1
40
243
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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
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April List 2024
URL Address
<a href="http://doi.org/10.1177/00912174241229926" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/00912174241229926</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Flourishing, religion, and burnout among caregivers working in pediatric palliative care
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International Journal of Psychiatry in Medicine
Date
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2024
Subject
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child; Palliative Care; article; controlled study; female; human; male; palliative therapy; coping; dying; South Africa; qualitative analysis; caregiver; cross-sectional study; prevalence; adolescent; multidisciplinary team; convenience sample; job satisfaction; religion; work environment; life satisfaction; terminally ill patient; burnout; job stress
Creator
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Oberholzer AE; Doolittle BR
Description
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Introduction: Providers working with children who are dying are especially prone to burnout. Encouraging models of human flourishing may mitigate burnout and improve quality of care. However, models of job satisfaction and human flourishing have not been well-described. This project explores factors that promote human flourishing among caregivers working with children in pediatric palliative care in South Africa. Methods: A convenience sample of caregivers working in pediatric palliative care were invited to complete an anonymous, confidential survey comprised of validated instruments. The survey also included open-ended questions to explore opinions and attitudes about satisfaction, struggles, and coping. Results: Twenty-nine people from a variety of occupations and work environments completed the survey. The prevalence of burnout was 3/29 (10%). Life satisfaction was associated with private religious activities (P = .38, P < .05), and carrying religion into all aspects of life (P = .44, P < .05). Burnout was not associated with life satisfaction. Qualitative analysis of the open-ended questions revealed the following themes as factors contributing to their joy in work: being able to make a difference, finding meaning and purpose, having a relationship with the children and their families, and with the multi-disciplinary team. The greatest challenges in their work were identified as the lack of resources, challenges within their team, and emotional demands. Conclusions: Despite job stress and working with terminally ill children, several factors were associated with flourishing. These findings are particularly relevant to enhance caregiving in the resource-challenged setting of pediatric palliative care in South Africa.
Identifier
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<a href="http://doi.org/10.1177/00912174241229926" target="_blank" rel="noreferrer noopener">10.1177/00912174241229926</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
Article
Burnout
Caregiver
Child
Controlled Study
Convenience Sample
Coping
Cross-sectional Study
Doolittle BR
Dying
Female
Human
International Journal of Psychiatry in Medicine
Job Satisfaction
job stress
life satisfaction
Male
Multidisciplinary team
Oberholzer AE
Palliative Care
Palliative Therapy
Prevalence
Qualitative Analysis
Religion
South Africa
terminally Ill Patient
work environment
-
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/10.1186/s12904-024-01394-7" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-024-01394-7</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
child; Adolescent; Questionnaires; article; controlled study; female; human; male; palliative therapy; clinical article; caregiver; school child; human experiment; prospective study; adolescent; wakefulness; therapy; decision making; drug therapy; chronic disease; questionnaire; special situation for pharmacovigilance; actimetry; diagnostic procedure; protocol; sleep; actigraph; sleep efficiency; sleep time; stage 1 sleep; wake after sleep onset
Creator
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Kubek LA; Claus B; Zernikow B; Wager J
Description
An account of the resource
Background: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other measures of sleep diagnostics. Methods: In this monocentric prospective study N = 26 children and adolescents with life-limiting conditions treated on a pediatric palliative care unit were assessed. For three consecutive nights they wore an actigraph; the 24-hours sleep protocol documented by nurses and the Sleep Screening for Children and Adolescents with Complex Chronic Conditions (SCAC) answered by parents were analyzed. Patient characteristics and the parameters sleep onset, sleep offset, wake after sleep onset (WASO), number of wake phases, total sleep time (TST) and sleep efficiency (SE) were descriptively examined. Percentage bend correlations evaluated the three measures' concordance. Results: Descriptively, and except for the number of waking episodes, the different measures' estimations were comparable. Significant correlations existed between actigraphy and the sleep protocol for sleep onset (r = 0.83, p = < 0.001) and sleep offset (r = 0.89, p = < 0.001), between actigraphy and SCAC for SE (r = 0.59, p = 0.02). Conclusion: Agreement of actigraphy with the focused sleep measures seems to be basically given but to varying degrees depending on the considered parameters.
Identifier
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<a href="http://doi.org/10.1186/s12904-024-01394-7" target="_blank" rel="noreferrer noopener">10.1186/s12904-024-01394-7</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
actigraph
actimetry
Adolescent
April List 2024
Article
BMC Palliative Care
Caregiver
Child
Chronic Disease
Claus B
Clinical Article
Controlled Study
Decision Making
diagnostic procedure
Drug Therapy
Female
Human
Human Experiment
Kubek LA
Male
Palliative Therapy
Prospective Study
protocol
Questionnaire
Questionnaires
School Child
Sleep
sleep efficiency
sleep time
special situation for pharmacovigilance
stage 1 sleep
Therapy
Wager J
wake after sleep onset
Wakefulness
Zernikow B
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1093/pch/pxz066.129" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/pch/pxz066.129</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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Survival, short-term morbidity of extremely low gestational age infants and their predictors
Publisher
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Paediatrics and Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
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
An entity primarily responsible for making the resource
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
-
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.jpeds.2024.113930" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpeds.2024.113930</a>
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Title
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Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment
Publisher
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Journal of Pediatrics
Date
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2024
Subject
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Child; child; adult; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; chronic disease; Socioeconomic Factors; gestational age; Referral and Consultation; ethnicity; Only Child; patient referral; tertiary care center; morbidity; mortality; neurologic examination; multidisciplinary team; Hispanic; medicaid; racism; primary medical care; special situation for pharmacovigilance; racial disparity; economic inequality
Creator
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Jones MN; Simpson SL; Beck AF; Cortezzo DE; Thienprayoon R; Corley AMS; Thomson J
Description
An account of the resource
Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality. Study design: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team. The outcome was referral to palliative care. The primary exposure was race, categorized as Black or non-Black to represent the impact of anti-Black racism. Additional exposures included ethnicity (Hispanic/non-Hispanic) and insurance status (Medicaid/non-Medicaid). Descriptive statistics, bivariate analyses, and multivariable logistic regression models were performed to assess associations between exposures and palliative care referral. Results: A total of 801 patients with HI-NI were included; 7.5% received a palliative referral. There were no differences in gestational age, sex, or ethnicity between patients who received a referral and those who did not. In multivariable analysis, adjusting for ethnicity, sex, gestational age, and presence of complex chronic conditions, Black children (aOR 0.47, 95% CI 0.26, 0.84) and children with Medicaid insurance (aOR 0.40, 95% CI 0.23, 0.70) each had significantly lower odds of palliative referral compared with their non-Black and non-Medicaid-insured peers, respectively. Conclusions: We identified inequities in pediatric palliative care referral among children with HI-NI by race and insurance status. Future work is needed to develop interventions, with families, aimed at promoting more equitable, antiracist systems of palliative care.
Identifier
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<a href="http://doi.org/10.1016/j.jpeds.2024.113930" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2024.113930</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Adult
April List 2024
Article
Beck AF
Child
Chronic Disease
Cohort Analysis
Controlled Study
Corley AMS
Cortezzo DE
economic inequality
Ethnicity
Female
Gestational Age
Hispanic
Human
Jones MN
Journal of Pediatrics
Major Clinical Study
Male
Medicaid
Morbidity
Mortality
Multidisciplinary team
Neurologic Examination
Only Child
Patient Referral
primary medical care
racial disparity
racism
Referral And Consultation
Retrospective Study
Simpson SL
Socioeconomic Factors
special situation for pharmacovigilance
tertiary care center
Thienprayoon R
Thomson 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
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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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Finnish children who needed long-term home respiratory support had severe sleep-disordered breathing and complex medical backgrounds
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
Child; child; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; treatment duration; anxiety; comorbidity; Sleep Disorders; tracheostomy; long term care; follow up; Only Child; home care; university hospital; clinical feature; clinical outcome; psychological aspect; central nervous system disease; disease severity; apnea hypopnea index; adolescent; polysomnography; adenotonsillectomy; Down syndrome; infant; onset age; brain tumor; demographics; multidisciplinary team; data analysis software; developmental delay; tonsillectomy; neuromuscular disease; pneumonia; respiratory distress syndrome; craniofacial surgery; asthma; acute respiratory failure; beta adrenergic receptor blocking agent/pv [Special Situation for Pharmacovigilance]; montelukast/pv [Special Situation for Pharmacovigilance]; developmental disorder; aspiration pneumonia/co [Complication]; childhood obesity; continuous positive airway pressure; Finn (citizen); invasive ventilation; noninvasive positive pressure ventilation; sleep apnea syndromes/th [Therapy]; adenoid hypertrophy; angiotensin receptor antagonist/pv [Special Situation for Pharmacovigilance]; automatic positive airway pressure; beta 2 adrenergic receptor stimulating agent/ih [Inhalational Drug Administration]; beta 2 adrenergic receptor stimulating agent/pv [Special Situation for Pharmacovigilance]; brain hypoxia; cardiovascular agent/pv [Special Situation for Pharmacovigilance]; central sleep apnea syndrome/th [Therapy]; choana atresia/su [Surgery]; corticosteroid/ih [Inhalational Drug Administration]; corticosteroid/pv [Special Situation for Pharmacovigilance]; craniofacial malformation; cranioplasty; diaphragm hernia; dipeptidyl carboxypeptidase inhibitor/pv [Special Situation for Pharmacovigilance]; hypoventilation/th [Therapy]; ICD-10; laryngomalacia; Le Fort III osteotomy; lung hypoplasia; mask/am [Adverse Device Effect]; maxilla hypoplasia/co [Complication]; medical device complication/co [Complication]; nasal mask; nose obstruction/co [Complication]; obstructive sleep apnea/th [Therapy]; orthodontic procedure; respiratory care; skin irritation/co [Complication]; Sleep Apnea Syndromes; sleep disorder/co [Complication]; SPSS version 28.00; steroid/pv [Special Situation for Pharmacovigilance]; tonsillotomy
