1
40
1703
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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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1016/j.jpedsurg.2005.10.007" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpedsurg.2005.10.007</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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Esophageal strictures in children with recessive dystrophic epidermolysis bullosa: an 11-year experience with fluoroscopically guided balloon dilatation
Publisher
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Journal of Pediatric Surgery
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Adolescent; Barium; Catheterization; Child; Preschool; Epidermolysis Bullosa; Dystrophica/co [Complications]; Esophageal Stenosis/et [Etiology]; Esophageal Stenosis/th [Therapy]; Female; Humans; Male; Retrospective Studies; Treatment Outcome; 24GP945V5T (Barium); feeding difficulties; surgical intervention; fluoroscopically guided balloon dilatation
Creator
An entity primarily responsible for making the resource
Azizkhan R G; Stehr W; Cohen A P; Wittkugel E; Farrell M K; Lucky A W; Hammelman B D; Johnson N D; Racadio J M
Description
An account of the resource
BACKGROUND: Recessive dystrophic epidermolysis bullosa (RDEB) is an inherited blistering skin disorder that is associated with significant esophageal strictures, resulting in dysphagia and nutritional failure. Although endoscopically guided balloon dilatation is a widely used treatment, the use of an endoscope carries the risk of oropharyngeal trauma. To minimize this risk, we have eliminated its use. METHOD: We reviewed the charts of all RDEB patients who underwent balloon dilatation for esophageal strictures between August 1993 and March 2005. Balloon dilatation procedures were performed under anesthesia and with fluoroscopic control. RESULTS: We performed 92 dilatations on 25 RDEB patients. Most patients reported immediate relief of symptoms, rapid recovery, and resumption of adequate food intake within 1 day. The mean interval between dilatations was 1 year. Six patients (24%) have required only 1 dilatation, and 1 of these 6 has had a dilatation-free interval of 25 months. One patient with a history of multiple dilatations has remained dilatation-free for 5 years. No procedure-related complications have occurred. CONCLUSIONS: Fluoroscopically guided balloon dilatation is a gentle, safe, effective, and repeatable technique that should be considered as a first line of treatment.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpedsurg.2005.10.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpedsurg.2005.10.007</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).
2006
24GP945V5T (Barium)
Adolescent
Azizkhan R G
barium
Catheterization
Child
Cohen A P
Dystrophica/co [Complications]
epidermolysis bullosa
Esophageal Stenosis/et [Etiology]
Esophageal Stenosis/th [Therapy]
Farrell M K
feeding difficulties
Female
fluoroscopically guided balloon dilatation
Hammelman B D
Humans
Johnson N D
Journal Of Pediatric Surgery
Lucky A W
Male
Preschool
Racadio J M
Retrospective Studies
Stehr W
surgical intervention
Treatment Outcome
Wittkugel E
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2021 List
URL Address
<a href="http://doi.org/10.1111/1471-0528.16529" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/1471-0528.16529</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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Parent engagement in perinatal mortality reviews: an online survey of clinicians from six high-income countries
Publisher
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Bjog
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Female; Humans; Male; Infant Newborn; Health Care Surveys; Parents; Cross-Sectional Studies; Developed Countries; Patient Participation; Stillbirth; Perinatal Mortality; stillbirth; Patient Safety; Bereavement care; parent engagement; perinatal mortality review; Medical Audit/methods
Creator
An entity primarily responsible for making the resource
Boyle FM; Horey D; Siassakos D; Burden C; Bakhbakhi D; Silver RM; Flenady V
Description
An account of the resource
OBJECTIVE: Parent engagement in perinatal mortality review meetings following stillbirth may benefit parents and improve patient safety. We investigated perinatal mortality review meeting practices, including the extent of parent engagement, based on self-reports from healthcare professionals from maternity care facilities in six high-income countries. DESIGN: Cross-sectional online survey. SETTING: Australia, Canada, Ireland, New Zealand, UK and USA. POPULATION: A total of 1104 healthcare professionals, comprising mainly obstetricians, gynaecologists, midwives and nurses. METHODS: Data were drawn from responses to a survey covering stillbirth-related topics. Open- and closed-items that focused on 'Data quality on causes of stillbirth' were analysed. MAIN OUTCOME MEASURES: Healthcare professionals' self-reported practices around perinatal mortality review meetings following stillbirth. RESULTS: Most clinicians (81.0%) were aware of regular audit meetings to review stillbirth at their maternity facility, although this was true for only 35.5% of US respondents. For the 854 respondents whose facility held regular meetings, less than a third (31.1%) reported some form of parent engagement, and this was usually in the form of one-way post-meeting feedback. Across all six countries, only 17.1% of respondents described an explicit approach where parents provided input, received feedback and were represented at meetings. CONCLUSIONS: We found no established practice of involving parents in the perinatal mortality review process in six high-income countries. Parent engagement may hold the key to important lessons for stillbirth prevention and care. Further understanding of approaches, barriers and enablers is warranted. TWEETABLE ABSTRACT: Parent engagement in mortality review after stillbirth is rare, based on data from six countries. We need to understand the barriers.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/1471-0528.16529" target="_blank" rel="noreferrer noopener">10.1111/1471-0528.16529</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
April 2021 List
Bakhbakhi D
Bereavement Care
Bjog
Boyle FM
Burden C
Cross-sectional Studies
Developed Countries
Female
Flenady V
Health Care Surveys
Horey D
Humans
Infant Newborn
Male
Medical Audit/methods
parent engagement
Parents
Patient Participation
Patient Safety
Perinatal Mortality
perinatal mortality review
Siassakos D
Silver RM
Stillbirth
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1111/j.1365-2788.2007.01016.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/j.1365-2788.2007.01016.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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Melatonin treatment in individuals with intellectual disability and chronic insomnia: a randomized placebo-controlled study
Publisher
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Journal of Intellectual Disability Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Saliva; Middle Aged; Treatment Outcome; Humans; Adolescent; Child Preschool; Double-Blind Method; Time Factors; Central Nervous System Depressants/adverse effects/therapeutic use; Melatonin/adverse effects/therapeutic use; Mental Retardation/epidemiology/psychology; Sleep Initiation and Maintenance Disorders/drug therapy/epidemiology/psychology; Q3 Literature Search; chronic disease; child; female; male; adult; comorbidity; aged; sleep disturbance/disorders; chromosome 18q deletion; MPS III; pharmacologic intervention; melatonin
Creator
An entity primarily responsible for making the resource
Braam W; Didden R; Smits M; Curfs L
Description
An account of the resource
BACKGROUND: While several small-number or open-label studies suggest that melatonin improves sleep in individuals with intellectual disabilities (ID) with chronic sleep disturbance, a larger randomized control trial is necessary to validate these promising results. METHODS: The effectiveness of melatonin for the treatment of chronic sleep disturbance was assessed in a randomized double-blind placebo-controlled trial with 51 individuals with ID. All of these individuals presented with chronic ideopatic sleep disturbance for more than 1 year. The study consisted of a 1-week baseline, followed by 4 weeks of treatment. Parents or other caregivers recorded lights off time, sleep onset time, night waking, wake up time and epileptic seizures. Endogenous melatonin cycle was measured in saliva before and after treatment. RESULTS: Compared with placebo, melatonin significantly advanced mean sleep onset time by 34 min, decreased mean sleep latency by 29 min, increased mean total sleep time by 48 min, reduced the mean number of times the person awoke during the night by 0.4, decreased the mean duration of these night waking periods by 17 min and advanced endogenous melatonin onset at night by an average of 2.01 h. Lights off time, sleep offset time and the number of nights per week with night waking did not change. Only few minor or temporary adverse reactions and no changes in seizure frequency were reported. CONCLUSIONS: Melatonin treatment improves some aspects of chronic sleep disturbance in individuals with ID.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1365-2788.2007.01016.x" target="_blank" rel="noreferrer noopener">10.1111/j.1365-2788.2007.01016.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).
2008
Adolescent
Adult
Aged
Braam W
Central Nervous System Depressants/adverse effects/therapeutic use
Child
Child Preschool
chromosome 18q deletion
Chronic Disease
Comorbidity
Curfs L
Didden R
Double-Blind Method
Female
Humans
Journal Of Intellectual Disability Research
Male
melatonin
Melatonin/adverse effects/therapeutic use
Mental Retardation/epidemiology/psychology
Middle Aged
MPS III
pharmacologic intervention
Q3 Scoping Review Results
Saliva
sleep disturbance/disorders
Sleep Initiation and Maintenance Disorders/drug therapy/epidemiology/psychology
Smits M
Time Factors
Treatment Outcome
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
April 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2021 List
URL Address
<a href="http://doi.org/10.1177/0269216319885566" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319885566</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
Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Infant; Adolescent; Child; Female; Humans; Male; Child Preschool; Infant Newborn; Research Design; Terminally Ill; Ethics Committees Research; Human Experimentation/ethics; content analysis; United Kingdom; research; ethics committees
Creator
An entity primarily responsible for making the resource
Butler AE; Vincent K; Bluebond-Langner M
Description
An account of the resource
BACKGROUND: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to applications for research with other populations. Whether or not this is the case in practice is unknown. AIM: The aim of this study was to explore committees' concerns, expectations and decisions for research applications involving seriously ill children submitted for review in the United Kingdom. DESIGN: Content analysis of committee meeting minutes, decision letters and researcher response letters. SETTING/PARTICIPANTS: Chief investigators for National Institute of Health Research portfolio studies involving seriously ill children were contacted for permission to review their study documents. RESULTS: Of the 77 applications included in this study, 57 received requests for revisions at first review. Committee expectations and concerns commonly related to participant information sheets, methodology, consent, recruitment or formatting. Changes were made to 53 of these studies, all of which were subsequently approved. CONCLUSION: Our findings suggest that committees review applications for research involving seriously ill children with the same scrutiny as applications for research with other populations. Yet, the perception that committees act as a barrier to this type of research persists. We suggest that this perception remains due to other factors including, but not limited to, the high levels of formatting or administrative revisions requested by committees or additional study requirements needed for research involving children, such as multiple versions of consent forms or participant information sheets.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216319885566" target="_blank" rel="noreferrer noopener">10.1177/0269216319885566</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
Adolescent
April 2021 List
Bluebond-Langner M
Butler AE
Child
Child Preschool
Content Analysis
Ethics Committees
Ethics Committees Research
Female
Human Experimentation/ethics
Humans
Infant
Infant Newborn
Male
Palliative Medicine
Research
Research Design
Terminally Ill
United Kingdom
Vincent K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1111/j.1469-8749.1996.tb12114.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/j.1469-8749.1996.tb12114.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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Sleep problems in children with Sanfilippo syndrome.
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
1996
Subject
The topic of the resource
Humans; Longitudinal Studies; Sleep Disorders/etiology; Questionnaires; Time Factors; Sleep Disorders/therapy; Child Preschool; Mucopolysaccharidosis III/classification; Mucopolysaccharidosis III/complications; child; female; male; sleep disturbance/disorders; MPS III; psychological intervention
Creator
An entity primarily responsible for making the resource
Colville G A; Watters J P; Yule W; Bax M
Description
An account of the resource
Sanfilippo syndrome is a rare degenerative disorder which has severe intellectual and behavioural sequelae, commonly including sleep problems. A parental questionnaire was used to gather information on the sleep patterns of 80 children with Sanfilippo syndrome (mean age 10 years 2 months). The majority were found to have sleep problems (78%). Many also exhibited other distressing and unusual night time behaviours (staying up all night, chewing the bedclothes or crying out suddenly), and a few laughed or sang. Such problems may have been more severe in those with Sanfilippo syndrome type B. In four of the families offered individually tailored behaviour-management advice there was immediate improvement, which was maintained at followup in two cases. These results demonstrate the usefulness of even such a minimal intervention, even in a very difficult population such as this.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1469-8749.1996.tb12114.x" target="_blank" rel="noreferrer noopener">10.1111/j.1469-8749.1996.tb12114.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).
