1
40
27
-
Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1017/S1478951522001018" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951522001018</a>
Dublin Core
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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
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2023 Special Edition 3 - Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.30484" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30484</a>
Dublin Core
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Title
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Unfolding parental knowledge, attitudes, and beliefs toward palliative care for children with cancer
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Palliative Care; childhood cancer; article; female; human; major clinical study; male; palliative therapy; pain; education; pediatrics; emotion; multicenter study; quantitative analysis; caregiver; questionnaire; structured interview; demography; Lebanon; educational status
Creator
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Rassam RS; Huijer HAS; Noureddine S; Smith EML; Wolfe J; Fares S; Abboud MR
Identifier
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<a href="http://doi.org/10.1002/pbc.30484" target="_blank" rel="noreferrer noopener">10.1002/pbc.30484</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
Abboud MR
Article
Caregiver
Child
Childhood Cancer
Demography
Education
Educational Status
Emotion
Fares S
Female
Huijer HAS
Human
Lebanon
Major Clinical Study
Male
Multicenter Study
Noureddine S
Pain
Palliative Care
Palliative Therapy
Pediatric Blood and Cancer
Pediatrics
quantitative analysis
Questionnaire
Rassam RS
Smith EML
Structured Interview
Wolfe J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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/10.2174/1871530323666230914114425" target="_blank" rel="noreferrer noopener"> http://doi.org/10.2174/1871530323666230914114425</a>
Dublin Core
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Title
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Paediatric Palliative Care in a Reference Centre of Inherited Metabolic Diseases
Publisher
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Endocrine, Metabolic and Immune Disorders - Drug Targets
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Palliative Care; article; cohort analysis; female; hospital admission; human; major clinical study; male; quality of life; outpatient; palliative therapy; Metabolic Diseases; school child; patient referral; noninvasive ventilation; surgery; daily life activity; gastrostomy; metabolic disorder; pediatric patient; home visit; neurologic disease; demography; disorders of mitochondrial functions; disorders of peroxisomal functions; lysosome; peroxisome; systemic disease
Creator
An entity primarily responsible for making the resource
Saraiva BM; Santos S; Ferreira AC; Paiva M
Description
An account of the resource
INTRODUCTION: Paediatric palliative care (PPC) has a significant role in improving the quality of life of children with life-limiting or life-threatening illnesses, diminishing symptom burden, and providing holistic support to patients and families. Inherited metabolic diseases (IMD) are a group of heterogeneous diseases that often present with severe neurologic impairment, needing lifelong care and challenging symptom management. OBJECTIVE(S): Our aim was to characterize the cohort of patients with IMD followed by the paediatric palliative care team (PPCT) and to describe the provision of care provided. METHOD(S): The descriptive analysis of demographic, clinical, and care delivery data of a cohort of paediatric patients was carried out with a confirmed diagnosis of IMD, followed in a Reference Centre, in the care of PPCT between 2018 and 2023. RESULT(S): Thirteen (10%) of a total of 134 patients in the care of PPCT had a confirmed diagnosis of an IMD: 6 mitochondrial, 3 peroxisomal, 3 lysosomal, and 1 pterin metabolism disorder. The median age at referral was 9 years (0-18), the median duration of care was 2 years [2-4], median number of home visits in the last year was 2 [1-4], and median number of outpatient consults was 4 [2 -8]. Twelve patients (92%) had no autonomy in their activities of daily living. Neurologic (100%), gastrointestinal (92%), and respiratory (69%) symptoms were the main focus of care. All patients were polymedicated (5 or more different drugs). Nine (69%) had percutaneous gastrostomy and 2 (15%) had noninvasive ventilation. Median hospital admissions before and after starting care by PPCT were 4 and 1. Moreover, three patients died and one was at home. CONCLUSION(S): Mitochondrial, lysosomal, and peroxisomal disorders are complex multisystemic diseases that very often have no treatment intended to cure. These patients have a heavy symptom burden and frequent intercurrences. Addressing these symptoms is challenging, but PPC has proven to reduce hospital admissions with consequent improvement in quality of life. In the future, PPC should be available for all children and families with life-threatening conditions.Copyright© Bentham Science Publishers; For any queries, please email at epub@benthamscience.net.
Identifier
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<a href="http://doi.org/10.2174/1871530323666230914114425" target="_blank" rel="noreferrer noopener">10.2174/1871530323666230914114425</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
Child
Cohort Analysis
daily life activity
Demography
disorders of mitochondrial functions
disorders of peroxisomal functions
Endocrine, metabolic & immune disorders drug targets
Female
Ferreira AC
Gastrostomy
Home Visit
Hospital Admission
Human
lysosome
Major Clinical Study
Male
Metabolic Diseases
Metabolic Disorder
Neurologic Disease
Noninvasive Ventilation
November List 2028
Outpatient
Paiva M
Palliative Care
Palliative Therapy
Patient Referral
pediatric patient
peroxisome
Quality Of Life
Santos S
Saraiva BM
School Child
Surgery
systemic disease
-
Dublin Core
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Title
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September 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September List 2023
URL Address
<a href="http://doi.org/10.32641/andespediatr.v94i3.4382" target="_blank" rel="noreferrer noopener"> http://doi.org/10.32641/andespediatr.v94i3.4382</a>
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Title
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Facilitators and barriers perceptions to early referral to pediatric palliative care perceived
Publisher
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Andes Pediatrica
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; adult; article; controlled study; female; human; major clinical study; male; palliative therapy; Referral and Consultation; patient referral; pediatrician; clinical practice; multicenter study; religion; perception; demography; professional practice
Creator
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Ceballos-Yanez D; Patricio AP; Eugenin-Soto MI
Description
An account of the resource
Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the care of children with cancer. Methods: A 36-question survey based on preliminary, single-institution data was electronically distributed to pediatric oncology physicians, nurse practitioners, nurses, and social workers nationally. The principal outcomes measured included perceived barriers and facilitators to early integration of pediatric palliative care. Data were analyzed using Rv3.1.2 statistical software. Results: Most respondents agreed that the PCT does not negatively impact the role of the oncologist; however, there were concerns that optimal patient care may be limited by pediatric oncologists' need to control all aspects of patient care (P < 0.001). Furthermore, oncologists, more than any provider group, identified that the emotional relationship they form with the patients and families they care for, influences what treatment options are offered and how these options are conveyed (P < 0.01). Education and evidence-based research remain important to all providers. Respondents reached consensus that early integration of a PCT would provide more potential benefits than risks and most would not limit access to palliative care based on prognosis. Conclusions: Overall, providers endorse early integration of the PCT for children with cancer. There remains a continued emphasis on provider and patient education. Palliative care is generally accepted as providing a benefit to children with cancer, though barriers persist and vary among provider groups.
Identifier
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<a href="http://doi.org/10.32641/andespediatr.v94i3.4382" target="_blank" rel="noreferrer noopener">10.32641/andespediatr.v94i3.4382</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
Andes Pediatrica
Article
Ceballos-Yanez D
Child
Clinical Practice
Controlled Study
Demography
Eugenin-Soto MI
Female
Human
Major Clinical Study
Male
Multicenter Study
Palliative Care
Palliative Therapy
Patient Referral
Patricio AP
Pediatrician
Perception
Professional Practice
Referral And Consultation
Religion
September List 2030
-
Dublin Core
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Title
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May 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
May List 2023
URL Address
<a href="http://doi.org/10.1017/S1478951523000251" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951523000251</a>
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Title
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Assessing well-being in pediatric palliative care: A pilot study about views of children, parents and health professionals
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
emotional well-being; palliative therapy; pilot study; psychologic assessment; wellbeing; article; child; clinical article; controlled study; cross-sectional study; demography; emotion; female; health practitioner; human; male; Palliative Care; perception; Pilot Projects; school child; vision; visual analog scale
Creator
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Toro-Perez D; Camprodon-Rosanas E; Navarro Vilarrubi S; Bolance C; Guillen M; Limonero JT
Description
An account of the resource
OBJECTIVES: Our research aims to compare the perception that children in the pediatric palliative care setting have of their emotional well-being, or that expressed by the parents, with the perception held by the professionals involved in their care. <br/>METHOD(S): In this cross-sectional study, the emotional well-being of 30 children with a mean age of 10.8 years (standard deviation [SD] = 6.1) is evaluated. Children, or parents where necessary, evaluate their situation with a question about emotional well-being on a 0-10 visual analog scale. For each child, a health professional also rates the child's emotional status using the same scale. <br/>RESULT(S): The average child's emotional well-being score provided by children or parents was 7.1 (SD = 1.6), while the average score given by health professionals was 5.6 (SD = 1.2). Children or parents graded the children's emotional well-being significantly higher than professionals (t-test = 4.6, p-value < .001). Health professionals rated the children's emotional well-being significantly lower when the disease status was progressive than when the disease was not (t-test = 2.2, p-value = .037). SIGNIFICANCE OF RESULTS: Children themselves, or their parents, report more positive evaluations of emotional well-being than health professionals. Sociodemographic and disease variables do not seem to have a direct influence on this perception, rather it is more likely that children, parents, and professionals focus on different aspects and that children or parents need to hold on to a more optimistic vision. We must emphasize that when this difference is more pronounced, it can be a warning sign that further analysis is required of the situation.
