric data exists regarding the impact of PC involvement in pediatric HCT. Objective(s): Compare deceased pediatric HCT patients with and without PC involvement to identify differences in end-of-life characteristics. Method(s): Retrospective medical record review was performed for all HCT patients at St. Jude Children's Research Hospital who died between March 2008 and October 2017 (N=160). Variables collected included: demographics, PC involvement, symptom and end-of-life characteristics. Data analysis included descriptive statistics and tests of significance. Result(s): Of 160 deceased HCT patients PC involvement was present in 115 (71.9%) compared to 45 (28.1%) with no PC. No significant differences in demographic characteristics were noted between the 2 groups. Longer survival duration from HCT to death was noted in patients who received PC whose mean death was 305.5 days after HCT (median 189, range 10-2,834) as compared to a mean of 228.8 days between HCT and death in the no PC group (median 129, range 13-1,444) (p=0.047). Significant differenced were noted in which patients with PC involvement were more likely to have a DNR order (PC n=76 74.5%, NPC n=16 48.5% p=.005), less likely to be intubated in the last 24 hours of life (PC n=36 34%, NPC n=21 60% p=.006), and more likely to have been enrolled in hospice (PC n=38 33%, NPC n=4 8.9% p=.002). Documentation of distressing symptoms in the last month of life was higher in the PC group with notable symptom burden in both groups. Most frequently documented symptoms overall were pain (95.3%), fatigue (83.2%), fever (80.0%), edema (78.0%), bleeding (66.9%), diarrhea (65.6%), poor appetite (65.3%), anxiety (63.4%), nausea/ vomiting (58.9%), dyspnea (58.5%), secretions (57.4%), irritability (48.0%), and cough (47.5%). Conclusion(s): PC integration in pediatric HCT likely results in improved end-of-life care by way of enhanced advanced care planning, decreased intubation and resuscitative events, and increased hospice enrollment. PC integration in HCT does not lead to shorter life spans and may improve quality of life via enhanced symptom recognition and management.Copyright © 2023 American Society for Transplantation and Cellular Therapy
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/S2666-6367%2823%2900237-3" target="_blank" rel="noreferrer noopener">10.1016/S2666-6367%2823%2900237-3</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).
2023
anxiety
Appetite
Baker JN
bleeding
bodily secretions
Child
conference abstract
Controlled Study
coughing
Cuviello A
Data Analysis
Demographics
Diarrhea
Distress Syndrome
do not resuscitate order
Documentation
Dyspnea
edema
Fatigue
Female
fever
hematopoietic cell
Hospice
Human
human cell
Intubation
Irritability
July List 2023
Levine DR
Lifespan
Major Clinical Study
Male
Medical Record Review
Nausea And Vomiting
Pain
Palliative Care
Palliative Therapy
Quality Of Life
Retrospective Study
Surgery
Survival
Terminal Care
Transplantation
Transplantation and Cellular Therapy
-
Dublin Core
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Title
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May 2023 List
Text
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Citation List Month
May List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.02.006" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.02.006</a>
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Title
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The Landscape of Outpatient Pediatric Palliative Care: A National Cross-Sectional Assessment
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Journal of Pain and Symptom Management
Date
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2023
Subject
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outpatient; palliative therapy; program development; advance care planning; analgesia; article; Cesarean Section; child; controlled study; demographics; funding; hospital patient; human; Palliative Care; patient referral; school child; United States; workflow
Creator
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Autrey AK; James C; Mothi SS; Stafford C; Morvant A; Miller EG; Kaye EC
Description
An account of the resource
Abstract Context: Inpatient pediatric palliative care (PPC) has grown substantially over the past 20 years; however, PPC in the outpatient setting remains underdeveloped. Outpatient PPC (OPPC) offers opportunities to improve access to PPC as well as facilitate care coordination and transitions for children with serious illness. Objectives: This study aimed to characterize the national status of OPPC programmatic development and operationalization in the United States. Methods: Utilizing a national report, freestanding children's hospitals with existing PPC programs were identified to query OPPC status. An electronic survey was developed and distributed to PPC participants at each site. Survey domains included hospital and PPC program demographics; OPPC development, structure, staffing, and workflow; metrics of successful OPPC implementation; and other services/partnerships. Results: Of 48 eligible sites, 36 (75%) completed the survey. Clinic-based OPPC programs were identified at 28 (78%) sites. OPPC programs reported a median age of 9 years [range: 1-18 years] with growth peaks in 2011, 2012 and 2020. OPPC availability was significantly associated with increased hospital size [p= 0.05] and inpatient PPC billable full time equivalent staff [p= 0.01]. Top referral indications included pain management, goals of care, and advance care planning. Funding primarily came from institutional support and billing revenue. Conclusions: Although OPPC remains a young field, many inpatient PPC programs are growing into the outpatient setting. Increasingly, OPPC services have institutional support and diverse referral indications from multiple subspecialties. However, despite high demand, resources remain limited. Characterization of the current OPPC landscape is crucial to optimize future growth.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2023.02.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.02.006</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Advance Care Planning
Analgesia
Article
Autrey AK
Cesarean Section
Child
Controlled Study
Demographics
Funding
Hospital Patient
Human
James C
Journal of Pain and Symptom Management
Kaye EC
May List 2023
Miller EG
Morvant A
Mothi SS
Outpatient
Palliative Care
Palliative Therapy
Patient Referral
Program Development
School Child
Stafford C
United States
workflow
-
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/jpc.16354" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jpc.16354</a>
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Title
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How Do Hospitalised Children Die? The Context of Death and End-Of-Life Decision-Making
Publisher
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Journal of Paediatrics and Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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intensive care unit; Child; child; Decision Making; article; controlled study; female; human; major clinical study; male; resuscitation; retrospective study; palliative therapy; observational study; advance care planning; documentation; Only Child; nervous system; life sustaining treatment; cardiovascular disease; respiratory tract disease; infant; drug withdrawal; demographics; medical record; hospitalized child; pediatric patient; decision making; childhood mortality; treatment withdrawal
Creator
An entity primarily responsible for making the resource
Serrano-Pejenaute I; Carmona-Nunez A; Zorrilla-Sarriegui A; Martin-Irazabal G; Lopez-Bayon J; Sanchez-Echaniz J; Astigarraga I
Identifier
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<a href="http://doi.org/10.1111/jpc.16354" target="_blank" rel="noreferrer noopener">10.1111/jpc.16354</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).
2023
Advance Care Planning
April List 2023
Article
Astigarraga I
Cardiovascular Disease
Carmona-Nunez A
Child
Childhood Mortality
Controlled Study
Decision Making
Demographics
Documentation
Drug Withdrawal
Female
Hospitalized Child
Human
Infant
Intensive Care Unit
Journal of Paediatrics and Child Health
Life Sustaining Treatment
Lopez-Bayon J
Major Clinical Study
Male
Martin-Irazabal G
Medical Record
Nervous System
Observational Study
Only Child
Palliative Therapy
pediatric patient
Respiratory Tract Disease
Resuscitation
Retrospective Study
Sanchez-Echaniz J
Serrano-Pejenaute I
Treatment Withdrawal
Zorrilla-Sarriegui A
-
Dublin Core
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Title
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November 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
November 2022 List
URL Address
<a href="http://doi.org/10.1016/j.ajogmf.2022.100725" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.ajogmf.2022.100725</a>
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Title
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Patient-Centered Perinatal Palliative Care: Family Birth Plans, Outcomes, and Resource Utilization in a Diverse Cohort
Publisher
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American Journal of Obstetrics & Gynecology MFM
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Article; Child; Cohort Analysis; Comfort; Consultation; Controlled Study; Demographics; Expectation; Female; Fetus; Fetus Malformation; Hospice; Human; Income Group; Infant; Newborn; Outcome Assessment; Palliative Therapy; Postpartum Hemorrhage; Prenatal Diagnosis; Prognosis; Retrospective Study; Trisomy 13
Creator
An entity primarily responsible for making the resource
Buskmiller C; Ho S; Chen M; Gants S; Crowe E; Lopez S
Description
An account of the resource