1996
Bax M
Child
Child Preschool
Colville G A
Developmental Medicine and Child Neurology
Female
Humans
Longitudinal Studies
Male
MPS III
Mucopolysaccharidosis III/classification
Mucopolysaccharidosis III/complications
psychological intervention
Questionnaires
Sleep Disorders/etiology
Sleep Disorders/therapy
sleep disturbance/disorders
Time Factors
Watters J P
Yule W
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2021 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2020.18109" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2020.18109</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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Genome Sequencing as a Diagnostic Test in Children With Unexplained Medical Complexity
Publisher
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JAMA Network Open
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; Female; Humans; Male; Reproducibility of Results; Child Preschool; Canada; Prospective Studies; Predictive Value of Tests; Genetic Testing/statistics & numerical data; Somatoform Disorders/diagnosis; Whole Genome Sequencing/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Costain G; Walker S; Marano M; Veenma D; Snell M; Curtis M; Luca S; Buera J; Arje D; Reuter MS; Thiruvahindrapuram B; Trost B; Sung WWL; Yuen RKC; Chitayat D; Mendoza-Londono R; Stavropoulos DJ; Scherer SW; Marshall CR; Cohn RD; Cohen E; Orkin J; Meyn MS; Hayeems RZ
Description
An account of the resource
IMPORTANCE: Children with medical complexity (CMC) represent a growing population in the pediatric health care system, with high resource use and associated health care costs. A genetic diagnosis can inform prognosis, anticipatory care, management, and reproductive planning. Conventional genetic testing strategies for CMC are often costly, time consuming, and ultimately unsuccessful. OBJECTIVE: To evaluate the analytical and clinical validity of genome sequencing as a comprehensive diagnostic genetic test for CMC. DESIGN, SETTING, AND PARTICIPANTS: In this cohort study of the prospective use of genome sequencing and comparison with standard-of-care genetic testing, CMC were recruited from May 1, 2017, to November 30, 2018, from a structured complex care program based at a tertiary care pediatric hospital in Toronto, Canada. Recruited CMC had at least 1 chronic condition, technology dependence (child is dependent at least part of each day on mechanical ventilators, and/or child requires prolonged intravenous administration of nutritional substances or drugs, and/or child is expected to have prolonged dependence on other device-based support), multiple subspecialist involvement, and substantial health care use. Review of the care plans for 545 CMC identified 143 suspected of having an undiagnosed genetic condition. Fifty-four families met inclusion criteria and were interested in participating, and 49 completed the study. Probands, similarly affected siblings, and biological parents were eligible for genome sequencing. EXPOSURES: Genome sequencing was performed using blood-derived DNA from probands and family members using established methods and a bioinformatics pipeline for clinical genome annotation. MAIN OUTCOMES AND MEASURES: The primary study outcome was the diagnostic yield of genome sequencing (proportion of CMC for whom the test result yielded a new diagnosis). RESULTS: Genome sequencing was performed for 138 individuals from 49 families of CMC (29 male and 20 female probands; mean [SD] age, 7.0 [4.5] years). Genome sequencing detected all genomic variation previously identified by conventional genetic testing. A total of 15 probands (30.6%; 95% CI 19.5%-44.6%) received a new primary molecular genetic diagnosis after genome sequencing. Three individuals had novel diseases and an additional 9 had either ultrarare genetic conditions or rare genetic conditions with atypical features. At least 11 families received diagnostic information that had clinical management implications beyond genetic and reproductive counseling. CONCLUSIONS AND RELEVANCE: This study suggests that genome sequencing has high analytical and clinical validity and can result in new diagnoses in CMC even in the setting of extensive prior investigations. This clinical population may be enriched for ultrarare and novel genetic disorders. Genome sequencing is a potentially first-tier genetic test for CMC.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jamanetworkopen.2020.18109" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.18109</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
Arje D
Buera J
Canada
Child
Child Preschool
Chitayat D
Cohen E
Cohn RD
Costain G
Curtis M
Female
Genetic Testing/statistics & numerical data
Hayeems RZ
Humans
JAMA Network Open
Luca S
Male
Marano M
March 2021 List
Marshall CR
Mendoza-Londono R
Meyn MS
Orkin J
Predictive Value of Tests
Prospective Studies
Reproducibility of Results
Reuter MS
Scherer SW
Snell M
Somatoform Disorders/diagnosis
Stavropoulos DJ
Sung WWL
Thiruvahindrapuram B
Trost B
Veenma D
Walker S
Whole Genome Sequencing/statistics & numerical data
Yuen RKC
-
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
2018 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
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1111/ecc.12651" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1111/ecc.12651</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
Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology
Publisher
An entity responsible for making the resource available
European Journal of Cancer Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Neoplasms/psychology; Medical Oncology; Middle Aged; Male; Disease Progression; dying; Child; Humans; Adult; Qualitative Research; Pediatrics; Adolescent; Parents; palliative care; Female; Attitude to Death; Attitude to Health; Narration; Switzerland; narrative; Leukemia/psychology; paediatric oncology; stories; lived experience; Oncologists; Bone Neoplasms/psychology; Sarcoma/psychology; Soft Tissue Neoplasms/psychology
Creator
An entity primarily responsible for making the resource
De CE; Elger BS; Wangmo T
Description
An account of the resource
Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this meaning-giving process interacts with cultural dominant stories on cancer and dying. The presented data come from 16 open-ended face-to-face interviews with palliative paediatric patients, their parents and physicians. The interviews were carried out in eight paediatric oncology centres in Switzerland. Data analysis followed Arthur Frank's dialogical narrative analysis. Quest narratives were relatively rare compared to both chaos and restitution stories. All participants welcomed chaos stories as a liminal haven between quest and restitution. The possibility that the child could die was either ignored or briefly contemplated, but then immediately pushed away. Except for one patient, children never directly addressed the topic of death. The way in which death was presented raises important questions about how the social discourse on dying is framed in terms of choice, autonomy and individuality. This discourse not only determines the way in which children and adults relate to the minor's death, it also constitutes an obstacle to children's participation in decision-making.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/%2010.1111/ecc.12651" target="_blank" rel="noreferrer noopener">10.1111/ecc.12651</a>
2017
Adolescent
Adult
Attitude To Death
Attitude To Health
Bone Neoplasms/psychology
Child
De CE
Disease Progression
Dying
Elger BS
European Journal Of Cancer Care
Female
Humans
Leukemia/psychology
lived experience
Male
Medical Oncology
Middle Aged
Narration
Narrative
Neoplasms/psychology
oncologists
Oncology 2018 List
Paediatric oncology
Palliative Care
Parents
Pediatrics
Qualitative Research
Sarcoma/psychology
Soft Tissue Neoplasms/psychology
Stories
Switzerland
Wangmo T
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1002/ajmg.a.32690" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ajmg.a.32690</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
Neuropsychological attention deficits in tuberous sclerosis complex (TSC)
Publisher
An entity responsible for making the resource available
American Journal of Medical Genetics Part A
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Male; Case-Control Studies; Child; Humans; Adolescent; Female; Neuropsychological Tests; Task Performance and Analysis; Attention Deficit Disorder with Hyperactivity/psychology; Tuberous Sclerosis/psychology; Tuberous Sclerosis; trajectory; characteristics; neuropsychological attention deficits; alertness
Creator
An entity primarily responsible for making the resource
de Vries P J; Gardiner J; Bolton P F
Description
An account of the resource
Tuberous sclerosis complex (TSC) (OMIM191100) is a genetic disorder with multi-system involvement including neurodevelopmental manifestations. There is great interest in understanding the pathogenetic mechanisms underlying these neurobehavioral and neurocognitive manifestations. However, there are still significant gaps in knowledge about the exact neuropsychiatric phenotypes observed in TSC. Here we report on the first systematic evaluation of neuropsychological attentional skills in a population-derived sample of children and adolescents with TSC. The study showed that, even when age, gender, IQ, and intra-familial clustering were controlled for, the TSC group had significantly lower scores than their unaffected siblings on a range of neuropsychological attentional tasks, and that they had significantly more neuropsychological attention deficits. Eighteen of the 20 children (90%) showed deficits on one or more attentional tasks, with dual task performance most consistently impaired (85%) and visual selective attention a relative strength. Active seizures and anti-epilepsy medication did not influence attentional profiles. Furthermore, parent rating of attention-related behaviors were not able to identify children at risk of neuropsychological deficits. The findings suggest that clinical neuropsychological evaluation of attentional skills should be performed in children and adolescents with TSC even when they have normal global intellectual abilities, no seizures, and no disruptive behaviors. Results suggest that the mechanisms underlying these deficits may include contributions from structural, seizure-related and molecular factors.
Identifier
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<a href="http://doi.org/10.1002/ajmg.a.32690" target="_blank" rel="noreferrer noopener">10.1002/ajmg.a.32690</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).
2009
Adolescent
alertness
American Journal of Medical Genetics Part A
Attention Deficit Disorder with Hyperactivity/psychology
Bolton P F
Case-Control Studies
characteristics
Child
de Vries P J
Female
Gardiner J
Humans
Male
neuropsychological attention deficits
Neuropsychological Tests
Task Performance and Analysis
Trajectory
Tuberous Sclerosis
Tuberous Sclerosis/psychology
-
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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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1111/j.1469-8749.2010.03636.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/j.1469-8749.2010.03636.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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Level of purposeful hand function as a marker of clinical severity in Rett syndrome
Publisher
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Developmental Medicine and Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Cross-Sectional Studies; Age Factors; Severity of Illness Index; Young Adult; Child; Humans; Adult; Adolescent; Female; Child Preschool; Phenotype; Video Recording; Mutation; Registries; Genotype; Motor Activity; Databases as Topic; Walking; Rett Syndrome; Methyl-CpG-Binding Protein 2; Hand; tone and motor problems; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Downs J; Bebbington A; Jacoby P; Williams A; Ghosh S; Kaufmann W E; Leonard H
Description
An account of the resource
AIM: We investigated relationships between hand function and genotype and aspects of phenotype in Rett syndrome. METHOD: Video assessment in naturalistic settings was supplemented by parent-reported data in a cross-sectional study of 144 females with a mean age of 14 years 10 months (SD 7 y 10 mo; range 2 y-31 y 10 mo), 110 of whom had a mutation of the methyl CpG binding protein 2 (MECP2) gene. Ordinal logistic regression was used to assess relationships between hand function and MECP2 mutation, age, a modified Kerr score, Functional Independence Measure for Children (WeeFIM), ambulation level, and frequency of hand stereotypies. RESULTS: Approximately two-thirds of participants demonstrated purposeful hand function, ranging from simple grasping skills to picking up and manipulating small objects. In participants with a confirmed MECP2 mutation, those with the p.R168X mutation had the poorest hand function on multivariate analysis with C-terminal deletion as the baseline (odds ratio [OR] 0.19; 95% confidence interval [CI] 0.04-0.95), whereas those with the p.R133C or p.R294X mutation had better hand function. Participants aged 19 years or older had lower hand function than those aged less than 8 years (OR 0.36; 95% CI 0.14-0.92). Factors that were associated with better hand function were lower Kerr scores for a 1-point increase in score (OR 0.77; 95% CI 0.69-0.86), higher WeeFIM scores for a 1-point increase in score (OR 1.08; 95% CI 1.04-1.12), and greater ambulation than those completely dependent on carers for mobility (OR 22.64; 95% CI 7.02-73.08). The results for participants with a confirmed pathogenic mutation were similar to results obtained when participants without a mutation were also included. INTERPRETATION: Our novel assessment of hand function in Rett syndrome correlated well with known profiles of common MECP2 mutations and overall clinical severity. This promising assessment could measure clinical responses to therapy.
Identifier
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<a href="http://doi.org/10.1111/j.1469-8749.2010.03636.x" target="_blank" rel="noreferrer noopener">10.1111/j.1469-8749.2010.03636.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).