Identifier
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<a href="http://doi.org/10.1017/S1478951523000251" target="_blank" rel="noreferrer noopener">10.1017/S1478951523000251</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
Bolance C
Camprodon-Rosanas E
Child
Clinical Article
Controlled Study
Cross-sectional Study
Demography
Emotion
emotional well-being
Female
Guillen M
health practitioner
Human
Limonero JT
Male
May List 2023
Navarro Vilarrubi S
Palliative And Supportive Care
Palliative Care
Palliative Therapy
Perception
Pilot Projects
Pilot Study
psychologic assessment
School Child
Toro-Perez D
vision
Visual Analog Scale
Wellbeing
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2021 Special Edition 2 - Oncology
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"> http://doi.org/</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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Polypharmacy among Pediatric Cancer Patients Dying In the Hospital
Publisher
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The Israel Medical Association Journal
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; Female; Humans; Male; Resuscitation Orders; Demography; Health Services Research; Hospitalization/statistics & numerical data; Neoplasm Staging; Antineoplastic Agents/therapeutic use; Neoplasms/drug therapy/mortality/pathology; Palliative Care/methods/statistics & numerical data; Polypharmacy; Terminal Care/methods/statistics & numerical data; Critical Pathways/statistics & numerical data; Israel/epidemiology; Steroids/therapeutic use
Creator
An entity primarily responsible for making the resource
Tamir S; Kurnik D; Weyl BAM; Postovsky S
Description
An account of the resource
BACKGROUND: Decisions on medication treatment in children dying from cancer are often complex and may result in polypharmacy and increased medication burden. There is no information on medication burden in pediatric cancer patients at the end of life (EOL). OBJECTIVES: To characterize medication burden during the last hospitalization in children dying from cancer. METHODS: We performed a retrospective cohort study based on medical records of 90 children who died from cancer in hospital between 01 January 2010 and 30 December 2018. Demographic and clinical information were collected for the last hospitalization. We compared medication burden (number of medication orders) at hospitalization and at time of death and examined whether changes in medication burden were associated with clinical and demographic parameters. RESULTS: Median medication burden was higher in leukemia/lymphoma patients (6 orders) compared to solid (4 orders) or CNS tumor patients (4 orders, P = 0.006). Overall, the median number of prescriptions per patient did not change until death (P = 0.42), while there was a significant reduction for some medication subgroups (chemotherapy [P = 0.035], steroids [P = 0.010]).Patients dying in the ICU (n=15) had a higher medication burden at death (6 orders) than patients dying on wards (3 orders, P = 0.001). There was a trend for a reduction in medication burden in patients with "Do not resuscitate" (DNR) orders (P = 0.055). CONCLUSIONS: Polypharmacy is ubiquitous among pediatric oncology patients at EOL. Disease type and DNR status may affect medication burden and deprescribing during the last hospitalization.
Identifier
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2021 Special Edition - Oncology
Antineoplastic Agents/therapeutic use
Child
Critical Pathways/statistics & numerical data
Demography
Female
Health Services Research
Hospitalization/statistics & numerical data
Humans
Israel/epidemiology
Kurnik D
Male
Neoplasm Staging
Neoplasms/drug therapy/mortality/pathology
Palliative Care/methods/statistics & numerical data
Polypharmacy
Postovsky S
Resuscitation Orders
Steroids/therapeutic use
Tamir S
Terminal Care/methods/statistics & numerical data
The Israel Medical Association Journal
Weyl BAM
-
Dublin Core
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Title
A name given to the resource
2021 Special Edition 1 - Low Resource Settings
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1007/s13524-019-00846-7" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s13524-019-00846-7</a>
Dublin Core
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Title
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The Marital Implications of Bereavement: Child Death and Intimate Partner Violence in West and Central Africa
Publisher
An entity responsible for making the resource available
Demography
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Child; Adolescent; Adult; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Parents/psychology; Middle Aged; Young Adult; Risk Factors; Child Mortality; Bereavement; Child mortality; Intimate partner violence; West and Central Africa; Africa Central; Africa Western; Intimate Partner Violence/statistics & numerical data; Marriage/statistics & numerical data
Creator
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Weitzman A; Smith-Greenaway E
Description
An account of the resource
In high-mortality contexts, research examining the effects of child mortality has focused almost exclusively on couples' fertility responses while overlooking other potential family consequences. Using nationally representative survey data from 13 West and Central African countries, we estimate multilevel discrete-time hazard models to determine how women's risk of intimate partner violence (IPV) varies with the death of children. We assess heterogeneity in this association across two surrounding circumstances: children's age at death and regional prevalence of child bereavement. Findings indicate that the risk of IPV initiation rises with the death of children under age 5-for whom women are most intensely responsible-but not with the death of older children. The effect of young child bereavement is most pronounced in regions where it is least prevalent among mothers-a finding not explained by concomitant regional variation in gender inequality, family norms, and infrastructural development. These findings highlight the importance of child mortality for family outcomes beyond fertility in the African context and demonstrate the prominent role of the broader mortality context in shaping these implications.
Identifier
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<a href="http://doi.org/10.1007/s13524-019-00846-7" target="_blank" rel="noreferrer noopener">10.1007/s13524-019-00846-7</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
2021 Special Edition 1 - Low Resource Settings
Adolescent
Adult
Africa Central
Africa Western
Bereavement
Child
Child Mortality
Child Preschool
Demography
Female
Humans
Infant
Infant Newborn
Intimate partner violence
Intimate Partner Violence/statistics & numerical data
Male
Marriage/statistics & numerical data
Middle Aged
Parents/psychology
Risk Factors
Smith-Greenaway E
Weitzman A
West and Central Africa
Young Adult
-
Dublin Core
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Title
A name given to the resource
January 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
January List 2023
URL Address
<a href="http://doi.org/10.1192/j.eurpsy.2021.1075" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1192/j.eurpsy.2021.1075</a>
Dublin Core
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Title
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Dying child and nurses' mourning
Publisher
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European Psychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Mourning; Nurse; Child; Death; Nurse; Nurse Care; Death; Child; Anger; Care; Child; Conference Abstract; Curriculum; Demography; Dying; Education; Guilt; Hospitalized Child; Human; Pediatric Hospital; Pediatric Nurse; Questionnaire; Sadness; Theoretical Study
Creator
An entity primarily responsible for making the resource
Zartaloudi A; Lekas C; Koutelekos I; Evangelou E; Kyritsi E
Description
An account of the resource
Introduction: One of the most complex and emotional aspects of nursing is the interaction between the nurse and the dying child. The attitudes of nurses towards death, affect the quality of care. Objective(s): To investigate pediatric nurses' attitudes towards death. Method(s): Methodology: 170 nurses, working in pediatric hospital departments completed a questionnaire which included sociodemographic characteristics and information related to their previous training and clinical experience regarding death issues in general and dying children's care in particular. Result(s): 68.6% reported that the death of a child affects them very much, while 44.7% of the participants didn't feel well prepared to manage death issues. Pediatric nurses were greatly affected by children's death, expressing mainly feelings of sadness (44%), compassion (22%), guilt (22%) and anger (22%). 73% of the sample wished the hospitalized child, died when they were not present. 53.5% had been trained regarding the care of dying patients and the management of death and mourning as part of their curriculum and 21.2% had attended a relative seminar / lecture. The importance of proper and adequate education becomes particularly apparent considering that the majority of our sample either did not feel sufficiently prepared in order to deal with death and mourning, even though more than 70% of our participants had been relatively educated. Conclusion(s): The incorporation of the notions of death and care at end of life in the theoretical and practical fields of nursing will improve the quality of services offered at the end of life for patients and their families.
