1
40
734
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Title
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April 2024 List
Text
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Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1093/hsw/hlad037" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/hsw/hlad037</a>
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Title
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Gaining an Empathetic Insight into Parenting: Evaluating Infant Simulator Dolls for Professional Learning
Publisher
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Health and Social Work
Date
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2024
Subject
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child; Infant; human; palliative therapy; social work; child parent relation; infant; qualitative research
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Whiting L; Petty J; Roberts S; Littlechild B; Mills K
Description
An account of the resource
The development of an empathetic approach when working with parents and families is fundamental to both social work and children's nursing; however, opportunities to develop this are limited. RealCare Baby infant simulator dolls were used with the aim of enabling students to gain an empathetic insight into parenting. A qualitative, evaluation study involving semistructured interviews with 10 social work and 11 children's nursing students was undertaken to evaluate experiences and views of infant simulator dolls, in relation to professional learning. Using reflexive thematic analysis of interview data, six key themes were identified: (1) positive experiences, (2) challenges, (3) impact on self, (4) empathy toward parents, (5) realism and (6) learning by reflection. All themes were evident from the participants' accounts in the context of the parenting experience. In addition to the overall positive impact on students, practical and technical challenges were also identified. However, despite these difficulties, participants valued the learning experience gained from caring for a doll and many articulated how an empathetic understanding of the parenting role was enhanced. This will potentially enable social work and children's nursing students to support parents more sensitively and empathetically.
Identifier
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<a href="http://doi.org/10.1093/hsw/hlad037" target="_blank" rel="noreferrer noopener">10.1093/hsw/hlad037</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
April List 2024
Child
Child Parent Relation
Health and Social Work
Human
Infant
Littlechild B
Mills K
Palliative Therapy
Petty J
Qualitative Research
Roberts S
Social Work
Whiting 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 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/10.1136/archdischild-2017-314414" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2017-314414</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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When paediatricians and families can't agree
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
2018
Subject
The topic of the resource
child; human; ethics; preschool child; terminal care; United Kingdom; medical ethics; treatment outcome; infant; conflict; treatment withdrawal; child health care; experimental therapy
Creator
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Wallis C
Description
An account of the resource
Recent high-profile cases have highlighted the difficulties that professionals caring for terminally ill or technology dependent children face. I am a paediatrician. I see children with severe problems, often chronic and frequently without a cure, and I try as far as possible to help them and their families. Occasionally there is science and evidence behind the decisions we make, but not always. Medicine does have its black and white disciplines—it is either cancer or it isn’t; or you either need to have an operation or you don’t. But paediatrics is often a discipline of uncertainty dealing with many shades of grey. Paediatricians learn to live with uncertainty and similarly have to support parents and young people to accept this uncertainty. Sometimes we have to wait for nature to reveal itself or for the future to unfold as it should. Herein lies the art of paediatrics: the ability to watch and wait, intervening in a timely fashion when required to do so and recognising the sad eventuality of having to let go of life at times. This is our craft: to do what is in the child’s best interests and use therapies that will help with life’s quality but not unnecessarily prolong inevitable death. However there are competing interests in this delicate balance in doing what is right for the child. Juggling our way along the best route required in reaching the best outcome for the child makes my opening paragraphs easier said than done. First there is medical technology, what we can do, with advances developing at a breakneck speed. Home ventilation, home total parenteral nutrition, home dialysis and transplants are all now commonplace and can sustain life in children in whom death would otherwise have been inevitable. Gene editing and small molecule therapies have the potential to change the …
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2017-314414" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-314414</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
April List 2024
Archives of Disease in Childhood
Child
Child Health Care
Conflict
Ethics
Experimental Therapy
Human
Infant
Medical Ethics
Preschool Child
Terminal Care
Treatment Outcome
Treatment Withdrawal
United Kingdom
Wallis C
-
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
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/10.7748/ns.31.23.15.s16" target="_blank" rel="noreferrer noopener"> http://doi.org/10.7748/ns.31.23.15.s16</a>
Dublin Core
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Title
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End of life care for infants, children and young people with life-limiting conditions
Publisher
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Nursing standard
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
child; Infant; pediatrics; Terminal Care; terminal care; article; childhood mortality; human; child health; palliative therapy; infant; college; Western Europe
Creator
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Pearce L
Description
An account of the resource
Essential facts According to the Royal College of Paediatrics and Child Health, the UK has one of the worst child mortality rates in western Europe, with more than 2,000 children and young people dying in 2012. In addition, it is estimated that about 50,000 children and young people in the UK have a life-limiting condition that may need palliative care.
Identifier
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<a href="http://doi.org/10.7748/ns.31.23.15.s16" target="_blank" rel="noreferrer noopener">10.7748/ns.31.23.15.s16</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
April List 2024
Article
Child
Child Health
Childhood Mortality
college
Human
Infant
Nursing Standard
Palliative Therapy
Pearce L
Pediatrics
Terminal Care
Western Europe
-
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
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Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1093/pch/pxz066.129" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/pch/pxz066.129</a>
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Title
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Survival, short-term morbidity of extremely low gestational age infants and their predictors
Publisher
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Paediatrics and Child Health
Date
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2019
Subject
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Infant; sepsis; cohort analysis; controlled study; female; human; male; retrospective study; perception; palliative therapy; Pregnancy; stillbirth; gender; necrotizing enterocolitis; clinical article; gestational age; neonatal intensive care unit; prevalence; infant; conference abstract; birth weight; corticosteroid; length of stay; mortality risk; Gestational Age; brain hemorrhage; regression analysis; univariate analysis; survival prediction; encephalomalacia; morbidity; lung dysplasia; probability; retrolental fibroplasia
Creator
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Kis H; Lemyre B; Radonjic A; Feberova J
Description
An account of the resource
BACKGROUND: Despite advances in neonatal care for extremely low gestational age (ELGA) infants, they experience high rates of mortality and morbidity. Local data on survival, predictors, and outcomes of ELGA infants is crucial in order to provide accurate antenatal counseling. <br/>OBJECTIVE(S): To determine the survival and morbidities of ELGA infants in our region stratified by gestational age. DESIGN/METHODS: We performed a retrospective cohort study of infants born at <26 weeks gestational age who received intensive care at two level III Neonatal Intensive Care Units between January 1st 2014 and December 31st 2017. We excluded stillbirths and infants who received only palliative care from birth. Outcomes included survival to discharge home (or transfer to another center), length of admission, and the following short-term morbidities: intraventricular hemorrhage (IVH) grade III - IV, periventricular leukomalacia (PVL), bronchopulmonary dysplasia (BPD), necrotizing enterocolitis (NEC) Bell's Stage >=2, late-onset sepsis, and retinopathy of prematurity (ROP) requiring treatment. A multivariable regression analysis was performed to analyze three factors identified as significant (p<.05) on univariate analysis. <br/>RESULT(S): 117 infants were included: 8 infants at 22 weeks, 20 at 23 weeks, 38 at 24 weeks, and 51 at 25 weeks. The rates of survival were 37.5%, 50.0%, 68.4%, and 76.5% at 22, 23, 24, and 25 weeks, respectively. The probability of survival was similar for infants born at 22 and 23 weeks GA and significantly lower than for infants born at 24 and 25 weeks (fig.1). The mean (+/-SD) length of stay in the NICU was 114.6 +/- 33.7 days. The overall prevalence of short-term morbidities was 25.9% for IVH grade III - IV, 5.4% for PVL, 89.9% for BPD, 16.1% for NEC, 40.0% for late-onset sepsis, and 19.3% for ROP requiring treatment. Only 2.7% of infants who survived >=36 weeks (post-menstrual age) had no short-term morbidities. The multivariable regression analysis demonstrated: an increased risk of mortality for every 100g decrease in birth weight (OR=1.97; 95% CI: 1.40 - 1.98; p =.02), an increased risk of mortality for an incomplete course of antenatal corticosteroids (OR=1.58; 95% CI: 1.2 - 1.78; p =.008), and no effect of gender on mortality over time (OR=1.38; 95% CI: 0.8 - 1.68; p=.15). <br/>CONCLUSION(S): ELGA infants from our region faced similarly high rates of mortality and major short-term morbidity compared to other Canadian centers. Infants born at 22 and 23 weeks experienced similar survival trajectories, which should be further explored as it may influence clinical perceptions of viability at 22 weeks. (Figure Presented).
Identifier
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<a href="http://doi.org/10.1093/pch/pxz066.129" target="_blank" rel="noreferrer noopener">10.1093/pch/pxz066.129</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
April List 2024
Birth Weight
brain hemorrhage
Clinical Article
Cohort Analysis
conference abstract
Controlled Study
Corticosteroid
encephalomalacia
Feberova J
Female
Gender
Gestational Age
Human
Infant
Kis H
Lemyre B
Length Of Stay
lung dysplasia
Male
Morbidity
mortality risk
Necrotizing Enterocolitis
Neonatal Intensive Care Unit
Paediatrics And Child Health
Palliative Therapy
Perception
Pregnancy
Prevalence
Probability
Radonjic A
Regression Analysis
retrolental fibroplasia
Retrospective Study
Sepsis
Stillbirth
survival prediction
univariate analysis
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1016/j.cppeds.2024.101569" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.cppeds.2024.101569</a>
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Title
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How to move forward in shared decision-making in pediatric palliative care
Publisher
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Current Problems in Pediatric and Adolescent Health Care
Date
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2024
Subject
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child; Palliative Care; Decision Making; article; human; palliative therapy; clinical article; adolescent; therapy; infant; shared decision making; special situation for pharmacovigilance
Creator
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Joren CY; Aris-Meijer JL; Verhagen AAE; Lantos J
Description
An account of the resource
Pediatric palliative care has grown immensely in recent years in the world. However, shared decision-making remains a complex process, especially in pediatric palliative care. In particular, a number of issues are priorities to improve the shared decision-making process and ensure high-quality pediatric palliative care for every child. Working on these priorities will improve shared decision-making and thereby enhance high-quality pediatric palliative care around the globe.