BACKGROUND: Perinatal palliative care (PPC) is an emerging concept in fetal medicine that offers quality of life options and anticipatory grief management for families of fetuses with complex conditions. Few PPC outcomes are detailed in peer-reviewed literature. OBJECTIVE(S): We aimed to describe outcomes of PPC at UT Fetal Center and Women and Infants Services at Children's Memorial Hermann. STUDY DESIGN: This is a retrospective cohort of families receiving PPC for life-limiting fetal diagnosis, such as trisomy 13 or 18 and some major structural anomalies, between 2016 and 2020. The primary outcome was whether delivery events matched families' birth plans, including fetal/neonatal clinical course matching expectations described by consultant notes. Secondary outcomes included maternal safety outcomes, use of perinatal interventions, delivery outcomes, and resource utilization outcomes. RESULT(S): Of 187 PPC consults, delivery events matched families' plans and clinicians' expectations in 89% of cases (165/185). 39% (73/187) of families requested some perinatal interventions, 64% of whom planned postnatal comfort care even while choosing antenatal interventions. Demographics and median income were similar between families who chose some interventions and those who chose comfort care. Patients choosing any interventions had more mismatches between their plans and delivery events (19% vs 2%, p < 0.001), were more likely to change their plans (24% vs 6%, p=0.001), and not unexpectedly used more healthcare resources. They were also more likely to have intraamniotic infection and postpartum hemorrhage (9% vs 22%, p=0.02), but this was associated with mode of delivery and not choice of interventions. CONCLUSION(S): Most families' perinatal experiences matched birth plans and expectations in this PPC program. Families who desired interventions used more healthcare resources, but often did so with plans for postnatal comfort care, demonstrating insight into neonatal prognosis but achieving value-consistent goals, like meeting a live neonate. PPC was safe for maternal patients and equitable across racial, ethnic, and income groups. PPC and some perinatal interventions are options for care of the whole family in complex fetal medicine.Copyright © 2022 Elsevier Ltd. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ajogmf.2022.100725" target="_blank" rel="noreferrer noopener">10.1016/j.ajogmf.2022.100725</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).
Article
Child
Female
Fetus
Infant
Newborn
2022
American Journal of Obstetrics & Gynecology MFM
Buskmiller C
Chen M
Cohort Analysis
Comfort
Consultation
Controlled Study
Crowe E
Demographics
Expectation
Fetus Malformation
Gants S
Ho S
Hospice
Human
income group
Lopez S
November 2022 List
outcome assessment
Palliative Therapy
postpartum hemorrhage
Prenatal Diagnosis
Prognosis
Retrospective Study
Trisomy 13
-
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 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
October 2022 List
URL Address
<a href="http://doi.org/10.1016/j.pedn.2022.07.002">http://doi.org/10.1016/j.pedn.2022.07.002</a>
Dublin Core
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Title
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A Investigation into Hope, Self-Efficacy, Distress and Uncertainty in Parents Who Have A Child with A Life-Threatening or Life-Limiting Illness
Publisher
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Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Children; Families; Hope; Life-limiting illness; Life-threatening illness; Self-efficacy; article; care; behavior; caregiver; child; controlled study; demographics; distress; syndrome; exploratory; research; financial management; human; parental leave; pediatric; nurse; quantitative analysis; self concept; uncertainty
Creator
An entity primarily responsible for making the resource
Spurr S; Bally J; Burles M; McHaro K
Description
An account of the resource
PURPOSE: To examine the experiences of parents who are caring for a child with a life-threatening or life-limiting illness (LTI/LLI) including levels of uncertainty, distress, hope, and self-efficacy to determine if there are significant variations with respect to demographic characteristics. DESIGN AND METHODS: Data for this analysis are derived from a quasi-experimental evaluation of a support intervention with a purposeful sample of parental caregivers from a western Canadian province. Participants completed a demographic survey and four quantitative measures at baseline and following use of the support intervention. RESULT(S): Many parents had high scores of hope and self-efficacy, with highest levels of hope amongst parents who could stay at home with their children, and higher self-efficacy expressed by parents without financial concerns. Increased levels of uncertainty and distress were found amongst parents without other children living in the home, and those with financial concerns, respectively. CONCLUSION(S): This exploratory analysis found that many parents experienced clinically significant distress along with uncertainty. The results determined that caring for children in the home other than the ill child significantly decreased uncertainty. High levels of parental hope and self-efficacy were frequently identified, with variations reflecting differences in social roles and stressors. The results contribute to an increased understanding of the value of support resources including parental leave and financial support. PRACTICE IMPLICATIONS: Pediatric nurses may consider adopting an approach to caring for families with children in treatment for LLIs/LTIs that gives high priority to promoting hope and self-efficacy while ensuring access to support resources. Copyright © 2022 Elsevier Inc. All rights reserved.