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<a href="http://doi.org/10.1192/j.eurpsy.2021.1075" target="_blank" rel="noreferrer noopener">10.1192/j.eurpsy.2021.1075</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).
Child
Death
Human
Nurse
2021
Anger
CARE
Child
conference abstract
Curriculum
Death
Demography
Dying
Education
European Psychiatry
Evangelou E
Guilt
Hospitalized Child
January List 2023
Koutelekos I
Kyritsi E
Lekas C
mourning
Nurse Care
Pediatric Hospital
pediatric nurse
Questionnaire
Sadness
theoretical study
Zartaloudi A
-
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December 2022 List
Text
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December List 2022
URL Address
<a href="http://doi.org/10.1002/pbc.29952" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.29952</a>
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At the End of Life: Pediatric Palliative Care Can Make a Difference in Caring for the Child and Family
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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agitation; anxiety; cancer patient; care behavior; child; conference abstract; controlled study; demography; dyspnea; fear; female; hospital mortality; human; intensive care unit; irritability; leukemia; major clinical study; male; middle income country; pain; palliative therapy; pediatric patient; quasi experimental study; retrospective study; school child; seizure; skill; social needs; terminal care; ward
Creator
An entity primarily responsible for making the resource
Cuervo M; Garcia X; Molina K; Claros A; Bolanos J; Alvarez T; Cleves D
Description
An account of the resource
Background and Aims: WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family, the aim of this study is to describe the endof-life care of children with cancer during the end-of-life period who receive general palliative care or pediatric palliative care in low- and middle-income countries. Method(s): We conducted a retrospective quasi-experimental study between January 2013 and December 2020 with deceased pediatric cancer patients. Demographic and clinical variables were collected to describe end-of-life care received before (2013-2017) by general palliative care team and after (2018-2020) the creation of a pediatric palliative care team Results: A total of 180 pediatric patients were evaluated at the end of life (100 between 2013-2017 and 80 between 2018-2020). The median age was 11 years, regardless of sex. Half of the patients had a diagnosis of leukemia (49.8%), 52.7% receive palliative treatment for their oncological condition. Regarding symptoms, 72 hours before death, pain treatment was documented for 52.2% of the patients. Other signs and symptoms, such as dyspnea, seizures, agitation, and irritability, were present, with no differences between groups; however, it was noted that during PPC interventions, there was a significant reduction in anxiety or fear of end of life, we observed a greater number of interventions by the psychosocial professionals and also there was an increase in the number of patients who died in the hospital ward and a decrease in the number of patients who died in the intensive care unit. Conclusion(s): Pediatric palliative care requires special knowledge and skills, the provision of PPC for children with cancer allows patients and their families to receive support that alleviates the physical, emotional and social needs that arise from a life-limiting illness and finally receive high-quality end-of-life care.
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<a href="http://doi.org/10.1002/pbc.29952" target="_blank" rel="noreferrer noopener">10.1002/pbc.29952</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
Agitation
Alvarez T
anxiety
Bolanos J
Cancer Patient
care behavior
Child
Claros A
Cleves D
conference abstract
Controlled Study
Cuervo M
December List 2022
Demography
Dyspnea
Fear
Female
Garcia X
Hospital Mortality
Human
Intensive Care Unit
Irritability
Leukemia
Major Clinical Study
Male
middle income country
Molina K
Pain
Palliative Therapy
Pediatric Blood and Cancer
pediatric patient
quasi experimental study
Retrospective Study
School Child
Seizure
Skill
social needs
Terminal Care
ward
-
Dublin Core
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Title
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October 2022 List
Text
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Citation List Month
October 2022 List
URL Address
<a href="http://doi.org/10.1542/hpeds.2021-006432">http://doi.org/10.1542/hpeds.2021-006432</a>
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Title
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Demographic and Clinical Differences Between Applied Definitions of Medical Complexity
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Hospital Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Child; Chronic Disease; Cross-Sectional Studies; Demography; Hospitalization; Hospitals; Pediatric; Humans; Infant; Retrospective; Studies
Creator
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Heneghan JA; Goodman DM; Ramgopal S
Description
An account of the resource
OBJECTIVES: To identify the degree of concordance and characterize demographic and clinical differences between commonly used definitions of multisystem medical complexity in children hospitalized in children's hospitals. METHODS: We conducted a retrospective, cross-sectional cohort study of children <21 years of age hospitalized at 47 US Pediatric Health Information System-participating children's hospitals between January 2017 to December 2019. We classified patients as having multisystem complexity when using 3 definitions of medical complexity (pediatric complex chronic conditions, pediatric medical complexity algorithm, and pediatric chronic critical illness) and assessed their overlap. We compared demographic, clinical, outcome, cost characteristics, and longitudinal healthcare utilization for each grouping. RESULTS: Nearly one-fourth (23.5%) of children hospitalized at Pediatric Health Information System-participating institutions were identified as meeting at least 1 definition of multisystem complexity. Children with multisystem complexity ranged from 1.0% to 22.1% of hospitalized children, depending on the definition, with 31.2% to 95.9% requiring an ICU stay during their index admission. Differences were seen in demographic, clinical, and resource utilization patterns across the definitions. Definitions of multisystem complexity demonstrated poor agreement (Fleiss' κ 0.21), with 3.5% of identified children meeting all 3. CONCLUSIONS: Three definitions of multisystem complexity identified varied populations of children with complex medical needs, with poor overall agreement. Careful consideration is required when applying definitions of medical complexity in health services research, and their lack of concordance should result in caution in the interpretation of research using differing definitions of medical complexity.
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<a href="http://doi.org/10.1542/hpeds.2021-006432">10.1542/hpeds.2021-006432</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
Child
Chronic Disease
Cross-sectional Studies
Demography
Goodman DM
Heneghan JA
Hospital Pediatrics
Hospitalization
Hospitals
Humans
Infant
October 2022 List
Pediatric
Ramgopal S
Retrospective
Studies
-
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Title
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March 2020 List
Text
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March 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.134" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.134</a>
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Title
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Sign Me Up! Understanding Referral and Enrollment to Community-Based Pediatric Hospice and Palliative Care (FR420D)
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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
2020
Subject
The topic of the resource
child; cohort analysis; conference abstract; controlled study; demography; female; hospice; human; insurance; major clinical study; male; neonatal intensive care unit; nervous system; palliative therapy; patient referral; pediatric hospital; preschool child; retrospective study; speech; total quality management
Creator
An entity primarily responsible for making the resource
Lotstein D; Caliboso M; Lindley L; Wolfe J
Description
An account of the resource
Objectives: * List the types of community-based hospice and palliative care programs for children and describe barriers and facilitators to the use of these programs. * Describe the rates of referral and enrollment to community-based programs, factors associated with referral, and describe how these findings can be used to improve access to appropriate use of community-based care. Original Research Background: While access to community-based hospice and palliative care programs has increased for seriously ill children, we know little on a population level about which children are referred and enrolled into these programs. Research Objectives: To describe referrals and enrollment for community-based care from a hospital-based pediatric palliative care (PPC) service, and to identify factors associated with referral.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.134" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.134</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Caliboso M
Child
Cohort Analysis
conference abstract
Controlled Study
Demography
Female
Hospice
Human
Insurance
Journal of Pain and Symptom Management
Lindley L
Lotstein D
Major Clinical Study
Male
March 2020 List
Neonatal Intensive Care Unit
Nervous System
Palliative Therapy
Patient Referral
Pediatric Hospital
Preschool Child
Retrospective Study
Speech
Total Quality Management
Wolfe J
-
Dublin Core
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Title
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March 2020 List
Text
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March 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.077" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.077</a>
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Title
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Grief and Bereavement Support for Families and Healthcare Professionals as Part of Integrated Care in Pediatric/Neonatal Intensive Care Units around the World (TH340A)
Publisher
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Journal of Pain and Symptom Management
Date
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2020
Subject
The topic of the resource
bereavement support; child; conference abstract; controlled study; convenience sample; demography; female; financial management; gender; health care personnel; high income country; human; male; neonatal intensive care unit; newborn; newborn death; palliative therapy; patient coding; pediatric intensive care unit; perception; prospective study; questionnaire; statistical significance; World Bank
Creator
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Grunauer M; Bustamante G; Zambrano K
Description
An account of the resource
Objectives: * Recognize how PICUs/NICUs implement GBS IPPC recommendations. * Describe how PICUs/NICUs' resource influence their GBS care provision as related to IPPC recommendations. Original Research Background: Grief and bereavement support (GBS) is important for the wellbeing and functioning of patients, families, and healthcare professionals (HCPs) and is part of the Integrated Model of Care (IMOC) in which ICU personnel address critical and palliative care (PC) needs concurrently. The Initiative for Pediatric Palliative Care (IPPC) guidelines can build PC capacity. Identifying existing PC resources/competencies amongst potential IPPC adopters maximizes implementation effectiveness. Research Objectives: We assessed if PICUs/NICUs implement GBS IPPC recommendations and if units' resources shape care provision.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.077" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.077</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Bereavement Support
Bustamante G
Child
conference abstract
Controlled Study
Convenience Sample
Demography
Female
financial management
Gender
Grunauer M
Health Care Personnel
high income country
Human
Journal of Pain and Symptom Management
Male
March 2020 List
Neonatal Intensive Care Unit
Newborn
Newborn Death
Palliative Therapy
patient coding
Pediatric Intensive Care Unit
Perception
Prospective Study
Questionnaire
Statistical Significance
World Bank
Zambrano K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2019 Developing World List
Text
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Citation List Month
Developing World 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.414" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2018.10.414</a>
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Title
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Frequency and Clinical Characteristics Associated With Pediatric Deaths In a Tertiary Hospital in a Developing Country - Opportunities for Pediatric Palliative Care
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
2018
Subject
The topic of the resource
antibiotic therapy; artificial ventilation; brain death; cause of death; child; clinical feature; comfort; conference abstract; controlled study; demography; developing country; diagnosis; drug withdrawal; female; health care quality; hospital patient; human; human tissue; inotropism; life sustaining treatment; major clinical study; male; medical record; neonatal intensive care unit; newborn; palliative therapy; pediatric patient; resuscitation; retrospective study; sedation; statistical analysis; terminal care; tertiary care center
Creator
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Cuervo Suarez M I; Munoz M; Garcia X
Description
An account of the resource
Background: Colombia does not have knowledge about the clinical characteristics of pediatric deaths caused by life-threatening conditions and/or serious illness within the hospital setting.