Identifier
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<a href="http://doi.org/10.1016/j.cppeds.2024.101569" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2024.101569</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Adolescent
April List 2024
Aris-Meijer JL
Article
Child
Clinical Article
Current Problems in Pediatric and Adolescent Health Care
Decision Making
Human
Infant
Joren CY
Lantos J
Palliative Care
Palliative Therapy
shared decision making
special situation for pharmacovigilance
Therapy
Verhagen AAE
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Dublin Core
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Title
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April 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1111/apa.16981" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.16981</a>
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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
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<a href="http://doi.org/10.1111/apa.16981" target="_blank" rel="noreferrer noopener">10.1111/apa.16981</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
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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March 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March List 2024
URL Address
<a href="http://doi.org/10.1097/ANC.0000000000001143" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/ANC.0000000000001143</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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Palliative Care in the Neonatal Intensive Care Unit: An Evolutionary Concept Analysis of Uncertainty in Anticipated Loss
Publisher
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Advances in Neonatal Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
concept analysis; neonatal intensive care unit; newborn intensive care; palliative therapy; uncertainty; article; complication; confusion; diagnosis; drug administration; genetic disorder; genetic screening; human; infant; Infant Newborn; neonatal nurse; nurse; Palliative Care; prognosis
Creator
An entity primarily responsible for making the resource
Lenington K; Dudding KM; Fazeli PL; Dick T; Patrician P
Description
An account of the resource
Background: Although the concepts of uncertainty and anticipated loss have been explored in a variety of contexts, advances in genetic testing and life-sustaining technology rendered changes in the care of medically complex infants. The separate concepts no longer have the descriptive power to clarify new phenomena endured by parents in the changing neonatal landscape. A current concept analysis examining uncertainty in anticipated loss is necessary to generate knowledge concurrently with deviations observed in the neonatal intensive care unit. Purpose: To explore the concept of uncertainty in anticipated loss among parents of infants with genetic disorders. Methods: Following Rodgers' method of concept analysis, the concept was named, surrogate terms, antecedents, attributes, and consequences were identified from the literature, and a model case was constructed. The databases CINAHL, PubMed, and PsycINFO were used to conduct the literature search. Results: Fifteen articles provided the data for this analysis. Uncertainty in anticipated loss is a complex, nonlinear, and multifaceted experience anteceded by an ultimately terminal diagnosis, an ambiguous prognosis, and a lack of clear knowledge to guide treatment. Its attributes include a loss of control, assumptive world remodeling, role/identity confusion, and prolonged emotional complexity that consequently leads to a cyclical pattern of positive and negative outcomes. Implications: This newly defined concept empowers neonatal nurses to provide care that includes a holistic understanding of the experience of uncertainty in anticipated loss. Nurses are ideally positioned and have the responsibility to utilize this concept to become better advocates for infants and facilitators of parental wellness.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/ANC.0000000000001143" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000001143</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
Advances in Neonatal Care
Article
Complication
Concept analysis
Confusion
Diagnosis
Dick T
Drug Administration
Dudding KM
Fazeli PL
Genetic Disorder
genetic screening
Human
Infant
Infant Newborn
Lenington K
March List 2024
Neonatal Intensive Care Unit
Neonatal Nurse
Newborn Intensive Care
Nurse
Palliative Care
Palliative Therapy
Patrician P
Prognosis
Uncertainty
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March List 2024
URL Address
<a href="http://doi.org/10.1097/NJH.0000000000000985" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/NJH.0000000000000985</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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Palliative Care for Infants in the Neonatal Intensive Care Unit: A Scoping Review
Publisher
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Journal of Hospice and Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
hospice care; nursing care; child parent relation; human; infant; Infant; Infant Newborn; Intensive Care Units; neonatal intensive care unit; newborn; Palliative Care; palliative therapy; psychology
Creator
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Kim ES; Kim S; Ahn SY; Lee H
Description
An account of the resource
This scoping review aimed to explore the characteristics of neonatal palliative care in the neonatal intensive care unit, including the features, contents, and experiences of infants, parents, and nurses during palliative care. Five databases (PubMed, Cochrane, CINAHL, Research Information Sharing Service, and Korean Studies Information Service System) were searched to identify relevant articles published between 2011 and 2020. From the systematic search and review process, 13 studies that met the eligibility criteria were selected for the analysis. From the literature review, 2 key principles were found to facilitate neonatal palliative care: family-centered care and integrative care in the neonatal intensive care unit. In addition, the themes found in this review included (1) providing comfortable care to dying infants with respect to infants and offering parents choices, (2) therapeutic communication, (3) support with respect, and (4) bereavement care for parents of dying infants in the neonatal intensive care unit. Caregivers require effective communication, manpower support, emotional support, educational programs, and well-defined protocols. The evidence mapped and synthesized in this review indicates the need to facilitate the provision of palliative care in the neonatal intensive care unit in line with the unique needs of infants, parents, and nurses.
Identifier
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<a href="http://doi.org/10.1097/NJH.0000000000000985" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000985</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
Ahn SY
Child Parent Relation
Hospice Care
Human
Infant
Infant Newborn
Intensive Care Units
Journal of Hospice and Palliative Nursing
Kim ES
Kim S
Lee H
March List 2024
Neonatal Intensive Care Unit
Newborn
Nursing Care
Palliative Care
Palliative Therapy
Psychology
-
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Title
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March 2024 List
Text
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Citation List Month
March List 2024
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Title
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Family-Centered Culture Care: Touched by an Angel
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Journal of Clinical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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ethics; mental stress; morality; psychology; religion; attitude to death; child; cultural anthropology; empathy; ethnology; family nursing; Hinduism; human; human relation; Impatiens; infant; newborn; nursing staff; Touch; treatment refusal
Creator
An entity primarily responsible for making the resource
Hernandez JA
Description
An account of the resource
An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and evidence-based care with cultural humility when providing culturally responsive family-centered culture care. Each person's worldview is unique as influenced by culture, language, and religion, among other factors. The Nursing Team sought to understand this family's collective Indian Hindu worldview and end-of-life beliefs, values, and practices, in view of the unique aspects of the situation while the team integrated evidence-based strategies to provide family-centered culture care. Parental care choices conflicted with those of the Nursing Team, and some nurses experienced moral distress and cultural dissonance when negotiating their deeply held cultural and religious views to advocate for the family. The inability to reconcile and integrate a stressful or traumatic experience impacts nurses' well-being and contributes to compassion fatigue. Nurses need to be intentional in accessing interventions that promote coping and healing and moral resilience. Reflection and cultural humility, assessment, and knowledge in context, increase evidence-based culture care and positive outcomes. U.S. society's views on ethical behavior continue to evolve, and some may argue that the law should place more limits on parents' right to choose or to refuse treatment for their infants and children. Moral distress can lead to moral resilience and satisfaction of compassion when nurses provide family-centered culture care with cultural responsiveness and integrate values-based practice with evidence-based care, and aim to first do no harm.
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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
Attitude To Death
Child
cultural anthropology
Empathy
Ethics
ethnology
Family Nursing
Hernandez JA
Hinduism
Human
Human Relation
Impatiens
Infant
Journal of Clinical Ethics
March List 2024
Mental Stress
Morality
Newborn
Nursing Staff
Psychology
Religion
touch
Treatment Refusal
-
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Title
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March 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March List 2024
URL Address
<a href="http://doi.org/10.1136/bmj.m2502" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmj.m2502</a>
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Judge rules that baby should be removed from ventilator and given palliative care
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BMJ Clinical Research
Date
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2020
Subject
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artificial ventilation; palliative therapy; ventilator; article; human; infant; Palliative Care; Ventilators Mechanical
Creator
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Dyer C
Description
An account of the resource
An eight week old baby should no longer be kept alive on a ventilator and should be given palliative care to spare him the risk of a “painful, agonising death,” a High Court judge has declared.1 There are no further treatment options for the baby, who was referred to in court as Z, said Mr Justice Hayden. The judge was satisfied that intensive care was futile and that it had “come to place an insupportable burden” on the child. Hayden granted Sheffield Teaching Hospitals NHS Foundation Trust a declaration that it would be in the best interests of the baby to leave intensive care and to have palliative care only. The trust had hoped to reach agreement with the child’s Muslim parents and avoid a court application. But because of …
Identifier
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<a href="http://doi.org/10.1136/bmj.m2502" target="_blank" rel="noreferrer noopener">10.1136/bmj.m2502</a>
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2020
Article
Artificial Ventilation
BMJ Clinical Research
Dyer C
Human
Infant
March List 2024
Palliative Care
Palliative Therapy
ventilator
Ventilators Mechanical
-
Dublin Core
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Title
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February 2024 List
Text
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Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1097/ANC.0000000000001113" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/ANC.0000000000001113</a>
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Title
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Chinese Neonatal Nurses' Lived Experiences of Providing End-of-Life Care in the NICU: A Descriptive Phenomenological Study
Publisher
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Advances in Neonatal Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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terminal care; human; newborn; psychology; emotion; neonatal intensive care unit; infant; neonatal nurse; East Asian
Creator
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Tong-Hui S; Qi L; Xiao-Li R; Guo-Qin Y; Li-Ping W; Lin W
Description
An account of the resource
Background: Although end-of-life care (EOLC) has been well-studied, the experience of neonatal intensive care unit (NICU) nurses in China, where little EOLC training is provided, requires further investigation. Purpose: To explore the lived experience of EOLC delivery among NICU nurses, to provide evidence to enhance nurses' EOLC skills and improve their overall quality. Methods: This qualitative study adopted a phenomenological approach. A total of 11 NICU nurses participated in semistructured in-depth interviews between June and July 2022 at the First Affiliated Hospital of University of Science and Technology of China (USTC). Colaizzi's 7-step method was used to analyze the data. Results: Five main themes were identified: (a) multiple emotions are experienced during EOLC delivery; (b) EOLC delivery is stressful from various sources for nurses; (c) expressing empathy and compassion is important; (d) ethical and clinical decision-making are key components of EOLC delivery; and (e) there are challenges in improving neonatal EOLC understanding and delivery. Implications for practice and research: The experience of EOLC among Chinese NICU nurses is multidimensional and intensive. Institutions or units must establish and implement related protocols and guidelines to address differences between clinical practice and ideal protocols for neonatal EOLC. Educational programs that consider nurses' personal and interpersonal factors, including local culture, must be developed. Neonatal nurses in Western countries encountering Chinese-born parents who have lost their infants can gain an understanding of parents' perceptions from this study. Future research should focus on developing and testing interventions to train and support NICU nurses working with end-of-life neonates.
Identifier
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<a href="http://doi.org/10.1097/ANC.0000000000001113" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000001113</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
Advances in Neonatal Care
East Asian
Emotion
February List 2024
Guo-Qin Y
Human
Infant
Li-Ping W
Lin W
Neonatal Intensive Care Unit
Neonatal Nurse
Newborn
Psychology
Qi L
Terminal Care
Tong-Hui S
Xiao-Li R
-
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Title
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February 2024 List
Text
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Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1186/s12904-023-01280-8" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01280-8</a>
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Title
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Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; Canada; terminal care; article; controlled study; female; human; male; chronic disease; social support; palliative therapy; interview; parental attitude; health care policy; health care access; health service; adolescent; infant; physical activity; public health; qualitative research; coping behavior; coronavirus disease 2019; risk assessment; health status; personal experience; bereavement support; health care facility; family support; pandemic; infection control
Creator
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Rapoport A; Nicholas DB; Zulla RT
Description
An account of the resource
Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children's hospital in eastern Canada. Results: Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children's end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child's physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child's needs and their family's desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. Conclusion: Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families.
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01280-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01280-8</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adolescent
Article
Bereavement Support
BMC Palliative Care
Canada
Child
Chronic Disease
Controlled Study
Coping Behavior
coronavirus disease 2019
family support
February List 2024
Female
Health Care Access
health care facility
Health Care Policy
Health Service
Health Status
Human
Infant
Infection Control
Interview
Male
Nicholas DB
Palliative Therapy
Pandemic
Parental Attitude
Personal Experience
physical activity
Public Health
Qualitative Research
Rapoport A
Risk Assessment
Social Support
Terminal Care
Zulla RT
-
Dublin Core
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Title
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February 2024 List
Text
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Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.3389/fped.2023.1258285" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fped.2023.1258285</a>
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Title
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Perinatal palliative care: focus on comfort
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Frontiers in Pediatrics
Date
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2023
Subject
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article; human; palliative therapy; comfort; infant; critically ill patient
Creator
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McCarthy FT; Kenis A; Parravicini E
Description
An account of the resource
Providing comfort while a patient is living with a life-limiting condition or at end of life is the hallmark of palliative care regardless of the patient's age. In perinatal palliative care, the patient is unable to speak for themselves. In this manuscript we will present guidelines garnered from the 15-year experience of the Neonatal Comfort Care Program at Columbia University Irving Medical Center, and how they provide care for families along the perinatal journey. We will describe essential tools and strategies necessary to consider in assessing and providing comfort to infants facing a life-limiting diagnosis in utero, born at the cusp of viability or critically ill where the burden of care may outweigh the benefit.