Creator
An entity primarily responsible for making the resource
Jarvela M; Katila M; Eskola V; Makinen R; Mandelin P; Saarenpaa-Heikkila O; Lauhkonen E
Description
An account of the resource
Aim: No studies have described long-term paediatric home respiratory support in Nordic countries. We examined the clinical characteristics and long-term outcomes of paediatric patients who received continuous positive airway pressure, non-invasive-positive-pressure ventilation and invasive ventilation from a multidisciplinary home respiratory support team. Methods: Retrospective tertiary-level data were collected between 1 January 2010 and 31 December 2020 in Tampere University Hospital. These comprised patient demographics, treatment course and polysomnography-confirmed sleep-disordered breathing (SDB). Results: There were 93 patients (63.4% boys). The median age at treatment initiation was 8.4 (range 0.11-16.9) years. The patients had: neuromuscular disease (16.1%), central nervous system disease (14.0%), developmental disabilities and congenital syndrome (29.0%), lung-airway conditions (11.8%), craniofacial syndrome (15.1%) and severe obesity (14.0%). More than two-thirds had severe SDB (66.7%) and the most common one was obstructive sleep apnoea in 66.7%. We found that 92.5% received long-term therapy for more than 3 months and the mean treatment duration was 3.3 ± 2.7 years. A non-invasive mask interface was used in 94.7% of cases and 5.3% needed tracheostomy ventilation. More than a quarter (26.7%) achieved disease resolution during the study period. Conclusion: Most children who needed long-term home respiratory support had complex conditions and severe, persistent SDB.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/apa.16981" target="_blank" rel="noreferrer noopener">10.1111/apa.16981</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Acta Paediatrica
acute respiratory failure
adenoid hypertrophy
adenotonsillectomy
Adolescent
angiotensin receptor antagonist/pv [Special Situation for Pharmacovigilance]
anxiety
apnea hypopnea index
April List 2024
Article
aspiration pneumonia/co [Complication]
Asthma
automatic positive airway pressure
beta 2 adrenergic receptor stimulating agent/ih [Inhalational Drug Administration]
beta 2 adrenergic receptor stimulating agent/pv [Special Situation for Pharmacovigilance]
beta adrenergic receptor blocking agent/pv [Special Situation for Pharmacovigilance]
brain hypoxia
Brain Tumor
cardiovascular agent/pv [Special Situation for Pharmacovigilance]
central nervous system disease
central sleep apnea syndrome/th [Therapy]
Child
childhood obesity
choana atresia/su [Surgery]
Clinical Feature
Clinical Outcome
Cohort Analysis
Comorbidity
Continuous Positive Airway Pressure
Controlled Study
corticosteroid/ih [Inhalational Drug Administration]
corticosteroid/pv [Special Situation for Pharmacovigilance]
craniofacial malformation
craniofacial surgery
cranioplasty
Data Analysis Software
Demographics
Developmental delay
developmental disorder
diaphragm hernia
dipeptidyl carboxypeptidase inhibitor/pv [Special Situation for Pharmacovigilance]
Disease Severity
Down Syndrome
Eskola V
Female
Finn (citizen)
Follow Up
Home Care
Human
hypoventilation/th [Therapy]
Icd-10
Infant
invasive ventilation
Jarvela M
Katila M
laryngomalacia
Lauhkonen E
Le Fort III osteotomy
Long Term Care
lung hypoplasia
Major Clinical Study
Makinen R
Male
Mandelin P
mask/am [Adverse Device Effect]
maxilla hypoplasia/co [Complication]
medical device complication/co [Complication]
montelukast/pv [Special Situation for Pharmacovigilance]
Multidisciplinary team
nasal mask
Neuromuscular Disease
noninvasive positive pressure ventilation
nose obstruction/co [Complication]
obstructive sleep apnea/th [Therapy]
Only Child
onset age
orthodontic procedure
Palliative Therapy
Pneumonia
Polysomnography
psychological aspect
respiratory care
Respiratory Distress Syndrome
Retrospective Study
Saarenpaa-Heikkila O
skin irritation/co [Complication]
Sleep Apnea Syndromes
Sleep Apnea Syndromes/th [Therapy]
sleep disorder/co [Complication]
Sleep Disorders
SPSS version 28.00
steroid/pv [Special Situation for Pharmacovigilance]
Tonsillectomy
tonsillotomy
Tracheostomy
treatment duration
University Hospital
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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/10.1017/S1478951523001852" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951523001852</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
Reiki intervention for supporting healthcare professional care behaviors in pediatric palliative care: A pilot study
Publisher
An entity responsible for making the resource available
Palliative and Supportive 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
burnout; care behavior; health care personnel; palliative therapy; psychologist; Reiki; alternative medicine; article; child; child psychology; clinical practice; clinical psychology; controlled study; diastolic blood pressure; emotional stress; heart rate; human; Italy; nurse; oxygen saturation; Palliative Care; Pilot Projects; pilot study; self care; special situation for pharmacovigilance; systolic blood pressure; work environment; workplace
Creator
An entity primarily responsible for making the resource
Zucchetti G; Ciappina S; Bottigelli C; Campione G; Parrinello A; Piu P; Lijoi S; Quarello P; Fagioli F
Description
An account of the resource
OBJECTIVES: Pediatric healthcare professionals (HCPs) working in a palliative setting may experience challenges during their clinical practice in addressing the complex end-of-life phase of children and their families. Nurses, especially, have a frontline role in providing assistance, thereby becoming at risk of physical and psychological burden. Pediatric psychologists have an ethical responsibility to help colleagues by proposing self-care interventions that will improve their well-being and, indirectly, the work climate. This study investigated the impact of a complementary therapy, delivered by a pediatric psychologist and a nurse, on physical and psychological variables among nurses at the Paediatric Hospice of the Regina Margherita Children's Hospital in Italy. <br/>METHOD(S): Thirty-five nurses participated in 5 weeks of Reiki sessions for an overall total of 175 sessions. The effect of the sessions was analyzed through a paired t-test analysis comparing the values of heart rate, oxygen saturation, and systolic and diastolic pressure collected before and after each session. The same test was conducted comparing the values of the 3 burnout subscales for each of the 35 nurses collected before the beginning of the first session with those collected at the end of the last session 2 months later. <br/>RESULT(S): Results underlined a positive short-term effect with a significant decrease in heart rate before and after each session (t = 11.5, p < .001) and in systolic pressure (t = 2, p < .05). In addition, a decrease in emotional exhaustion symptoms was found (t = 2.3, p < .05) at the end of the intervention. SIGNIFICANCE OF RESULTS: Reiki could be a valid strategy to complement traditional pediatric psychology clinical practice designed to protect HCPs from emotional and physical demands and to create a more supportive workplace for staff and patients alike.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S1478951523001852" target="_blank" rel="noreferrer noopener">10.1017/S1478951523001852</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
alternative medicine
Article
Bottigelli C
Burnout
Campione G
care behavior
Child
Child Psychology
Ciappina S
Clinical Practice
clinical psychology
Controlled Study
diastolic blood pressure
Emotional Stress
Fagioli F
Health Care Personnel
Heart Rate
Human
Italy
Lijoi S
March List 2024
Nurse
oxygen saturation
Palliative And Supportive Care
Palliative Care
Palliative Therapy
Parrinello A
Pilot Projects
Pilot Study
Piu P
Psychologist
Quarello P
Reiki
Self Care
special situation for pharmacovigilance
systolic blood pressure
work environment
Workplace
Zucchetti G
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2024 List
Text
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March List 2024
URL Address
<a href="http://doi.org/10.1016/j.nepr.2024.103885" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.nepr.2024.103885</a>
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Title
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Training perinatal nurses in palliative communication by using scenario-based simulation: A quasi-experimental study
Publisher
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Nurse Education in Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
interpersonal communication; nurse; palliative therapy; quasi experimental study; simulation; Taiwan; training; article; communication skill; continuing education; controlled study; delivery room; experimental design; female; health care personnel; human; intensive care unit; learning; newborn; purposive sample; registered nurse; structured questionnaire; teaching; terminal disease; therapy
Creator
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Chen HW; Cheng SF; Hsiung Y; Chuang YH; Liu TY; Kuo CL
Description
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Aim: This study aimed to assess the impact of two educational modules on enhancing the communication confidence, competence and performance of perinatal nurses in the context of palliative care. Background: Concerns have arisen regarding the preparedness of perinatal nurses in delivering palliative care, especially in terms of deficiencies in communication skills and negative attitudes toward making life-support decisions for parents facing neonates with terminal conditions. Bridging this gap necessitates improved perinatal palliative care education for healthcare providers. Research has shown that simulation-based teaching effectively enhances procedural competence, communication skills and confidence among healthcare professionals. However, comprehensive curricula focusing on perinatal palliative communication remain limited. Design: This study used a quasi-experimental design employing a two-group repeated measure approach. It involved a purposive sample of 79 perinatal nurses from a hospital in northern Taiwan. Methods: A palliative communication course specifically designed for registered nurses in perinatal units was developed. Participants were allocated to either the experimental group (Scenario-Based Simulation, SBS) or the control group (traditional didactic lecture). Communication confidence and competence were assessed before and immediately after the course through structured questionnaires. Learning satisfaction was collected post-intervention and participants underwent performance evaluation by standardized parents one week later. Results: A significant training gap in palliative care exists among nurses in OB/GYN wards, delivery rooms and neonatal critical care units, highlighting the need for continuing education. All 79 participants completed the training course. Following the intervention, nurses in the SBS group (n=39) exhibited significant improvements in self-reported confidence (p <0.05), competence (p <0.01) and performance (p <0.001) in neonatal palliative communication compared with the traditional didactic lecture group (n=40). The SBS group also received higher satisfaction ratings from nurse learners (p <0.001). Conclusions: The research findings support scenario-based simulation as a more effective educational approach compared with traditional didactic lectures for enhancing communication confidence and competence. These results were further reinforced by evaluation from standardized patients, highlighting the value of direct feedback in enhancing nurses' performance. Tailoring SBS designs to diverse nursing contexts and incorporating a flipped approach can further enrich the overall learning experience. Given its high effectiveness and positive reception, we recommend integrating this educational module into palliative care training programs for perinatal nurses.