2010
Adolescent
Adult
Age Factors
Bebbington A
characteristics
Child
Child Preschool
Cross-sectional Studies
Databases as Topic
Developmental Medicine and Child Neurology
Downs J
Female
Genotype
Ghosh S
Hand
Humans
Jacoby P
Kaufmann W E
Leonard H
Methyl-CpG-Binding Protein 2
Motor Activity
Mutation
Phenotype
Registries
Rett syndrome
Severity Of Illness Index
tone and motor problems
Trajectory
Video Recording
Walking
Williams A
Young Adult
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1111/dmcn.13398" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.13398</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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Quantification of walking-based physical activity and sedentary time in individuals with Rett syndrome
Publisher
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Developmental Medicine and Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
adolescent; major clinical study; data base; quantitative study; cross-sectional study; seizure; linear regression analysis; human; female; controlled study; adult; Rett syndrome; walking; model; scoliosis; wakefulness; tone and motor problems; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Downs J; Leonard H; Wong K; Newton N; Hill K
Description
An account of the resource
Aim: To quantify, in individuals with Rett syndrome with the capacity to walk, walking-based activity and sedentary time, and to analyse the influences of age, walking ability, scoliosis, and the severity of epilepsy. Method: Sixty-four participants with a mean age of 17 years and 7 months (standard deviation [SD] 9y) were recruited from the Australian Rett Syndrome Database for this cross-sectional study. Each participant wore a StepWatch Activity Monitor for at least 4 days. Linear regression models were used to assess relationships between daily step count and the proportion of waking hours spent in sedentary time with the covariates of age group, walking ability, presence of scoliosis, and frequency of seizures. Results: On average, 62% (SD 19%) of waking hours were sedentary and 20% (SD 8%) was at cadences lower than or equal to 20 steps in a minute. The median daily steps count was 5093 (interquartile range 2026-8602). Compared with females younger than 13 years of age and accounting for the effects of covariates, adults took fewer steps, and both adolescents and adults had more sedentary time. Interpretation: Adolescents and adults led the least active lives and would appear to be in particular need of interventions aiming to optimize slow walking-based physical activity and reduce sedentary time. Copyright © 2017 Mac Keith Press.
Identifier
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<a href="http://doi.org/10.1111/dmcn.13398" target="_blank" rel="noreferrer noopener">10.1111/dmcn.13398</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).
2017
Adolescent
Adult
characteristics
Controlled Study
Cross-sectional Study
Data Base
Developmental Medicine and Child Neurology
Downs J
Female
Hill K
Human
Leonard H
linear regression analysis
Major Clinical Study
Model
Newton N
Quantitative Study
Rett syndrome
scoliosis
Seizure
tone and motor problems
Trajectory
Wakefulness
Walking
Wong 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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March 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2021 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2020.29082" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2020.29082</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
Parent-Reported Symptoms and Medications Used Among Children With Severe Neurological Impairment
Publisher
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JAMA Network Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Infant; Child; Comorbidity; Female; Male; Child Preschool; Adolescence; Data Analysis Software; Human; Confidence Intervals; Descriptive Statistics; Record Review; Health Resource Utilization; Cross Sectional Studies; Funding Source; Scales; Severity of Illness; Central Nervous System Agents -- Therapeutic Use; Nervous System Diseases -- Epidemiology -- In Adolescence; Nervous System Diseases -- Epidemiology -- In Infancy and Childhood; Nervous System Diseases -- Symptoms; Peripheral Nervous System Agents -- Therapeutic Use; Polypharmacy
Creator
An entity primarily responsible for making the resource
Feinstein JA; Feudtner C; Blackmer AB; Valuck RJ; Fairclough DL; Holstein J; Gregoire LA; Samay S; Kempe A
Description
An account of the resource
Key Points: Question: In children with severe neurological impairment (SNI) who cannot self-report, can comprehensive parent-reported symptom assessments inform medication use? Findings: In this cross-sectional study of 100 children with SNI and polypharmacy, parents reported that children experienced multiple concurrent high-distress symptoms, notably irritability (65.0%), insomnia (55.0%), and pain (54.0%). Although higher symptom burdens were associated with increasing polypharmacy, opportunities existed to optimize pharmacotherapy; for example, among 54.0% of children with pain, only 61.0% were prescribed an analgesic. Meaning: Comprehensive parent-reported symptom data paired with medication data could help clinicians identify targets for personalized symptom management, including underrecognized or undertreated symptoms. This cross-sectional study examines whether higher global symptom scores are associated with use of more medications and assesses associations between specific symptoms and medications among children with severe neurological impairment. Importance: Children with severe neurological impairment (SNI) often take multiple medications to treat problematic symptoms. However, for children who cannot self-report symptoms, no system exists to assess multiple symptoms and their association with medication use. Objectives: To assess the prevalence of 28 distinct symptoms, test whether higher global symptom scores (GSS) were associated with use of more medications, and assess the associations between specific symptoms and medications. Design, Setting, and Participants: This cross-sectional study was conducted between April 1, 2019, and December 31, 2019, using structured parent-reported symptom data paired with clinical and pharmacy data, at a single-center, large, hospital-based special health care needs clinic. Participants included children aged 1 to 18 years with SNI and 5 or more prescribed medications. Data analysis was performed from April to June 2020. Exposure: During routine clinical visits, parent-reported symptoms were collected using the validated 28-symptom Memorial Symptom Assessment Scale (MSAS) and merged with clinical and pharmacy data. Main Outcomes and Measures: Symptom prevalence, counts, and GSS (scored 0-100, with 100 being the worst) were calculated, and the association of GSS with medications was examined. To evaluate associations between symptom-medication pairs, the proportion of patients with a symptom who used a medication class or specific medication was calculated. Results: Of 100 patients, 55.0% were boys, the median (interquartile range [IQR]) age was 9 (5-12) years, 62.0% had 3 or more complex chronic conditions, 76.0% took 10 or more medications, and none were able to complete the MSAS themselves. Parents reported a median (IQR) of 7 (4-10) concurrent active symptoms. The median (IQR) GSS was 12.1 (5.4-20.8) (range, 0.0-41.2) and the GSS was 9.8 points (95% CI, 5.5-14.1 points) higher for those with worse recent health than usual. Irritability (65.0%), insomnia (55.0%), and pain (54.0%) were the most prevalent symptoms. Each 10-point GSS increase was associated with 12% (95% CI, 4%-19%) higher medication counts, adjusted for age and complex chronic condition count. Among the 54.0% of children with reported pain, 61.0% were prescribed an analgesic. Conclusions and Relevance: These findings suggest that children with SNI reportedly experience substantial symptom burdens and that higher symptom scores are associated with increased medication use. Paired symptom-medication data may help clinicians identify targets for personalized symptom management, including underrecognized or undertreated symptoms.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jamanetworkopen.2020.29082" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.29082</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
Adolescence
Blackmer AB
Central Nervous System Agents -- Therapeutic Use
Child
Child Preschool
Comorbidity
Confidence Intervals
Cross Sectional Studies
Data Analysis Software
Descriptive Statistics
Fairclough DL
Feinstein JA
Female
Feudtner C
Funding Source
Gregoire LA
Health Resource Utilization
Holstein J
Human
Infant
JAMA Network Open
Kempe A
Male
March 2021 List
Nervous System Diseases -- Epidemiology -- In Adolescence
Nervous System Diseases -- Epidemiology -- In Infancy and Childhood
Nervous System Diseases -- Symptoms
Peripheral Nervous System Agents -- Therapeutic Use
Polypharmacy
Record Review
Samay S
scales
Severity of Illness
Valuck RJ
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1007/s10803-006-0293-9" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s10803-006-0293-9</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
Development of a video-based evaluation tool in Rett syndrome
Publisher
An entity responsible for making the resource available
Journal of Autism and Developmental Disorders
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Male; Diagnosis Differential; Child; Humans; Adult; Adolescent; Female; Phenotype; Feasibility Studies; Videotape Recording; Movement Disorders/diagnosis/etiology; Rett Syndrome/complications/diagnosis; feeding difficulties; tone and motor problems; Rett syndrome; tool development; scale development; filming and coding protocol
Creator
An entity primarily responsible for making the resource
Fyfe S; Downs J; McIlroy O; Burford B; Lister J; Reilly S; Laurvick C L; Philippe C; Msall M; Kaufmann W E; Ellaway C; Leonard H
Description
An account of the resource
This paper describes the development of a video-based evaluation tool for use in Rett syndrome (RTT). Components include a parent-report checklist, and video filming and coding protocols that contain items on eating, drinking, communication, hand function and movements, personal care and mobility. Ninety-seven of the 169 families who initially agreed to participate returned a videotape within 8 months of the first request. Subjects whose videos were returned had a similar age profile to those who did not provide a video but were more likely to have classical than atypical RTT. Evidence of the content and social validity and inter-rater reliability on 11 videos is provided. Video may provide detailed, objective assessment of function and behaviour in RTT.
Identifier
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<a href="http://doi.org/10.1007/s10803-006-0293-9" target="_blank" rel="noreferrer noopener">10.1007/s10803-006-0293-9</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).
2007
Adolescent
Adult
Burford B
Child
Diagnosis Differential
Downs J
Ellaway C
Feasibility Studies
feeding difficulties
Female
filming and coding protocol
Fyfe S
Humans
Journal of Autism and Developmental Disorders
Kaufmann W E
Laurvick C L
Leonard H
Lister J
Male
McIlroy O
Movement Disorders/diagnosis/etiology
Msall M
Phenotype
Philippe C
Reilly S
Rett syndrome
Rett Syndrome/complications/diagnosis
scale development
tone and motor problems
tool development
Videotape Recording
-
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
Special Edition #1 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1177/0030222818762190" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0030222818762190</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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Maternal Grief: A Qualitative Investigation of Mothers' Responses to the Death of a Child From Cancer
Publisher
An entity responsible for making the resource available
Omega
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Adaptation; Attitude to Death; Bereavement; Childhood Neoplasms – Mortality; Complicated Grief; Coping; Female; Grief; Interviews; Mothers – Psychosocial Factors; Phenomenological Research; Psychological; Qualitative Studies; Self Concept; Social Environment
Creator
An entity primarily responsible for making the resource
Gerrish NJ; Bailey S
Description
An account of the resource
This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13 mothers at two time points. Interpretative phenomenological analysis—guided by meaning-making theories of loss—revealed five master categories: the perceptions of the child's life with cancer and death from the disease, changed self-identity, coping style, developing an ongoing relationship to the deceased child, and the postdeath social environment. Each of these master categories and associated subthemes provided insights into the characteristics of the bereaved mothers' adaptive and complicated grief responses to their loss. Given all the mothers evidenced multiple forms or types of these responses over time, they could not be categorized as adaptive or complicated grievers. However, the varying proportions of each of these responses highlighted differences in overall bereavement adaptation.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0030222818762190" target="_blank" rel="noreferrer noopener">10.1177/0030222818762190</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
2022 Special Edition 1 - Parent Perspectives
Adaptation
Attitude To Death
Bailey S
Bereavement
Childhood Neoplasms – Mortality
Complicated Grief
Coping
Female
Gerrish NJ
Grief
Interviews
Mothers – Psychosocial Factors
Omega
Phenomenological Research
Psychological
Qualitative Studies
Self Concept
Social Environment
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1136/bmj.e6664" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmj.e6664</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
Melatonin for sleep problems in children with neurodevelopmental disorders: randomised double masked placebo controlled trial
Publisher
An entity responsible for making the resource available
British Medical Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Male; Treatment Outcome; Severity of Illness Index; Dose-Response Relationship Drug; Child; Humans; Adolescent; Family Health; Female; Child Preschool; Drug Monitoring; Child Behavior/drug effects; Melatonin/administration & dosage/adverse effects; Sleep Wake Disorders/diagnosis/drug therapy/etiology; Central Nervous System Depressants/administration & dosage/adverse effects; Central Nervous System Diseases/complications; Developmental Disabilities/complications; Polysomnography/methods; Sleep/drug effects; sleep disturbance/disorders; unspecified Q3 conditions; Q3 conditions; pharmacologic intervention; melatonin
Creator
An entity primarily responsible for making the resource
Gringras P; Gamble C; Jones A P; Wiggs L; Williamson P R; Sutcliffe A; Montgomery P; Whitehouse W P; Choonara I; Allport T; Edmond A; Appleton R
Description
An account of the resource
OBJECTIVE: To assess the effectiveness and safety of melatonin in treating severe sleep problems in children with neurodevelopmental disorders. DESIGN: 12 week double masked randomised placebo controlled phase III trial. SETTING: 19 hospitals across England and Wales. PARTICIPANTS: 146 children aged 3 years to 15 years 8 months were randomised. They had a range of neurological and developmental disorders and a severe sleep problem that had not responded to a standardised sleep behaviour advice booklet provided to parents four to six weeks before randomisation. A sleep problem was defined as the child not falling asleep within one hour of lights out or having less than six hours' continuous sleep. INTERVENTIONS: Immediate release melatonin or matching placebo capsules administered 45 minutes before the child's bedtime for a period of 12 weeks. All children started with a 0.5 mg capsule, which was increased through 2 mg, 6 mg, and 12 mg depending on their response to treatment. MAIN OUTCOME MEASURES: Total sleep time at night after 12 weeks adjusted for baseline recorded in sleep diaries completed by the parent. Secondary outcomes included sleep onset latency, assessments of child behaviour, family functioning, and adverse events. Sleep was measured with diaries and actigraphy. RESULTS: Melatonin increased total sleep time by 22.4 minutes (95% confidence interval 0.5 to 44.3 minutes) measured by sleep diaries (n=110) and 13.3 (-15.5 to 42.2) measured by actigraphy (n=59). Melatonin reduced sleep onset latency measured by sleep diaries (-37.5 minutes, -55.3 to -19.7 minutes) and actigraphy (-45.3 minutes, -68.8 to -21.9 minutes) and was most effective for children with the longest sleep latency (P=0.009). Melatonin was associated with earlier waking times than placebo (29.9 minutes, 13.6 to 46.3 minutes). Child behaviour and family functioning outcomes showed some improvement and favoured use of melatonin. Adverse events were mild and similar between the two groups. CONCLUSIONS: Children gained little additional sleep on melatonin; though they fell asleep significantly faster, waking times became earlier. Child behaviour and family functioning outcomes did not significantly improve. Melatonin was tolerable over this three month period. Comparisons with slow release melatonin preparations or melatonin analogues are required. TRIAL REGISTRATION: ISRCT No 05534585.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmj.e6664" target="_blank" rel="noreferrer noopener">10.1136/bmj.e6664</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).