Identifier
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<a href="http://doi.org/10.3389/fped.2023.1258285" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1258285</a>
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2023
Article
Comfort
Critically Ill Patient
February List 2024
Frontiers in Pediatrics
Human
Infant
Kenis A
McCarthy FT
Palliative Therapy
Parravicini E
-
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Title
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February 2024 List
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February List 2024
URL Address
<a href="http://doi.org/10.1177/10497323231201023" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10497323231201023</a>
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Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study
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Qualitative Health Research
Date
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2023
Subject
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child; article; controlled study; human; prematurity; palliative therapy; child parent relation; grief; uncertainty; bereavement; ethics; congenital malformation; morality; neonatal intensive care unit; infant; decision making; medical care; narrative
Creator
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Lakhani J; Mack C; Kunyk D; van Manen M
Description
An account of the resource
Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are many infants that not only do not survive but also have a medicalized death necessitating complex decision-making, weighing quality versus duration of life. We can learn from the stories of parents who chose palliative care for their children. In this narrative inquiry study, we elicited bereaved parents' stories and reflections on the lives of their children and the care they received in the NICU. From a narrative ethics perspective, their stories speak to normative aspects of parenting, decision-making, and receiving medical care that affect their moral sense-making of their NICU experiences as well as their longer-term living with the loss of their children. Their stories express the importance of having had meaningful time with their children, maintaining direct and frequent communication, acknowledging uncertainty, and emphasizing compassion as methods of providing support to parents as they navigate their bereavement.
Identifier
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<a href="http://doi.org/10.1177/10497323231201023" target="_blank" rel="noreferrer noopener">10.1177/10497323231201023</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
Bereavement
Child
Child Parent Relation
Congenital Malformation
Controlled Study
Decision Making
Ethics
February List 2024
Grief
Human
Infant
Kunyk D
Lakhani J
Mack C
Medical Care
Morality
Narrative
Neonatal Intensive Care Unit
Palliative Therapy
Prematurity
Qualitative Health Research
Uncertainty
van Manen M
-
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Title
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February 2024 List
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February List 2024
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<a href="http://doi.org/10.3390/children10111726" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10111726</a>
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Relevance of Potential Contributing Factors for the Development and Maintenance of Irritability of Unknown Origin in Pediatric Palliative Care
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Children
Date
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2023
Subject
The topic of the resource
child; diagnosis; article; human; major clinical study; dystonia; palliative therapy; pain; neurologic disease; adolescent; infant; social aspect; irritability; Krippendorff's alpha coefficient
Creator
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Kubek LA; Angenendt N; Hasan C; Zernikow B; Wager J
Description
An account of the resource
Potential contributing factors (PCFs) for irritability of an unknown origin (IUO) in children with neurological conditions are identifiable through structured diagnostics. Uncertainty exists regarding the actual relevance of identified PCFs to IUO. Assessments from parents as well as nursing, psycho-social, and medical professionals were used to determine the contribution of different PCFs in the development and maintenance of IUO. For this, individual PCFs of N = 22 inpatient children with IUO were presented to four raters. Descriptive statistics, Kruskal-Wallis tests, and Krippendorff's alpha were used to determine which PCFs were most relevant to explain IUO and rater agreement. Psycho-social aspects (44.7%), hyperarousal (47.2%), pain (24.6%), and dystonia (18.1%) were identified as the most relevant PCFs for IUO. Descriptively, physicians' relevance rating regarding psycho-social aspects, hyperarousal, and dystonia deviated the most from the overall group rating. All professional raters considered psycho-social aspects to be more relevant than did parents. Parents rated pain as more relevant than the other raters. Kruskal-Wallis tests showed no significant differences between relevance ratings (H = 7.42, p = 0.059) or the four parties' deviations (H = 3.32, p = 0.344). A direct comparison of the six two-party constellations showed that across all factors, agreement was weak to moderate. The highest agreement was between physicians and nurses (α = 0.70), and the lowest was between nurses and psycho-social experts (α = 0.61). Understanding which psycho-social and various biological PCFs are significant for IUO can facilitate more targeted and individualized pediatric palliative care for affected patients.
Identifier
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<a href="http://doi.org/10.3390/children10111726" target="_blank" rel="noreferrer noopener">10.3390/children10111726</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adolescent
Angenendt N
Article
Child
Children
Diagnosis
Dystonia
February List 2024
Hasan C
Human
Infant
Irritability
Krippendorff's alpha coefficient
Kubek LA
Major Clinical Study
Neurologic Disease
Pain
Palliative Therapy
social aspect
Wager J
Zernikow B
-
Dublin Core
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Title
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February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1136/spcare-2023-004435" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2023-004435</a>
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Title
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Palliative care for infants with life-limiting conditions: Integrative review
Publisher
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BMJ Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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terminal care; human; palliative therapy; aged; review; advance care planning; consultation; content analysis; interpersonal communication; medical specialist; therapy; infant; nurse; English (language); chronic disease; health practitioner; primary health care; biological marker; quality improvement study
Creator
An entity primarily responsible for making the resource
Iten R; O'Connor M; Gill FJ
Description
An account of the resource
Background: Infants with life-limiting conditions are a heterogeneous population. Palliative care for infants is delivered in a diverse range of healthcare settings and by interdisciplinary primary healthcare teams, which may not involve specialist palliative care service consultation. Objective: To synthesise the literature for how palliative care is delivered for infants aged less than 12 months with life-limiting conditions. Methods: An integrative review design. MEDLINE, CINAHL, ProQuest, Cochrane, Joanna Briggs Institute and EMBASE were searched for research published in English language, from 2010 to 2022, and peer reviewed. Critical appraisal was completed for 26 patient case series, 9 qualitative, 5 cross-sectional and 1 quality improvement study. Data analysis involved deductive content analysis and narrative approach to summarise the synthesised results. Results: 37 articles met the eligibility for inclusion. Two models of palliative care delivery were examined, demonstrating differences in care received and experiences of families and health professionals. Health professionals reported lack of palliative care education, challenges for delivering palliative care in intensive care settings and barriers to advance care planning including prognostic uncertainty and transitioning to end-of-life care. Families reported positive experiences with specialist palliative care services and challenges engaging in advance care planning discussions. Conclusion: There are complex issues surrounding the provision of palliative care for infants. Optimal palliative care should encompass a collaborative and coordinated approach between the primary healthcare teams and specialist palliative care services and prioritisation of palliative care education for nurses and physicians involved in providing palliative care to infants.
Identifier
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<a href="http://doi.org/10.1136/spcare-2023-004435" target="_blank" rel="noreferrer noopener">10.1136/spcare-2023-004435</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
Aged
biological marker
BMJ Supportive and Palliative Care
Chronic Disease
Consultation
Content Analysis
English (language)
February List 2024
Gill FJ
health practitioner
Human
Infant
Interpersonal Communication
Iten R
Medical Specialist
Nurse
O'Connor M
Palliative Therapy
Primary Health Care
quality improvement study
Review
Terminal Care
Therapy
-
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Title
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February 2024 List
Text
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Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1136/tsaco-2023-001143" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/tsaco-2023-001143</a>
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Title
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Optimizing resource utilization: Palliative care consultations in critically ill pediatric trauma patients
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Trauma Surgery and Acute Care Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; pediatric intensive care unit; school child; consultation; clinical feature; practice guideline; surgery; adolescent; infant; critically ill patient; intensive care unit; electronic medical record; traumatic brain injury; toddler; child abuse; total quality management; special situation for pharmacovigilance; childhood trauma; injury
Creator
An entity primarily responsible for making the resource
Goswami J; Baxter J; Schiltz BM; Elsbernd TA; Arteaga GM; Klinkner DB
Description
An account of the resource
The American College of Surgeons Trauma Quality Improvement Program (TQIP) and Committee on Trauma released a best practice guideline for palliative care in trauma patients in 2017. Utilization of pediatric palliative care services for pediatric trauma patients has not been studied. We sought to identify patients who received the consultation and develop criteria for patients who would benefit from these resources at our institution. Methods: The institutional pediatric trauma registry was queried to identify all admissions age 0-17 years old to the pediatric intensive care unit (PICU) or trauma ICU (TICU) from 2014 to 2021. Demographic and clinical features were obtained from the registry. Electronic medical records were reviewed to identify and review consultations to the ComPASS team. A clinical practice guideline (CPG) for palliative care consultations was developed based on the TQIP guideline and applied retrospectively to patients admitted 2014-2021. The CPG was then prospectively applied to patients admitted from March through November 2022. Results: A total of 399 patients were admitted to the PICU/TICU. There were 30 (7.5%) deaths, 20 (66.7%) within 24 hours of admission. Palliative care consultations were obtained in 21 (5.3%). Of these, 10 (47.6%) patients were infants/toddlers <age 2 years, all had traumatic brain injury, 3 (14.3%) were for suspected child abuse, and many were for "goals of care" or family meetings. When the CPG was applied retrospectively, 109 (27.3%) patients met criteria for consultation. After 8 months of prospective implementation of this CPG, palliative care consultation was obtained in 25% (7 of 28) of pediatric trauma patients admitted to the ICU. Conclusion: Our results demonstrate underused potential of the palliative care team to impact the hospital course of critically ill pediatric trauma patients. Ongoing studies will analyze the utility of CPG implementation for early involvement of palliative services in critically ill pediatric trauma patients. Level of evidence: Level III (retrospective cohort).