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.414" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.414</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
antibiotic therapy
Artificial Ventilation
Brain Death
Cause Of Death
Child
Clinical Feature
Comfort
conference abstract
Controlled Study
Cuervo Suarez M I
Demography
developing country
Developing World 2019 List
Diagnosis
Drug Withdrawal
Female
Garcia X
Health Care Quality
Hospital Patient
Human
Human Tissue
inotropism
Journal of Pain and Symptom Management
Life Sustaining Treatment
Major Clinical Study
Male
Medical Record
Munoz M
Neonatal Intensive Care Unit
Newborn
Palliative Therapy
pediatric patient
Resuscitation
Retrospective Study
Sedation
statistical analysis
Terminal Care
tertiary care center
-
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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January 2020 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
January 2020 List
URL Address
<a href="http://doi.org/10.7554/eLife.43476" target="_blank" rel="noreferrer noopener">http://doi.org/10.7554/eLife.43476</a>
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Title
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The mother's risk of premature death after child loss across two centuries
Publisher
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Elife
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
attachment; child loss; demography; epidemiology; global health; human; mortality; psychological stress; sex difference
Creator
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Valdimarsdottir U A; Lu D; Lund S H; Fall K; Fang F; Kristjansson T; Guethbjartsson D; Helgason A; Stefansson K
Description
An account of the resource
While the rare occurrence of child loss is accompanied by reduced life expectancy of parents in contemporary affluent populations, its impact in developing societies with high child mortality rates is unclear. We identified all parents in Iceland born 1800-1996 and compared the mortality rates of 47,711 parents who lost a child to those of their siblings (N = 126,342) who did not. The proportion of parents who experienced child loss decreased from 61.1% of those born 1800-1880 to 5.2% of those born after 1930. Child loss was consistently associated with increased rate of maternal, but not paternal, death before the age of 50 across all parent birth cohorts; the relative increase in maternal mortality rate ranged from 35% among mothers born 1800-1930 to 64% among mothers born after 1930. The loss of a child poses a threat to the survival of young mothers, even during periods of high infant mortality rates.
Identifier
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<a href="http://doi.org/10.7554/eLife.43476" target="_blank" rel="noreferrer noopener">10.7554/eLife.43476</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
Attachment
Child Loss
Demography
Elife
Epidemiology
Fall K
Fang F
Global Health
Guethbjartsson D
Helgason A
Human
January 2020 List
Kristjansson T
Lu D
Lund S H
Mortality
psychological stress
sex difference
Stefansson K
Valdimarsdottir U A
-
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Title
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September 2019 List
Text
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Citation List Month
September 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0292" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0292</a>
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Title
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Implications of Pediatric Palliative Consultation for Intensive Care Unit Stay
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
2019
Subject
The topic of the resource
adolescent; adult; article; child; cohort analysis; female; human; major clinical study; male; retrospective study; controlled study; childhood cancer; pediatric hospital; Caucasian; length of stay; palliative therapy; pediatric intensive care unit; child hospitalization; confidence interval; demography; health insurance; hospital admission; infant; newborn; patient referral
Creator
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Rossfeld ZM; Miller R; Tumin D; Tobias JD; Humphrey LM
Description
An account of the resource
Background: The impact of specialty pediatric palliative care (PPC) on intensive care unit (ICU) length of stay for children is unclear. Objective: To estimate the impact of PPC consultation by analyzing ICU stay as a dynamic outcome over the course of hospitalization. Patients and Methods: Retrospective cohort study of children hospitalized with diagnoses suggested as referral triggers for PPC at a large academic children's hospital. We assessed ICU stay according to PPC consultation and, using a patient-day analysis, applied multivariable mixed effects logistic regression to predict the odds of being in the ICU on a given day. Results: The analytic sample included 777 admissions (11,954 hospital days), of which 100 admissions (13%) included PPC consultation. Principal patient demographics were age 8 ± 6 years, 55% male sex, 71% white race, and 52% commercial insurance. Cardiac diagnoses were most frequent (29%) followed by gastrointestinal (22%) and malignant (20%) conditions. Although total ICU stay was longer for admissions, including PPC consultation (compared to admissions where PPC was not consulted), the odds of being in the ICU on a given day were reduced by 79% after PPC consultation (odds ratio [OR] = 0.21; 95% confidence interval [CI]: 0.13-0.34; p < 0.001) for children with cancer and 85% (OR = 0.15; 95% CI: 0.08-0.26; p < 0.001) for children with nononcologic conditions. Conclusions: Among children hospitalized with a diagnosis deemed eligible for specialty PPC, the likelihood of being in the ICU on a given day was strongly reduced after PPC consultation, supporting the value of PPC.
Identifier
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<a href="http://doi.org/10.1089/jpm.2018.0292" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0292</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).
2019
Adolescent
Adult
Article
Caucasian
Child
child hospitalization
Childhood Cancer
Cohort Analysis
confidence interval
Controlled Study
Demography
Female
health Insurance
Hospital Admission
Human
Humphrey LM
Infant
Journal of Palliative Medicine
Length Of Stay
Major Clinical Study
Male
Miller R
Newborn
Palliative Therapy
Patient Referral
Pediatric Hospital
Pediatric Intensive Care Unit
Retrospective Study
Rossfeld ZM
September 2019 List
Tobias JD
Tumin D
-
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Title
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November 2018 List
Text
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Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537849.40363.f7" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537849.40363.f7</a>
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Title
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Paediatric palliative care: Are we doing enough? a retrospective review of deaths over 5 years in an academic tertiary hospital paediatric intensive care unit
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
2018
Subject
The topic of the resource
cause of death;palliative therapy;Pediatric intensive care unit;retrospective study;tertiary care center;adolescent;adult;advanced cancer;analgesia;artificial ventilation;cancer patient;Child;conference abstract;controlled study;demography;drug withdrawal;Female;human;inotropism;life sustaining treatment;major clinical study;Male;malignant neoplasm;medical history;medical record;neurologic disease;pediatric patient;resuscitation
Creator
An entity primarily responsible for making the resource
Ng MCG;Koh PL
Description
An account of the resource
Aims & Objectives: To study the epidemiology of deaths in our paediatric intensive care unit (PICU) over 5 years, so that we can better understand the dying experience of these patients and improve on palliative care for patients with life-limiting illnesses. Methods The medical records of all patients who died in the PICU from 2012 to 2016 were reviewed. Information including demographic data, past medical history, cause of death, referral to palliative care and use of life-sustaining therapies were collated. Results 81 patients died in the PICU from 2012 to 2016. Most deaths occurred in children aged 11 to 18 years old (31%), with a median age of 14. 69 (85%) patients had pre-existing life-limiting medical conditions, such as cancer and neurological disease. Of the 81 patients, 6 (7%) were known to palliative care services prior to admission and 6 (7%) were referred to palliative care during the admission. In terms of life-sustaining measures, 64 (79%) had invasive ventilation, 60 (74%) required inotropic support and 17 (21%) had cardiopulmonary resuscitation. In those whom death was expected, 59 (75%) patients received analgesia during the last 24 hours before death. 64 (79%) patients died after withdrawal or withholding of life-sustaining measures and 14 (17%) died after unsuccessful CPR. Conclusions Although majority of paediatric patients who died had pre-existing life-limiting conditions, very few were referred to palliative care. More can be done to improve the care of these patients, such as early referral to palliative care and establishment of advanced care plans.