2012
Adolescent
Allport T
Appleton R
British Medical Journal
Central Nervous System Depressants/administration & dosage/adverse effects
Central Nervous System Diseases/complications
Child
Child Preschool
Child Behavior/drug effects
Choonara I
Developmental Disabilities/complications
Dose-Response Relationship Drug
Drug Monitoring
Edmond A
Family Health
Female
Gamble C
Gringras P
Humans
Jones A P
Male
melatonin
Melatonin/administration & dosage/adverse effects
Montgomery P
pharmacologic intervention
Polysomnography/methods
Q3 conditions
Severity Of Illness Index
sleep disturbance/disorders
Sleep Wake Disorders/diagnosis/drug therapy/etiology
Sleep/drug effects
Sutcliffe A
Treatment Outcome
unspecified Q3 conditions
Whitehouse W P
Wiggs L
Williamson P R
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1111/j.1365-2788.2008.01047.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/j.1365-2788.2008.01047.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
Health and sleep problems in Cornelia de Lange Syndrome: a case control study
Publisher
An entity responsible for making the resource available
Journal of Intellectual Disability Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Male; Severity of Illness Index; Case-Control Studies; Comorbidity; Surveys and Questionnaires; Humans; Adolescent; Prevalence; Female; Health Status; De Lange Syndrome/epidemiology/psychology; Ear Diseases/epidemiology/psychology; Eye Diseases/epidemiology/psychology; Gastrointestinal Diseases/epidemiology/psychology; Hernia/epidemiology/psychology; Intellectual Disability/epidemiology/psychology; Self-Injurious Behavior/epidemiology/psychology; Skin Diseases/epidemiology/psychology; Sleep Wake Disorders/epidemiology; Stomatognathic Diseases/epidemiology/psychology; behavioral problems; sleep disturbance; De Lange syndrome; trajectory; characteristics; self-injury
Creator
An entity primarily responsible for making the resource
Hall S; Arron K; Sloneem J; Oliver C
Description
An account of the resource
BACKGROUND: Self-injury, sleep problems and health problems are commonly reported in Cornelia de Lange Syndrome (CdLS) but there are no comparisons with appropriately matched participants. The relationship between these areas and comparison to a control group is warranted. METHOD: 54 individuals with CdLS were compared with 46 participants with intellectual disability (ID) of mixed aetiology who were similar in terms of degree of ID, mobility, age and gender using informant-based measures of health problems, sleep and self-injury. RESULTS: Participants with CdLS experienced significantly more current and lifetime health problems with eye problems and gastrointestinal disorders prominent. Although 55% of those with CdLS experienced sleep problems this prevalence was not different from the comparison group. Sleep disorder was not associated with self-injury in the CdLS group, skin problems were associated with severity of self-injury but not presence. DISCUSSION: People with CdLS experience a range of significant health problems and have more health concerns than others with the same degree of ID. Although this has been well documented in the past, the current high prevalence of health concerns indicates the need for regular health assessment and appropriate intervention.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1365-2788.2008.01047.x" target="_blank" rel="noreferrer noopener">10.1111/j.1365-2788.2008.01047.x</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2008
Adolescent
Arron K
behavioral problems
Case-Control Studies
characteristics
Comorbidity
De Lange syndrome
De Lange Syndrome/epidemiology/psychology
Ear Diseases/epidemiology/psychology
Eye Diseases/epidemiology/psychology
Female
Gastrointestinal Diseases/epidemiology/psychology
Hall S
Health Status
Hernia/epidemiology/psychology
Humans
Intellectual Disability/epidemiology/psychology
Journal Of Intellectual Disability Research
Male
Oliver C
Prevalence
Self-Injurious Behavior/epidemiology/psychology
self-injury
Severity Of Illness Index
Skin Diseases/epidemiology/psychology
sleep disturbance
Sleep Wake Disorders/epidemiology
Sloneem J
Stomatognathic Diseases/epidemiology/psychology
Surveys And Questionnaires
Trajectory
-
Dublin Core
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Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1006/mgme.1999.2815" target="_blank" rel="noreferrer noopener">http://doi.org/10.1006/mgme.1999.2815</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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Melatonin ineffective in neuronal ceroid lipofuscinosis patients with fragmented or normal motor activity rhythms recorded by wrist actigraphy
Publisher
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Molecular Genetics and Metabolism
Date
A point or period of time associated with an event in the lifecycle of the resource
1999
Subject
The topic of the resource
Adolescent; Adult; Antioxidants/tu [Therapeutic Use]; Child; Circadian Rhythm; Dose-Response Relationship; Drug Electrophysiology; Female; Humans; Male; Melatonin/tu [Therapeutic Use]; Neuronal Ceroid-Lipofuscinoses/dt [Drug Therapy]; Sleep Wake Disorders/th [Therapy]; 0 (Antioxidants); JL5DK93RCL (Melatonin); sleep disturbance/disorders; NCL3; pharmacologic intervention; melatonin
Creator
An entity primarily responsible for making the resource
Hätönen T; Kirveskari E; Heiskala H; Sainio K; Laakso M L; Santavuori P
Description
An account of the resource
Melatonin was tested as a sleeping pill in five patients with neuronal ceroid lipofuscinoses. The single-blind, placebo-controlled study consisted of motor activity recordings, sleep logs, and administration of placebo or melatonin (2.5 or 5 mg). Daily motor activity rhythms were measured by wrist actigraphy during four 7-day periods (baseline, placebo, melatonin 2.5 mg, and melatonin 5 mg). The placebo or melatonin was administered in the evenings for 3 weeks, and the recordings were made during the last week of the 3-week treatment. Sleep logs were kept by the caregivers during the recordings. Based on period analyses, the activity recordings were evaluated to display a normal (24-h) or fragmented rhythm. Three patients had normal motor activity patterns during the baseline recordings, and administration of placebo or melatonin did not affect their rest/activity rhythms. Two patients had abnormally fragmented activity rhythms during the baseline periods, and administration of placebo or melatonin did not induce synchronization. According to the actigraphic data, there were no changes in activity rhythms resulting from administration of melatonin. However, based on the observations, three families reported that melatonin slightly improved the sleep quality of the patients. These controversial findings show the difficulties involved in specifying the role of melatonin in modulating sleep. Thus, we conclude that more evidence is required before the significance of melatonin as a sleeping pill is defined.Copyright 1999 Academic Press.
Identifier
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<a href="http://doi.org/10.1006/mgme.1999.2815" target="_blank" rel="noreferrer noopener">10.1006/mgme.1999.2815</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).
0 (Antioxidants)
1999
Adolescent
Adult
Antioxidants/tu [Therapeutic Use]
Child
Circadian Rhythm
Dose-Response Relationship
Drug Electrophysiology
Female
Hätönen T
Heiskala H
Humans
JL5DK93RCL (Melatonin)
Kirveskari E
Laakso M L
Male
melatonin
Melatonin/tu [Therapeutic Use]
Molecular Genetics and Metabolism
NCL3
Neuronal Ceroid-Lipofuscinoses/dt [Drug Therapy]
pharmacologic intervention
Sainio K
Santavuori P
sleep disturbance/disorders
Sleep Wake Disorders/th [Therapy]
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1111/j.1525-1470.1997.tb00991.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/j.1525-1470.1997.tb00991.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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Constipation in epidermolysis bullosa: successful treatment with a liquid fiber-containing formula
Publisher
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Pediatric Dermatology
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Adolescent Child; Child; Formulated; Humans; Male; Preschool; Constipation/co [Complications]; Constipation/th [Therapy]; Epidermolysis Bullosa/co [Complications]; Female; Food; constipation; Epidermolysis Bullosa; pharmacologic intervention; fiber-containing liquid formula Enrich
Creator
An entity primarily responsible for making the resource
Haynes L; Atherton D; Clayden G
Description
An account of the resource
In epidermolysis bullosa (EB), chronic constipation, painful defecation, and fecal impaction frequently contribute to malnutrition and growth failure. Standard treatments for constipation, such as increased intake of conventional dietary fiber and fluids and/or the use of laxatives and stool softeners, are largely unsuccessful. We evaluated by questionnaire the use of a fiber-containing liquid formula (Enrich) in 20 chronically constipated children with dystrophic EB. All derived substantial improvement in constipation when taking 250 to 750 ml Enrich per day. We recommend that such a fiber-containing food be prescribed for chronic constipation in EB. In cases of fecal impaction, this should be preceded by bowel cleansing.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1525-1470.1997.tb00991.x" target="_blank" rel="noreferrer noopener">10.1111/j.1525-1470.1997.tb00991.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).
1997
Adolescent Child
Atherton D
Child
Clayden G
Constipation
Constipation/co [Complications]
Constipation/th [Therapy]
epidermolysis bullosa
Epidermolysis Bullosa/co [Complications]
Female
fiber-containing liquid formula Enrich
Food
Formulated
Haynes L
Humans
Male
Pediatric Dermatology
pharmacologic intervention
Preschool
-
Dublin Core
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Title
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2018 Oncology List
Text
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Citation List Month
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1007/s00520-018-4190-5" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1007/s00520-018-4190-5</a>
Dublin Core
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Title
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The codesign of an interdisciplinary team-based intervention regarding initiating palliative care in pediatric oncology
Publisher
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Supportive Care in Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
feasibility study; palliative therapy; childhood cancer; solid malignant neoplasm; human; article; child; female; male; clinical article; bone marrow transplantation; uncertainty; frustration
Creator
An entity primarily responsible for making the resource
Hill DL; Walter JK; Casas JA; DiDomenico C; Szymczak JE; Feudtner C
Description
An account of the resource
Purpose: Children with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the child's death. The goals of the current project were to learn about pediatric oncology team members' perspectives on palliative care, to collaborate with team members to modify and tailor three separate interdisciplinary team-based interventions regarding initiating palliative care, and to assess the feasibility of this collaborative approach. Methods: We used a modified version of experience-based codesign (EBCD) involving members of the pediatric palliative care team and three interdisciplinary pediatric oncology teams (Bone Marrow Transplant, Neuro-Oncology, and Solid Tumor) to review and tailor materials for three team-based interventions. Eleven pediatric oncology team members participated in four codesign sessions to discuss their experiences with initiating palliative care and to review the proposed intervention including patient case studies, techniques for managing uncertainty and negative emotions, role ambiguity, system-level barriers, and team communication and collaboration. Results: The codesign process showed that the participants were strong supporters of palliative care, members of different teams had preferences for different materials that would be appropriate for their teams, and that while participants reported frustration with timing of palliative care, they had difficulty suggesting how to change current practices. Conclusions: The current project demonstrated the feasibility of collaborating with pediatric oncology clinicians to develop interventions about introducing palliative care. The procedures and results of this project will be posted online so that other institutions can use them as a model for developing similar interventions appropriate for their needs.