Identifier
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<a href="http://doi.org/10.1136/tsaco-2023-001143" target="_blank" rel="noreferrer noopener">10.1136/tsaco-2023-001143</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adolescent
Arteaga GM
Article
Baxter J
Child
Child Abuse
childhood trauma
Clinical Feature
Consultation
Controlled Study
Critically Ill Patient
electronic medical record
Elsbernd TA
February List 2024
Female
Goswami J
Human
Infant
injury
Intensive Care Unit
Klinkner DB
Major Clinical Study
Male
Palliative Therapy
Pediatric Intensive Care Unit
Practice Guideline
Retrospective Study
Schiltz BM
School Child
special situation for pharmacovigilance
Surgery
toddler
Total Quality Management
Trauma Surgery and Acute Care Open
traumatic brain injury
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1097/JPN.0000000000000780" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/JPN.0000000000000780</a>
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Title
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A Qualitative Study of Parents' Experiences of Bonding in End-of-Life Care in a Neonatal Intensive Care Unit
Publisher
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Journal of Perinatal & Neonatal Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; diagnosis; terminal care; adult; article; human; newborn; clinical article; interview; content analysis; parent; pilot study; qualitative research; newborn intensive care; neonatal intensive care unit; health care personnel; infant; decision making; powerlessness; parenthood; shame
Creator
An entity primarily responsible for making the resource
Funkquist EL; Lindquist A; Edner A
Description
An account of the resource
To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive. Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a neonatal intensive care unit. Methods: The interviews were pilot processed using inductive content analysis and then processed again using deductive content analysis with the attachment theory applied as a theoretical frame. Results: Three main themes emerged from the parents' descriptions: 1. The parents' relationship with the healthcare provider: an alliance between the parent and the healthcare provider can facilitate communication, for example, the use of proposals to promote parents' role in the care; 2. The parents' relationship with the infant: parents' wish to fulfill the role of a protective parent, and it is of importance for the parents' future well-being to take part in care and decision making; and 3. The parents' relationship with the own self: in this unknown situation, parents' expectations of parenthood are broken, and they experience feelings of shame and powerlessness. Conclusion: The relationship between the parent and the healthcare provider affects how the parents bond with their child and their experiences of the healthcare.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/JPN.0000000000000780" target="_blank" rel="noreferrer noopener">10.1097/JPN.0000000000000780</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adult
Article
Child
Clinical Article
Content Analysis
Decision Making
Diagnosis
Edner A
February List 2024
Funkquist EL
Health Care Personnel
Human
Infant
Interview
Journal of Perinatal & Neonatal Nursing
Lindquist A
Neonatal Intensive Care Unit
Newborn
Newborn Intensive Care
Parent
parenthood
Pilot Study
Powerlessness
Qualitative Research
shame
Terminal Care
-
Dublin Core
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
February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1016/j.cppeds.2023.101455" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.cppeds.2023.101455</a>
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
Pediatric palliative care in Sweden
Publisher
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Current Problems in Pediatric and Adolescent Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; diagnosis; article; human; male; palliative therapy; adolescent; therapy; infant; decision making; Sweden; health care facility
Creator
An entity primarily responsible for making the resource
Castor C; Iveus K; Kreicbergs U
Description
An account of the resource
In Sweden, the governance of healthcare is decentralized, so PC is provided with regional or local differences in organization, level of competence, and recourses. Ongoing regional and national initiative to increase quality of pediatric palliative care in Sweden aligns with the international standard of pediatric palliative care as a care directed towards all children with life-threatening or life-limiting illness or conditions from the time of diagnosis. Examples of such initiatives and of different care-services providing pediatric palliative care will be presented. Finally a case to highlighting how a child's care needs might change throughout the illness trajectory and how various healthcare facilities and organizations when collaborating can support the child's participation in decision making is presented.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.cppeds.2023.101455" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2023.101455</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adolescent
Article
Castor C
Child
Current Problems in Pediatric and Adolescent Health Care
Decision Making
Diagnosis
February List 2024
health care facility
Human
Infant
Iveus K
Kreicbergs U
Male
Palliative Therapy
Sweden
Therapy
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.3390/children10101635" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10101635</a>
Dublin Core
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Title
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Lactation Support as a Proxy Measure of Family-Centered Care Quality in Neonates with Life-Limiting Conditions-A Comparative Study
Publisher
An entity responsible for making the resource available
Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
article; cohort analysis; controlled study; female; hospital admission; human; major clinical study; male; retrospective study; cerebral palsy; gestational age; comparative study; hospital discharge; congenital heart disease; genetic disorder; seizure; neurologic disease; lung disease; neonatal intensive care unit; clinical assessment; mortality; infant; kidney disease; extracorporeal oxygenation; health disparity; cognitive defect; length of stay; gastrointestinal disease; do not resuscitate order; breast feeding; hypoxic ischemic encephalopathy; family centered care; sensory dysfunction; incurable disease; lactation; life limiting condition; breast pump; donor milk; learning disorder; nutritional deficiency
Creator
An entity primarily responsible for making the resource
Brito S; Williams A; Fox J; Mohammed T; Chahin N; McCarthy K; Nubayaat L; Nunlist S; Brannon M; Xu J; Hendricks-Munoz KD
Description
An account of the resource
Lactation support is an important measure of Family-Centered Care (FCC) in the Neonatal Intensive Care Unit (NICU). Life-limiting conditions (LLCs) raise complex ethical care issues for providers and parents in the NICU and represent a key and often overlooked population for whom FCC is particularly important. We investigated healthcare disparities in FCC lactation support quality in infants with LLCs. Methods: A retrospective cohort of inborn infants with or without LLCs admitted to the NICU between 2015-2023 included 395 infants with 219 LLC infants and 176 matched non-LLC infants and were compared on LLC supports. Results: The LLC cohort experienced greater skin-to-skin support, but less lactation specialist visits, breast pumps provided, and human milk oral care use. LLC infants also experienced less maternal visitation, use of donor milk (LLC: 15.5%, non-LLC: 33.5%), and breastfeeds (LLC: 24.2%, non-LLC: 43.2%), with lower mean human milk provision (LLC: 36.6%, non-LLC: 67.1%). LLC infants who survived to discharge had similar human milk use as non-LLC infants (LLC: 49.8%, non-LLC: 50.6%). Conclusion: Lactation support was significantly absent for families and infants who presented with LLCs in the NICU, suggesting that policies can be altered to increase lactation support FCC quality for this population.
Identifier
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<a href="http://doi.org/10.3390/children10101635" target="_blank" rel="noreferrer noopener">10.3390/children10101635</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
Brannon M
breast feeding
breast pump
Brito S
Cerebral Palsy
Chahin N
Children
clinical assessment
Cognitive Defect
Cohort Analysis
Comparative Study
Congenital Heart Disease
Controlled Study
do not resuscitate order
Donor Milk
extracorporeal oxygenation
Family Centered Care
February List 2024
Female
Fox J
gastrointestinal disease
Genetic Disorder
Gestational Age
health disparity
Hendricks-Munoz KD
Hospital Admission
hospital discharge
Human
hypoxic ischemic encephalopathy
incurable disease
Infant
kidney disease
lactation
learning disorder
Length Of Stay
Life limiting condition
Lung Disease
Major Clinical Study
Male
McCarthy K
Mohammed T
Mortality
Neonatal Intensive Care Unit
Neurologic Disease
Nubayaat L
Nunlist S
nutritional deficiency
Retrospective Study
Seizure
sensory dysfunction
Williams A
Xu 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
February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1186/s12904-023-01302-5" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01302-5</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children's palliative care service over 14 years
Publisher
An entity responsible for making the resource available
BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; article; female; human; major clinical study; male; palliative therapy; hospice; uncertainty; school child; fetus; retrospective study; medical record review; infant; heart; hospital mortality; trisomy 18; prenatal period
Creator
An entity primarily responsible for making the resource
Bertaud S; Brightley G; Crowley N; Craig F; Wilkinson D
Description
An account of the resource
Perinatal palliative care is an emerging branch of children's palliative care. This study sought to better understand the pattern of antenatal referrals and the role of a specialist paediatric palliative care (PPC) team in supporting families throughout the antenatal period. Methods: A single-centre retrospective chart review of all antenatal referrals to a quaternary children's palliative care service over a 14-year period from 2007 to 2021. Results: One hundred fifty-nine antenatal referrals were made to the PPC team over a 14-year period, with increasing referrals over time. Referrals were made for a broad spectrum of diagnoses with cardiac conditions (29% of referrals) and Trisomy 18 (28% of referrals) being the most prevalent. 129 referrals had contact with the PPC team prior to birth and 60 had a personalised symptom management plan prepared for the baby prior to birth. Approximately one third (48/159) died in utero or were stillborn. Only a small number of babies died at home (n = 10) or in a hospice (n = 6) and the largest number died in hospital (n = 72). 30 (19% of all referrals) were still alive at the time of the study aged between 8 months and 8 years. Conclusions: Specialist PPC teams can play an important role in supporting families during the antenatal period following a diagnosis of a life-limiting fetal condition and demand for this service is increasing. A large proportion of the cases referred will not survive to the point of delivery and a number of babies may survive much longer than predicted. PPC teams can be particularly helpful navigating the uncertainty that exists in the antenatal period and ensuring that plans are made for the full spectrum of possible outcomes.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-023-01302-5" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01302-5</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
Bertaud S
BMC Palliative Care
Brightley G
Child
Craig F
Crowley N
February List 2024
Female
Fetus
Heart
Hospice
Hospital Mortality
Human
Infant
Major Clinical Study
Male
Medical Record Review
Palliative Therapy
prenatal period
Retrospective Study
School Child
Trisomy 18
Uncertainty
Wilkinson 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
A name given to the resource
2023 Special Edition 5 - Low Resource Setting List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1007/s00467-022-05525-1" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00467-022-05525-1</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
Clinical and genetic characteristics of Tunisian children with infantile nephropathic cystinosis
Publisher
An entity responsible for making the resource available
Pediatric Nephrology
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; child; article; controlled study; female; human; male; retrospective study; palliative therapy; preschool child; clinical article; information processing; Only Child; gene mutation; gene; infant; pediatric patient; clinical feature; Fanconi renotubular syndrome; gene deletion; heterozygosity; homozygosity; molecular fingerprinting; prenatal diagnosis; cystinosis/di [Diagnosis]; cystinosis/dt [Drug Therapy]; genetic trait; infantile nephropathic cystinosis/di [Diagnosis]; infantile nephropathic cystinosis/dt [Drug Therapy]; kidney disease/di [Diagnosis]; kidney disease/dt [Drug Therapy]; Tunisian; bicarbonate/dt [Drug Therapy]; bicarbonate/pv [Special Situation for Pharmacovigilance]; calcitriol/dt [Drug Therapy]; calcitriol/pv [Special Situation for Pharmacovigilance]; citrate potassium/dt [Drug Therapy]; citrate potassium/pv [Special Situation for Pharmacovigilance]; CTNS gene; cystine/ec [Endogenous Compound]; exon; founder mutation; genetic analysis; hypothyroidism/dt [Drug Therapy]; mercaptamine/dt [Drug Therapy]; mercaptamine/pv [Special Situation for Pharmacovigilance]; molecular diagnosis; RNA splicing; Sanger sequencing; thyroid hormone/dt [Drug Therapy]; thyroid hormone/pv [Special Situation for Pharmacovigilance]
Creator
An entity primarily responsible for making the resource
El Younsi M; Trabelsi M; Ben Youssef S; Ouertani I; Hammi Y; Achour A; Maazoul F; Kharrat M; Gargah T; M'Rad R
Description
An account of the resource
Background: Nephropathic cystinosis is an autosomal recessive disease caused by a mutation in the CTNS gene which encodes cystinosin, a lysosomal cystine transporter. The spectrum of mutations in the CTNS gene is not well defined in the North African population. Here, we investigated twelve patients with nephropathic cystinosis belonging to eight Tunisian families in order to analyze the clinical and genetic characteristics of Tunisian children with infantile nephropathic cystinosis. Methods: Clinical data were collected retrospectively. Molecular analysis of the CTNS gene was performed by Sanger sequencing. Results: We describe a new splicing mutation c.971-1G > C in the homozygous state in 6/12 patients which seems to be a founder mutation. The reported deletion of 23nt c.771_793 Del (p.Gly258Serfs*30) was detected in a homozygous state in one patient and in a heterozygous compound state with the c.971-1G > C mutation in 3/12 patients. Two of 12 patients have a deletion of exons 4 and 5 of the CTNS gene. None of our patients had the most common 57-kb deletion. Conclusions: The mutational spectrum in the Tunisian population is different from previously described populations. Thus, a molecular diagnostic strategy must be implemented in Tunisia, by targeting as a priority the common mutations described in this country. Such a strategy will allow a cost-effective diagnosis confirmation as well as early administration of treatment with oral cysteamine. A higher resolution version of the Graphical abstract is available as Supplementary information.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00467-022-05525-1" target="_blank" rel="noreferrer noopener">10.1007/s00467-022-05525-1</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