Identifier
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<a href="http://doi.org/10.1097/01.pcc.0000537849.40363.f7" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537849.40363.f7</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Adolescent
Adult
Advanced Cancer
Analgesia
Artificial Ventilation
Cancer Patient
Cause Of Death
Child
conference abstract
Controlled Study
Demography
Drug Withdrawal
Female
Human
inotropism
Koh PL
Life Sustaining Treatment
Major Clinical Study
Male
Malignant Neoplasm
Medical History
Medical Record
Neurologic Disease
Ng MCG
November 2018 List
Palliative Therapy
Pediatric Critical Care Medicine
Pediatric Intensive Care Unit
pediatric patient
Resuscitation
Retrospective Study
tertiary care center
-
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
November 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1038/s41372-018-0102-2" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41372-018-0102-2</a>
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Title
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Opinions of Israeli neonatologists about life and death decisions in neonates
Publisher
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Journal of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Israeli;medical decision making;neonatologist;physician attitude;terminal care;adult;age;article;demography;disabled person;disease severity;dying;ethnicity;family attitude;Female;health care cost;human;Israel;Male;medical ethics;medicolegal aspect;middle aged;neonatal intensive care unit;normal human;personal experience;prospective study;psychological well being;questionnaire;religion;sex difference;simulation
Creator
An entity primarily responsible for making the resource
Kasirer MY;Mimouni FB;Bin-nun A;Schimmel MS
Description
An account of the resource
Background:: In 2005, the Israeli parliament passed the "law of dying patients" legalizing life and death decisions (do not resuscitate) in patients with life expectancy less than 6 months. Objective:: To determine whether ethnic and religious backgrounds (both religion and religiosity) influence neonatologists' attitudes in simulated clinical situations and opinions about the new law. Design/Methods:: Prospective design, using standard questionnaire sent to all 155 board-certified practising Israeli Neonatologists. The questionnaire sought demographic and descriptive data, personal opinions regarding four simulated cases, and opinions about five statements regarding variables that may influence decision-making. Statistical analyses were by stepwise backward regression analysis, linear regression, and Kruskal-Wallis tests, wherever indicated. Results:: Sixty-nine percent of the neonatologists replied, representing 27 NICUs out of the 29 NICUs in Israel. Most neonatologists would respect the wish of the family as long as it would be within the limits of the law or their personal beliefs. In stepwise regression analysis, religion, religiosity, age, gender, experience, or country of training did not influence significantly the neonatologists' opinions or their decisions in simulated practice. Most neonatologists felt that Ethical Committees had no role in NICUs and were seldom consulted. Most felt that likelihood of severe handicap was critical in decision-making. Issues related to treatment cost of a handicapped or dying infant, as well as impact of a handicapped infant on family's well-being, were not deemed critical. Conclusion:: Israeli neonatologists appear to be a relatively homogeneous group in end-of-life decisions, regardless of their ethnic, religious, or religiosity background.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1038/s41372-018-0102-2" target="_blank" rel="noreferrer noopener">10.1038/s41372-018-0102-2</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Adult
Age
Article
Bin-nun A
Demography
disabled person
Disease Severity
Dying
Ethnicity
Family Attitude
Female
Health Care Cost
Human
Israel
Israeli
Journal Of Perinatology
Kasirer MY
Male
Medical Decision Making
Medical Ethics
medicolegal aspect
Middle Aged
Mimouni FB
Neonatal Intensive Care Unit
Neonatologist
Normal Human
November 2018 List
Personal Experience
Physician Attitude
Prospective Study
psychological well being
Questionnaire
Religion
Schimmel MS
sex difference
Simulation
Terminal Care
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1089/jpm.2007.0105" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2007.0105</a>
Dublin Core
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Title
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Determinants of do-not-resuscitate orders in palliative home care.
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
2008
Subject
The topic of the resource
Female; Humans; Male; Pain Measurement; Adult; Canada; Aged; Middle Aged; Activities of Daily Living; Demography; Case Management; adolescent; 80 and over; retrospective studies; DNAR; Resuscitation Orders; Neuropsychological Tests; Pain/di [Diagnosis]; Advance Directives/sn [Statistics & Numerical Data]; Critical Illness/mo [Mortality]; Critical Illness/th [Therapy]; Palliative Care/sn [Statistics & Numerical Data]; Cognition Disorders/di [Diagnosis]; Cognition Disorders/ep [Epidemiology]; Palliative Care/lj [Legislation & Jurisprudence]
Creator
An entity primarily responsible for making the resource
Brink P; Smith TF; Kitson M
Description
An account of the resource
OVERVIEW: Do-not-resuscitate (DNR) orders allow home care clients to communicate their own wishes over medical treatment decisions, helping to preserve their dignity and autonomy. To date, little is known about DNR orders in palliative home care. Basic research to identify rates of completion and determinants of DNR orders has yet to be examined in palliative home care., PURPOSE: The purpose of this exploratory study was to determine who in palliative home care has a DNR order as part of their advance directive., METHODS: Information on health was collected using the interRAI instrument for palliative care (interRAI PC). The sample included 470 home care clients from one community care access centre in Ontario., RESULTS: This study indicated that a preference to die at home (odds ratio [OR]: 8.29, confidence interval [CI]: 4.55-15.11); close proximity to death (OR: 0.99, CI: 0.99-1.00); daily incontinence (OR: 2.74, CI: 1.05-7.16); and sleep problems (OR: 1.85, CI: 1.02-3.37) are associated with DNR orders. In addition, clients who are more accepting of their situation are 5.67 times (CI: 1.67-19.27) more likely to have a DNR in place., CONCLUSION: This study represents an important first step to identifying issues related to DNR orders. In addition to proximity to death, incontinence, and sleep problems, acceptance of one's own situation and a preference to die at home are important determinants of DNR completion. The results imply that these discussions might often depend not only on the health of the clients but also on the clients' acceptance of their current situation and where they wish to die.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2007.0105" target="_blank" rel="noreferrer">10.1089/jpm.2007.0105</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2008
80 And Over
Activities of Daily Living
Adolescent
Adult
Advance Directives/sn [Statistics & Numerical Data]
Aged
Backlog
Brink P
Canada
Case Management
Cognition Disorders/di [Diagnosis]
Cognition Disorders/ep [Epidemiology]
Critical Illness/mo [Mortality]
Critical Illness/th [therapy]
Demography
DNAR
Female
Humans
Journal Article
Journal of Palliative Medicine
Kitson M
Male
Middle Aged
Neuropsychological Tests
Pain Measurement
Pain/di [diagnosis]
Palliative Care/lj [Legislation & Jurisprudence]
Palliative Care/sn [Statistics & Numerical Data]
Resuscitation Orders
Retrospective Studies
Smith TF
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1089/jpm.2008.0178" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2008.0178</a>
Dublin Core
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Title
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Center to Advance Palliative Care palliative care consultation service metrics: consensus recommendations
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Humans; Palliative Care; referral and consultation; Consensus; Practice Guidelines as Topic; Length of Stay; Wisconsin; Demography; Palliative Care; Biometry; Community Health Centers; Essential Data Set
Creator
An entity primarily responsible for making the resource
Weissman DE; Meier DE; Spragens LH
Description
An account of the resource
The need to standardize the prospective collection and analysis of data has been a cornerstone of education and technical assistance provided by the Center to Advance Palliative Care (CAPC). Data analysis is vital for strategic planning, quality improvement, and demonstration of program impact to hospital administrators, private funders, and policymakers. To develop a set of core measures, CAPC convened a consensus panel in 2008 to focus on the topic of operational metrics for consultation services. Operational metrics, as distinct from clinical, customer and financial metrics, describe the characteristics of patients seen on the consultation service, such as age, disease, location, referring service and disposition. The panel arrived at 12 metric domains, all but one of which can be used for either internal programmatic use or for external comparisons of service characteristics/impact between different hospitals. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care consultation teams are encouraged to collect and report outcomes for each of the twelve metric domains described here.