Identifier
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<a href="http://doi.org/%2010.1007/s00520-018-4190-5" target="_blank" rel="noreferrer noopener">10.1007/s00520-018-4190-5</a>
2018
Article
Bone Marrow Transplantation
Casas JA
Child
Childhood Cancer
Clinical Article
DiDomenico C
Feasibility Study
Female
Feudtner C
frustration
Hill DL
Human
Male
Oncology 2018 List
Palliative Therapy
solid malignant neoplasm
Supportive Care In Cancer
Szymczak JE
Uncertainty
Walter JK
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1016/0887-8994(93)90082-n" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/0887-8994(93)90082-n</a>
Dublin Core
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Title
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Prospective study of spinal muscular atrophy before age 6 years. DCN/SMA Group
Publisher
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Pediatric Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
1993
Subject
The topic of the resource
Male; Child; Humans; Prospective Studies; Female; Child Preschool; Infant; Neurologic Examination; Motor Skills/physiology; Muscle Contraction/physiology; Range of Motion Articular/physiology; Reflex Stretch/physiology; Spinal Muscular Atrophies of Childhood/diagnosis/physiopathology; Sucking Behavior/physiology; tone and motor problems; SMA1; trajectory; characteristics; tongue fasciculation; facial weakness
Creator
An entity primarily responsible for making the resource
Iannaccone S T; Browne R H; Samaha F J; Buncher C R
Description
An account of the resource
Spinal muscular atrophy (SMA) is a common neuromuscular disorder of childhood, associated with a high mortality rate during the first 2 years of life. Most practitioners expect patients with SMA to follow a progressive course with loss of muscle strength and function over 2-10 years. Counselling sessions with parents frequently emphasize the high mortality rate and risk for respiratory failure. The progressive nature of SMA has been attributed to the loss of motor neurons. Fifty-eight children, ages 6 years and younger, were examined between January, 1987, and April, 1992, as part of a large, multicenter collaborative study of SMA. Muscle function was evaluated at regular intervals using a standardized protocol that was demonstrated to be reliable. We determined a prevalence of 56% for tongue fasciculations, a prevalence of 22% for facial weakness, and persistent deep tendon reflexes in one patient. Improved motor function and acquired milestones during the study were documented. This work should contribute toward a better understanding of the natural history of SMA.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/0887-8994(93)90082-n" target="_blank" rel="noreferrer noopener">10.1016/0887-8994(93)90082-n</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).
1993
Browne R H
Buncher C R
characteristics
Child
Child Preschool
facial weakness
Female
Humans
Iannaccone S T
Infant
Male
Motor Skills/physiology
Muscle Contraction/physiology
Neurologic Examination
Pediatric Neurology
Prospective Studies
Range of Motion Articular/physiology
Reflex Stretch/physiology
Samaha F J
SMA1
Spinal Muscular Atrophies of Childhood/diagnosis/physiopathology
Sucking Behavior/physiology
tone and motor problems
tongue fasciculation
Trajectory
-
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
Special Edition #1 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0303" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0303</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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Lasting Legacy: Maternal Perspectives of Perinatal Palliative 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
2019
Subject
The topic of the resource
Female; Fetal mortality; hospice; Infant; mothers; Newborn; palliative care; perinatal; Perinatal Care organization & administration; prenatal; Prenatal Diagnosis; Retrospective Studies
Creator
An entity primarily responsible for making the resource
Kamrath HJ; Osterholm E; Stover-Haney R; George T; O'Connor-Von S; Needle J
Description
An account of the resource
BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing infant interaction with the health care system and by gaining deeper understanding of the maternal experience after being offered perinatal palliative care. METHODS: The study was conducted at a public university-based medical center in the Midwest. Phase 1 consisted of a retrospective review of electronic medical records of 27 mother-infant pairs offered perinatal palliative care, 18 of whom elected to develop a perinatal palliative care. Phase 2 consisted of a focus group and interviews of seven of the mothers. RESULTS: In the initial phase of this study, results revealed differences regarding the infant's end-of-life trajectory, including location of death, number of invasive procedures, and death in the setting of withholding versus withdrawing life-sustaining treatment. Highlighting that without a perinatal palliative care plan in place, the default treatment for infants with prenatally diagnosed life-limiting conditions is likely to be invasive and painful with often times minimal likelihood of long-term survival. Analysis of interview and focus group data revealed three themes: care, choice, and legacy. CONCLUSION: The authors used their experience with the health care system to draw implications for practice from the focus group and interview data, which care can serve to promote women feeling cared for and cared about, as well as promote opportunities for hope during a fragile pregnancy.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2018.0303" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0303</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).
2019
2022 Special Edition 1 - Parent Perspectives
Female
Fetal Mortality
George T
Hospice
Infant
Journal of Palliative Medicine
Kamrath HJ
Mothers
Needle J
Newborn
O'Connor-Von S
Osterholm E
Palliative Care
Perinatal
Perinatal Care organization & administration
prenatal
Prenatal Diagnosis
Retrospective Studies
Stover-Haney R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2021 List
URL Address
<a href="http://doi.org/10.1093/ajcn/nqaa142" target="_blank" rel="noreferrer noopener">http://doi.org/10.1093/ajcn/nqaa142</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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Use of standardized body composition measurements and malnutrition screening tools to detect malnutrition risk and predict clinical outcomes in children with chronic conditions
Publisher
An entity responsible for making the resource available
American Journal of Clinical Nutrition
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Adolescent; Child; Female; Humans; Male; Risk Factors; Child Preschool; Anthropometry; Chronic Disease; screening; Child Development; pediatric patients; body composition; Body Composition; clinical outcomes; malnutrition; nutritional risk; Child Nutrition Disorders/diagnosis
Creator
An entity primarily responsible for making the resource
Lara-Pompa NE; Hill S; Williams J; Macdonald S; Fawbert K; Valente J; Kennedy K; Shaw V; Wells JC; Fewtrell M
Description
An account of the resource
BACKGROUND: Better tools are needed to diagnose and identify children at risk of clinical malnutrition. OBJECTIVES: We aimed to compare body composition (BC) and malnutrition screening tools (MSTs) for detecting malnutrition on admission; and examine their ability to predict adverse clinical outcomes [increased length of stay (LOS) and complications] in complex pediatric patients. METHODS: This was a prospective study in children 5-18 y old admitted to a tertiary pediatric hospital (n = 152). MSTs [Pediatric Yorkhill Malnutrition Score (PYMS), Screening Tool for the Assessment of Malnutrition in Pediatrics (STAMP), and Screening Tool for Risk of Impaired Nutritional Status and Growth (STRONGkids)] were completed on admission. Weight, height, and BC [fat mass (FM) and lean mass (LM) by DXA] were measured (n = 118). Anthropometry/BC and MSTs were compared with each other and with clinical outcomes. RESULTS: Subjects were significantly shorter with low LM compared to reference data. Depending on the diagnostic criteria used, 3%-17% were classified as malnourished. Agreement between BC/anthropometric parameters and MSTs was poor. STAMP and STRONGkids identified children with low weight, LM, and height. PYMS, and to a lesser degree STRONGkids, identified children with increased LOS, as did LM compared with weight or height. Patients with complications had lower mean ± SD LM SD scores (-1.38 ± 1.03 compared with -0.74 ± 1.40, P < 0.05). In multivariable models, PYMS high risk and low LM were independent predictors of increased LOS (OR: 3.76; 95% CI: 1.36, 10.35 and OR: 3.69; 95% CI: 1.24, 10.98, respectively). BMI did not predict increased LOS or complications. CONCLUSIONS: LM appears better than weight and height for predicting adverse clinical outcomes in this population. BMI was a poor diagnostic parameter. MSTs performed differently in associations to BC/anthropometry and clinical outcomes. PYMS and LM provided complementary information regarding LOS. Studies on specific patient populations may further clarify the use of these tools and measurements.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/ajcn/nqaa142" target="_blank" rel="noreferrer noopener">10.1093/ajcn/nqaa142</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
Adolescent
American Journal of Clinical Nutrition
Anthropometry
Body Composition
Child
Child Preschool
Child Development
Child Nutrition Disorders/diagnosis
Chronic Disease
Clinical outcomes
Fawbert K
Female
Fewtrell M
Hill S
Humans
Kennedy K
Lara-Pompa NE
Macdonald S
Male
malnutrition
March 2021 List
nutritional risk
pediatric patients
Risk Factors
Screening
Shaw V
Valente J
Wells JC
Williams J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
December 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
December 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909117743181" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1177/1049909117743181</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Children With Intellectual Disability and Hospice Utilization: The Moderating Effect of Residential Care
Publisher
An entity responsible for making the resource available
The American journal of hospice & palliative care
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
United States; hospice care; California; terminal care; hospital admission; organization and management; long term care; human; child; female; male; statistics and numerical data; utilization; intellectual impairment/th [Therapy]; medicaid; patient preference
Creator
An entity primarily responsible for making the resource
Lindley LC
Description
An account of the resource
BACKGROUND: Children with intellectual disability commonly lack access to pediatric hospice care services. Residential care may be a critical component in providing access to hospice care for children with intellectual disability. OBJECTIVE/HYPOTHESIS: This research tested whether residential care intensifies the relationship between intellectual disability and hospice utilization (ie, hospice enrollment, hospice length of stay), while controlling for demographic characteristics. METHODS: Multivariate regression analyses were conducted using 2008 to 2010 California Medicaid claims data. RESULTS: The odds of children with intellectual disability in residential care enrolling in hospice care were 3 times higher than their counterparts in their last year of life, when controlling for demographics. Residential care promoted hospice enrollment among children with intellectual disability. The interaction between intellectual disability and residential care was not related to hospice length of stay. Residential care did not attenuate or intensify the relationship between intellectual disability and hospice length of stay. CONCLUSIONS: The findings highlight the important role of residential care in facilitating hospice enrollment for children with intellectual disability. More research is needed to understand the capability of residential care staff to identify children with intellectual disability earlier in their end-of-life trajectory and initiate longer hospice length of stays.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909117743181" target="_blank" rel="noreferrer noopener">10.1177/1049909117743181</a>
2018
California
Child
December 2018 List
Female
Hospice Care
Hospital Admission
Human
intellectual impairment/th [Therapy]
Lindley LC
Long Term Care
Male
Medicaid
Organization And Management
Patient Preference
Statistics And Numerical Data
Terminal Care
The American Journal of Hospice & Palliative Care
United States
utilization
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1371/journal.pone.0084128" target="_blank" rel="noreferrer noopener">http://doi.org/10.1371/journal.pone.0084128</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
Assessment of sleep in children with mucopolysaccharidosis type III
Publisher
An entity responsible for making the resource available
PLoS ONE
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Actigraphy; Adolescent; Case-Control Studies; Child; Preschool; Female; Humans; Male; Melatonin/me [Metabolism]; Mucopolysaccharidosis III/pp [Physiopathology]; Sleep/ph [Physiology]; Time Factors; JL5DK93RCL (Melatonin); sleep disturbance/disorders; MPSIIIA; MPSIIIB; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Mahon L V; Lomax M; Grant S; Cross E; Hare D J; Wraith J E; Jones S; Bigger B; Langford-Smith K; Canal M
Description
An account of the resource
Sleep disturbances are prevalent in mucopolysaccharidosis Type III (MPS III), yet there is a lack of objective, ecologically valid evidence detailing sleep quantity, quality or circadian system. Eight children with MPS III and eight age-matched typically developing children wore an actigraph for 7-10 days/nights. Saliva samples were collected at three time-points on two separate days, to permit analysis of endogenous melatonin levels. Parents completed a sleep questionnaire and a daily sleep diary. Actigraphic data revealed that children with MPS III had significantly longer sleep onset latencies and greater daytime sleep compared to controls, but night-time sleep duration did not differ between groups. In the MPS III group, sleep efficiency declined, and sleep onset latency increased, with age. Questionnaire responses showed that MPS III patients had significantly more sleep difficulties in all domains compared to controls. Melatonin concentrations showed an alteration in the circadian system in MPS III, which suggests that treatment for sleep problems should attempt to synchronise the sleep-wake cycle to a more regular pattern. Actigraphy was tolerated by children and this monitoring device can be recommended as a measure of treatment success in research and clinical practice.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1371/journal.pone.0084128" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0084128</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).