2023 SE5 - Low Resource Setting
Achour A
Article
Ben Youssef S
bicarbonate/dt [Drug Therapy]
bicarbonate/pv [Special Situation for Pharmacovigilance]
calcitriol/dt [Drug Therapy]
calcitriol/pv [Special Situation for Pharmacovigilance]
Child
citrate potassium/dt [Drug Therapy]
citrate potassium/pv [Special Situation for Pharmacovigilance]
Clinical Article
Clinical Feature
Controlled Study
CTNS gene
cystine/ec [Endogenous Compound]
cystinosis/di [Diagnosis]
cystinosis/dt [Drug Therapy]
El Younsi M
exon
Fanconi renotubular syndrome
Female
founder mutation
Gargah T
gene
Gene Deletion
gene mutation
genetic analysis
genetic trait
Hammi Y
heterozygosity
homozygosity
Human
hypothyroidism/dt [Drug Therapy]
Infant
infantile nephropathic cystinosis/di [Diagnosis]
infantile nephropathic cystinosis/dt [Drug Therapy]
Information Processing
Kharrat M
kidney disease/di [Diagnosis]
kidney disease/dt [Drug Therapy]
M'Rad R
Maazoul F
Male
mercaptamine/dt [Drug Therapy]
mercaptamine/pv [Special Situation for Pharmacovigilance]
molecular diagnosis
molecular fingerprinting
Only Child
Ouertani I
Palliative Therapy
Pediatric Nephrology
pediatric patient
Prenatal Diagnosis
Preschool Child
Retrospective Study
RNA splicing
Sanger sequencing
thyroid hormone/dt [Drug Therapy]
thyroid hormone/pv [Special Situation for Pharmacovigilance]
Trabelsi M
Tunisian
-
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
2023 Special Edition 5 - Low Resource Setting List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1186/s12904-023-01195-4" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01195-4</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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Impact of an outpatient palliative care consultation and symptom clusters in terminal patients at a tertiary care center in Pakistan
Publisher
An entity responsible for making the resource available
BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Female; Male; Palliative Care; Infant; Quality of Life; Syndrome; Tertiary Care Centers; Outpatients; Palliative Care; Referral and Consultation; Neoplasms/th [Therapy]; Symptom Assessment; Neoplasms; Neoplasms/co [Complications]; Neoplasms/ep [Epidemiology]; Pakistan
Creator
An entity primarily responsible for making the resource
Rafaqat W; Syed AR; Ahmed IM; Hashmi S; Jabeen I; Rajwani S; Qamar U; Waqar MA
Description
An account of the resource
Background: Patients with terminal diseases may benefit physically and psychosocially from an outpatient palliative care visit. Palliative care services are limited in Pakistan. An improved understanding of the symptom clusters present in our population is needed. The first outpatient palliative care center in Karachi, Pakistan, was established at our tertiary care institution. The primary aim of this study was to evaluate the impact of a palliative care outpatient consultation on symptom burden in patients with a terminal diagnosis. The secondary aim was to analyze the symptom clusters present in our population. Methods: Patients with a terminal diagnosis referred to our outpatient palliative department between August 2020-August 2022 were enrolled. The Edmonton Symptom Assessment Scale (ESAS) questionnaire was administered at the initial visit and the first follow-up visit at one month. Change in symptom burden was assessed using a Wilcoxon signed ranks test. A principal component analysis with varimax rotation was performed on the symptoms reported at the initial visit to evaluate symptom clusters. The palliative performance scale (PPS) was used to measure the performance status of palliative care patients. Results: Among the 78 patients included in this study, the average age was 59 ± 16.6 years, 52.6% were males, 99% patients had an oncological diagnosis, and the median duration between two visits was 14 (Q1-Q3: (7.0, 21.0) days. The median PPS level was 60% (Q1-Q3: 50-70). Overall, ESAS scores decreased between the two visits (6.0 (2.8, 11.0), p < 0.001) with statistically significant improvement in pain (5.0 vs. 2.5, p < 0.001), loss of appetite (5.0 vs. 4.0, p = 0.004), depression (2.0 vs. 0.0, p < 0.001), and anxiety (1.5 vs. 0.0, p = 0.032). Based on symptoms at the initial visit, 3 clusters were present in our population. Cluster 1 included anxiety, depression, and wellbeing; cluster 2 included nausea, loss of appetite, tiredness, and shortness of breath; and cluster 3 included drowsiness. Conclusion: An outpatient palliative care visit significantly improved symptom burden in patients with a terminal diagnosis. Patients may benefit from further development of outpatient palliative care facilities to improve the quality of life in terminally ill patients.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-023-01195-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01195-4</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
2023 SE5 - Low Resource Setting
Ahmed IM
BMC Palliative Care
Female
Hashmi S
Humans
Infant
Jabeen I
Male
Neoplasms
Neoplasms/co [complications]
Neoplasms/ep [Epidemiology]
Neoplasms/th [therapy]
Outpatients
Pakistan
Palliative Care
Qamar U
Quality Of Life
Rafaqat W
Rajwani S
Referral And Consultation
Syed AR
Symptom Assessment
Syndrome
Tertiary Care Centers
Waqar MA
-
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
2023 Special Edition 5 - Low Resource Setting List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1186/s12904-023-01177-6" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01177-6</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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Children with palliative care needs in Papua New Guinea, and perspectives from their parents and health care workers: a qualitative study
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; child; Palliative Care; adult; article; controlled study; female; human; male; preschool child; palliative therapy; clinical article; interview; parent; Only Child; school child; health care personnel; qualitative research; descriptive research; child health care; health care quality; pediatric ward; adolescent; infant; thematic analysis; medical record; knowledge gap; health care need; Papua New Guinea; acute lymphoblastic leukemia/di [Diagnosis]; bronchiectasis/di [Diagnosis]; cerebral palsy/di [Diagnosis]; congenital heart disease/di [Diagnosis]; congenital malformation/di [Diagnosis]; dyspnea/co [Complication]; germ cell tumor/di [Diagnosis]; Guillain Barre syndrome/di [Diagnosis]; hemosiderosis/di [Diagnosis]; Human immunodeficiency virus infection/di [Diagnosis]; job experience; malignant neoplasm/di [Diagnosis]; Melanesia; neuroblastoma/di [Diagnosis]; Pacific islands; pain/co [Complication]; pulmonary hypertension/di [Diagnosis]; retinoblastoma/di [Diagnosis]; thalassemia/di [Diagnosis]; tuberculosis/di [Diagnosis]
Creator
An entity primarily responsible for making the resource
Watch V; Anga G; Kilalang C; Pulsan F; Vince JD; Duke T
Description
An account of the resource
Introduction: The World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be provided even when curative attempts are being utilised. In Papua New Guinea, as in other low- and middle-income countries there is a lack of services and training on PPC. This study aims to describe the characteristics of children with palliative care needs and to assess the perspectives of their parents and health care workers. Methods: A descriptive qualitative study was carried out over 5 months in 2022 at the Port Moresby General Hospital children's wards. Clinical information was gathered from the admission charts of children with life threatening and life limiting conditions and a recorded interview was carried out with the children's parents. A focus group interview with 10 experienced nurses caring for these children was video recorded. The recorded interviews were subjected to thematic analysis. Results: Twenty children and their parents were included in this study. Nine had a cancer diagnosis and 11 had a chronic progressive condition. The common clinical characteristics of children with palliative care needs were pain (n = 9) and shortness of breath (n = 9), and most children had more than one symptom. Several themes were identified in the parent interviews. Most parents could not name their child's diagnosis, but they were able to correctly describe their child's condition using their own terms. Most parents felt involved in their child's management and were satisfied with the care provided. Parents were psychologically affected by their child's situation but were hopeful that God and the medicines would heal their child. Ten nurses were involved in a focus-group interview. Most nurses' understanding of palliative care was from experience not from formal training, but most felt confident in identifying the physical, emotional, and spiritual needs of the children. Understanding of analgesia was limited, as was the availability of appropriate medications included in the WHO Analgesic Ladder. Conclusion: There is a need for a systematic approach to palliative care in Papua New Guinea. Palliative care can be integrated into an overall approach to quality of paediatric care. It is relevant to a broad section of children with severe chronic or malignant conditions and can be carried out with limited resources. It does require some resources, further training and education, and increased provision of basic drugs for symptom control.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-023-01177-6" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01177-6</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE5 - Low Resource Setting
acute lymphoblastic leukemia/di [Diagnosis]
Adolescent
Adult
Anga G
Article
BMC Palliative Care
bronchiectasis/di [Diagnosis]
Cerebral Palsy/di [Diagnosis]
Child
Child Health Care
Clinical Article
congenital heart disease/di [Diagnosis]
congenital malformation/di [Diagnosis]
Controlled Study
Descriptive Research
Duke T
dyspnea/co [Complication]
Female
germ cell tumor/di [Diagnosis]
Guillain Barre syndrome/di [Diagnosis]
health care need
Health Care Personnel
Health Care Quality
hemosiderosis/di [Diagnosis]
Human
Human immunodeficiency virus infection/di [Diagnosis]
Infant
Interview
job experience
Kilalang C
knowledge gap
Male
malignant neoplasm/di [Diagnosis]
Medical Record
Melanesia
neuroblastoma/di [Diagnosis]
Only Child
Pacific Islands
Pain/co [complication]
Palliative Care
Palliative Therapy
Papua New Guinea
Parent
pediatric ward
Preschool Child
pulmonary hypertension/di [Diagnosis]
Pulsan F
Qualitative Research
retinoblastoma/di [Diagnosis]
School Child
thalassemia/di [Diagnosis]
Thematic Analysis
tuberculosis/di [Diagnosis]
Vince JD
Watch V
-
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Title
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2023 Special Edition 5 - Low Resource Setting List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1371/journal.pone.0288938" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1371/journal.pone.0288938</a>
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Title
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Doing our best and doing no harm: A focused ethnography of staff moral experiences of providing palliative care at a Médecins Sans Frontières pediatric hospital in Cox's Bazar, Bangladesh
Publisher
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PLoS One
Date
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2023
Subject
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Humans; Child; Hospitals Pediatric; Palliative Care; Infant; Bangladesh; Palliative Care; Morals; Hospitals Pediatric; Anthropology Cultural
Creator
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Yantzi R; Hadiuzzaman M; Sen Gupta PK; Lamrous A; Richardson K; Pringle J; Schwartz L; Hossain P; Kizito D; Burza S
Description
An account of the resource
INTRODUCTION: The Médecins Sans Frontières (MSF) Goyalmara Hospital in Cox's Bazar, Bangladesh is a referral centre offering the highest level of care available in the Rohingya camps for pediatrics and neonatology. Efforts are underway to integrate pediatric palliative care due to high mortality and medical complexity of patients, yet little is known about the experiences of staff delivering palliative and end-of-life care. The purpose of this study was to understand the moral experiences of MSF staff to inform program planning and implementation. METHODS: This focused ethnography was conducted between March-August 2021 at Goyalmara Hospital. Data collection involved participant-observation, individual interviews (22), focus group discussions (5), and analysis of documents including MSF clinical guidelines, admission and referral criteria, reports, and training materials. Data analysis followed a modified version of the Qualitative Analysis Guide of Leuven and data were coded using NVivo software. RESULTS: The prevailing understanding of pediatric palliative care among national and international staff was care that prioritized comfort for infants and children who were not expected to survive. Staff's views were informed by their sense of obligation to do no harm, to do their best on behalf of their patients, and religious beliefs about God's role in determining the child's outcome. The authority of doctors, international staff, as well as protocols and guidelines shaped palliative care decision-making. Staff saw clinical guidelines as valuable resources that supported a consistent approach to care over time, while others were concerned that palliative care guidelines were rigidly applied. CONCLUSION: When integrating palliative care into humanitarian programs, it is important to emphasize the active role of palliative care in reducing suffering. Advocacy for access to the highest level of care possible should continue alongside palliative care integration. While palliative care guidelines are valuable, it is essential to encourage open discussion of staff concerns and adapt care plans based on the family's needs and preferences.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1371/journal.pone.0288938" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0288938</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE5 - Low Resource Setting
Anthropology Cultural
Bangladesh
Burza S
Child
Hadiuzzaman M
Hospitals Pediatric
Hossain P
Humans
Infant
Kizito D
Lamrous A
Morals
Palliative Care
PLoS One
Pringle J
Richardson K
Schwartz L
Sen Gupta PK
Yantzi R
-
Dublin Core
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Title
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2023 Special Edition 4 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1111/jir.12093" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jir.12093</a>
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Title
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Openness and avoidance--a longitudinal study of fathers of children with intellectual disability.