2008-12
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2008.0178" target="_blank" rel="noreferrer">10.1089/jpm.2008.0178</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2008
Backlog
Biometry
Community Health Centers
Consensus
Demography
Essential Data Set
Humans
Journal Article
Journal of Palliative Medicine
Length Of Stay
Meier DE
Palliative Care
Practice Guidelines As Topic
Referral And Consultation
Spragens LH
Weissman DE
Wisconsin
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1186/1750-1172-3-24" target="_blank" rel="noreferrer">http://doi.org/10.1186/1750-1172-3-24</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The prevalence of and survival in Mucopolysaccharidosis I: Hurler, Hurler-Scheie and Scheie syndromes in the UK
Publisher
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Orphanet Journal Of Rare Diseases
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Child; Humans; Adult; Prevalence; Kaplan-Meier Estimate; Phenotype; Demography; Registries; Medical; adolescent; Societies; England/epidemiology; Mucopolysaccharidosis I/epidemiology/mortality/physiopathology; Wales/epidemiology
Creator
An entity primarily responsible for making the resource
Moore D; Connock MJ; Wraith E; Lavery C
Description
An account of the resource
BACKGROUND: Mucopolysaccharidosis type I (MPS I) is a rare lysosomal storage disease subdivided into three phenotypes of increasing severity: Scheie, Hurler-Scheie and Hurler. To gauge the effectiveness of treatments and to determine the load likely to fall on health-care systems, it is necessary to understand the prevalence and natural progression of the disease especially with regard to life-expectancy. In general such data on the natural history of lysosomal storage diseases is sparse. METHODS: Analysis of prevalence and patient survival in MPS I disease using a unique longitudinal data set initiated and maintained over a period of more than 20 years by the Society for Mucopolysaccharide Diseases (UK). RESULTS: The birth prevalence of MPS I in England and Wales over the period 1981 to 2003 was 1.07/100,000 births and within +/- 5% of estimates reported in several studies that examined reasonably large populations. The median survival for MPS I patients (including all phenotypes irrespective of various treatments) was found by Kaplan-Meier analysis to be 11.6 years. This result was driven by the relatively poor survival of patients with the Hurler phenotype who, irrespective of any treatments received, had a median survival of 8.7 years; when censoring for receipt of bone marrow transplant (BMT) was implemented median survival of Hurler patients was diminished to 6.8 years. The difference between these survival curves was statistically significant by log rank test and can be attributed to beneficial effects of BMT and or selection of patients with superior prognosis for intervention with BMT. Survival curves for Hurler patients who received and did not receive BMT were very different. Probability of survival at 2 year after BMT was ~68% and was similar to this after 5 years (66%) and ten years (64%); the mean age of Hurler patients at receipt of BMT was 1.33 years (range 0.1 to 3 years). Follow up was insufficient to determine median survival of the milder phenotypes however, unsurprisingly, this was clearly superior to that for Hurler patients. CONCLUSION: The birth prevalence of MPS I in England and Wales is 1.07/100,000 and the median survival for MPS I patients is 11.6 years.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1750-1172-3-24" target="_blank" rel="noreferrer">10.1186/1750-1172-3-24</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2008
Adolescent
Adult
Backlog
Child
Connock MJ
Demography
England/epidemiology
Humans
Journal Article
Kaplan-Meier Estimate
Lavery C
Medical
Moore D
Mucopolysaccharidosis I/epidemiology/mortality/physiopathology
Orphanet Journal Of Rare Diseases
Phenotype
Prevalence
Registries
Societies
Wales/epidemiology
Wraith E
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1469-8749.2005.tb01095.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1469-8749.2005.tb01095.x</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Gastrostomy tube feeding in children with cerebral palsy: a prospective, longitudinal study
Publisher
An entity responsible for making the resource available
Developmental Medicine And Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Treatment Outcome; Longitudinal Studies; Time Factors; Demography; adolescent; Preschool; infant; Newborn; retrospective studies; Enteral Nutrition/methods; Anthropometry/methods; Body Height/physiology; Cerebral Palsy/classification/nursing/surgery; Child Development/physiology; Gastrostomy/methods; Head/growth & development; Nutritional Status/physiology; Weight Gain/physiology
Creator
An entity primarily responsible for making the resource
Sullivan P; Juszczak E; Bachlet AM; Lambert B; Vernon-Roberts A; Grant HW; Eltumi M; McLean L; Alder N; Thomas AG
Description
An account of the resource
We report a longitudinal, prospective, multicentre cohort study designed to measure the outcomes of gastrostomy tube feeding in children with cerebral palsy (CP). Fifty-seven children with CP (28 females, 29 males; median age 4y 4mo, range 5mo to 17y 3mo) were assessed before gastrostomy placement, and at 6 and 12 months afterwards. Three-quarters of the children enrolled (43 of 57) had spastic quadriplegia; other diagnoses included mixed CP (6 of 57), hemiplegia (3 of 57), undiagnosed severe neurological impairment (3 of 57), ataxia (1 of 57), and extrapyramidal disorder (1 of 57). Only 7 of 57 (12%) could sit independently, and only 3 of 57 (5%) could walk unaided. Outcome measures included growth/anthropometry, nutritional intake, general health, and complications of gastrostomy feeding. At baseline, half of the children were more than 38D below the average weight for their age and sex when compared with the standards for typically-developing children. Weight increased substantially over the study period; the median weight z score increased from -3 before gastrostomy placement to -2.2 at 6 months and -1.6 at 12 months. Almost all parents reported a significant improvement in their child's health after this intervention and a significant reduction in time spent feeding. Statistically significant and clinically important increases in weight gain and subcutaneous fat deposition were noted. Serious complications were rare, with no evidence of an increase in respiratory complications.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1469-8749.2005.tb01095.x" target="_blank" rel="noreferrer">10.1111/j.1469-8749.2005.tb01095.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2005
Adolescent
Alder N
Anthropometry/methods
Bachlet AM
Backlog
Body Height/physiology
Cerebral Palsy/classification/nursing/surgery
Child
Child Development/physiology
Demography
Developmental Medicine and Child Neurology
Eltumi M
Enteral Nutrition/methods
Female
Gastrostomy/methods
Grant HW
Head/growth & development
Humans
Infant
Journal Article
Juszczak E
Lambert B
Longitudinal Studies
Male
McLean L
Newborn
Nutritional Status/physiology
Preschool
Retrospective Studies
Sullivan P
Thomas AG
Time Factors
Treatment Outcome
Vernon-Roberts A
Weight Gain/physiology
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1046/j.1466-769x.2003.00140.x" target="_blank" rel="noreferrer">http://doi.org/10.1046/j.1466-769x.2003.00140.x</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Locating a geography of nursing: space, place and the progress of geographical thought
Publisher
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Nursing Philosophy
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Humans; Nursing Research; Philosophy; Demography; Nursing
Creator
An entity primarily responsible for making the resource
Andrews GJ
Description
An account of the resource
Although traditionally, nursing research has paid little attention to geographical approaches, recent years have witnessed some initial research interest in the dynamic between nursing, space and place. Such research potentially represents the foundations of what may be termed a 'geography of nursing'. Although, to date, some novel and valuable perspectives have been gained into the spatial features of nursing, no consideration has been given to the theoretical development of, and basis for, a geography of nursing. Furthermore, no consideration has been given to philosophical heritage; the treatment of space and place in human geography and the insights that this may provide for the new field of research. In this context, this paper provides an historical review of geographical research and traces the evolution of how space and place have been conceptualized and operationalized by it. The paper outlines the emergence of a health geography subdiscipline and its own changing and diverse perspectives. In the final section, the central themes of the current geography of nursing are considered and, reflecting back on the theoretical concerns of contemporary human geography, the paper outlines some philosophies and theories on which future geography of nursing could be based. From a disciplinary perspective, one potential role of the geography of nursing is argued to be the maintenance of the relationship between health geography and mainstream health service and medical concerns, but in a place-sensitive, patient-sensitive and qualitative form.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1046/j.1466-769x.2003.00140.x" target="_blank" rel="noreferrer">10.1046/j.1466-769x.2003.00140.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2003