2014
Actigraphy
Adolescent
Bigger B
Canal M
Case-Control Studies
characteristics
Child
Cross E
Female
Grant S
Hare D J
Humans
JL5DK93RCL (Melatonin)
Jones S
Langford-Smith K
Lomax M
Mahon L V
Male
Melatonin/me [Metabolism]
MPSIIIA
MPSIIIB
Mucopolysaccharidosis III/pp [Physiopathology]
PLoS One
Preschool
sleep disturbance/disorders
Sleep/ph [Physiology]
Time Factors
Trajectory
Wraith J E
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2021 List
URL Address
<a href="http://doi.org/10.1093/jpepsy/jsz098" target="_blank" rel="noreferrer noopener">http://doi.org/10.1093/jpepsy/jsz098</a>
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Title
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Caregiver-Child Discrepancies in Reports of Child Emotional Symptoms in Pediatric Chronic Pain
Publisher
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Journal of Pediatric Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
children; Child; Female; Humans; Male; Emotions; Quality of Life; depression; Caregivers; Pain Measurement; Chronic Pain; Depression; anxiety; Anxiety/epidemiology; parents; chronic and recurrent pain; informant discrepancies
Creator
An entity primarily responsible for making the resource
Martin SR; Zeltzer LK; Seidman LC; Allyn KE; Payne LA
Description
An account of the resource
OBJECTIVE: Pediatric chronic pain evaluation includes self-reports and/or caregiver proxy-reports across biopsychosocial domains. Limited data exist on the effects of caregiver-child discrepancies in pediatric pain assessment. In children with chronic pain, we examined associations among discrepancies in caregiver-child reports of child anxiety and depressive symptoms and child functional impairment. METHODS: Participants were 202 children (Mage=14.49 ± 2.38 years; 68.8% female) with chronic pain and their caregivers (95.5% female). Children and caregivers completed the Revised Child Anxiety and Depression Scale (RCADS) and RCADS-Parent, respectively. Children also completed the Functional Disability Inventory. Mean difference tests examined caregiver-child discrepancies. Moderation analyses examined whether associations between child self-reported anxiety and depressive symptoms and functional impairment varied as a function of caregiver proxy-report. RESULTS: Children reported more anxiety and depressive symptoms compared with their caregivers' proxy-reports (Z = -4.83, p < .001). Both informants' reports of child anxiety and depressive symptoms were associated with child functional impairment (rs = .44, rs = .30, p < .001). Caregiver proxy-report moderated associations between child-reported anxiety and depressive symptoms and functional impairment (B = -0.007, p = .003). When caregiver proxy-report was low, child self-reported anxiety and depressive symptoms were positively related to functional impairment (B = 0.28, SE = 0.07, 95% CI [0.15, 0.41], p < .001). CONCLUSIONS: Discrepant caregiver-child perceptions of child anxiety and depressive symptoms may be associated with functioning in children with chronic pain, especially when caregivers report less child internalizing symptoms. These findings highlight the need for further examination of the effects of caregiver-child discrepancies on pediatric chronic pain outcomes and may indicate targets for intervention.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/jpepsy/jsz098" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsz098</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
Allyn KE
anxiety
Anxiety/epidemiology
April 2021 List
Caregivers
Child
Children
chronic and recurrent pain
Chronic Pain
Depression
Emotions
Female
Humans
informant discrepancies
Journal of Pediatric Psychology
Male
Martin SR
Pain Measurement
Parents
Payne LA
Quality Of Life
Seidman LC
Zeltzer LK
-
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
Special Edition #2 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Special Edition #2
URL Address
<a href="http://doi.org/10.1177/0969733019878838" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0969733019878838</a>
Dublin Core
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Title
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Parent moral distress in serious pediatric illness: A dimensional analysis
Publisher
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Nursing Ethics
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; Critical Illness; Ethics of care; Female; Humans; Male; moral distress; neonatal care; palliative care; Parents; pediatric practice; Stress
Creator
An entity primarily responsible for making the resource
Mooney-Doyle K; Ulrich CM
Description
An account of the resource
BACKGROUND: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. OBJECTIVE: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. DESIGN AND METHODS: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child's serious illness. ETHICAL CONSIDERATIONS: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author's IRB approved study at the Children's Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors' clinical experiences. FINDINGS: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child's illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society. DISCUSSION: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness. CONCLUSION: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0969733019878838" target="_blank" rel="noreferrer noopener">10.1177/0969733019878838</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
2022 Special Edition 2 - Parent Perspectives
Child
Critical Illness
Ethics of Care
Female
Humans
Male
Mooney-Doyle K
Moral Distress
Neonatal Care
Nursing Ethics
Palliative Care
Parents
pediatric practice
Stress
Ulrich CM
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1007/s10803-008-0655-6" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s10803-008-0655-6</a>
Dublin Core
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Title
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The prevalence and phenomenology of repetitive behavior in genetic syndromes
Publisher
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Journal of Autism and Developmental Disorders
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Middle Aged; Male; Young Adult; Surveys and Questionnaires; Child; Humans; Adult; Adolescent; Prevalence; Female; Child Preschool; Phenotype; Syndrome; London; Stereotyped Behavior; Angelman Syndrome/epidemiology/psychology; Cri-du-Chat Syndrome/epidemiology/psychology; De Lange Syndrome/epidemiology/psychology; Fragile X Syndrome/epidemiology/psychology; Intellectual Disability/epidemiology/genetics/psychology; Prader-Willi Syndrome/epidemiology/psychology; behavioral problems; tone and motor problems; cri-du-chat; De Lange syndrome; trajectory; characteristics; repetitive behavior
Creator
An entity primarily responsible for making the resource
Moss J; Oliver C; Arron K; Burbidge C; Berg K
Description
An account of the resource
We investigated the prevalence and phenomenology of repetitive behavior in genetic syndromes to detail profiles of behavior. The Repetitive Behaviour Questionnaire (RBQ) provides fine-grained identification of repetitive behaviors. The RBQ was employed to examine repetitive behavior in Angelman (N = 104), Cornelia de Lange (N = 101), Cri-du-Chat (N = 58), Fragile X (N = 191), Prader-Willi (N = 189), Lowe (N = 56) and Smith-Magenis (N = 42) syndromes and individuals with intellectual disability of heterogeneous aetiology (N = 56). Repetitive behavior was variable across syndromes. Fragile X syndrome scored highly on all subscales. Angelman syndrome demonstrated a significantly lowered probability for most behaviors. Prader-Willi, Cri-du-Chat and Smith-Magenis syndrome evidenced unique profiles of repetitive behavior. There is extreme heterogeneity of repetitive behavior across genetic syndromes, highlighting syndrome specific profiles.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s10803-008-0655-6" target="_blank" rel="noreferrer noopener">10.1007/s10803-008-0655-6</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2009
Adolescent
Adult
Angelman Syndrome/epidemiology/psychology
Arron K
behavioral problems
Berg K
Burbidge C
characteristics
Child
Child Preschool
Cri-du-chat
Cri-du-Chat Syndrome/epidemiology/psychology
De Lange syndrome
De Lange Syndrome/epidemiology/psychology
Female
Fragile X Syndrome/epidemiology/psychology
Humans
Intellectual Disability/epidemiology/genetics/psychology
Journal of Autism and Developmental Disorders
London
Male
Middle Aged
Moss J
Oliver C
Phenotype
Prader-Willi Syndrome/epidemiology/psychology
Prevalence
repetitive behavior
Stereotyped Behavior
Surveys And Questionnaires
Syndrome
tone and motor problems
Trajectory
Young Adult
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1111/j.1365-2788.2005.00649.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/j.1365-2788.2005.00649.x</a>
Dublin Core
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Title
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The association between environmental events and self-injurious behaviour in Cornelia de Lange syndrome
Publisher
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Journal of Intellectual Disability Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Adolescent Child; Child; Preschool; De Lange Syndrome/ep [Epidemiology]; Environment; Female; Humans; Male; Self-Injurious Behavior/di [Diagnosis]; Self-Injurious Behavior/ep [Epidemiology]; Self-Injurious Behavior/px [Psychology]; Severity of Illness Index; behavioral problems; De Lange syndrome; trajectory; characteristics; self-injurious behavior
Creator
An entity primarily responsible for making the resource
Moss J; Oliver C; Hall S; Arron K; Sloneem J; Petty J
Description
An account of the resource
BACKGROUND: There has been limited empirical research into the environmental causes of self-injury in Cornelia de Lange syndrome. The present study examined the variability of self-injurious behaviour in Cornelia de Lange syndrome across environmental setting events. Additionally, the association between setting events and more specific environmental events was examined. METHOD: A descriptive analysis of observational data on eight children with Cornelia de Lange syndrome aged between 4 and 14 years was carried out. The association between self-injurious behaviour and four environmental setting events and between specific environmental events and setting events was examined using established statistical methods for observational data. RESULTS: Seven out of eight of the participants showed at least one form of self-injurious behaviour that was associated with a particular setting event. The study also demonstrated that the relationship between setting events and environmental events is extremely variable across individuals. CONCLUSIONS: Self-injurious behaviour in some individuals with Cornelia de Lange syndrome is associated with environmental events although the precise nature of the association warrants clarification. Using broad setting events as a methodological tool in isolation provides some insight into the role of specific environmental factors in maintaining self-injurious behaviour but the integrity of setting events must be established.
Identifier
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<a href="http://doi.org/10.1111/j.1365-2788.2005.00649.x" target="_blank" rel="noreferrer noopener">10.1111/j.1365-2788.2005.00649.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).
2005
Adolescent Child
Arron K
behavioral problems
characteristics
Child
De Lange syndrome
De Lange Syndrome/ep [Epidemiology]
Environment
Female
Hall S
Humans
Journal Of Intellectual Disability Research
Male
Moss J
Oliver C
Petty J
Preschool
Self-Injurious behavior
Self-Injurious Behavior/di [Diagnosis]
Self-Injurious Behavior/ep [Epidemiology]
Self-Injurious Behavior/px [Psychology]
Severity Of Illness Index
Sloneem J
Trajectory
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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March 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2021 List
URL Address
<a href="http://doi.org/10.1002/ppul.24923" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ppul.24923</a>
Dublin Core
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Title
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Healthcare utilization and costs of pediatric home mechanical ventilation in Canada
Publisher
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Pediatric Pulmonology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Adult; Child; Female; Humans; Male; Child Preschool; Middle Aged; Quality of Life; Longitudinal Studies; Canada; Prospective Studies; pediatrics; Health Care Costs; Health Expenditures; Patient Acceptance of Health Care; Tracheostomy; healthcare costs; healthcare utilization; home mechanical ventilation; long-term mechanical ventilation; ventilator assisted individual; Ambulatory Care/economics; Caregivers/economics; Home Care Services/economics; Respiration Artificial/economics
Creator
An entity primarily responsible for making the resource
Nonoyama ML; Katz SL; Amin R; McKim DA; Guerriere D; Coyte PC; Wasilewski M; Zagorski B; Rose L
Description
An account of the resource
BACKGROUND: Children using home mechanical ventilation (HMV) live at home with better quality of life, despite financial burden for their family. Previous studies of healthcare utilization and costs have not considered public and private expenditures, including family caregiver time. Our objective was to examine public and private healthcare utilization and costs for children using HMV, and variables associated with highest costs. METHODS: Longitudinal, prospective, observational cost analysis study (2012-2014) collecting data on public and private (out-of-pocket, third-party insurance, and caregiving) costs every 2 weeks for 6 months using the Ambulatory Home Care Record. Functional Independence Measure (FIM), WeeFIM, and Caregiving Impact Scale (CIS) were measured at baseline and study completion. Regression modeling examined a priori selected variables associated with monthly costs using Andersen and Newman's framework for healthcare utilization, relevant literature, and clinical expertise. Data are reported in 2015 Canadian dollars ($1CAD = $0.78USD). RESULTS: Forty two children and their caregivers were enrolled. Overall median (interquartile range) monthly healthcare cost was $12 131 ($8159-$15 958) comprising $9929 (89%) family caregiving hours, $996 (9%) publicly funded, and $252 (2%) out-of-pocket (<1% third-party insurance) costs. With higher FIM score (lower dependency), median costs were reduced by 4.5% (95% confidence interval: 8.3%-0.5%), adjusted for age, sex, tracheostomy, and daily ventilation duration. Note: since the three cost categories did not sum to the total statistically derived median cost, the percentage of each category used the sum of median public + caregiver lost time + private out-of-pocket + third-party insurance as the denominator. CONCLUSIONS: For HMV children, most healthcare costs were due to family caregiving costs. More dependent children incur highest costs. The financial burden to family caregivers is substantial and needs to considered in future policy decisions related to pediatric HMV.