Identifier
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<a href="http://doi.org/10.1016/j.pedn.2022.07.002">10.1016/j.pedn.2022.07.002</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Article
Bally J
Behavior
Burles M
CARE
Caregiver
Child
Children
Controlled Study
Demographics
Distress
exploratory
Families
financial management
Hope
Human
Journal of Pediatric Nursing
life-limiting illness
Life-threatening illness
McHaro K
Nurse
October 2022 List
parental leave
Pediatric
quantitative analysis
Research
Self Concept
Self-efficacy
Spurr S
Syndrome
Uncertainty
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
Dublin Core
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Title
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Characteristics of a pediatric hospice palliative care program over 15 years.
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
British Columbia/epidemiology; Child; Child Preschool; Cohort Studies; Demographics; Female; Hospice Care; Hospices/methods/trends; Humans; Life Threatening; Male; Palliative Care; Palliative Care/methods/trends; Patient Care Team/trends; Pediatrics/methods/trends; Retrospective Studies; Survival Rate/trends; Time Factors
Creator
An entity primarily responsible for making the resource
Siden H; Chavoshi N; Harvey B; Parker A; Miller T
Description
An account of the resource
OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children's Hospice (CPCH) is North America's first freestanding pediatric hospice. This study describes the characteristics of and services delivered to all children on the CPCH program from 1996 to 2010. METHODS: A retrospective review of all patient medical records CPCH was conducted. Analyses examined trends and correlations between 40 selected data points: linear regression modeling was used to assess trends over time; t tests were used to examine significant associations between independent means; and the Kaplan-Meier method was used to measure survival probabilities. RESULTS: The study cohort included 649 children. The majority of diagnoses belonged to cancers (30%), and diseases of the neuromuscular (20%), and central nervous systems (18%). The majority of deaths occurred among the cancer (45%), central nervous system (15%), and metabolic disease groups (14%). By study end date, 24% of children were still alive, 61% died, and 15% transitioned to adult services (more than half of whom were cognitively competent). On average, 1024 days were spent on the CPCH program (median = 301). The majority of inpatient hospice discharges were for respite (82%); only 7% were for end-of-life care. Location of death was shared between CPCH (61%), hospital (22%), and home (16%). CONCLUSIONS: Diagnostic groups largely determine the nature and magnitude of services used, and our involvement with pediatric life-threatening conditions is increasing. Reviews of pediatric palliative programs can help evaluate the services needed by the population served.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2014-0381" target="_blank" rel="noreferrer">10.1542/peds.2014-0381</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).
2014
British Columbia/epidemiology
Chavoshi N
Child
Child Preschool
Cohort Studies
Demographics
Female
Harvey B
Hospice Care
Hospices/methods/trends
Humans
Life Threatening
Male
Miller T
Palliative Care
Palliative Care/methods/trends
Parker A
Patient Care Team/trends
Pediatrics
Pediatrics/methods/trends
Retrospective Studies
Siden H
Survival Rate/trends
Time Factors
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Dying Later, Surviving Longer
Publisher
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Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Life; Pediatrics; Child; Death; Mortality; Decision Making; Intensive Care; Chronic Illnesses; Pain; Demographics; Children & Youth
Epidemiology; Ethics; Intensive Care; Mortality
Creator
An entity primarily responsible for making the resource
Wilkinson D; J Weitz
Description
An account of the resource
Most children who die in the UK have an underlying chronic illness, and the majority of these deaths take place in a paediatric intensive care unit (PICU).1 The overall community burden of paediatric chronic illness is increasing as the population expands and as children with chronic conditions live longer. Improvements in public health measures, and in the recognition and management of paediatric critical illness, mean that children with chronic conditions are increasingly the majority population in PICU.
Plunkett and Parslow describe a shift in the timing of death in PICUs in England and Wales over the last decade.2 They observed an increase in the average length of stay for children who died (about 3 days longer, on average, in 2013 than in 2003) and a corresponding increase in the proportion of children dying after more than 4 weeks of intensive care; in 2013, approximately 12% of deaths in PICU occurred late (after 28 days), compared with only about 8% a decade earlier.
What should we make of this finding? Does it represent a failure of end-of-life decision-making? Plunkett and Parslow point to this, suggesting that children with life-limiting illnesses are now dying after a long PICU admission rather than experiencing an early death in PICU.
Identifier
An unambiguous reference to the resource within a given context
doi:10.1136/archdischild-2016-310637
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
Archives of Disease in Childhood
Child
Children & Youth
Chronic Illnesses
Death
Decision Making
Demographics
Epidemiology
Ethics
Intensive Care
J Weitz
July 2016 List
Life
Mortality
Pain
Pediatrics
Wilkinson D