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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2023 Special Edition 2 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2027 SE2 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1097/DBP.0000000000001168" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/DBP.0000000000001168</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-Reported Caregiving Roles of Siblings of Children with Inborn Errors of Metabolism
Publisher
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Journal of Developmental and Behavioral Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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caregiving; disabilities; inherited metabolic disorders; psychosocial support; siblings
Creator
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Granovetter MA; Sumrall S; Lea D; Gelles S; Koehly LM
Description
An account of the resource
ABSTRACT: Objectives: Research examining sibling caregiving contributions to medically complex pediatric patients, including those with inborn errors of metabolism (IEMs), is limited. We assess caregiving roles and attributes of siblings and hypothesize that there will be differences in parent-reported contributions among siblings of children with IEMs and siblings of typically developing (TD) children. Study design: A convergent parallel mixed-methods study design guided analysis of data from parental surveys and semistructured interviews. Interviews were conducted with parents (n = 49) of children with IEMs and parents (n = 28) of exclusively TD children. We used inductive thematic analysis to identify themes related to sibling caregiving. The caregiving and support roles for siblings (n = 55) of children with IEMs and siblings (n = 42) of TD children were coded to assess each sibling's caregiving contributions and personal attributes. Results: Logistic regressions, using generalized estimating equations, were fitted. Results showed that siblings of children with IEMs were significantly more likely to provide monitoring (odds ratio [OR]: 3.62, confidence interval [CI]: 1.30–10.07) and emotional/social support (OR: 4.02, CI: 1.67–9.67) than siblings of TD children. Themes arising from interviews with parents of children with IEMs focused on sibling attributes, parental expectations regarding sibling caregiving, and challenges to the sibling-sibling and parent-sibling relationships. Themes revealed nuances in the sibling caregiving experience. Conclusion: Siblings of children with IEMs make meaningful caregiving contributions and may provide care differently than siblings of TD children. Understanding childhood caregiving roles may inform how health care providers and parents encourage sibling caregiving contributions into adulthood.
Identifier
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<a href="http://doi.org/10.1097/DBP.0000000000001168" target="_blank" rel="noreferrer noopener">10.1097/DBP.0000000000001168</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2027 SE2 - Parent Perspectives
Caregiving
Disabilities
Gelles S
Granovetter MA
inherited metabolic disorders
Journal Of Developmental And Behavioral Pediatrics
Koehly LM
Lea D
psychosocial support
Siblings
Sumrall S
-
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/10.1097/DBP.0000000000000317" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/DBP.0000000000000317</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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A Pilot Study of the Association of Markers of Cholesterol Synthesis with Disturbed Sleep in Smith-Lemli-Opitz Syndrome
Publisher
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Journal of Developmental and Behavioral Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
sleep disturbance/disorders; Smith-Lemli-Optiz syndrome; trajectory; characteristics
Creator
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Freeman K A; Olufs E; Tudor M; Roullet J B; Steiner R D
Description
An account of the resource
OBJECTIVE: Smith-Lemli-Opitz syndrome (SLOS) is a rare genetic disorder characterized by cholesterol synthesis impairment. A host of physical, developmental, and behavioral presentations are associated with SLOS, many of which have been related with disorder severity. Sleep disturbance is commonly reported in SLOS. This study is the first to examine the association between sleep disturbance and biomarkers of cholesterol synthesis defect. METHOD: Twenty youth with SLOS participated. Biomarkers of cholesterol synthesis were obtained, including plasma sterols (i.e., 7-dehydrocholesterol, 8-dehydrocholesterol, and cholesterol), mevalonic acid, and 24-S hydroxycholsterol. A ratio of plasma cholesterol precursors to cholesterol levels was used as a measure of biochemical severity. Parents reported their children's sleep problems using the Children's Sleep Habits Questionnaire. RESULTS: Most markers of cholesterol synthesis disruption were associated with overall sleep disturbance. Biochemical severity of SLOS was also associated with specific sleep problems (e.g., decreased sleep duration and increased sleep onset delay) and was identified as a significant predictor of these factors. CONCLUSION: This study is the first to demonstrate associative relationships between cholesterol levels and sleep disturbance in youth with SLOS. These results add to the current understanding of how cholesterol levels may contribute to the behavioral phenotype of SLOS. These findings may inform future studies related to the role cholesterol synthesis defects play in the behavioral phenotype of SLOS and, subsequently, modalities of intervention for behavioral symptoms.
Identifier
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<a href="http://doi.org/10.1097/DBP.0000000000000317" target="_blank" rel="noreferrer noopener">10.1097/DBP.0000000000000317</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
characteristics
Freeman K A
Journal Of Developmental And Behavioral Pediatrics
Olufs E
Roullet J B
sleep disturbance/disorders
Smith-Lemli-Optiz syndrome
Steiner R D
Trajectory
Tudor M
-
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/10.1097/00004703-200510000-00004" target="_blank" rel="noreferrer">http://doi.org/10.1097/00004703-200510000-00004</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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Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities
Publisher
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Journal Of Developmental And Behavioral Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
PedPal Lit
Creator
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Graham RJ; Robinson WM
Identifier
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<a href="http://doi.org/10.1097/00004703-200510000-00004" target="_blank" rel="noreferrer">10.1097/00004703-200510000-00004</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2005
2005
Backlog
Graham RJ
Journal Article
Journal Of Developmental And Behavioral Pediatrics
PedPal Lit
Robinson WM
-
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/10.1097/00004703-199208000-00004" target="_blank" rel="noreferrer">http://doi.org/10.1097/00004703-199208000-00004</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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Gender differences in infirmary use at a residential summer camp
Publisher
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Journal Of Developmental And Behavioral Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
1992
Subject
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Child; Female; Humans; Male; Patient Acceptance of Health Care; Morbidity; New England; adolescent; Gender Identity; Camping; Child Health Services/utilization
Creator
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Rudolf MC; Tomanovich O; Greenberg J; Friend L; Alario AJ
Description
An account of the resource
Studies of health behavior in adults show that women report more morbidity and greater health service utilization than do men, despite lower mortality rates. Explanations involve social and biological gender differences in adult life. Infirmary utilization at a residential summer camp where parental influence is minimized was studied to determine whether these gender differences occur in the pediatric age group. Three hundred ninety-eight campers, 8 to 18 years old were studied. Girls were observed to make greater use of the infirmary than boys (p less than .01) and were especially likely to present with minor trauma, both musculoskeletal (p less than .05) and skin (p less than .01). No correlation was found between age and frequency of visits. Obvious morbidity was similar for boys and girls, in that no gender difference was observed in those visiting for definite medical indications alone or in those admitted. However, a difference was evident in those visiting for minor and trivial problems, particularly in those making three or more visits for minor and trivial problems (p less than .01). Although obvious morbidity was no different in campers, girls used the infirmary more than boys in a manner similar to that reported for adult health behavior. This suggests that gender differences occur earlier than suspected and are not simply related to adult social roles.
1992
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00004703-199208000-00004" target="_blank" rel="noreferrer">10.1097/00004703-199208000-00004</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
1992
Adolescent
Alario AJ
Backlog
Camping
Child
Child Health Services/utilization
Female
Friend L
Gender Identity
Greenberg J
Humans
Journal Article
Journal Of Developmental And Behavioral Pediatrics
Male
Morbidity
New England
Patient Acceptance of Health Care
Rudolf MC
Tomanovich O