Publisher
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Journal of Intellectual Disability Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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Humans; Child, Preschool; Female; Male; Infant; Longitudinal Studies; Adult; Qualitative Research; *Fathers/px [Psychology]; *Father-Child Relations; *Intellectual Disability/px [Psychology]; *Parenting/px [Psychology]; *Developmental Disabilities/px [Psychology]
Creator
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Bostrom, P K; Broberg, M
Description
An account of the resource
BACKGROUND: Fathers' interactions with children who have intellectual disabilities (ID) or developmental delays (DD) have increased over the past few decades and may be expected to continue to increase as maternal and paternal roles, along with other gender roles, become more equal. The aim of the present study was to explore fathers' experiences of parenthood in relation to a child with ID/DD from the initial discovery of the disability to 5 years later., METHODS: Fathers' experiences of parenting children with ID/DD were explored in a longitudinal framework. Seven Swedish fathers of young children with ID/DD participated in a series of semi-structured interviews from 2005 to 2010, and their accounts were subjected to interpretative phenomenological analysis., RESULTS: The analysis revealed three themes: (1) An interrupted path - no longer taking things for granted, which describes the fathers' reactions to their children's diagnosis; (2) Being a good father, which describes the fathers' overall perceptions of their parenting of a child with ID/DD; and (3) Dealing with the unexpected, which describes fathers' individual ways of integrating, managing, and living with the knowledge of their child's disability over the 5 years during which fathers were interviewed., CONCLUSIONS: Fathers' individual paths need to be taken into consideration when offering psychological support to families of children with ID/DD. Copyright © 2013 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.
Identifier
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<a href="http://doi.org/10.1111/jir.12093" target="_blank" rel="noreferrer noopener">10.1111/jir.12093</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).
*Developmental Disabilities/px [Psychology]
*Father-Child Relations
*Fathers/px [Psychology]
*Intellectual Disability/px [Psychology]
*Parenting/px [Psychology]
2014
2023 SE4 - Parent Perspectives
Adult
Bostrom, P K
Broberg, M
Child, Preschool
Female
Humans
Infant
Journal Of Intellectual Disability Research
Longitudinal Studies
Male
Qualitative Research
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 4 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/0269216309354396" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/0269216309354396</a>
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Title
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Gender imbalance in pediatric palliative care research samples.
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Humans; Child; Child, Preschool; Female; Male; Adolescent; Infant; Sex Factors; Research Design; Sampling Studies; *Palliative Care/sn [Statistics & Numerical Data]; *Fathers/sn [Statistics & Numerical Data]; *Mothers/sn [Statistics & Numerical Data]; *Pediatrics/sn [Statistics & Numerical Data]; *Research/sn [Statistics & Numerical Data]
Creator
An entity primarily responsible for making the resource
Macdonald, Mary Ellen; Chilibeck, Gillian; Affleck, William; Cadell, Susan
Description
An account of the resource
We assessed the sampling performance of research on parental perspectives in pediatric palliative care and examined if and how gender imbalance was treated. We undertook a systematic review of parental perspectives research in pediatric palliative care using MEDLINE, CINAHL, and PsycINFO. Study selection inclusion criteria were: (1) published between 1988 and 2008; (2) in English; (3) conducted in North America; (4) focused on parents of children aged 0-18 years who were expected to die or had died; (5) had 'parent' in the title; and (6) focused on parents' experiences or on parents' perspectives regarding the child's illness/death. Keyword searches produced a list of 2103 studies, of which 45 met the criteria for inclusion. The ratio of mothers to fathers participating in the studies was examined. We found that there has been an increase in research on parental perspectives in pediatric palliative care over the last 5 years, but what constitutes 'parental' in this literature continues to be primarily 'maternal'. Mothers constituted 75% of the overall sample of parents. In only four studies was the gender imbalance addressed as one of the limitations of the study. There is a growing interest in parental perspectives in pediatric palliative care, but the research does not equally reflect the experiences and needs of mothers and fathers. Gender can shape experiences of both parenthood and grief; balanced gender sampling and accurate analysis is essential for research on 'parental perspectives'. Gender imbalance in research samples, designs, recruitment strategies, and data gathering methods must be addressed.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216309354396" target="_blank" rel="noreferrer noopener">10.1177/0269216309354396</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).
*Fathers/sn [Statistics & Numerical Data]
*Mothers/sn [Statistics & Numerical Data]
*Palliative Care/sn [Statistics & Numerical Data]
*Pediatrics/sn [Statistics & Numerical Data]
*Research/sn [Statistics & Numerical Data]
2010
2023 SE4 - Parent Perspectives
Adolescent
Affleck, William
Cadell, Susan
Child
Child, Preschool
Chilibeck, Gillian
Female
Humans
Infant
Macdonald, Mary Ellen
Male
Palliative Medicine
Research Design
Sampling Studies
Sex Factors
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 4 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1111/jar.12563" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jar.12563</a>
Dublin Core
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Title
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Being a dad to a child with Down's syndrome: Overcoming the challenges to adjustment.
Publisher
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Journal of Applied Research in Intellectual Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Humans; Child; Child, Preschool; Male; Infant; Middle Aged; Adult; Qualitative Research; Grounded Theory; *Fathers/px [Psychology]; *Down Syndrome/nu [Nursing]
Creator
An entity primarily responsible for making the resource
Ridding, Anna; Williams, James
Description
An account of the resource
BACKGROUND: Historically, research exploring the impact of having a child with an Intellectual Disability (ID), has focussed exclusively on mothers. The present study aimed to investigate fathers' experiences of parenting a child with Down's syndrome (DS), their contributions, influences on family functioning and inclusion in their child's support provision., METHOD: Semi-structured interviews were conducted with 15 fathers. Interviews were analysed using Grounded Theory (GT)., RESULTS: Fathers' adjustment appeared to be on a fluid trajectory with three key categories influencing this: "Accommodating the Child," "Adapting the Parental/Spousal Role" and "Adapting Society.", CONCLUSIONS: The accounts uncovered fathers' adjustment trajectory to parenting a child with DS, concluding that despite practical and emotional challenges, fathers employed strategies to achieve positive adjustment. Fathers identified the need for services to recognize their role and involve them in their child's support provision. Implications for clinical practice and future research are discussed. Copyright © 2019 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.
Identifier
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<a href="http://doi.org/10.1111/jar.12563" target="_blank" rel="noreferrer noopener">10.1111/jar.12563</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).
*Down Syndrome/nu [Nursing]
*Fathers/px [Psychology]
2019
2023 SE4 - Parent Perspectives
Adult
Child
Child, Preschool
Grounded Theory
Humans
Infant
Journal Of Applied Research In Intellectual Disabilities
Male
Middle Aged
Qualitative Research
Ridding, Anna
Williams, James
-
Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.30081" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30081</a>
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Title
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Differences in palliative opportunities across diagnosis groups in children with cancer.
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Humans; Infant Newborn; Child; Child Preschool; Palliative Care; Retrospective Studies; Adolescent; Infant; Quality of Life; Recurrence; Only Child; Terminal Care/psychology; Neoplasms/therapy; Leukemia; Clinical Trials Phase I as Topic; Lymphoma
Creator
An entity primarily responsible for making the resource
Ebelhar J; DeGroote NP; Massie AM; Labudde E; Allen KE; Castellino SM; Wasilewski-Masker K; Brock KE
Description
An account of the resource
BACKGROUND: Childhood cancer causes significant physical and emotional stress. Patients and families benefit from palliative care (PC) to reduce symptom burden, improve quality of life, and enhance family-centered care. We evaluated palliative opportunities across leukemia/lymphoma (LL), solid tumors (ST), and central nervous system (CNS) tumor groups. PROCEDURE: A priori, nine palliative opportunities were defined: disease progression/relapse, hematopoietic stem cell transplant, phase 1 trial enrollment, admission for severe symptoms, social concerns or end-of-life (EOL) care, intensive care admission, do-not-resuscitate (DNR) status, and hospice enrollment. A single-center retrospective review was completed on 0-18-year olds with cancer who died from January 1, 2012 to November 30, 2017. Demographic, disease, and treatment data were collected. Descriptive statistics were performed. Opportunities were evaluated from diagnosis to death and across disease groups. RESULTS: Included patients (n = 296) had LL (n = 87), ST (n = 114), or CNS tumors (n = 95). Palliative opportunities were more frequent in patients with ST (median 8) and CNS tumors (median 7) versus LL (median 5, p = .0005). While patients with ST had more progression/relapse opportunities (p < .0001), patients with CNS tumors had more EOL opportunities (p < .0001), earlier PC consultation, DNR status, and hospice enrollment. Palliative opportunities increased toward the EOL in all diseases (p < .0001). PC was consulted in 108 (36%) patients: LL (48%), ST (30%), and CNS (34%, p = .02). CONCLUSIONS: All children with cancer incur many events warranting PC support. Patients with ST and CNS tumors had more palliative opportunities than LL, yet received less subspecialty PC. Understanding palliative opportunities within each disease group can guide PC utilization to ease patient and family stress.