Identifier
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<a href="http://doi.org/10.1016/j.nepr.2024.103885" target="_blank" rel="noreferrer noopener">10.1016/j.nepr.2024.103885</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
Article
Chen HW
Cheng SF
Chuang YH
Communication Skill
continuing education
Controlled Study
Delivery Room
experimental design
Female
Health Care Personnel
Hsiung Y
Human
Intensive Care Unit
Interpersonal Communication
Kuo CL
Learning
Liu TY
March List 2024
Newborn
Nurse
Nurse Education In Practice
Palliative Therapy
Purposive Sample
quasi experimental study
registered nurse
Simulation
structured questionnaire
Taiwan
Teaching
terminal disease
Therapy
Training
-
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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/10.1089/jpm.2023.0147" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0147</a>
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Title
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Community-Based Pediatric Palliative Care: How Services Support Children's and Families' Quality of Life
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
mental health; child; article; controlled study; human; male; palliative therapy; pain; sibling; spiritual care; quality of life; interview; interpersonal communication; cost effectiveness analysis; adolescent; socialization; caregiver; convenience sample; bereavement support; family; clinician; participatory research; self care; psychological well-being; physical well-being; disease management; community; community integration
Creator
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Wang Y; Ferreira E; Savageau J; Beitman A; Young M; Gabovitch E; Merriam G; Jozan A; Padgett K; Bateman S
Description
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Background: The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with life-limiting conditions and their families. CBPPC services aim to improve children and families' quality of life (QOL). <br/>Objective(s): To identify perceived domains of QOL important for children and families and to understand whether and how CBPPC supports QOL. <br/>Design(s): A community-based participatory research framework was used to develop recruitment and data collection materials for eight focus groups and seven interviews. Collected data were transcribed and analyzed with an inductive approach. Setting/Subjects: A convenience sample of 33 PPCN caregivers, 20 providers, and seven key informants, including policymakers, community organizations, and hospital-based clinicians, were interviewed virtually in the United States. Measurements: Perceived QOL domains for children and families, respectively, and perceived impact of CBPPC services on QOL. <br/>Result(s): Reported QOL domains described as important for children were socialization/community integration and accessibility; expression/play; and physical wellness. Control or autonomy, psycho-emotional wellness, and self-care were identified as important for families. Clinical services were described as "integral to mental health" through offered spiritual support; advocacy in the community; and education. PPCN's integrative services were noted as distractions from pain and helped improve communication and bonding. Sibling support and bereavement care were also mentioned as impactful on QOL. <br/>Conclusion(s): Family-centered CBPPC was described as supportive of children's and families' QOL. Future studies should consider using population-based QOL measures, leveraging the QOL domains identified through this analysis and other outcome measures in a cost-effectiveness analysis.
Identifier
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<a href="http://doi.org/10.1089/jpm.2023.0147" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0147</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
Bateman S
Beitman A
Bereavement Support
Caregiver
Child
Clinician
Community
community integration
Controlled Study
Convenience Sample
Cost Effectiveness Analysis
Disease Management
Family
February List 2024
Ferreira E
Gabovitch E
Human
Interpersonal Communication
Interview
Journal of Palliative Medicine
Jozan A
Male
Mental Health
Merriam G
Padgett K
Pain
Palliative Therapy
participatory research
physical well-being
Psychological Well-being
Quality Of Life
Savageau J
Self Care
Sibling
Socialization
Spiritual Care
Wang Y
Young M
-
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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/10.1186/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
The topic of the resource
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
-
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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/10.1111/hex.13925" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/hex.13925</a>
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Title
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What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis
Publisher
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Health Expectations
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; disability; article; controlled study; female; human; male; palliative therapy; preschool child; child parent relation; aged; interview; parent; interpersonal communication; school child; intellectual impairment; qualitative research; side effect; hospital care; adolescent; health care system; drug therapy; semi structured interview; adverse drug reaction; patient safety; pediatric hospital; thematic analysis; special situation for pharmacovigilance; kindness
Creator
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Ong N; Lucien A; Long J; Weise J; Burgess A; Walton M
Description
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Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. Design, setting and participants: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. Results: Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context. Conclusions: The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. Patient and public contribution: Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews.
Identifier
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<a href="http://doi.org/10.1111/hex.13925" target="_blank" rel="noreferrer noopener">10.1111/hex.13925</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
Adverse Drug Reaction
Aged
Article
Burgess A
Child
Child Parent Relation
Controlled Study
Disability
Drug Therapy
February List 2024
Female
Health Care System
Health Expectations
Hospital care
Human
Intellectual Impairment
Interpersonal Communication
Interview
kindness
Long J
Lucien A
Male
Ong N
Palliative Therapy
Parent
Patient Safety
Pediatric Hospital
Preschool Child
Qualitative Research
School Child
Semi Structured Interview
Side Effect
special situation for pharmacovigilance
Thematic Analysis
Walton M
Weise J
-
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Title
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February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1016/j.jped.2023.09.009" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jped.2023.09.009</a>
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Title
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Implementing Palliative care, based on family-centered care, in a highly complex neonatal unit
Publisher
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Jornal 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
child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; terminal care; prognosis; neonatal intensive care unit; newborn death; congenital malformation; observational study; mortality; transitional care; cause of death; intimacy
Creator
An entity primarily responsible for making the resource
Morillo PA; Clotet CJ; Camprubi CM; Blanco DE; Silla GJ; Riverola de Veciana A
Description
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Objective To describe the causes and circumstances of neonatal mortality and determine whether the implementation of a palliative care protocol has improved the quality of end-of-life care. Methods A retrospective observational study including all patient mortalities between January 2009 and December 2019. Cause of death and characteristics of support during the dying process were collected. Two periods, before and after the implementation of a palliative care protocol, were compared. Results There were 344 deaths. Congenital malformations were the most frequent cause of death (45.6 %). Most patients died after the transition to palliative care (74.4 %). The most frequently cited criteria for initiating transition of care was poor neurocognitive prognosis (47.2 %). Parents accompanied their children in the dying process in 72 % of cases. Twenty-three percent of patients died outside the Neonatal Intensive Care Unit after being transferred to a private room to enhance family intimacy. After the addition of the palliative care protocol, statistically significant differences were observed in the support and patient experience during the dying process. Conclusions The most frequent causes of death were severe congenital malformations. Most patients died accompanied by their parents after the transition to palliative care. The implementation of a palliative care protocol helped to improve the family-centered end-of-life care.
Identifier
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<a href="http://doi.org/10.1016/j.jped.2023.09.009" target="_blank" rel="noreferrer noopener">10.1016/j.jped.2023.09.009</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
Blanco DE
Camprubi CM
Cause Of Death
Child
Clotet CJ
Congenital Malformation
Controlled Study
February List 2024
Female
Human
intimacy
Jornal De Pediatria
Major Clinical Study
Male
Morillo PA
Mortality
Neonatal Intensive Care Unit
Newborn Death
Observational Study
Palliative Therapy
Prognosis
Retrospective Study
Riverola de Veciana A
Silla GJ
Terminal Care
Transitional Care
-
Dublin Core
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Title
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February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2023.10.015" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.10.015</a>
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Title
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Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria: Improving Prenatal Palliative Care Consultation through Quality Improvement
Publisher
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Journal of Pain and Symptom Management
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; controlled study; female; human; palliative therapy; consultation; outcome assessment; congenital malformation; patient referral; eligibility; pregnancy; total quality management
Creator
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Lin M; Rholl E; Andescavage N; Ackerman O; Fisher D; Lanzel AF; Mahmood LA
Description
An account of the resource
Three percent of pregnancies are complicated by congenital anomalies. Prenatal integration of pediatric palliative care (PPC) may be hindered by non-standardized PPC referral processes. This quality improvement (QI) project aimed to improve prenatal PPC consultation using a diagnostic trigger list. Measures: Main outcome measure was the percentage of prenatal PPC consults completed based on diagnostic trigger list eligibility. Balancing measures included stakeholder perspectives on PPC consults and products. Intervention: Interventions included creation and implementation of a diagnostic trigger list for prenatal PPC consultation, educational initiatives with stakeholders, and iterative modifications of our prenatal consultation process. Outcomes: Interventions increased consultation rates ≥80% during the first six months of QI implementation (baseline vs. post-interventions) although this increase was not consistently sustained over a 12-month period. Conclusions/lessons learned: Diagnostic trigger lists improve initial rates of prenatal PPC consultation and additional interventions are likely needed to sustain this increase.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.10.015" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.10.015</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Ackerman O
Andescavage N
Article
Child
Congenital Malformation
Consultation
Controlled Study
Diagnosis
eligibility
February List 2024
Female
Fisher D
Human
Journal of Pain and Symptom Management
Lanzel AF
Lin M
Mahmood LA
outcome assessment
Palliative Therapy
Patient Referral
Pregnancy
Rholl E
Total Quality Management
-
Dublin Core
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Title
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February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1177/10497323231201023" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10497323231201023</a>
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Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study
Publisher
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Qualitative Health Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; article; controlled study; human; prematurity; palliative therapy; child parent relation; grief; uncertainty; bereavement; ethics; congenital malformation; morality; neonatal intensive care unit; infant; decision making; medical care; narrative
Creator
An entity primarily responsible for making the resource
Lakhani J; Mack C; Kunyk D; van Manen M
Description
An account of the resource
Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are many infants that not only do not survive but also have a medicalized death necessitating complex decision-making, weighing quality versus duration of life. We can learn from the stories of parents who chose palliative care for their children. In this narrative inquiry study, we elicited bereaved parents' stories and reflections on the lives of their children and the care they received in the NICU. From a narrative ethics perspective, their stories speak to normative aspects of parenting, decision-making, and receiving medical care that affect their moral sense-making of their NICU experiences as well as their longer-term living with the loss of their children. Their stories express the importance of having had meaningful time with their children, maintaining direct and frequent communication, acknowledging uncertainty, and emphasizing compassion as methods of providing support to parents as they navigate their bereavement.
Identifier
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<a href="http://doi.org/10.1177/10497323231201023" target="_blank" rel="noreferrer noopener">10.1177/10497323231201023</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
Bereavement
Child
Child Parent Relation
Congenital Malformation
Controlled Study
Decision Making
Ethics
February List 2024
Grief
Human
Infant
Kunyk D
Lakhani J
Mack C
Medical Care
Morality
Narrative
Neonatal Intensive Care Unit
Palliative Therapy
Prematurity
Qualitative Health Research
Uncertainty
van Manen M
-
Dublin Core
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Title
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February 2024 List
Text
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/jcm12206588" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/jcm12206588</a>
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Title
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Changes in the End-of-Life Process in Patients with Life-Limiting Diseases through the Intervention of the Pediatric Palliative Care Team
Publisher
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Journal of Clinical Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; article; controlled study; female; human; male; palliative therapy; clinical article; satisfaction; sex difference; adolescent; drug withdrawal; medical record; emotional support; intubation; at home mortality
Creator
An entity primarily responsible for making the resource
Kwon JE; Kim YH
Description
An account of the resource
Kyungpook National University Children's Hospital initiated pediatric palliative care (PPC) services in January 2019, focusing on children and adolescents with life-limiting conditions (LLC). A study examined changes in the end-of-life processes in patients with LLC before and after a PPC intervention. This study included 48 deceased patients under 18 years at the hospital, divided into two groups: January 2015 to December 2016 without PPC (25 patients, Period 1) and January 2019 to April 2022 with PPC (23 patients, Period 2). Analysis of medical records revealed the following: no age/sex differences; more active advanced care planning in Period 2 (15/23 vs. 7/25, p = 0.01); discussing withholding/withdrawing treatment increased in Period 2 (91.3% vs. 64.0%, p = 0.025); intubation and CPR were less frequent in Period 2 (intubation 2/23 vs. 19/25, p = 0.000; CPR 3/23 vs. 11/25, p = 0.018); Period 1 had more deaths in the ICU (18/25 vs. 10/23, p = 0.045); and 3 patients in Period 2 chose home deaths. A survey in Period 2 revealed high satisfaction with emotional support (91.7%), practical assistance (91.6%), and symptom management (83.3%). PPC facilitated discussions on advanced care planning and treatment choices, ensuring peaceful and prepared farewells for children with LLC and their families.
