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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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September 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.
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September 2020 List
URL Address
<a href="http://doi.org/10.1016/j.yebeh.2020.107268" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.yebeh.2020.107268</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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Expectations and knowledge of cannabidiol therapy for childhood epilepsy — A German caregiver survey
Publisher
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Epilepsy & Behavior
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Cannabidiol; Caregiver; Epilepsy; Information; Survey; Tolerance
Creator
An entity primarily responsible for making the resource
Klotz K A; Schönberger J; Nakamura L; San Antonio-Arce V; Bast T; Wiemer-Kruel A; Schubert-Bast S; Borggraefe I; Syrbe S; Jacobs J
Description
An account of the resource
Background Cannabidiol (CBD) has gained popularity among parents of children with epilepsy, even before evidence of efficacy and safety was available. The aim of our survey was to gain information about parental attitude to CBD, as well as expectations and knowledge of CBD for treatment of their child's epilepsy. Methods A survey using an open-access online questionnaire for parents or caregivers of children with epilepsy within German-speaking countries from March to June 2019 was used. Results Of 378 complete questionnaires (mean age of children: 11.1 (standard deviation [SD] 7.4) years), 28% (n = 106) reported previous or current CBD treatment over a mean time of 17.31 months (SD: 19.74), whereas 72% had no personal experience with CBD. Treatment was proposed by parents and not by physicians in 83% of cases and was mainly carried out with prescription-only products (71%, n = 67). Nevertheless, 29% used unregulated, artisanal products. Of all parents with previous experience, n = 77 (73%) reported that they expected CBD to be more efficient than the common antiseizure drugs (ASDs) at the beginning. Forty-five percent reported that their expectations were not met during therapy. Consistently, lack of seizure reduction was the most common reason to discontinue CBD (12/26). Of those responders without CBD experience, 93% would consider CBD for their child. However, the self-reported level of information was considered to be poor or very poor regarding efficacy (76%, n = 177), tolerance (83%, n = 191), interaction with other medication (91%, n = 211), and potential long-term effects (87%, n = 212). Conclusions There is a huge interest in CBD but includes potentially unrealistic expectations of its efficacy and tolerance combined with a low level of information. Neuropediatricians should address parents of children with epilepsy regarding potential motivation and expectations of CBD. In addition, parental education, especially on interactions and potential side effects, is strongly recommended.
Identifier
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<a href="http://doi.org/10.1016/j.yebeh.2020.107268" target="_blank" rel="noreferrer noopener">10.1016/j.yebeh.2020.107268</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).
2020
Bast T
Borggraefe I
Cannabidiol
Caregiver
Epilepsy
Epilepsy & Behavior
Information
Jacobs J
Klotz K A
Nakamura L
San Antonio-Arce V
Schönberger J
Schubert-Bast S
September 2020 List
Survey
Syrbe S
Tolerance
Wiemer-Kruel A
-
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 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Lethal Fetal Abnormalities: How To Approach Perinatal Palliative Care?
Publisher
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Journal Of Maternal, Fetal And Neonatal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Obstetrics & Gynecology; Anomalies; Prenatal-diagnosis; Malformations; Pregnancy; Professionals
Ethical Issue; Fetal Abnormality; Information; Palliative Care; Perinatal Medicine
Creator
An entity primarily responsible for making the resource
Tosello B; Haddad G; Gire C; Einaudi MA
Description
An account of the resource
OBJECTIVE:
Some of the antenatally diagnosed fetal pathologies are unlikely to get compatible with life. Still some women choose to continue with pregnancy. Subsequently, perinatal palliative care (PPC) has become a constructive demarche in such situations. Our study, based on a multicentric survey, reports some cases of fetal pathologies considered as lethal according to perinatal professionals and reveals the decisional process in each case.
METHODS:
We sent by emails a questionnaire to 434 maternal-fetal medicine specialists and fetal care pediatric specialists at 48 multidisciplinary centers for prenatal diagnosis.
RESULTS:
The participation rate was 49.3%. In total, 61 obstetric-gynecologists and 68 neonatologists completed the survey. The results showed that 35.4% of the pregnant women asked for the continuation of pregnancy and 24.7% asked for the termination of pregnancy. More than half of professionals (52.9%) took the initiative of informing women about the options for birth support (including PPC), while 32.7% of obstetric gynecologists did not take this initiative versus 10.2% of neonatologists (p < 0.01).
CONCLUSION:
This study demonstrates the absolute need to provide PPC training for professionals and to standardize its practices.
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
Anomalies
Einaudi MA
Ethical Issue
Fetal Abnormality
Gire C
Haddad G
Information
Journal of Maternal, Fetal and Neonatal Medicine
Malformations
May 2016 List
Obstetrics & Gynecology
Palliative Care
Perinatal Medicine
Pregnancy
Prenatal-diagnosis
Professionals
Tosello B
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Cause Of Death Of Infants And Children In The Intensive Care Unit: Parents’ Recall Vs Chart Review.
Publisher
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American Journal Of Critical Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Risk; Information; Family-members; Of-life Care; Communication; Nursing Perspectives; Complicated Grief; Critical Care Medicine
Creator
An entity primarily responsible for making the resource
Brooten D; Youngblut JM; Caicedo C; Seagrave L; Cantwell GP; Totapally B
Description
An account of the resource
BACKGROUND:
More than 55 000 children die annually in the United States, most in neonatal and pediatric intensive care units. Because of the stress and emotional turmoil of the deaths, the children's parents have difficulty comprehending information.
OBJECTIVES:
To compare parents' reports and hospital chart data on cause of death and examine agreement on cause of death according to parents' sex, race, participation in end-of-life decisions, and discussion with physicians; deceased child's age; unit of care (neonatal or pediatric); and hospital and intensive care unit lengths of stay.
METHODS:
A descriptive, correlational design was used with a structured interview of parents 1 month after the death and review of hospital chart data. Parents whose children died in intensive care were recruited from 4 South Florida hospitals and from Florida Department of Health death records.
RESULTS:
Among 230 parents, 54% of mothers and 40% of fathers agreed with the chart cause of death. Agreement did not differ significantly for mothers or fathers by race/ethnicity, participation in end-of-life decisions, discussions with physicians, or mean length of hospital stay. Agreement was better for mothers when the stay in the intensive care unit was the shortest. Fathers' agreement with chart data was best when the deceased was an infant and death was in the pediatric intensive care unit.
CONCLUSIONS:
Death of a child is a time of high stress when parents' concentration, hearing, and information processing are diminished. Many parents have misconceptions about the cause of the death 1 month after the death.
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
American Journal of Critical Care
Brooten D
Caicedo C
Cantwell GP
Communication
Complicated Grief
Critical Care Medicine
Family-members
Information
May 2016 List
Nursing Perspectives
Of-life Care
Risk
Seagrave L
Totapally B
Youngblut JM