Identifier
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<a href="http://doi.org/10.1002/pbc.30081" target="_blank" rel="noreferrer noopener">10.1002/pbc.30081</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE3 - Oncology
Adolescent
Allen KE
Brock KE
Castellino SM
Child
Child Preschool
Clinical Trials Phase I as Topic
DeGroote NP
Ebelhar J
Humans
Infant
Infant Newborn
Labudde E
Leukemia
Lymphoma
Massie AM
Neoplasms/therapy
Only Child
Palliative Care
Pediatric Blood and Cancer
Quality Of Life
Recurrence
Retrospective Studies
Terminal Care/psychology
Wasilewski-Masker K
-
Dublin Core
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Title
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November 2023 List
Text
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Citation List Month
November List 2023
URL Address
<a href="http://doi.org/10.1111/apa.16901" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/apa.16901</a>
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More qualitative research is needed to unpack the complexities of resuscitation decisions for preterm infants
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Infant; human; palliative therapy; gestational age; medical decision making; practice guideline; Infant Premature; qualitative research; prematurity; pediatric patient; resuscitation; letter
Creator
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Cavolo A; Gastmans C
Description
An account of the resource
We read with interest Sriraman et al's (2023)1 response to our article ‘Resuscitation thresholds were seen as guidance by Belgian neonatologists and other relevant factors were included in decision-making’.2 We appreciate that other institutions use an integrative approach to resuscitation decisions for extremely premature infants, one that takes into proper account other prognostic factors as well as parents' opinion. We also find it alarming that so many neonatologists have negative attitudes towards resuscitation of infants at 22 and 23 weeks. We agree that it is acceptable to advise palliative care at these gestational ages as mortality and morbidity remain high, but parents should be involved in the decision-making and they should be allowed to opt for resuscitation. Physicians' negative attitudes might hinder true shared decision-making. In this regard, Sriraman et al indirectly identify another underlying issue related to our understanding of resuscitation decisions for premature infants. We have plenty of studies investigating physicians' attitudes towards resuscitation of these infants. However, the vast majority of empirical research on this topic is quantitative in nature.3 Quantitative studies are well suited to elicit general trends, in this case, whether on average physicians prefer to resuscitate at 22 and 23 weeks, but they are ill-suited to uncover the complexities behind such trend. In other terms, quantitative methods provide a valuable description of a certain phenomenon, but they cannot explain why things are the way they are. Applied to the context of resuscitation decisions for preterm infants, the lack of qualitative studies means that we know that physicians prefer palliative care at the lowest gestational ages, but we do not know why. On top of that, there is also little research on how physicians make resuscitation decisions in practice, meaning that we also do not know to what extent attitudes and practice correspond. As Sriraman et al pointed out we need to understand whether the fact that physicians prefer not to resuscitate at the lowest gestational ages means that they refuse all resuscitation requests. We also need to understand what factors influence these decisions. This knowledge is not only necessary to better understand this complex and ethically challenging decision-making, but it is also necessary to understand how to improve this decision-making. It can also offer important insight to draft guidelines that can better guide parents and healthcare providers through this process. Hence, we welcome the research that Sriraman's team is planning and we are looking forward to the results.
Identifier
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<a href="http://doi.org/10.1111/apa.16901" target="_blank" rel="noreferrer noopener">10.1111/apa.16901</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, International Journal of Paediatrics
Cavolo A
Gastmans C
Gestational Age
Human
Infant
Infant Premature
Letter
Medical Decision Making
November List 2037
Palliative Therapy
pediatric patient
Practice Guideline
Prematurity
Qualitative Research
Resuscitation
-
Dublin Core
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Title
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October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1136/spcare-2023-004305" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2023-004305</a>
Dublin Core
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Title
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Neonatal serious illness: operational definition
Publisher
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BMJ supportive & palliative care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Infant Newborn; terminal care; article; cohort analysis; controlled study; female; human; major clinical study; male; newborn; retrospective study; palliative therapy; pediatrics; infant; conversation; rank sum test; cause of death; hospital care; prognosis
Creator
An entity primarily responsible for making the resource
Guttmann K; Silverman R; Weintraub AS
Description
An account of the resource
OBJECTIVES: (1) To operationalise our previously published definition of neonatal serious illness by applying it to a patient cohort and (2) to evaluate timing of palliative care consultation, goals of care discussions and meeting serious illness criteria. METHOD(S): This was a retrospective chart review. Inborn neonates delivered between January 2006 and December 2020 who died prior to neonatal intensive care unit discharge were identified through EPIC query. Kruskal-Wallis and Mann-Whitney-U tests were used to compare time intervals relating to transition to serious illness across causes of death and other factors. chi2 tests were used to examine frequency of goals of care conversations by factors. RESULT(S): Eighty-eight per cent of patients met criteria for neonatal serious illness within 48 hours of life. There were no significant differences in transition to serious illness between preterm and term infants. Time to identification of serious illness varied significantly by cause of death. Palliative care was consulted for 5.7% of patients. CONCLUSION(S): All patients met criteria for serious illness early in life based on our definition. This definition may be useful for identifying neonates with serious illness in time to provide support. Additional work is needed to apply this definition prospectively to explore its utility for clinical care and research.Copyright © Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/spcare-2023-004305" target="_blank" rel="noreferrer noopener">10.1136/spcare-2023-004305</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
BMJ Supportive & Palliative Care
Cause Of Death
Cohort Analysis
Controlled Study
Conversation
Female
Guttmann K
Hospital care
Human
Infant
Infant Newborn
Major Clinical Study
Male
Newborn
October List 2041
Palliative Therapy
Pediatrics
Prognosis
rank sum test
Retrospective Study
Silverman R
Terminal Care
Weintraub AS
-
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Title
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October 2023 List
Text
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Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.50</a>
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Title
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Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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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
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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
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<a href="http://doi.org/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.50</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adolescent
Aidoo E
apparent life threatening event
Archives of Disease in Childhood
Artificial Ventilation
Awareness
Chan-Dominy A
Child
Clinical Article
Clinical Nurse Specialist
community care
conference abstract
Consultation
Controlled Study
Decision Making
Demographics
Diagnosis
E-mail
Education
Female
Follow Up
Freitas D
heart graft
Hospice
hospital discharge
Human
Infant
Length Of Stay
Life Sustaining Treatment
Male
Nkulu G
Nurse
Nursing Staff
October List 2031
organizational restructuring
outcome assessment
Oxygenation
Palliative Care
Palliative Therapy
Patient Referral
Pediatric Intensive Care Unit
Practice Guideline
Quality Of Life
Retrospective Study
Subhash S
Surgery
Trust
writing
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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September 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
September List 2023
URL Address
<a href="http://doi.org/10.1002/nop2.1928" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/nop2.1928</a>
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Title
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Parental experiences of prenatal education when preparing for labor and birth of infant with a lethal diagnosis
Publisher
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Nursing Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Infant; perinatal palliative care; birth plan; life-limiting fetal condition; perinatal palliative education; prenatal classes
Creator
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Tataj-Puzyna U; Baranowska B; Szlendak B; Szabat M; Węgrzynowska M
Description
An account of the resource
AIM: The aim of this study was to describe the unique experiences of parents facing a Life Limiting Fetal Conditions (LLFC) diagnosis, who chose to continue with their pregnancy, as they prepare for childbirth through individual and group prenatal education. DESIGN: A qualitative study. METHODS: We employed the phenomenological approach and the Colaizzi strategy to analyse semi-structured interviews. Thirteen persons were interviewed. The participants were couples (n = 6) and women (n = 7) who received LLFC and were preparing for birth. RESULTS: We described three main paths of prenatal education chosen by parents with LLFC: 'Searching for normality' concerned people participating in conventional prenatal classes (AC) who tried to avoid confronting the situation they faced; 'Searching for communitas' concerned the participation in special AC selected for the opportunity of sharing experiences; 'Searching for an individual way' concerned people who resorted to individual preparation for childbirth, often as a result of delayed planning. Parents should have a choice of various paths of birth preparation, that best meet their preferences.
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<a href="http://doi.org/10.1002/nop2.1928" target="_blank" rel="noreferrer noopener">10.1002/nop2.1928</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
Baranowska B
birth plan
Infant
life-limiting fetal condition
Nursing Open
Perinatal Palliative Care
perinatal palliative education
prenatal classes
September List 2056
Szabat M
Szlendak B
Tataj-Puzyna U
Węgrzynowska M
-
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Title
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August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.5546/aap.2022-02872.eng" target="_blank" rel="noreferrer noopener"> http://doi.org/10.5546/aap.2022-02872.eng</a>
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Decisions concerning resuscitation and end-of-life care in neonates. Bioethical aspects (Part II)
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Archivos Argentinos de Pediatria
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Infant, Newborn; Infant; Decision Making; Terminal Care; Withholding Treatment; Medical Futility; Bioethics; Terminal Care; Death; Resuscitation
Creator
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Mariani G; Arimany M
Description
An account of the resource
Coping with the death of a newborn infant requires training and reflection regarding the end-of-life decision-making process, communication with the family, and the care to be provided. The objective of this article is to analyze in depth the salient aspects of neonatal bioethics applied to end-of-life situations in newborn infants. Part I describes notions of therapeutic futility, redirection of care criteria, patient and family rights, and concepts about the value of life. Part II analyzes situations that deserve considering the redirection of care and delves into aspects of communication and the complex process of end-of-life decision-making in newborn infants.
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<a href="http://doi.org/10.5546/aap.2022-02872.eng" target="_blank" rel="noreferrer noopener">10.5546/aap.2022-02872.eng</a>
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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
Archivos Argentinos De Pediatria
Arimany M
August List 2039
Bioethics
Death
Decision Making
Humans
Infant
Infant, Newborn
Mariani G
Medical Futility
Resuscitation
Terminal Care
Withholding Treatment
-
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August 2023 List
Text
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Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1177/13674935211059041" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935211059041</a>
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Title
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Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions
Publisher
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Journal of Child Health Care
Date
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2023
Subject
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Humans; Infant; Decision Making; Communication; Qualitative Research; Uncertainty; Emotions; Parents; Parents/px [Psychology]; Decision Making
Creator
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Koch A; Albrecht T; Kozhumam AS; Son H; Brandon D; Docherty SL
Description
An account of the resource
Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitative descriptive study explores how parent and provider hope may influence decision making and care of a child born with CLTCs. A total of 193 interviews from 46 individuals (parents, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease (CCHD) were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making. Overall, parental hope remained strong and played a pivotal role in parental decision making. Parents and professional healthcare providers expressed a range of emotions that appeared to be integrally linked to hope and affected decision making. Providers and parents brought their own judgments, perceptions, and measure of hope to relationships, when there was common ground for expressing, and having, hope, shared decision making was more productive and they developed more effective relationships and communication. Relationships between parents and providers were particularly influenced by and contributory to hope. Communication between parents and providers was also responsible for and responsive to hope.