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<a href="http://doi.org/10.3390/jcm12206588" target="_blank" rel="noreferrer noopener">10.3390/jcm12206588</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
at home mortality
Child
Clinical Article
Controlled Study
Drug Withdrawal
emotional support
February List 2024
Female
Human
Intubation
Journal of Clinical Medicine
Kim YH
Kwon JE
Male
Medical Record
Palliative Therapy
Satisfaction
sex difference
-
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February 2024 List
Text
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February List 2024
URL Address
<a href="http://doi.org/10.1089/jpm.2023.0292" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0292</a>
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Implementation of an Innovative Palliative Care Screening Tool in the Pediatric Intensive Care Unit: A Pilot Study
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Journal of Palliative Medicine
Date
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2023
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child; article; controlled study; female; human; major clinical study; male; chronic disease; palliative therapy; comorbidity; pilot study; pediatric intensive care unit; congenital malformation; intensive care; prospective study; tertiary health care
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Hodge CH; Kerris EW; Freeman MC; Eckman ST; Deeter DM; Even KM
Description
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Background: Pediatric palliative care (PPC) can improve the quality of care provided to critically ill children with a high risk of morbidity and mortality. Early identification of patients admitted to the pediatric intensive care unit (PICU) who may benefit from PPC involvement is essential. Objectives: To create a brief screening tool, the Pediatric Intensive Care-Pediatric Palliative Care Screen, identifying PICU patients most likely to benefit from PPC involvement and to assess if weekly screening with this screening tool increases the number of PPC consults placed in the PICU. Methods: This is a prospective investigational single-center study in a 24-bed PICU at a U.S. tertiary care children's hospital. Weekly screening was completed by two clinicians for a six-month period between April and October 2022. Results: A total of 162 screens were completed on 124 individual patients; 47 screens were positive (29%), and 115 were negative (71%). Fourteen new PPC consults were placed from the PICU with one PPC consult for every 36.7 compared with one PPC for every 41.4 admissions the previous year. Of the positive screens, 68% had two or more comorbidities at the time of PICU admission versus 26% of negative screens (p < 0.001). Technology dependence (57% vs. 5%, p < 0.001) and presence of congenital defects (26% vs. 10%, p = 0.013) were significantly more common among positive screens. Conclusions: Weekly screening with a short, 7-question screening tool can identify PICU patients most likely to benefit from a PPC consult. Patients with chronic illnesses and baseline comorbidities are most likely to screen positive.
Identifier
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<a href="http://doi.org/10.1089/jpm.2023.0292" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0292</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
Child
Chronic Disease
Comorbidity
Congenital Malformation
Controlled Study
Deeter DM
Eckman ST
Even KM
February List 2024
Female
Freeman MC
Hodge CH
Human
Intensive Care
Journal of Palliative Medicine
Kerris EW
Major Clinical Study
Male
Palliative Therapy
Pediatric Intensive Care Unit
Pilot Study
Prospective Study
tertiary health care
-
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Title
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February 2024 List
Text
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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
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2023
Subject
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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
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Goswami J; Baxter J; Schiltz BM; Elsbernd TA; Arteaga GM; Klinkner DB
Description
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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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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
-
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Title
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February 2024 List
Text
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February List 2024
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<a href="http://doi.org/10.1186/s12904-023-01326-x" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01326-x</a>
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Title
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The NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care
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; adult; article; controlled study; human; male; newborn; palliative therapy; newborn death; perinatal death; terminal care; total quality management; systematic review; interview; newborn intensive care; health care personnel; therapy; Delphi study
Creator
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Gallagher K; Chant K; Mancini A; Bluebond-Langner M; Marlow N
Description
An account of the resource
Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals, parents may make the decision to stop active treatment and focus on ensuring their baby has a 'good' death. There is very little evidence to support the clinical application of neonatal palliative care and/or end-of-life care, resulting in variation in clinical provision between neonatal units. Developing core outcomes for neonatal palliative care would enable the development of measures of good practice and enhance our care of families. The aim of this study is to develop a core outcome set with associated tools for measuring neonatal palliative care. Method: This study has four phases: (1) identification of potential outcomes through systematic review and qualitative interviews with key stakeholders, including parents and healthcare professionals (2) an online Delphi process with key stakeholders to determine core outcomes (3) identification of outcome measures to support clinical application of outcome use (4) dissemination of the core outcome set for use across neonatal units in the UK. Key stakeholders include parents, healthcare professionals, and researchers with a background in neonatal palliative care. Discussion: Developing a core outcome set will standardise minimum reported outcomes for future research and quality improvement projects designed to determine the effectiveness of interventions and clinical care during neonatal palliative and/or end-of-life care. The core outcome set will provide healthcare professionals working in neonatal palliative and/or end-of-life support with an increased and consistent evidence base to enhance practice in this area. Trial registration: The study has been registered with the COMET initiative ( https://www.comet-initiative.org/Studies/Details/1470 ) and the systematic review is registered with the International Prospective Register of Systematic Reviews (PROSPERO) (CRD42023451068).
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01326-x" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01326-x</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adult
Article
Bluebond-Langner M
BMC Palliative Care
Chant K
Child
Controlled Study
Delphi Study
February List 2024
Gallagher K
Health Care Personnel
Human
Interview
Male
Mancini A
Marlow N
Newborn
Newborn Death
Newborn Intensive Care
Palliative Therapy
Perinatal Death
Systematic Review
Terminal Care
Therapy
Total Quality Management
-
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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/10.1016/j.arcped.2023.09.014" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.arcped.2023.09.014</a>
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Title
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Withholding life support for children with severe neurological impairment: Prevalence and predictive factors prior to admission in the PICU
Publisher
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Archives de Pediatrie
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; intensive care unit; assisted ventilation; pediatric intensive care unit; intensive care; therapy; pediatrician; prevalence; functional status; disability; special situation for pharmacovigilance
Creator
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Duval C; Porcheret F; Toulouse J; Alexandre M; Roulland C; Viallard ML; Brossier D
Description
An account of the resource
Our study aimed to evaluate the prevalence and predictive factors of withholding life support for children suffering from severe neurological impairment before admission to the pediatric intensive care unit (PICU). Method: Children under 18 years of age with severe neurological impairment, who were hospitalized between January 2006 and December 2016, were included in this retrospective study. They were allocated to a withholding group or a control group, depending on whether life support was withheld or not, before admission to the PICU. Results: Overall, 119 patients were included. At admission to the PICU, the rate of withholding life support was 10 % (n = 12). Predictive factors were: (1) a previous stay in the PICU (n = 11; 92 %, p<0.01, odds ratio [OR]: 14 [2-635], p = 0.001); (2) the need for respiratory support (n = 5; 42 %, p = 0.01, OR: 6 [1-27], p = 0.01); (3) the need for feeding support (n = 10; 83 %, p = 0.01, OR: 10 [2-100], p = 0.001); and (4) a higher functional status score (FSS: 16 [12.5-19] vs. 10 [8-13], p<0.01). Conclusion: The withholding of life support for children suffering from severe neurological impairment appeared limited in our pediatric department. The main predictor was at least one admission to the PICU, which raised the question of the pediatrician's role in the decision to withhold life support.
Identifier
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<a href="http://doi.org/10.1016/j.arcped.2023.09.014" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2023.09.014</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
Alexandre M
Archives de Pediatrie
Article
assisted ventilation
Brossier D
Child
Controlled Study
Disability
Duval C
February List 2024
Female
Functional Status
Human
Intensive Care
Intensive Care Unit
Major Clinical Study
Male
Palliative Therapy
Pediatric Intensive Care Unit
Pediatrician
Porcheret F
Prevalence
Retrospective Study
Roulland C
special situation for pharmacovigilance
Therapy
Toulouse J
Viallard ML
-
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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/10.1016/j.jpainsymman.2023.11.005" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2023.11.005</a>
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Title
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In every detail: spiritual care in pediatric palliative care perceived by healthcare providers
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; article; controlled study; human; palliative therapy; China; interview; health care personnel; qualitative research; social worker; therapy; thematic analysis; religion; nurse; spiritual care; developing country
Creator
An entity primarily responsible for making the resource
Cheng L; Cai S; Zhou X; Zhai X
Description
An account of the resource
Spiritual care is an essential domain of pediatric palliative care. The current mainland China faces a lack of national guidance and a shortage of specialized personnel to provide spiritual care in a traditional developing country. Objectives: To identify spiritual care in pediatric palliative care services in mainland China from the perspective of healthcare professionals. Methods: A qualitative descriptive interview study was conducted individually with 27 participants: 14 physicians, seven nurses, and six social workers. The data were analyzed using thematic analysis. Results: Participants described that the essence of spiritual support was provided "in every detail" throughout pediatric palliative care. Four major themes and eleven subthemes were identified. 1) Assessing spiritual needs: paying attention to different perspectives; considering religion, tradition, and culture; discovering spiritual needs behind other needs. 2) Facilitating spiritual exploration: being with the family; providing resources; guiding by providers' own faith; 3) Supporting connections: encouraging the building of personal bonds; facilitating the establishment of spiritual connections. 4) Relieving spiritual suffering: facilitating a family review of child's life; supporting building meaning in daily life; assisting in leaving a legacy for the child. Conclusion: This study illustrated that current spiritual support, though not formally organized, is provided individually in pediatric palliative care services in mainland China. Strategies for a practice guide, education and training for professionals, and cultural building need to be rationally developed to strengthen and structure spiritual support integrated into pediatric palliative care.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.11.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.11.005</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
Cai S
Cheng L
Child
China
Controlled Study
developing country
February List 2024
Health Care Personnel
Human
Interview
Journal of Pain and Symptom Management
Nurse
Palliative Therapy
Qualitative Research
Religion
Social Worker
Spiritual Care
Thematic Analysis
Therapy
Zhai X
Zhou X
-
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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/s12904-023-01307-0" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01307-0</a>
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Title
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A shared decision-making model in pediatric palliative care: a qualitative study of healthcare providers
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; adult; article; controlled study; human; male; palliative therapy; knowledge; health care personnel; physician; qualitative research; social worker; phenomenology; decision making; semi structured interview; nurse; shared decision making; conceptual model; family centered care; pharmaceutics
Creator
An entity primarily responsible for making the resource
Cai S; Cheng L; Wang R; Zhou X; Peng X
Description
An account of the resource
Pediatric shared decision-making (SDM) is a fundamental part of family-centered care. Pediatric palliative care (PPC) is one of the more difficult fields for healthcare providers when choosing to utilize SDM. However, to our knowledge, there are still few structured approaches of SDM in PPC. We aimed to build a model of SDM in PPC that achieves better care and outcomes for children and their family members. Methods: This study is a descriptive phenomenology study. Participants included physicians, nurses, and social workers in the PPC team. Participants were individually interviewed face-to-face or via an online meeting software. Data were collected in semi-structured interviews and analyzed using a thematic framework analysis. Results: In total, 27 healthcare providers were interviewed. The model of SDM in PPC identified three themes, including the participants, the principle and the process of SDM. Decision participants involved the children, parents, the PPC team and others. The decision principle had three sub-themes including type, standard and precondition. The decision process describes the fundamental process of SDM and provides suggestions for mobilizing patients and parents to engage in decision-making and seeking conflict resolution. Conclusions: This is the first study to develop a SDM model in PPC. This model can provide guidance to PPC teams on SDM practices. In addition, the model contributes to the existing body of knowledge by providing a conceptual model for SDM in the context of PPC.