Andrews GJ
Backlog
Demography
Humans
Journal Article
Nursing
Nursing Philosophy
Nursing Research
Philosophy
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1053/rmed.2002.1329" target="_blank" rel="noreferrer">http://doi.org/10.1053/rmed.2002.1329</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
Demographic transition of the Swedish cystic fibrosis community--results of modern care
Publisher
An entity responsible for making the resource available
Respiratory Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Child; Humans; infant; Survival Rate; Adult; Prevalence; Middle Aged; Residence Characteristics; Linear Models; Incidence; Demography; Proportional Hazards Models; adolescent; Preschool; infant; Adolescent Transitions; Newborn; Sweden/epidemiology; Cystic Fibrosis/epidemiology/mortality/therapy
Creator
An entity primarily responsible for making the resource
Lannefors L; Lindgren A
Description
An account of the resource
Assessing the results of modern cystic fibrosis (CF)-care and estimating the future population and its demography is important to evaluate the treatment regimens and to calculate the future needs of health-care resources. This paper updates previous incidence calculations. It assesses the results of modern CF-care in terms of survival and changing demography in Sweden. The incidence of CF in Sweden was calculated as 1/5600 live-births. Of the CF-population alive in 1999, 45% were > or = 18 years old. The mean annual mortality rate since 1991 was 0.9% (+/-0.4) and the median age at death 26 years (range 0-72). Of those born > or = 1991, 95% were estimated to survive their 25th birthday. The incidence of CF in Sweden is low. Modern CF-care in Sweden shows good results. The CF-population is growing rapidly and the adult part of the population will soon be larger than the paediatric. Continuously adapted resources are required to assure the future treatment quality especially for the growing adult CF-population.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1053/rmed.2002.1329" target="_blank" rel="noreferrer">10.1053/rmed.2002.1329</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2002
Adolescent
Adolescent Transitions
Adult
Backlog
Child
Cystic Fibrosis/epidemiology/mortality/therapy
Demography
Humans
Incidence
Infant
Journal Article
Lannefors L
Lindgren A
Linear Models
Middle Aged
Newborn
Preschool
Prevalence
Proportional Hazards Models
Residence Characteristics
Respiratory Medicine
Survival Rate
Sweden/epidemiology
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1046/j.1526-4637.2001.01041.x" target="_blank" rel="noreferrer">http://doi.org/10.1046/j.1526-4637.2001.01041.x</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Designing pain research from the patient's perspective: What trial end points are important to patients with chronic pain?
Publisher
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Pain Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Female; Male; Adult; Aged; Perception; Demography; Human; Sleep; Interview; Evaluation; Chronic Pain/dt [Drug Therapy]; Outcomes Research; Article; Clinical Article; Clinical Study; Controlled Study; Disease Severity; Dose Response; Empiricism; Health Center; Medical Decision Making; Medical Information; Medical Research; Methodology; Opiate/do [Drug Dose]; Opiate/dt [Drug Therapy]; Pain Assessment; Pain Clinic; qualitative analysis; Rating Scale; Urban Area
Creator
An entity primarily responsible for making the resource
Casarett D; Karlawish J; Sankar P; Hirschman K; Asch DA
Description
An account of the resource
Objectives. The goals of this study were to define the endpoints of pain research that are important to patients with chronic pain and to identify clinical and demographic variables that are associated with patients' choices of endpoints. Patients & Setting. Interviews were completed with 40 patients seen at the anesthesia pain clinic of an urban tertiary care medical center. Design. Each patient was presented with 4 brief (3-4 sentences) fixed information vignettes describing studies in which new medications would be evaluated. For each, patients were asked to describe how the medication being studied might offer an improvement over their current therapy. Outcome measures. Measures included structured qualitative analysis of responses, the Brief Pain Inventory, and Global Distress Index of the Memorial Symptom Assessment Scale. Results. Patients described a total of 20 endpoints. Individually, patients cited between 2 and 9 end-points each (mean 4.9, standard deviation 1.7). Of these, the most commonly cited were decrease pain, decrease opioid dose, decrease frequency of scheduled dose, increased ability to function, decrease frequency of breakthrough dose, and improve sleep. Patients with severe pain cited more endpoints than did those with mild or moderate pain (mean 5.5 vs. 4.3; Rank sum test p = 0.01). Conclusions. These data suggest that empirical research can provide data to guide the choice of endpoints in clinical studies of pain interventions.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1046/j.1526-4637.2001.01041.x" target="_blank" rel="noreferrer">10.1046/j.1526-4637.2001.01041.x</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2001
Adult
Aged
Article
Asch DA
Backlog
Casarett D
Chronic Pain/dt [Drug Therapy]
Clinical Article
Clinical Study
Controlled Study
Demography
Disease Severity
Dose Response
Empiricism
Evaluation
Female
Health Center
Hirschman K
Human
Interview
Journal Article
Karlawish J
Male
Medical Decision Making
Medical Information
Medical Research
Methodology
Opiate/do [Drug Dose]
Opiate/dt [drug Therapy]
Outcomes Research
Pain Assessment
Pain Clinic
Pain Medicine
Perception
Qualitative Analysis
Rating Scale
Sankar P
Sleep
Urban Area
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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
A name given to the resource
January 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2018 List
URL Address
<a href="http://doi.org/10.1097/PCC.0000000000001219" target="_blank" rel="noreferrer">http://doi.org/10.1097/PCC.0000000000001219</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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Moral distress in PICU and neonatal ICU practitioners: A cross-sectional evaluation
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
2017
Subject
The topic of the resource
distress syndrome; health practitioner; morality; neonatal intensive care unit; pediatric intensive care unit; Adult; Article; burnout; correlation analysis; cross-sectional study; Demography; Female; Hospital care; Human; Intensive Care; linear regression analysis; major clinical study; Male; Maslach Burnout Inventory Depersonalization Subscale; Middle Aged; Mishel Parent Perception of Uncertainty Scale; nurse; outcome assessment; physician; priority journal; Prognosis; Questionnaire; Rating Scale; Revised Moral Distress Scale; Terminal Care; tertiary care center; Uncertainty; work; Young Adult
Creator
An entity primarily responsible for making the resource
Larson CP; Dryden-Palmer KD; Gibbons C; Parshuram CS
Description
An account of the resource
Objectives: To measure the level of moral distress in PICU and neonatal ICU health practitioners, and to describe the relationship of moral distress with demographic factors, burnout, and uncertainty. Design: Cross-sectional survey. Setting: A large pediatric tertiary care center. Subjects: Neonatal ICU and PICU health practitioners with at least 3 months of ICU experience. Interventions: A 41-item questionnaire examining moral distress, burnout, and uncertainty. Measurements and Main Results: The main outcome was moral distress measured with the Revised Moral Distress Scale. Secondary outcomes were frequency and intensity Revised Moral Distress Scale subscores, burnout measured with the Maslach Burnout Inventory depersonalization subscale, and uncertainty measured with questions adapted from Mishel's Parent Perception of Uncertainty Scale. Linear regression models were used to examine associations between participant characteristics and the measures of moral distress, burnout, and uncertainty. Two-hundred six analyzable surveys were returned. The median Revised Moral Distress Scale score was 96.5 (interquartile range, 69-133), and 58% of respondents reported significant work-related moral distress. Revised Moral Distress Scale items involving end-of-life care and communication scored highest. Moral distress was positively associated with burnout (r<sup>2</sup> = 0.27; p < 0.001) and uncertainty (r<sup>2</sup> = 0.04; p = 0.008) and inversely associated with perceived hospital supportiveness (r<sup>2</sup> = 0.18; p < 0.001). Nurses reported higher moral distress intensity than physicians (Revised Moral Distress Scale intensity subscores: 57.3 vs 44.7; p = 0.002). In nurses only, moral distress was positively associated with increasing years of ICU experience (p = 0.02) and uncertainty about whether their care was of benefit (r<sup>2</sup> = 0.11; p < 0.001) and inversely associated with uncertainty about a child's prognosis (r<sup>2</sup> = 0.03; p = 0.03). Conclusions: In this single-center, cross-sectional study, we found that moral distress is present in PICU and neonatal ICU health practitioners and is correlated with burnout, uncertainty, and feeling unsupported.