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<a href="http://doi.org/10.1177/13674935211059041" target="_blank" rel="noreferrer noopener">10.1177/13674935211059041</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Albrecht T
August List 2036
Brandon D
Communication
Decision Making
Docherty SL
Emotions
Humans
Infant
Journal Of Child Health Care
Koch A
Kozhumam AS
Parents
Parents/px [psychology]
Qualitative Research
Son H
Uncertainty
-
Dublin Core
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Title
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August 2023 List
Text
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Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.3389/fped.2023.1205543" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fped.2023.1205543</a>
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Title
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Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope
Publisher
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Frontiers in Pediatrics
Date
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2023
Subject
The topic of the resource
Palliative Care; diagnosis; human; patient care; palliative therapy; neurology; grief; Referral and Consultation; review; consultation; fetus; shared decision making; infant; decision making; medical care; uncertainty; prenatal period; vignette; social belief; brain; counseling; encephalocele; pregnancy; prognosis
Creator
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Cortezzo DE; Vawter-Lee M; Shoaib A; Venkatesan C
Description
An account of the resource
Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological diagnoses due to limitations of fetal imaging, prognostic uncertainty, and variability in neurodevelopmental outcomes. In the midst of uncertainty, families are challenged with preparing a care plan for their baby while simultaneously experiencing profound grief. The paradigms of perinatal palliative care can assist with the grieving process and help frame diagnostic testing and complex decision-making within the context of a family's spiritual, cultural, and social belief system. This ultimately leads to a shared decision-making process and value driven medical care. While perinatal palliative care programs have expanded, many families faced with such diagnoses never meet with a palliative care team prior to delivery. Moreover, there is significant variability in the availability of palliative care services throughout the country. Using an illustrative vignette of a patient with a prenatally diagnosed encephalocele, this review aims to provide a basic framework of perinatal palliative care for fetal neurology diagnoses that emphasizes 1) importance of clear, consistent, and transparent communication among all subspecialists and families, 2) creation of a palliative care birth plan, 3) importance of consistent care providers and longitudinal points of contact prenatally and post-delivery, 4) close communication between the prenatal and post-natal providers to allow for optimal continuity of care, and 5) recognize that information, care plans, and goals of care often evolve over time.
Identifier
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<a href="http://doi.org/10.3389/fped.2023.1205543" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1205543</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
August List 2029
Brain
Consultation
Cortezzo DE
Counseling
Decision Making
Diagnosis
encephalocele
Fetus
Frontiers in Pediatrics
Grief
Human
Infant
Medical Care
Neurology
Palliative Care
Palliative Therapy
Patient Care
Pregnancy
prenatal period
Prognosis
Referral And Consultation
Review
shared decision making
Shoaib A
social belief
Uncertainty
Vawter-Lee M
Venkatesan C
vignette
-
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Title
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August 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1016/j.pedn.2023.05.013" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.pedn.2023.05.013</a>
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A qualitative phenomenological study of nurses' experiences in caring for infants and children with life-limiting and life-threatening conditions
Publisher
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Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Infant; article; female; human; male; emotion; interview; psychologist; human experiment; nurse; avoidance behavior; qualitative research; neonatal intensive care unit; infant; phenomenology; care behavior; nursing care; physiological stress; child care; pediatric nursing; emotional intelligence
Creator
An entity primarily responsible for making the resource
Bassola B; Cilluffo S; Ongari E; Terzoni S; Targa A; Destrebecq A; Lusignani M
Description
An account of the resource
Abstract Purpose: To understand the experience of nurses caring for infants and children with life limiting and life-threatening conditions. Design and methods: A qualitative phenomenological study was conducted, collecting data through deep interviews. Sample included twenty-seven nurses working in paediatric and neonatal intensive care units. Results: Four themes emerged: suffering, being there, protect yourself and support. The experience of caring for children with limiting and life-threatening conditions affects nurses positively, with personal and professional gratification, but also negatively, as it leads to the development of compartmentalization, avoidance, and high levels of stress. Conclusions: The organization should make resources available to help nurses build resilience, improve emotional intelligence, and process experiences and emotions, thereby bringing benefits and improvements in infant and childcare. Practice implications: Comparison between colleagues is one of the most effective tools for supporting each other. Dedicated times and spaces to be able to carry out the debriefings managed by the nurses themselves, guided and mediated by an expert figure, such as a psychologist or a trainer, would be recommended.
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<a href="http://doi.org/10.1016/j.pedn.2023.05.013" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2023.05.013</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
August List 2024
avoidance behavior
Bassola B
care behavior
Child
Child Care
Cilluffo S
Destrebecq A
Emotion
Emotional Intelligence
Female
Human
Human Experiment
Infant
Interview
Journal of Pediatric Nursing
Lusignani M
Male
Neonatal Intensive Care Unit
Nurse
Nursing Care
Ongari E
Pediatric Nursing
Phenomenology
Physiological stress
Psychologist
Qualitative Research
Targa A
Terzoni S
-
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Title
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August 2023 List
Text
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Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1111/nicc.12943" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/nicc.12943</a>
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Title
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Neonatal organ donation: Retrospective audit into potential donation in a single neonatal unit
Publisher
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Nursing in Critical Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Infant, Newborn; England; article; human; newborn; newborn death; terminal care; documentation; human tissue; newborn intensive care; patient referral; neonatal intensive care unit; surgery; infant; conversation; nurse; cause of death; eligibility; transplantation; brain injury; cooling; organ donor
Creator
An entity primarily responsible for making the resource
Ali F; Chant K; Scales A; Sellwood M; Gallagher K
Description
An account of the resource
Background: Research has shown that many babies who die in neonatal units could have been potential tissue and/or organ donors. Despite the existence of guidelines supporting its implementation, the incidence of neonatal donation remains rare in the United Kingdom. Aim: The aim of this audit was to retrospectively determine potential eligibility for neonatal tissue and/or organ donation referral in infants who died in a single UK tertiary-level neonatal unit between 2012 and 2021. Cause of death and documentation of any discussions held regarding referral for donation were also explored. Study design: An audit was undertaken to identify all neonatal deaths at a single tertiary-level NICU in London from 2012-2021. Infants who retrospectively could have been referred as potential tissue and/or organ donors were identified using current NHS Blood and Transplant inclusion and exclusion criteria. Results and conclusion: A significant missed potential for neonatal tissue and/or organ donation referrals was identified, which is likely not just limited to the unit audited. Causes of death were as expected for a tertiary level neonatal unit and centre for therapeutic cooling of babies born with hypoxic perinatal brain injuries. Only one documented conversation was found regarding neonatal donation. Relevance to clinical practice: To enable conversations regarding neonatal donation to become a routine part of end-of-life care discussions with families as appropriate, good links between neonatal healthcare professionals and Specialist Nurses in Organ Donation need to be established. This will facilitate the referral of all suitable neonates as potential donors and ensure that neonatal staff feel supported to care for babies identified as potential donors.
Identifier
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<a href="http://doi.org/10.1111/nicc.12943" target="_blank" rel="noreferrer noopener">10.1111/nicc.12943</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
Ali F
Article
August List 2023
Brain Injury
Cause Of Death
Chant K
Conversation
cooling
Documentation
eligibility
England
Gallagher K
Human
Human Tissue
Infant
Infant, Newborn
Neonatal Intensive Care Unit
Newborn
Newborn Death
Newborn Intensive Care
Nurse
Nursing In Critical Care
organ donor
Patient Referral
Scales A
Sellwood M
Surgery
Terminal Care
Transplantation
-
Dublin Core
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Title
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June 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="https://link.springer.com/article/10.1007/s10943-022-01684-5">https://link.springer.com/article/10.1007/s10943-022-01684-5</a>
Dublin Core
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Silent Mourning: Infant Death and Caring for Iranian Parents Under the Influence of Religious and Socio-cultural Factors
Publisher
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Journal of religion and health
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Infant; Grief; Infant Newborn; Intensive Care Units Neonatal; Parents; Iran; Death; Bereavement; Infant Death
Creator
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Fadaei Z; Mirlashari J; Nikbakht NA; Ghorbani F
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).
Identifier
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<a href="https://link.springer.com/article/10.1007/s10943-022-01684-5">10.1007/s10943-022-01684-5</a>
2023
Bereavement
Death
Fadaei Z
Ghorbani F
Grief
Humans
Infant
Infant Death
Infant Newborn
Intensive Care Units Neonatal
Iran
Journal Of Religion And Health
June 2022 List
Mirlashari J
Nikbakht NA
Parents
-
Dublin Core
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Title
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June 2023 List
Text
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June 2022 List
URL Address
<a href="https://journals.sagepub.com/doi/10.1177/10499091231169497">https://journals.sagepub.com/doi/10.1177/10499091231169497</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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Intractable Feeding Intolerance in Children With Severe Neurological Impairment: A Retrospective Case Review of Nine Children Known to a Pediatric Palliative Care Service
Publisher
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American Journal of Hospice and Palliative Care
Date
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2023
Subject
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Child; Palliative Care; child; article; female; human; male; preschool child; palliative therapy; hospice; clinical article; intensive care; school child; documentation; Only Child; ethics; patient referral; adolescent; infant; stomach tube; deterioration; retrospective study; drug combination; conversation; nomenclature; neurologic disease; feeding difficulty; parenteral nutrition; case study; enteric feeding; neurodisability; digestive system function disorder
Creator
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Katz NT; Cooper MS; Kularatne A; Prebble A; McGrath KH; McCallum Z; Antolovich G; Sutherland I; Sacks BH
Description
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BACKGROUND: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood. <br/>OBJECTIVE(S): (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a contributor to their deterioration or death. (2) To consider terminology to describe the severe end of the spectrum of feeding difficulties in children with SNI. <br/>RESULT(S): Mean age at death was 10.3 years (range: 5 - 15.6), and median time from palliative care referral to death was 3.1 months. Location of death was home (n = 3), hospice (n = 1), and hospital (n = 5) with 1 death in intensive care. Gastrointestinal "failure" or "dysfunction" were documented for 7 children, (median time between documentation and death was 3.9 months (range: .1 to 13.1)). All children were fed via a gastrostomy tube during their life (median age of insertion 2.5 years (range: 1.2 to 6.8 years)), and 7 via the jejunal route (median age of insertion 9.2 years (range 2.4 to 14.7 years)). Children lived a median of 9 percent of their lives after jejunal tube feeding was commenced. No child had home-based parenteral nutrition. Multiple symptom management medications were required. <br/>CONCLUSION(S): 'Intractable feeding intolerance' describes a clinical crossroads in a child's life where there is an opportunity to consider the appropriateness of further interventions. Further work should explore predictors of intractable feeding intolerance and the delicate balance between cause or contributor to death. The importance of clinician-family prognostic conversations and goal-concordant care both during life and in the terminal phase is highlighted.
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).
Identifier
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<a href="https://journals.sagepub.com/doi/10.1177/10499091231169497">10.1177/10499091231169497</a>
2023
Adolescent
American Journal Of Hospice And Palliative Care
Antolovich G
Article
Case Study
Child
Clinical Article
Conversation
Cooper MS
Deterioration
digestive system function disorder
Documentation
drug combination
enteric feeding
Ethics
feeding difficulty
Female
Hospice
Human
Infant
Intensive Care
June 2022 List
Katz NT
Kularatne A
Male
McCallum Z
McGrath KH
Neurodisability
Neurologic Disease
Nomenclature
Only Child
Palliative Care
Palliative Therapy
Parenteral Nutrition
Patient Referral
Prebble A
Preschool Child
Retrospective Study
Sacks BH
School Child
stomach tube
Sutherland I