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01307-0" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01307-0</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adult
Article
BMC Palliative Care
Cai S
Cheng L
Child
conceptual model
Controlled Study
Decision Making
Family Centered Care
February List 2024
Health Care Personnel
Human
Knowledge
Male
Nurse
Palliative Therapy
Peng X
pharmaceutics
Phenomenology
Physician
Qualitative Research
Semi Structured Interview
shared decision making
Social Worker
Wang R
Zhou X
-
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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/10.3390/children10101635" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10101635</a>
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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>
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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
-
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Title
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231172891</a>
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Pediatric Cancer and Palliative Care in Conflict Affected Area
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Palliative Care; controlled study; female; human; major clinical study; male; palliative therapy; survival rate; pain; awareness; cancer patient; cancer survival; university hospital; opiate; conference abstract; refugee; medical society; health insurance; investment; Turkey (republic); cancer control; hospital bed capacity; Turk (people)
Creator
An entity primarily responsible for making the resource
Kutluk T
Description
An account of the resource
Background/aims: Turkey has a population fo 85 million and also hosts the larger number of refugees with 3,7 million mainly from Syrian. Globocan 2020 data estimates 233,000 new cancer cases and 126,000 deaths due to cancer. By the end of the 90s, the palliative care (PC) services were very limited with lack of trained professionals, low awareness and limited access to opioids. <br/>Method(s): The investments from Professional organizations and goverment started mainly after 2000's but still limited. The first Cancer Control Programme was released by Ministry of health (MoH) in 2008, and implemented the Palliaturk project in 2011, targeting the pain control and community based PC model. PC directive was released in 2015. <br/>Result(s): The International PC scale ranking named Turkey in group 2 in 2006, and moved up to group 3b in 2011, then in group 3a in 2017, which is the isolated PC provision. After the start of Palliaturk project in 2011, the investment continued from the MoH. The number of the beds for palliative cares were increased to 5577 in 2021 which was very low in number before 2014. Turkey also implemented the Universal Health Coverage in 2012, >98% of the population are covered by UHC. In a short survey from the 21 Southern Turkey's major University hospitals, only 8 has palliative care services and 4 has palliative care exclusive staff although providing the PC services. Twelwe was also providing the PC services for refugees. The annual number of new pediatric cancer patients is estimated around 3000 per year, the palliative care services were mainly provided within the oncology services. There were 10 paediatric PC services with 119 bed capacity in 2021 for all pediatric patiens in nation, not specifically for cancer patients. In a recent analysis of cancer in Syrian refugees living in the city of Konya, we reported the 3 year survival rates as 69.5 probably less in 5 years. We also found that the 5 years survival rates was about 30% in Syrian refugee children with cancer living in Southern Turkey. The five years survival rates for Turkish children is about 70%. <br/>Conclusion(s): There is still a need of investment on palliative care services for pediatric cancer patients and integration of PC services to current cancer care is also essential.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE5 - Low Resource Setting
Awareness
cancer control
Cancer Patient
Cancer Survival
Child
conference abstract
Controlled Study
Female
health Insurance
Hospital Bed Capacity
Human
investment
Kutluk T
Major Clinical Study
Male
Medical Society
Opiate
Pain
Palliative Care
Palliative Medicine
Palliative Therapy
refugee
Survival Rate
Turk (people)
Turkey (republic)
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
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/10.1017/S147895152200181X" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S147895152200181X</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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Psychometric properties of the Turkish version of the Stress Scale for Nurses Providing End-of-Life Care for Children
Publisher
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Palliative and Supportive 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; Terminal Care; terminal care; article; controlled study; human; Psychometrics; content validity; construct validity; reliability; nurse; wellbeing; intervention study; checklist; pediatric nurse; Turkey (republic); physiological stress; confirmatory factor analysis; Cronbach alpha coefficient; internal consistency
Creator
An entity primarily responsible for making the resource
Ayran G; Cevik Ozdemir HN
Description
An account of the resource
OBJECTIVES: This study was carried out to evaluate the validity and reliability of the Stress Scale for Pediatric Nurses Performing End-of-Life Care for Children in Turkey. METHOD(S): This was a methodological study conducted with 222 pediatric nurses. Data were collected using the information form for pediatric nurses and the "stress scale for nurses performing end-of-life care for children." Content and construct validity, item analysis, confirmatory factor analysis and internal consistency were used to evaluate the data. The Global Pharmaceutical Regulatory Affairs Summit checklist was followed in this study. RESULT(S): The content validity index of the scale was 0.93. Item-total score correlation values ranged from 0.594 to 0.885. The 5-factor structure of the scale was confirmed as a result of confirmatory factor analysis. Factor loads were greater than 0.30, and fit indices were greater than 0.80. The Cronbach's alpha coefficient of the Turkish version of the scale was 0.97. SIGNIFICANCE OF RESULTS: The stress scale for nurses performing end-of-life care for children is a valid and reliable measurement tool for the Turkish sample. This scale facilitates the assessment of the stress levels of pediatric nurses who provide end-of-life care to children. Also, this scale can be used in interventional studies to improve the well-being of pediatric nurses.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S147895152200181X" target="_blank" rel="noreferrer noopener">10.1017/S147895152200181X</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE5 - Low Resource Setting
Article
Ayran G
Cevik Ozdemir HN
Checklist
Child
confirmatory factor analysis
construct validity
content validity
Controlled Study
Cronbach alpha coefficient
Human
Internal Consistency
intervention study
Nurse
Palliative And Supportive Care
pediatric nurse
Physiological stress
Psychometrics
Reliability
Terminal Care
Turkey (republic)
Wellbeing
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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/10.1017/S1478951523000287" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951523000287</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Children's understanding of dying and death: A multinational grounded theory study
Publisher
An entity responsible for making the resource available
Palliative and Supportive 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; adult; article; controlled study; female; human; male; palliative therapy; sibling; clinical article; interview; Only Child; multicenter study; adolescent; thinking; qualitative research; religion; grounded theory; genetic transcription; Uganda; Haiti; altruism; vocabulary
Creator
An entity primarily responsible for making the resource
McPoland P; Grossoehme DH; Sheehan DC; Stephenson P; Downing J; Deshommes T; Gassant PYH; Friebert S
Description
An account of the resource
OBJECTIVES: The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which children directly involved with life-limiting conditions understand dying and death. <br/>METHOD(S): This qualitative study obtained interview data from N = 44 5-18-year-old children in the USA, Haiti, and Uganda who were pediatric palliative care patients or siblings of patients. Of these, 32 were children with a serious condition and 12 were siblings of a child with a serious condition. Interviews were recorded, transcribed, verified, and analyzed using grounded theory methodology. <br/>RESULT(S): Loss of normalcy and of relationships emerged as central themes described by both ill children and siblings. Resilience, altruism, and spirituality had a bidirectional relationship with loss, being strategies to manage both losses and anticipated death, but also being affected by losses. Resiliency and spirituality, but not altruism, had a bidirectional relationship with anticipating death. Themes were consistent across the 3 samples, although the beliefs and behaviors expressing them varied by country. SIGNIFICANCE OF RESULTS: This study partially fills an identified gap in research knowledge about ways in which children in 3 nations understand dying and death. While children often lack an adult vocabulary to express thoughts about dying and death, results show that they are thinking about these topics. A proactive approach to address issues is warranted, and the data identify themes of concern to children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S1478951523000287" target="_blank" rel="noreferrer noopener">10.1017/S1478951523000287</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE5 - Low Resource Setting
Adolescent
Adult
Altruism
Article
Child
Clinical Article
Controlled Study
Deshommes T
Downing J
Female
Friebert S
Gassant PYH
genetic transcription
Grossoehme DH
Grounded Theory
Haiti
Human
Interview
Male
McPoland P
Multicenter Study
Only Child
Palliative And Supportive Care
Palliative Therapy
Qualitative Research
Religion
Sheehan DC
Sibling
Stephenson P
thinking
uganda
vocabulary
-
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
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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
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<a href="http://doi.org/10.1007/s00467-022-05525-1" target="_blank" rel="noreferrer noopener">10.1007/s00467-022-05525-1</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
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
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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/10.1186/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
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; 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>
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
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
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2023 Special Edition 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/10.1177/10499091231180819" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10499091231180819</a>
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Title
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"It Seems Like a Bad Thing": US South Asian Youths' Perspectives About the Use of Hospice Care
Publisher
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American Journal of Hospice and 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
Adolescent; Hospice Care; article; controlled study; female; human; quality of life; palliative therapy; Hospices; education; clinical article; adolescent; thematic analysis; qualitative research; hospice care; consensus; place of death; juvenile; inheritance; Indian; South Asian; vulnerable population; university student
Creator
An entity primarily responsible for making the resource
Khosla N
Description
An account of the resource