Identifier
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<a href="http://doi.org/10.1002/ppul.24923" target="_blank" rel="noreferrer noopener">10.1002/ppul.24923</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).
2020
Adult
Ambulatory Care/economics
Amin R
Canada
Caregivers/economics
Child
Child Preschool
Coyte PC
Female
Guerriere D
Health Care Costs
Health Expenditures
healthcare costs
healthcare utilization
Home Care Services/economics
home mechanical ventilation
Humans
Katz SL
long-term mechanical ventilation
Longitudinal Studies
Male
March 2021 List
McKim DA
Middle Aged
Nonoyama ML
Patient Acceptance of Health Care
Pediatric Pulmonology
Pediatrics
Prospective Studies
Quality Of Life
Respiration Artificial/economics
Rose L
Tracheostomy
ventilator assisted individual
Wasilewski M
Zagorski B
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1192/bjp.bp.107.044370" target="_blank" rel="noreferrer noopener">http://doi.org/10.1192/bjp.bp.107.044370</a>
Dublin Core
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Title
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Behavioural phenotype of Cornelia de Lange syndrome: case-control study
Publisher
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The British Journal of Psychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Male; Case-Control Studies; Young Adult; Surveys and Questionnaires; Child; Humans; Adult; Adolescent; Female; Child Preschool; Phenotype; Autistic Disorder/psychology; Communication Disorders/psychology; Compulsive Behavior/psychology; De Lange Syndrome/psychology; behavioral problems; De Lange syndrome; trajectory; characteristics; global behavior disorder
Creator
An entity primarily responsible for making the resource
Oliver C; Arron K; Sloneem J; Hall S
Description
An account of the resource
BACKGROUND: Cornelia de Lange syndrome is associated with abnormalities on chromosomes 5, 10 and X. AIMS: To delineate the behavioural phenotype of Cornelia de Lange syndrome with specific reference to autistic-spectrum disorder. METHOD: A total of 54 individuals with Cornelia de Lange syndrome (mean age 13.88 years; s.d.=8.58) and 46 comparable individuals with intellectual disability (mean age 13.74 years; s.d.=7.99) were assessed on measures of autistic-spectrum disorder, and adaptive, compulsive and disordered behaviour. RESULTS: There was no difference between the groups in global behaviour disorder. Severe autism was significantly more prevalent in the syndrome group (32.1%) than the comparison group (7.1%). In addition, the syndrome group also evidenced significantly higher levels of compulsive behaviour. CONCLUSIONS: These data suggest that autistic-spectrum disorder is part of the behavioural phenotype of Cornelia de Lange syndrome and that compulsive behaviours are evident. Future research should investigate this behavioural phenotype using contemporary diagnostic algorithms for autism with detailed examination of the phenomenology of compulsive behaviours.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1192/bjp.bp.107.044370" target="_blank" rel="noreferrer noopener">10.1192/bjp.bp.107.044370</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).
2008
Adolescent
Adult
Arron K
Autistic Disorder/psychology
behavioral problems
Case-Control Studies
characteristics
Child
Child Preschool
Communication Disorders/psychology
Compulsive Behavior/psychology
De Lange syndrome
De Lange Syndrome/psychology
Female
global behavior disorder
Hall S
Humans
Male
Oliver C
Phenotype
Sloneem J
Surveys And Questionnaires
The British Journal of Psychiatry
Trajectory
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2021 List
URL Address
<a href="http://doi.org/10.1016/j.socscimed.2020.113312" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.socscimed.2020.113312</a>
Dublin Core
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Title
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The grief ritual of extracting and donating human milk after perinatal loss
Publisher
An entity responsible for making the resource available
Social Science & Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Infant; Female; Humans; Infant Mortality; Pregnancy; Perinatal loss; Mothers; Stillbirth; Ceremonial Behavior; Grief; Ambiguous loss; Continuing bonds; Grief rituals; Meaning-making in loss; Milk donation; Milk Banks; Milk Human
Creator
An entity primarily responsible for making the resource
Oreg A
Description
An account of the resource
Perinatal loss is a major life crisis involving multiple losses, including the loss of future hopes and dreams, of being pregnant, and of self-esteem, to name a few. In the present study I focus on mothers who experienced perinatal loss and chose to extract and donate their human milk to nonprofit milk banks. Through an analysis of 88 women's personal testimonials, collected between 2017 and 2019, I uncover the ritualistic attributes of the extraction and donation process. The bereaved mothers in this study experienced ambiguous loss, comprising the combination of the physical absence and psychological presence of their baby. The process of extracting and donating their milk constitutes a grief ritual, allowing mothers to maintain and reconstruct the continuing bonds with their babies. The present study extends current understandings of organ donation in times of loss, highlighting the unique nature and consequences of the milk donation process through its conceptualization as a grief ritual.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.socscimed.2020.113312" target="_blank" rel="noreferrer noopener">10.1016/j.socscimed.2020.113312</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).
2020
Ambiguous loss
April 2021 List
Ceremonial Behavior
Continuing bonds
Female
Grief
Grief rituals
Humans
Infant
Infant Mortality
Meaning-making in loss
Milk Human
Milk Banks
Milk donation
Mothers
Oreg A
Perinatal Loss
Pregnancy
Social science & medicine
Stillbirth
-
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 2019 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 2019 List
URL Address
<a href="http://doi.org/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/jp.2017.160</a>
Dublin Core
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Title
A name given to the resource
Parental assessment of comfort in newborns affected by life-limiting conditions treated by a standardized neonatal comfort care program
Publisher
An entity responsible for making the resource available
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
Palliative Care/mt [Methods]; Parents/px [Psychology]; Patient Comfort/st [Standards]; Adult; Female; Humans; Infant; Intensive Care; Male; Neonatal/og [Organization & Administration]; New York; Newborn; Patient Care Team/og [Organization & Administration]; Practice Guidelines as Topic; Prospective Studies; Qualitative Research; Surveys and Questionnaires; Young Adult
Creator
An entity primarily responsible for making the resource
Parravicini E; Daho M; Foe G; Steinwurtzel R; Byrne M
Description
An account of the resource
OBJECTIVE: To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program. STUDY DESIGN: Participants were parents (n=35 families) who elected comfort care for their newborns diagnosed with life-limiting conditions. Standardized comfort measures including family/infant bonding, warmth, nutrition/hydration and pain/discomfort management were provided to all infants. Parents consented to receive a questionnaire with quantitative response options and open-ended questions. RESULTS: Forty-two questionnaires (26 from mothers and 16 from fathers) were collected and analyzed. Most parents reported that their child was treated with respect, in a caring, peaceful and non-invasive environment. To the question 'Do you think that overall your baby received comfort' mode response was 'always'. CONCLUSION: Parents of infants with life-limiting conditions perceive that their babies experience comfort as a result of the care provided by the standardized Neonatal Comfort Care Program.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1038/jp.2017.160" target="_blank" rel="noreferrer noopener">10.1038/jp.2017.160</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).
2018
Adult
Byrne M
Daho M
Female
Foe G
Humans
Infant
Intensive Care
Journal Of Perinatology
Male
Neonatal/og [Organization & Administration]
New York
Newborn
November 2019 List
Palliative Care/mt [methods]
Parents/px [psychology]
Parravicini E
Patient Care Team/og [Organization & Administration]
Patient Comfort/st [Standards]
Practice Guidelines As Topic
Prospective Studies
Qualitative Research
Steinwurtzel R
Surveys And Questionnaires
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 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
March 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.299" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.299</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Key Findings of the Structures and Processes of Inpatient Pediatric Palliative Care Programs (S737)
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
2020
Subject
The topic of the resource
burnout; child; clergy; conference abstract; controlled study; female; health care delivery; health care system; hospital patient; human; major clinical study; male; palliative therapy; physician; practice guideline; registered nurse; social worker
Creator
An entity primarily responsible for making the resource
Rogers M; Williams C; Klick J; Friebert S; Heitner R
Description
An account of the resource
Objectives: * Examine the key structures and processes of inpatient pediatric palliative care programs in the United States. * Assess the degree of variation in program delivery, staffing, and patient volumes. * Identify three threats and three opportunities to the standardization of pediatric palliative care practice. Original Research Background: Over the past ten years, health care systems have begun to recognize pediatric palliative care (PPC) programs as the standard of practice in providing high-quality care. Despite this culture shift, little is known about how PPC programs operate, the services they provide, or the staffing required to provide them sustainably. Research Objectives: To examine the key structures and processes of PPC programs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.299" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.299</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
Burnout
Child
Clergy
conference abstract
Controlled Study
Female
Friebert S
Health Care Delivery
Health Care System
Heitner R
Hospital Patient
Human
Journal of Pain and Symptom Management
Klick J
Major Clinical Study
Male
March 2020 List
Palliative Therapy
Physician
Practice Guideline
registered nurse
Rogers M
Social Worker
Williams C
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
February 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.416" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.416</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Evaluation of End-of-Life Care Programs at Emily's House Children's Hospice
Publisher
An entity responsible for making the resource available
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
pain; death; dyspnea; major clinical study; neoplasm; hospice; seizure; conference abstract; human; child; female; male; diagnosis; terminal care; patient care
Creator
An entity primarily responsible for making the resource
Ross S; Daffern K; Widger K; Rapoport A; Salminen R
Description
An account of the resource
Background: Emily's House Children's Hospice (EH) located in Toronto, Canada provides respite, transitional care, symptom management, and end-of-life (EoL) care. Children with serious medical conditions and their families may access any program over months or years but some only access EoL care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.416" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.416</a>
2018
Child
conference abstract
Daffern K
Death
Diagnosis
Dyspnea
February 2019 List
Female
Hospice
Human
Journal of Pain and Symptom Management
Major Clinical Study
Male
Neoplasm
Pain
Patient Care
Rapoport A
Ross S
Salminen R
Seizure
Terminal Care
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1371/journal.pone.0162463" target="_blank" rel="noreferrer noopener">http://doi.org/10.1371/journal.pone.0162463</a>
Dublin Core
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Title
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Functional and gait assessment in children and adolescents affected by Friedreich's ataxia: A one-year longitudinal study
Publisher
An entity responsible for making the resource available
PLoS ONE
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
adolescent; reliability; preschool child; longitudinal study; human; article; child; female; male; controlled study; clinical article; walking; Friedreich's ataxia; functional assessment; gait; assessment of humans; Gait Analysis and the Scale for the Assessment and Rating of Ataxia; step length; stride length; walking velocity; tone and motor problems; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Vasco G; Gazzellini S; Petrarca M; Lispi M L; Pisano A; Zazza M; Bella G D; Castelli E; Bertini E
Description
An account of the resource
Friedreich's ataxia is the most common autosomal recessive form of neurodegenerative ataxia. We present a longitudinal study on the gait pattern of children and adolescents affected by Friedreich's ataxia using Gait Analysis and the Scale for the Assessment and Rating of Ataxia (SARA). We assessed the spectrum of changes over 12 months of the gait characteristics and the relationship between clinical and instrumental evaluations. We enrolled 11 genetically confirmed patients affected by Friedreich's ataxia in this study together with 13 normally developing age-matched subjects. Eight patients completed a 12-month follow-up under the same protocol. By comparing the gait parameters of Friedreich's ataxia with the control group, we found significant differences for some relevant indexes. In particular, the increased knee and ankle extension in stance revealed a peculiar biomechanical pattern, which correlated reliably with SARA Total, Gait and Sitting scores. The knee pattern showed its consistency also at the follow-up: Knee extension increased from 6.8+/-3.5degree to -0.5+/-3.7degree and was significantly correlated with the SARA total score. This feature anticipated the loss of the locomotor function in two patients. In conclusion, our findings demonstrate that the selective and segmental analysis of kinetic/kinematic features of ataxic gait, in particular the behavior of the knee, provides sensitive measures to detect specific longitudinal and functional alterations, more than the SARA scale, which however has proved to be a reliable and practical assessment tool. Functional outcomes measures integrated by instrumental evaluation increase their sensitivity, reliability and suitability for the follow-up of the disease progression and for the application in clinical trials and in rehabilitative programs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1371/journal.pone.0162463" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0162463</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
Adolescent
Article
assessment of humans
Bella G D
Bertini E
Castelli E
characteristics
Child
Clinical Article
Controlled Study
Female
Friedreich's ataxia
functional assessment
Gait
Gait Analysis and the Scale for the Assessment and Rating of Ataxia
Gazzellini S
Human
Lispi M L
longitudinal study
Male
Petrarca M
Pisano A
PLoS One
Preschool Child
Reliability
step length
stride length
tone and motor problems
Trajectory
Vasco G
Walking
walking velocity
Zazza M
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1046/j.1464-410x.2001.02341.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1046/j.1464-410x.2001.02341.x</a>
Dublin Core
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Title
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Enuresis and urinary incontinence in children and adolescents with spinal muscular atrophy
Publisher
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BJU International
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Male; Child; Humans; Adolescent; Female; Enuresis/etiology/physiopathology; Muscular Atrophy Spinal/complications/physiopathology; Nerve Degeneration/complications/physiopathology; Urinary Incontinence/etiology/physiopathology; urinary incontinence; SMA1; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
von Gontard A; Laufersweiler-Plass C; Backes M; Zerres K; Rudnik-Schoneborn S
Description
An account of the resource
OBJECTIVE: To assess the rate and type of urinary incontinence in a large sample of children and adolescents with spinal muscular atrophy (SMA), a genetic disorder characterized by loss of motor function caused by anterior horn degeneration. PATIENTS, SUBJECTS AND METHODS: The study included 96 severely incapacitated patients with SMA (aged 6.0-18.11 years) who were examined in detail, including a structured interview (Kinder-DIPS), the Child Behaviour Checklist (CBCL) and a specific questionnaire for urinary incontinence. They were compared with two control groups of unaffected siblings and normal children. RESULTS: In all, 29% of the patients were wet at night and/or during the day; mostly younger children with SMA types I and II only were affected. The results of the interview were more reliable than the CBCL. The specific questionnaire revealed a variety of possible functional and neurogenic forms of wetting, including nocturnal enuresis, voiding postponement, dysfunctional voiding, stress, symptomatic (urinary tract infections, UTIs) and neurogenic incontinence. Many patients were constipated, soiled or had UTIs. The rate of behavioural problems was twice as high (32%) as normal (15%; CBCL). CONCLUSION: Children with SMA have a high rate of urinary incontinence which is often overlooked, and not diagnosed and treated adequately. These problems should be addressed routinely by paediatricians in children referred to paediatric urological specialists.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1046/j.1464-410x.2001.02341.x" target="_blank" rel="noreferrer noopener">10.1046/j.1464-410x.2001.02341.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).