Identifier
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<a href="http://doi.org/10.1097/PCC.0000000000001219" target="_blank" rel="noreferrer">10.1097/PCC.0000000000001219</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).
2017
Adult
Article
Burnout
Correlation Analysis
Cross-sectional Study
Demography
Distress Syndrome
Dryden-Palmer KD
Female
Gibbons C
health practitioner
Hospital care
Human
Intensive Care
January 2018 List
Larson CP
linear regression analysis
Major Clinical Study
Male
Maslach Burnout Inventory Depersonalization Subscale
Middle Aged
Mishel Parent Perception of Uncertainty Scale
Morality
Neonatal Intensive Care Unit
Nurse
outcome assessment
Parshuram CS
Pediatric Critical Care Medicine
Pediatric Intensive Care Unit
Physician
Priority Journal
Prognosis
Questionnaire
Rating Scale
Revised Moral Distress Scale
Terminal Care
tertiary care center
Uncertainty
Work
Young Adult
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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
A name given to the resource
Oncology
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1542/peds.2017-0671" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2017-0671</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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Disparities in the intensity of end-of-life care for children with cancer
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Childhood Cancer; Health Care Disparity; Terminal Care; Adolescent; Adult; Article; Cancer Chemotherapy; Caucasian; Child; Childhood Mortality; Cohort Analysis; Controlled Study; Demography; Female; Hematologic Malignancy; Hemodialysis; Hospital Admission; Hospital Mortality; Human; Infant; Intensive Care Unit; Intubation; Major Clinical Study; Male; Newborn; Population Research; Priority Journal; Resuscitation; Retrospective Study
Creator
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Johnston EE; Alvarez E; Saynina O; Sanders L; Bhatia S; Chamberlain LJ
Description
An account of the resource
BACKGROUND: Many adult patients with cancer who know they are dying choose less intense care; additionally, high-intensity care is associated with worse caregiver outcomes. Little is known about intensity of end-of-life care in children with cancer. METHODS: By using the California Office of Statewide Health Planning and Development administrative database, we performed a population-based analysis of patients with cancer aged 0 to 21 who died between 2000 and 2011. Rates of and sociodemographic and clinical factors associated with previously-defined end-of-life intensity indicators were determined. The intensity indicators included an intense medical intervention (cardiopulmonary resuscitation, intubation, ICU admission, or hemodialysis) within 30 days of death, intravenous chemotherapy within 14 days of death, and hospital death. RESULTS: The 3732 patients were 34% non-Hispanic white, and 41% had hematologic malignancies. The most prevalent intensity indicators were hospital death (63%) and ICU admission (20%). Sixty-five percent had >=1 intensity indicator, 23% >=2, and 22% >=1 intense medical intervention. There was a bimodal association between age and intensity: Ages <5 years and 15 to 21 years was associated with intense care. Patients with hematologic malignancies were more likely to have high-intensity end-of-life care, as were patients from underrepresented minorities, those who lived closer to the hospital, those who received care at a nonspecialty center (neither Children's Oncology Group nor National Cancer Institute Designated Cancer Center), and those receiving care after 2008. CONCLUSIONS: Nearly two-thirds of children who died of cancer experienced intense end-of-life care. Further research needs to determine if these rates and disparities are consistent with patient and/or family goals.
Identifier
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<a href="http://doi.org/10.1542/peds.2017-0671" target="_blank" rel="noreferrer">10.1542/peds.2017-0671</a>10.1542/peds.2017-0671
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).
2017
Adolescent
Adult
Alvarez E
Article
Bhatia S
Cancer Chemotherapy
Caucasian
Chamberlain LJ
Child
Childhood Cancer
Childhood Mortality
Cohort Analysis
Controlled Study
Demography
Female
Health Care Disparity
Hematologic Malignancy
Hemodialysis
Hospital Admission
Hospital Mortality
Human
Infant
Intensive Care Unit
Intubation
Johnston EE
Major Clinical Study
Male
Newborn
Oncology 2017 List
Pediatrics
Population Research
Priority Journal
Resuscitation
Retrospective Study
Sanders L
Saynina O
Terminal Care
-
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
December 2017 List
URL Address
<a href="http://doi.org/10.1002/ajmg.a.37807" target="_blank" rel="noreferrer">http://doi.org/10.1002/ajmg.a.37807</a>
Notes
<p>Jacobs, Adam P<br />Subramaniam, Akila<br />Tang, Ying<br />Philips, Joseph B 3rd<br />Biggio, Joseph R<br />Edwards, Rodney K<br />Robin, Nathaniel H</p>
;
<p>Using Smart Source Parsing<br />( (pp 2016. Date of Publication: 01 Oct 2016</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
Trisomy 18: A survey of opinions, attitudes, and practices of neonatologists
Publisher
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American Journal Of Medical Genetics Part A
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Attitude Of Health Personnel; Health Care Surveys; Neonatologists/px [psychology]; Physician Attitude; Practice Patterns Physicians'; Trisomy 18; Trisomy/di [diagnosis]; Adult; Article; Attitude To Abortion; Caucasian; Christian; Chromosomes Human Pair 18; Clinical Practice; Correlation Analysis; Demography; Disease Management; Disease Severity; Family; Female; Fetus Malformation; Human; Humans; Intellectual Impairment; Male; Marriage; Medical Decision Making; Medical Society; Neonatologist; Newborn Care; Normal Human; Outcome Assessment (health Care); Palliative Care; Palliative Therapy; Parental Attitude; Prenatal Diagnosis; Priority Journal; Race Difference; Resuscitation; Survival Rate; Trisomy 18; United States
Creator
An entity primarily responsible for making the resource
Jacobs AP; Subramaniam A; Tang Y; Philips JB 3rd; Biggio JR; Edwards RK; Robin NH
Description
An account of the resource
We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal anomalies and collected demographic information on participants, as well as their attitudes, and management choices given a series of vignettes beginning in the prenatal period. The survey was sent to 3,143 American Academy of Pediatrics Section on Neonatal-Perinatal Medicine members of which 409 (13%) completed the survey. While the response rate was rather low, our respondent pool was representative of the national neonatologist population. Respondents were predominately white (81%), married (88%), Christian (54%), had children (86%), and were pro-choice in terms of abortion (68%). Eighty-three percent (83%) of respondents thought that trisomy 18 is a lethal condition and 60% thought that treatment is futile. Seventy-five percent (75%) expected that the best neurodevelopmental outcome in the case of infant survival would be profound intellectual disability. Regarding neonatal care, 95% stated that they would recommend palliative care only. Ninety-five percent (95%) would never recommend or recommend only if asked full code resuscitation for a neonate with full trisomy 18, yet, 44% would comply partially or in full with a full code request for resuscitation measures. The demographic features that correlated most significantly with these responses were clinician race and years in practice. The attitudes toward and management of infants affected with trisomy 18 seem to be largely driven by parental attitudes and wishes. � 2016 Wiley Periodicals, Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/ajmg.a.37807" target="_blank" rel="noreferrer">10.1002/ajmg.a.37807</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adult
American Journal of Medical Genetics Part A
Article
Attitude Of Health Personnel
Attitude To Abortion
Biggio JR
Caucasian
Christian
Chromosomes Human Pair 18
Clinical Practice
Correlation Analysis
December 2017 List
Demography
Disease Management
Disease Severity
Edwards RK
Family
Female
Fetus Malformation
Health Care Surveys
Human
Humans
Intellectual Impairment
Jacobs AP
Male
Marriage
Medical Decision Making
Medical Society
Neonatologist
Neonatologists/px [psychology]
Newborn Care
Normal Human
Outcome Assessment (health Care)
Palliative Care
Palliative Therapy
Parental Attitude
Philips JB 3rd
Physician Attitude
Practice Patterns Physicians'
Prenatal Diagnosis
Priority Journal
Race Difference
Resuscitation
Robin NH
Subramaniam A
Survival Rate
Tang Y
Trisomy 18
Trisomy/di [diagnosis]
United States