BACKGROUND: South Asians are one of the fastest growing populations in the US. Family based decision making is common among this population. Little is known about their knowledge and attitudes towards hospice use. <br/>OBJECTIVE(S): This study explored US South Asian youths' knowledge of, and attitudes towards hospice care. DESIGN: Qualitative study, using focus group discussions. <br/>METHOD(S): Thirty-six university students of South Asian heritage participated in ten focus group discussions. Data were coded inductively and deductively. Thematic analysis was performed. Disagreements were resolved through discussion. <br/>RESULT(S): Participants were in consensus that if patients had an incurable, fatal condition, keeping them comfortable was important. Several participants were unaware of the terms 'hospice' and 'palliative care'. After these terms were explained, most opposed hospice care for reasons of 'desire for a normal life', 'cultural incompatibility', 'concerns about the hospice environment' and 'preference for home as the place of death'. Some were opposed to even home hospice fearing that it would continuously remind the family and patient about impending death. Concerns were also expressed about having a 'stranger' in the home to provide hospice care. One participant said she would support hospice use if it aligned with the patient's values. Others cited financial reasons and quality of life as considerations in choosing hospice care. <br/>CONCLUSION(S): Research is needed on culturally-appropriate modes of palliative care education and advocacy for South Asian populations in the US, especially youth, that are often the decision makers for the care of older family members.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/10499091231180819" target="_blank" rel="noreferrer noopener">10.1177/10499091231180819</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
Adolescent
American Journal Of Hospice And Palliative Care
Article
Clinical Article
Consensus
Controlled Study
Education
Female
Hospice Care
Hospices
Human
Indian
inheritance
juvenile
Khosla N
Palliative Therapy
Place Of Death
Qualitative Research
Quality Of Life
South Asian
Thematic Analysis
university student
vulnerable population
-
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/10.1136/archdischild-2023-rcpch.53" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.53</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
An innovative hybrid palliative care fellowship program: empowering pediatricians and enhancing care for children in resource-limited settings
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Canada; Palliative Care; pediatrics; Bangladesh; controlled study; female; human; major clinical study; male; child health; palliative therapy; total quality management; India; pediatrician; skill; clinical examination; conference abstract; Philippines; learning; rotation; leadership; teaching; rigor; career; mentor; running; resource limited setting; Southeast Asia
Creator
An entity primarily responsible for making the resource
Palat G; Doherty M; Brown S; Shah A
Description
An account of the resource
Objective To describe the development and implementation of a 1-year 'Hybrid' Pediatric Palliative Care (PPC) Fellowship, which includes both clinical and online learning to train paediatricians as specialists and leaders in paediatric palliative care in South and Southeast Asia. Methods Globally, 97% of children needing palliative care (PC) live in low- or middle-income countries, where access is often very limited. In India, less than 1% of the 1.6 million children needing PC can access these services. Building capacity and training opportunities for paediatricians are essential to improve access to PC in these settings. The Hybrid fellowship was developed through the existing partnership between Two Worlds Cancer Collaboration, Canada and the Hyderabad Centre for Palliative Care to train paediatricians as specialists and leaders in paediatric palliative care in South and Southeast Asia. A team of PPC experts developed the fellowship after a rigorous review of relevant literature and educational materials, incorporating their experiences running PPC traditional (in-person) fellowship programs in both high and lowerresourced settings. Results The fellowship includes formal teaching, clinical rotations, mentorship, regular assessments of trainees, and a scholarly project. Teaching includes 100 hours of weekly online classes, with a focus on case-based learning and leadership skills. Mandatory 4 months of clinical rotations in PC includes 2 months in the regional centre of PPC excellence in Hyderabad, India. Trainees' progression towards program competencies is assessed through written and observed standardised clinical examinations. A mentorship program provides additional support, which continues beyond the fellowship through an early career mentorship group. As a part of research and quality improvement (QI) training, fellows complete a scholarly project with support and supervision from experienced research mentors. More than 30 regional and international PPC experts contribute to the program as faculty. Since 2021, 6 paediatricians have completed the 'Hybrid' fellowship, from India (2), Bangladesh (1), and the Philippines (3), with 3 fellows currently in training. Graduated fellows have become regional and national leaders in PPC, developing new PPC programs, and implementing new PPC training in their home country. The program successfully sought endorsement from the Royal College of Paediatrics and Child Health (UK), which has strengthened the program's rigor and quality. Conclusion A 1-year Hybrid PPC Fellowship, which trains pediatricians to become specialists and champions of PPC, is an innovative model that can successfully build PPC capacity in resource-limited settings and increase access to PPC for children with life-limiting illnesses.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.53" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.53</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
Archives of Disease in Childhood
Bangladesh
Brown S
Canada
career
Child
Child Health
clinical examination
conference abstract
Controlled Study
Doherty M
Female
Human
India
Leadership
Learning
Major Clinical Study
Male
mentor
Palat G
Palliative Care
Palliative Therapy
Pediatrician
Pediatrics
Philippines
resource limited setting
rigor
Rotation
running
Shah A
Skill
Southeast Asia
Teaching
Total Quality Management
-
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/10.1080/15524256.2019.1703877" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/15524256.2019.1703877</a>
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Title
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Engaging Fathers in Pediatric Palliative Care Research
Publisher
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Journal Of Social Work In End-Of-Life and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Humans; Child; child; Male; pediatrics; Professional-Family Relations; controlled study; male; Adult; child health; perception; palliative therapy; Adaptation, Psychological; Caregiver; *Palliative Care/px [Psychology]; interview; health care personnel; wellbeing; qualitative research; father; *Fathers/px [Psychology]; *Father-Child Relations; Paternal caregivers; research engagement; sample recruitment challenges; *Paternal Behavior/px [Psychology]
Creator
An entity primarily responsible for making the resource
Nicholas, D.; Beaune, L.; Belletrutti, M.; Blumberg, J.; Ing, S.; Rapoport, A.; Barrera, M.
Description
An account of the resource
Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A secondary mixed-methods evaluation design guided examination of interview and focus group data as well as field notes from a qualitative study that examined the experiences and support needs of fathers of children with a life-limiting illness. Facilitators of paternal participation in the study consisted of: fathers' desire to gain from study participation either for themselves or others, perception of the study's importance, sense of appreciation for the study's focus on fathers and an established relationship with recruiting health care providers. Barriers to study participation included: recruiting health care providers' appraisal of fathers' lack of well-being, bereaved fathers' self-reported poor coping and the inability to locate and contact fathers, particularly after a child's death. Strategies for improving the engagement of fathers into research entailed: educating recruitment personnel, designing "father-focused" studies, communicating the value of the research to recruitment personnel and potential participants, and ensuring that child health records are accurate and include fathers' contact information.
Identifier
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<a href="http://doi.org/10.1080/15524256.2019.1703877" target="_blank" rel="noreferrer noopener">10.1080/15524256.2019.1703877</a>
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*Father-Child Relations
*Fathers/px [Psychology]
*Palliative Care/px [Psychology]
*Paternal Behavior/px [Psychology]
2020
2023 SE4 - Parent Perspectives
Adaptation, Psychological
Adult
Barrera, M.
Beaune, L.
Belletrutti, M.
Blumberg, J.
Caregiver
Child
Child Health
Controlled Study
Father
Health Care Personnel
Humans
Ing, S.
Interview
Journal of social work in end-of-life and palliative care
Male
Nicholas, D.
Palliative Therapy
Paternal caregivers
Pediatrics
Perception
Professional-family Relations
Qualitative Research
Rapoport, A.
research engagement
sample recruitment challenges
Wellbeing
-
Dublin Core
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Title
A name given to the resource
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/10.1017/S1478951522001018" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951522001018</a>
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Title
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Factors associated with mental health service use among families bereaved by pediatric cancer
Publisher
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Palliative and Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
child; Bereavement; article; controlled study; female; human; major clinical study; male; palliative therapy; education; sibling; Mental Health Services; bereavement; cooperation; distress syndrome; randomized controlled trial; health care personnel; self report; multicenter study; race; mother; home visit; malignant neoplasm; demography; father; support group; self help; educational status; mental health service; Child Behavior Checklist
Creator
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Hill KN; Olsavsky A; Barrera M; Gilmer MJ; Fairclough DL; Akard TF; Compas BE; Vannatta K; Gerhardt CA
Description
An account of the resource
OBJECTIVES: We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families. METHOD(S): Bereaved families (n = 85) were recruited from three children's hospitals 3-12 months after their child died of cancer. One eligible sibling (ages 8-17) per family was randomly selected for participation. During home visits 1-year post-death, parents reported on their own and the sibling's intervention use, helpfulness, and dose (self-help books, support groups, therapy, medication), and distress, defined as internalizing, externalizing, and total problems (Adult Self Report, Child Behavior Checklist). RESULT(S): Fifty percent of mothers used medications (n = 43); utilization was low among fathers (17%, n = 9) and siblings (5%, n = 4). Individuals with more total problems were more likely to use medications (mothers: rpb = 0.27; p = 0.02; fathers: rpb = 0.32; p = 0.02; siblings: rpb = 0.26; p = 0.02). Mothers and siblings with more total problems used more services (r = 0.24; p = 0.03 and r = 0.29; p = 0.01, respectively). Among mothers, the overall regression was significant, R2 = 0.11, F(2, 80) = 4.954, p = 0.01; the deceased child's age at death was significantly associated with total services used (b = 0.052, p = 0.022). Among fathers, the overall regression was significant, R2 = 0.216, F(3, 49) = 4.492, p = 0.007; race and years of education were significantly associated with total services used (b = 0.750, p = 0.030 and b = 0.154, p = 0.010). Among siblings, the overall regression was significant R2 = 0.088, F(2, 80) = 3.867, p = 0.025; greater total problems were significantly associated with total services used (b = 0.012, p = 0.007). SIGNIFICANCE OF RESULTS: Although few background factors were related to intervention use, bereaved mothers and siblings may seek services if they have more distress. Healthcare providers should be aware of the types of services that are most often utilized and helpful to bereaved families to connect them with appropriate resources. Future research should investigate other predictors of intervention use and outcomes after the death of a child.