2001
Adolescent
Backes M
BJU International
characteristics
Child
Enuresis/etiology/physiopathology
Female
Humans
Laufersweiler-Plass C
Male
Muscular Atrophy Spinal/complications/physiopathology
Nerve Degeneration/complications/physiopathology
Rudnik-Schoneborn S
SMA1
Trajectory
urinary incontinence
Urinary Incontinence/etiology/physiopathology
von Gontard A
Zerres K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1016/j.apmr.2012.05.025" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.apmr.2012.05.025</a>
Dublin Core
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Title
A name given to the resource
Responsiveness of the motor function measure in neuromuscular diseases
Publisher
An entity responsible for making the resource available
Archives of Physical Medicine and Rehabilitation
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Middle Aged; Male; Aged; Mobility Limitation; Young Adult; Child; Humans; Adult; Prospective Studies; Adolescent; Perception; Female; Disability Evaluation; Motor Skills; Physical Therapy Modalities; Muscular Dystrophy Duchenne/physiopathology/rehabilitation; Neuromuscular Diseases/physiopathology/rehabilitation; tone and motor problems; SMA1; Q3 conditions; tool development; scale development; motor function measure; MFM
Creator
An entity primarily responsible for making the resource
Vuillerot C; Payan C; Girardot F; Fermanian J; Iwaz J; Berard C; Ecochard R
Description
An account of the resource
OBJECTIVES: To study the responsiveness (sensitivity to change) of the Motor Function Measure (MFM) in detecting change in neuromuscular disease patients with the intent of using this measure in future clinical trials. DESIGN: Prospective cohort observational study. SETTING: Inpatient and outpatient facilities for follow-up and treatment of neuromuscular diseases. PARTICIPANTS: Patients (N=152) with various neuromuscular diseases aged 6 to 60 years. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE(S): We used the MFM total score and its 3 subscores on 2 measurements grossly 1 year apart. The physicians and the patients (or proxy) were asked to provide their perceived change in functional status since the first MFM. These changes were expressed in 3 outcomes: deterioration, stability, or improvement. RESULTS: The overall 12-month-standardized mean change of the total score mean +/- SD annual total score change was -2.4+/-5.5 points (P<.001), with patients with Duchenne muscular dystrophy (DMD) presenting the most significant change (-5.8+/-6.3, P<.001). The change in patients reporting deterioration (34%) was significantly larger than that of those reporting stability (47%) or improvement (10%) (-4.4+/-6.4 vs -2.0+/-5.6 and +0.9+/-4.4 points, respectively, P<.01). The 12-month-standardized total score changes were significantly greater in physician-rated deteriorated (49%) versus stable patients (51%), with mean differences in scores being -5.3+/-7.6 and -1.2+/-5.3, respectively (P<.001). CONCLUSIONS: The MFM showed a good responsiveness, especially in patients with DMD and agreements with patients' and physicians' perceived change. Confirming this responsiveness requires larger age groups of patients with DMD and other neuromuscular diseases as well as disease-specific interexamination delays.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.apmr.2012.05.025" target="_blank" rel="noreferrer noopener">10.1016/j.apmr.2012.05.025</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).
2012
Adolescent
Adult
Aged
Archives Of Physical Medicine And Rehabilitation
Berard C
Child
Disability Evaluation
Ecochard R
Female
Fermanian J
Girardot F
Humans
Iwaz J
Male
MFM
Middle Aged
Mobility Limitation
motor function measure
Motor Skills
Muscular Dystrophy Duchenne/physiopathology/rehabilitation
Neuromuscular Diseases/physiopathology/rehabilitation
Payan C
Perception
Physical Therapy Modalities
Prospective Studies
Q3 conditions
scale development
SMA1
tone and motor problems
tool development
Vuillerot C
Young Adult
-
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
2020 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
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27993</a>
Dublin Core
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Title
A name given to the resource
Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
newborn; social support; child; human; adult; female; major clinical study; male; retrospective study; article; priority journal; aged; Bereavement; adolescent; terminal care; quality of life; emotion; Parent; psychologist; social worker; content analysis; interpersonal communication; quantitative analysis; time of death; infant; caregiver; pediatric patient; nurse; support group; thematic analysis; psycho-oncology; open ended questionnaire; childhood cancer/dm [Disease Management]; pediatric oncologist; health care need; social media; worker
Creator
An entity primarily responsible for making the resource
Wiener L; Tager J; Mack J; Battles H; Bedoya S Z; Gerhardt C A
Description
An account of the resource
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">10.1002/pbc.27993</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
Adolescent
Adult
Aged
Article
Battles H
Bedoya S Z
Bereavement
Caregiver
Child
childhood cancer/dm [Disease Management]
Content Analysis
Emotion
Female
Gerhardt C A
health care need
Human
Infant
Interpersonal Communication
Mack J
Major Clinical Study
Male
Newborn
Nurse
Oncology 2020 List
open ended questionnaire
Parent
Pediatric Blood and Cancer
pediatric oncologist
pediatric patient
Priority Journal
Psycho-Oncology
Psychologist
Quality Of Life
quantitative analysis
Retrospective Study
social media
Social Support
Social Worker
support group
Tager J
Terminal Care
Thematic Analysis
time of death
Wiener L
worker
-
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
2019 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
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1002/pbc.27514" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27514</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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Trends in the aggressiveness of pediatric cancer near the end-of-life
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
adult; aggressiveness; artificial ventilation; cancer patient; child; Childhood cancer; conference abstract; controlled study; death; diagnosis; female; hematologic malignancy; human; intubation; Japan; major clinical study; male; resuscitation; school child; terminal care; young adult
Creator
An entity primarily responsible for making the resource
Yotani N; Shinjo D; Fushimi K; Matsumoto K
Description
An account of the resource
Backgrounds: Many adult patients with cancer who knowthey are dying choose less intense care. High intensity careis associated with worse caregiver outcomes. Little is knownabout intensity of treatment of end-of-life care in children withcancer in Japan.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.27514" target="_blank" rel="noreferrer noopener">10.1002/pbc.27514</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).
2018
Adult
aggressiveness
Artificial Ventilation
Cancer Patient
Child
Childhood Cancer
conference abstract
Controlled Study
Death
Diagnosis
Female
Fushimi K
Hematologic Malignancy
Human
Intubation
Japan
Major Clinical Study
Male
Matsumoto K
Oncology 2019 List
Pediatric Blood and Cancer
Resuscitation
School Child
Shinjo D
Terminal Care
Yotani N
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
June 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="https://www.sciencedirect.com/science/article/pii/S0885392423004475?via%3Dihub">https://www.sciencedirect.com/science/article/pii/S0885392423004475?via%3Dihub</a>
Dublin Core
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Title
A name given to the resource
Are we on the same page? Exploring pediatric patients' involvement with advance care planning
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
cystic fibrosis; child; adult; female; human; male; caregiver; palliative therapy; neurology; outcome assessment; young adult; review; Medline; advance care planning; systematic review; emotion; randomized controlled trial (topic); acquired immune deficiency syndrome; adolescent; Advance Care Planning; patient participation; pediatric patient
Creator
An entity primarily responsible for making the resource
Aasen ERHV; oSovik ML; Stordal K; Lee 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).
Identifier
An unambiguous reference to the resource within a given context
<a href="https://www.sciencedirect.com/science/article/pii/S0885392423004475?via%3Dihub">10.1016/j.jpainsymman.2023.04.003</a>
2023
Aasen ERHV
acquired immune deficiency syndrome
Adolescent
Adult
Advance Care Planning
Caregiver
Child
Cystic Fibrosis
Emotion
Female
Human
Journal of Pain and Symptom Management
June 2022 List
Lee A
Male
Medline
Neurology
oSovik ML
outcome assessment
Palliative Therapy
Patient Participation
pediatric patient
Randomized Controlled Trial (topic)
Review
Stordal K
Systematic Review
Young Adult
-
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/10.1016/j.yebeh.2013.11.012" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.yebeh.2013.11.012</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
Sudden unexpected death in children with epilepsy: Hearing from parents
Publisher
An entity responsible for making the resource available
Epilepsy & Behavior
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Female; Humans; Male; Parents; Death; Epilepsy; Sudden
Creator
An entity primarily responsible for making the resource
Abdalla IG; Scorza CA; Fiorini AC; Cavalheiro EA; Scorza FA
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.yebeh.2013.11.012" target="_blank" rel="noreferrer">10.1016/j.yebeh.2013.11.012</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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2014-02
2014
Abdalla IG
Backlog
Cavalheiro EA
Death
Epilepsy
Epilepsy & Behavior
Female
Fiorini AC
Humans
Journal Article
Male
Parents
Scorza CA
Scorza FA
Sudden