Identifier
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<a href="http://doi.org/10.1017/S1478951522001018" target="_blank" rel="noreferrer noopener">10.1017/S1478951522001018</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
2023 SE3 - Oncology
Akard TF
Article
Barrera M
Bereavement
Child
Child Behavior Checklist
Compas BE
Controlled Study
Cooperation
Demography
Distress Syndrome
Education
Educational Status
Fairclough DL
Father
Female
Gerhardt CA
Gilmer MJ
Health Care Personnel
Hill KN
Home Visit
Human
Major Clinical Study
Male
Malignant Neoplasm
mental health service
Mental Health Services
Mother
Multicenter Study
Olsavsky A
Palliative And Supportive Care
Palliative Therapy
race
Randomized Controlled Trial
self help
Self Report
Sibling
support group
Vannatta K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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/10.1080/02739615.2023.2199161" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/02739615.2023.2199161</a>
Dublin Core
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Title
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Caregiver preferences for palliative care in pediatric oncology: an educational intervention
Publisher
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Children's 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; Palliative Care; childhood cancer; article; controlled study; human; Caregivers; palliative therapy; clinical article; caregiver
Creator
An entity primarily responsible for making the resource
Gallegos JV; Nelson CI; Conour CN; Ludrosky J; Tomboc P; Dower J; Duncan CL
Identifier
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<a href="http://doi.org/10.1080/02739615.2023.2199161" target="_blank" rel="noreferrer noopener">10.1080/02739615.2023.2199161</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
Article
Caregiver
Caregivers
Child
Childhood Cancer
Children's Health Care
Clinical Article
Conour CN
Controlled Study
Dower J
Duncan CL
Gallegos JV
Human
Ludrosky J
Nelson CI
Palliative Care
Palliative Therapy
Tomboc P
-
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 3 - Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1097/NCC.0000000000000783" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/NCC.0000000000000783</a>
Dublin Core
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Title
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Treatment Decision Making and Regret in Parents of Children With Incurable Cancer
Publisher
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Cancer Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Child; child; Decision Making; article; controlled study; female; human; male; palliative therapy; education; Only Child; risk factor; prospective study; multicenter study; decision making; propensity score; incurable cancer; risk perception
Creator
An entity primarily responsible for making the resource
Ye ZJ; Cheng MH; Zhang XY; Tang Y; Liang J; Sun Z; Liang MZ; Yu YL
Identifier
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<a href="http://doi.org/10.1097/NCC.0000000000000783" target="_blank" rel="noreferrer noopener">10.1097/NCC.0000000000000783</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2023 SE3 - Oncology
Article
Cancer Nursing
Cheng MH
Child
Controlled Study
Decision Making
Education
Female
Human
incurable cancer
Liang J
Liang MZ
Male
Multicenter Study
Only Child
Palliative Therapy
Propensity Score
Prospective Study
risk factor
risk perception
Sun Z
Tang Y
Ye ZJ
Yu YL
Zhang XY
-
Dublin Core
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Title
A name given to the resource
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/10.1089/jpm.2023.0091" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0091</a>
Dublin Core
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Title
A name given to the resource
Impact of Animal-Assisted Interaction on Anxiety in Children With Advanced Cancer and Their Caregivers
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; Animals; Anxiety; article; controlled study; female; human; male; Caregivers; patient care; palliative therapy; advanced cancer; caregiver; cancer patient; cancer recurrence; Only Child; nonhuman; dog; animal experiment; animal model; feasibility study; anxiety; pediatric patient; comparative effectiveness; Animal Shells; anticipation; refractory disease; State Trait Anxiety Inventory
Creator
An entity primarily responsible for making the resource
Mahoney AB; Akard TF; Cowfer BA; Dietrich MS; Newton JL; Gilmer MJ
Description
An account of the resource
Background: Pediatric patients with advanced cancer and their caregivers have unique psychosocial needs. Anxiety often worsens throughout treatment for both patients and parents, and, if undertreated, can cause suffering. Animal-assisted interaction (AAI) incorporates animals into patient care in a structured manner for the purpose of therapeutic benefit. Objective(s): To evaluate feasibility of incorporating AAI into patient care and to assess AAI effectiveness in decreasing patient and caregiver anxiety in pediatric patients with advanced cancer, defined by relapsed or refractory disease. Design(s): Randomized controlled study. Setting/Subjects: Participants were children (n=19) and parents (n=21) who were randomized to AAI group or usual care (UC) group. Measures: Participants completed weekly measures to assess anxiety, including the 20-question State-Trait Anxiety Inventory (STAI). Result(s): Our results demonstrated feasibility of the use of AAI in children with advanced cancer. While they did not reveal a significant difference in anxiety scores over the four sessions in either group, parents randomized to the AAI group had lower STAI State subscores at initial visit in comparison to the UC group. The difference in initial STAI State anxiety scores for caregivers may indicate a positive effect of AAI in reducing anxiety surrounding appointments through anticipation of seeing a therapy dog. Conclusion(s): Further research is needed to determine the effectiveness of AAI in pediatric patients with advanced cancer and their caregivers, but results are promising that participation in AAI may lessen caregiver anxiety. Clinical Trial Registration Number is: NCT03765099.
Identifier
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<a href="http://doi.org/10.1089/jpm.2023.0091" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0091</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
Advanced Cancer
Akard TF
Animal Experiment
Animal Model
Animal Shells
Animals
Anticipation
anxiety
Article
Cancer Patient
Cancer Recurrence
Caregiver
Caregivers
Child
Comparative Effectiveness
Controlled Study
Cowfer BA
Dietrich MS
Dog
Feasibility Study
Female
Gilmer MJ
Human
Journal of Palliative Medicine
Mahoney AB
Male
Newton JL
Nonhuman
Only Child
Palliative Therapy
Patient Care
pediatric patient
refractory disease
State Trait Anxiety Inventory
-
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 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.30663" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30663</a>
Dublin Core
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Title
A name given to the resource
Consultation patterns before and after embedding pediatric palliative care into a pediatric hematology/oncology clinic
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Palliative Care; article; controlled study; female; human; male; retrospective study; outpatient; palliative therapy; Referral and Consultation; Hematology; clinical article; consultation; medical record review; solid tumor; rank sum test; hematology; cancer model; health care delivery; embedding
Creator
An entity primarily responsible for making the resource
Greenmyer JR; Ngo T; Smith M; Collura C; Schiltz B; McCarthy SR
Description
An account of the resource
Introduction: Palliative care is a critical component of pediatric oncology care. Embedded pediatric palliative care (PPC) is relatively new in pediatric hematology/oncology (PHO) and may improve access, utilization, and quality of PPC. In June 2020, the Mayo Clinic PPC service transitioned from an afternoon, physically independent clinic to an all-day clinic embedded within PHO. Method(s): Retrospective chart review was used to quantify consultation rates from PHO to PPC in 12-month study periods before and after establishment of an embedded clinic. Changes in descriptive statistics and consult patterns were calculated. Study periods were compared using either chi-square or Fisher's exact tests for categorical variables and Wilcox rank sum tests for continuous variables. Result(s): There was an 89% increase in consultations from PHO to PPC after initiation of an embedded clinic (n = 20 vs. n = 38 per 12 months). The absolute number of completed outpatient consults increased from three (15% of visits) pre-embedment to fourteen (37%) post-embedment (p =.082). The median number of days from first oncology visit to PPC assessment was unchanged after embedment (36 vs. 47 days, p =.98). Consults for solid tumors increased from 22% (n = 4) pre-embedment to 60% (n = 18) post-embedment (p <.05). Consults for symptom management increased from 60% (n = 12) to 87% (n = 33) (p <.05). Conclusion(s): Embedment of PPC into a PHO workspace was associated with an increased number of total consults, outpatient consults, solid tumor consults, and consults for symptom management. Our "partial-PPO" model allowed for provision of PPC in the outpatient oncology setting in a clinic where there is not enough volume to support a full-time oncology-focused clinician team.Copyright © 2023 Wiley Periodicals LLC.
Identifier
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<a href="http://doi.org/10.1002/pbc.30663" target="_blank" rel="noreferrer noopener">10.1002/pbc.30663</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 SE3 - Oncology
Article
cancer model
Child
Clinical Article
Collura C
Consultation
Controlled Study
embedding
Female
Greenmyer JR
Health Care Delivery
Hematology
Human
Male
McCarthy SR
Medical Record Review
Ngo T
Outpatient
Palliative Care
Palliative Therapy
Pediatric Blood and Cancer
rank sum test
Referral And Consultation
Retrospective Study
Schiltz B
Smith M
solid tumor
-
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 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/10.1007/s12094-023-03301-7" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s12094-023-03301-7</a>
Dublin Core
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Title
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Palliative care for children with central nervous system tumors: results of a Spanish multicenter study
Publisher
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Clinical and Translational Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Central Nervous System; child; Palliative Care; childhood cancer; article; controlled study; female; human; major clinical study; male; retrospective study; preschool child; palliative therapy; medulloblastoma; cancer patient; school child; multicenter study; surgery; communication disorder; motor dysfunction; opiate; sedation; central nervous system tumor; place of death; hospital mortality; dexamethasone; antiemetic agent; pontine glioma; asthenia; Central Nervous System Neoplasms
Creator
An entity primarily responsible for making the resource
Perez-Torres LM; Navarro-Marchena L; de Noriega I; Morey OM; Solano-Paez P; Rubio PE; Garrido CC; Garcia AM; Tallon GM; Huidobro LB; Portugal RR; Lopez IB; Lassaletta A; Morgenstern IA; Cruz MO; Valero AL; Llort SA; Gros SL; Marquez VC; Moreno L; Quiroga-Cantero E
Description
An account of the resource
Background: Brain tumors represent the most common cause of cancer-related death in children. Few studies concerning the palliative phase in children with brain tumors are available. Objective(s): (i) To describe the palliative phase in children with brain tumors; (ii) to determine whether the use of palliative sedation (PS) depends on the place of death, the age of the patient, or if they received specific palliative care (PC). Method(s): Retrospective multicenter study between 2010 and 2021, including children from one month to 18 years, who had died of a brain tumor. Result(s): 228 patients (59.2% male) from 10 Spanish institutions were included. Median age at diagnosis was 5 years (IQR 2-9) and median age at death was 7 years (IQR 4-11). The most frequent tumors were medulloblastoma (25.4%) and diffuse intrinsic pontine glioma (DIPG) (24.1%). Median number of antineoplastic regimens were 2 (range 0-5 regimens). During palliative phase, 52.2% of the patients were attended by PC teams, while 47.8% were cared exclusively by pediatric oncology teams. Most common concerns included motor deficit (93.4%) and asthenia (87.5%) and communication disorders (89.8%). Most frequently prescribed supportive drugs were antiemetics (83.6%), opioids (81.6%), and dexamethasone (78.5%). PS was administered to 48.7% patients. Most of them died in the hospital (85.6%), while patients who died at home required PS less frequently (14.4%) (p =.01). Conclusion(s): Children dying from CNS tumors have specific needs during palliative phase. The optimal indication of PS depended on the center experience although, in our series, it was also influenced by the place of death.Copyright © 2023, The Author(s), under exclusive licence to Federacion de Sociedades Espanolas de Oncologia (FESEO).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s12094-023-03301-7" target="_blank" rel="noreferrer noopener">10.1007/s12094-023-03301-7</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE3 - Oncology
antiemetic agent
Article
asthenia
Cancer Patient
Central Nervous System
Central Nervous System Neoplasms
Central Nervous System Tumor
Child
Childhood Cancer
Clinical and Translational Oncology
communication disorder
Controlled Study
Cruz MO
de Noriega Í
dexamethasone
Female
Garcia AM
Garrido CC
Gros SL
Hospital Mortality
Huidobro LB
Human
Lassaletta A
Llort SA
Lopez IB
Major Clinical Study
Male
Marquez VC
Medulloblastoma
Moreno L
Morey OM
Morgenstern IA
motor dysfunction
Multicenter Study
Navarro-Marchena L
Opiate
Palliative Care
Palliative Therapy
Perez-Torres LM
Place Of Death
pontine glioma
Portugal RR
Preschool Child
Quiroga-Cantero E
Retrospective Study
Rubio PE
School Child
Sedation
Solano-Paez P
Surgery
Tallon GM
Valero AL
-
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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November 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
November List 2023
URL Address
<a href="http://doi.org/10.1097/PCC.0000000000003357" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/PCC.0000000000003357</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Dying and Death in a Pediatric Cardiac ICU: Mixed Methods Evaluation of Multidisciplinary Staff Responses
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; article; controlled study; human; major clinical study; terminal care; education; attention; content analysis; physician; multidisciplinary team; nurse; in-hospital mortality; coronary care unit
Creator
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Broden EG; Bailey VK; Beke DM; Snaman JM; Moynihan KM
Description
An account of the resource
OBJECTIVES: Understanding factors influencing quality of pediatric end-of-life (EOL) care is necessary to identify interventions to improve family and staff experiences. We characterized pediatric cardiac ICU (PCICU) staff free-text survey responses to contextualize patterns in quality of dying and death (QODD) scoring. DESIGN: This mixed methods study reports on a cross-sectional survey of PCICU staff involved in patient deaths. SETTING: Single, quaternary PCICU from 2019-2021. PARTICIPANTS: Multidisciplinary staff (bedside nurses, allied health professionals, and medical practitioners) rated QODD and voluntarily added free-text responses. We derived descriptive categories of free-text responses using content analysis. Response sentiment was classified as positive, negative or both positive and negative. We compared category and sentiment frequency by discipline, EOL medical intensity, years of experience and QODD score quartiles.None. MEASUREMENTS AND MAIN RESULTS: Of 60 deaths and 713 completed staff surveys, 269 (38%) contained free-text responses, including 103 of 269 (38%) from nurses. Of six qualitative categories (i.e., relational dynamics, clinical circumstances, family experiences, emotional expressions, temporal conditions, and structural/situational factors), relational dynamics was most frequent (173 responses). When compared by discipline, family experiences were more common in nursing responses than medical practitioners or allied health. High intensity was associated with infrequent discussion of family experience and greater focus on temporal conditions and clinical circumstances. Emotional expressions and temporal conditions were more common in lowest QODD quartile surveys. Although 45% staff responses contained both sentiments, relational dynamics and family experiences were more likely positive. Negative sentiments were more common in the lowest QODD quartile surveys and responses containing temporal conditions or structural/situational factors. CONCLUSION(S): Synergistic relationships between the multidisciplinary team and family shaped clinician's positive responses. Attention to team dynamics may be a crucial ingredient in interventions to improve EOL care. Our data support that team-based education initiatives should consider differential foci between disciplines and EOL characteristics.Copyright © 2023 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/PCC.0000000000003357" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000003357</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
Attention
Bailey VK
Beke DM
Broden EG
Child
Content Analysis
Controlled Study
coronary care unit
Education
Human
in-hospital mortality
Major Clinical Study
Moynihan KM
Multidisciplinary team
November List 2041
Nurse
Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies
Physician
Snaman JM
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
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/10.1055/a-2156-4833" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1055/a-2156-4833</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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Internet Health Resources on Nocturnal Enuresis - A Readability, Quality and Accuracy Analysis
Publisher
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European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie
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; male; practice guideline; clinical article; Internet; Internet; Enuresis; questionnaire; nocturnal enuresis; government; health care planning; nephrologist; urologist; reading; continence; pediatric surgeon; search engine
Creator
An entity primarily responsible for making the resource
Fung ACH; Lee MHL; Leung L; Chan IHY; Kenneth W
Description
An account of the resource
Introduction Nocturnal enuresis is a common yet quality-of-life-limiting paediatric condition. There is an increasing trend for parents to obtain information on the disease's nature and treatment options via the internet. However, the quality of health-related information on the internet varies greatly and is largely uncontrolled and unregulated. With this study, a readability, quality and accuracy evaluation of the health information regarding nocturnal enuresis is carried out. Materials and Methods A questionnaire was administered to parents and patients with nocturnal enuresis to determine their use of the internet to research their condition. The most common search terms were determined, and the first 30 websites returned by the most popular search engines were used to assess the quality of information about nocturnal enuresis. Each site was categorised by type and assessed for readability using the Gunning-Fog score, SMOG index and Dale-Chall score; for quality using the DISCERN score; and for accuracy by comparison to the International Children's Continence Society (ICCS) guidelines by three experienced paediatric urologists and nephrologists. Results A total of 30 websites were assessed and classified into five categories: professional (n = 13), non-profit (n = 8), commercial (n = 4), government (n= 3) and other (n= 2). The information was considered difficult for the public to comprehend, with mean Gunning-Fog, SMOG index and Dale-Chall scores of 12.1+/-4.3, 14.1+/-4.3 and 8.1+/-1.3, respectively. The mean summed DISCERN score was 41+/-11.6 out of 75. Only seven (23%) websites were considered of good quality (DISCERN score > 50). The mean accuracy score of the websites was 3.2+/- 0.6 out of 5. Commercial websites were of the poorest quality and accuracy. Websites generally scored well in providing their aims and identifying treatment benefits and options, while they lacked references and information regarding treatment risks and mechanisms. Conclusions Online information about nocturnal enuresis exists for parents; however, most websites are of suboptimal quality, readability and accuracy. Paediatric surgeons should be aware of parents' health-information-seeking behaviour and be proactive in guiding parents to identify high-quality resources.Copyright Thieme. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1055/a-2156-4833" target="_blank" rel="noreferrer noopener">10.1055/a-2156-4833</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
Chan IHY
Child
Clinical Article
continence
Controlled Study
enuresis
European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie
Female
Fung ACH
government
health care planning
Human
Internet
Kenneth W
Lee MHL
Leung L
Male
nephrologist
nocturnal enuresis
October List 2046
pediatric surgeon
Practice Guideline
Questionnaire
reading
search engine
urologist
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1136/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
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.50</a>
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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Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Palliative Care; child; controlled study; female; human; male; retrospective study; quality of life; palliative therapy; hospice; practice guideline; follow up; outcome assessment; artificial ventilation; clinical article; patient referral; education; consultation; pediatric intensive care unit; awareness; diagnosis; life sustaining treatment; hospital discharge; adolescent; surgery; infant; demographics; conference abstract; e-mail; decision making; trust; length of stay; nurse; writing; community care; heart graft; nursing staff; clinical nurse specialist; apparent life threatening event; organizational restructuring; oxygenation
Creator
An entity primarily responsible for making the resource
Subhash S; Freitas D; Aidoo E; Nkulu G; Chan-Dominy A
Description
An account of the resource
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus wishes of the child and family on preferred place of care.2 3 We evaluated the temporal effect on PC referrals at a quarternary cardiorespiratory paediatric intensive care unit (PICU) following organisational restructuring to integrate people-centred changes amidst complex diagnoses and advanced life-sustaining treatments. Methods Retrospective review of PC referral database between January and December 2022 was conducted, analysed on referral pathway, reviewed with decision-making process, patient demographics and outcome. Results The nurse-led service with ad hoc informal visits to offer PC support following requests from medical team was reorganised since service-level agreement for paediatric PC consultant attendance at our weekly complex care multidisciplinary meetings. Departmental education sessions and trust governance events were platforms to promote staff awareness on service and enhance referral pathway. PC referrals were made for 23 children(M:F 1.3:1), median age 13.8 months (range 10days -16.8years), under categories of life-limiting diagnoses (n=12, 52%) or acute life-threatening events (n=11, 48%), including resuscitative extracorporealmembrane-oxygenation.(Graph 1) Median time from admission to PC referral was 59 days (range 6-162) prior to standardised referral proforma in May2022, this reduced to 36 days (range -35 to 68) and 6 days (range 3-30) per 4-month period. One referral was made 5 weeks prior to an international repatriation for child with life-limiting diagnosis on long-term ventilation. Completed referral forms sent to a designated email address were passed onto PC consultants and clinical nurse specialist. Dedicated weekly PC days provided introductory 'meet-andgreet', follow-up 'check-in' or semi-structured meeting with PC team members for patients, families and staff. PC-led multidisciplinary meetings (including 2 online) were followed by real-time correspondence to medical and nursing staff with feedback, recommendations and action plan. 4 advanced care plans and 3 symptom management plans were completed; 9 hospice and 5 community care nursing team referrals were made whilst 2 families declined hospice. Median hospital length of stay was 69 days (range 6-390). 5 children survived to hospital discharge (3 died at home), and 8 are still in hospital (1 as heart transplant recipient). Conclusion Integrative culture during reorganisation can positively influence paediatric PC referrals. Event-triggered and diagnosis-based cues may help foster PC participation as continuing strategy to respond with support during disease, treatment and psychosocial burden for children and families.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.50</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adolescent
Aidoo E
apparent life threatening event
Archives of Disease in Childhood
Artificial Ventilation
Awareness
Chan-Dominy A
Child
Clinical Article
Clinical Nurse Specialist
community care
conference abstract
Consultation
Controlled Study
Decision Making
Demographics
Diagnosis
E-mail
Education
Female
Follow Up
Freitas D
heart graft
Hospice
hospital discharge
Human
Infant
Length Of Stay
Life Sustaining Treatment
Male
Nkulu G
Nurse
Nursing Staff
October List 2031
organizational restructuring
outcome assessment
Oxygenation
Palliative Care
Palliative Therapy
Patient Referral
Pediatric Intensive Care Unit
Practice Guideline
Quality Of Life
Retrospective Study
Subhash S
Surgery
Trust
writing
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.55" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.55</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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A One Day Paediatric Palliative Care Study Day Improves Skills
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Palliative Care; child; controlled study; female; human; male; advance care planning; ethics; palliative therapy; clinical article; consultation; human experiment; questionnaire; conference abstract; skill; learning; appetite
Creator
An entity primarily responsible for making the resource
Aidoo E
Description
An account of the resource
Objectives To see if a network Palliative Care Study day increases knowledge of participants. Method This was the first paediatric palliative care network study day run in the region. 20 doctors (both consultants and those in training) participated. The day was a mixture of presentations and in depth work shops covering advance care planning discussions (with actors); symptom management and discussion of ethical and legal principles underpinning palliative care. The course was run face to face. A pre-course questionnaire was sent out online to applicants to gain an understanding of their prior knowledge and their learning objectives. Post course feedback was obtained via paper questionnaire at the end of the study day. Results Participants ranked their pre-course knowledge of Advance Care Planning; End of life processes; Symptom Management; Ethics in palliative care as 3/5 (mode and median, n=19) and post course as 4 (mode and median, n=16). 100% of respondents would recommend this course to a colleague and 100% felt the course met the objectives. Feedback on how to improve identified an appetite for clinicians to have more practice in discussing advance care planning with families. Conclusion Feedback identified clinicians (both those in training and consultants) do not feel equipped to start advance care planning discussions, manage symptoms or know what to do when a child dies. Our study day demonstrated a gain in these skills.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.55" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.55</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Advance Care Planning
Aidoo E
Appetite
Archives of Disease in Childhood
Child
Clinical Article
conference abstract
Consultation
Controlled Study
Ethics
Female
Human
Human Experiment
Learning
Male
October List 2028
Palliative Care
Palliative Therapy
Questionnaire
Skill