1
40
6
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Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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URL Address
<a href="http://doi.org/10.1186/1471-2431-6-1" target="_blank" rel="noreferrer">http://doi.org/10.1186/1471-2431-6-1</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Identification of pain indicators for infants at risk for neurological impairment: a Delphi consensus study
Publisher
An entity responsible for making the resource available
Bmc Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Delphi Technique; NET Grey Lit; Delphi Method
Creator
An entity primarily responsible for making the resource
Stevens B; McGrath P; Yamada J; Gibbins S; Beyene J; Breau L; Camfield C; Finley A; Franck L; Howlett A; Johnston C; McKeever P; O'Brien K; Ohlsson A
Description
An account of the resource
Background: A number of infant pain measures have been developed over the past 15 years incorporating behavioural and physiologic indicators; however, no reliable or valid measure exists for infants who are at risk for neurological impairments (NI). The objective of this study was to establish consensus about which behavioural, physiologic and contextual indicators best characterize pain in infants at high, moderate and low levels of risk for NI. Methods: A 39- item, self-administered electronic survey that included infant physiologic, behavioural and contextual pain indicators was used in a two round Delphi consensus exercise. Fourteen pediatric pain experts were polled individually and anonymously on the importance and usefulness of the pain indicators for the 3 differing levels of risk for NI. Results: The strength of agreement between expert raters was moderate in Round 1 and fair in Round 2. In general, pain indicators with the highest concordance for all three groups were brow bulge, facial grimace, eye squeeze, and inconsolability. Increased heart rate from baseline in the moderate and severe groups demonstrated high concordance. In the severe risk group, fluctuations in heart rate and reduced oxygen saturation were also highly rated. Conclusions: These data constitute the first step in contributing to the development and validation of a pain measure for infants at risk for NI. In future research, we will integrate these findings with the opinions of (a) health care providers about the importance and usefulness of infant pain indicators and (b) the pain responses of infants at mild, moderate and high risk for NI.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1471-2431-6-1" target="_blank" rel="noreferrer">10.1186/1471-2431-6-1</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2006
Backlog
Beyene J
Bmc Pediatrics
Breau L
Camfield C
Delphi Method
Delphi Technique
Finley A
Franck L
Gibbins S
Howlett A
Johnston C
Journal Article
McGrath P
McKeever P
NET Grey Lit
O'Brien K
Ohlsson A
Stevens B
Yamada J
-
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/10.1017/s0012162203000306" target="_blank" rel="noreferrer">http://doi.org/10.1017/s0012162203000306</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
Assessing the impact of pediatric epilepsy and concomitant behavioral, cognitive, and physical/neurologic disability: Impact of Childhood Neurologic Disability Scale
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
2003
Subject
The topic of the resource
Child; Female; Humans; Male; Questionnaires; Follow-Up Studies; Longitudinal Studies; Reproducibility of Results; Disability Evaluation; Diagnostic and Statistical Manual of Mental Disorders; adolescent; Preschool; Chronic disease; Child Behavior Disorders/diagnosis/etiology; Cognition Disorders/diagnosis/etiology; Epilepsy/complications/diagnosis
Creator
An entity primarily responsible for making the resource
Camfield C; Breau L; Camfield P
Description
An account of the resource
Epilepsy has a significant impact on a child's life, the extent to which is based on four factors: epilepsy, cognition, behavioral, and physical/neurologic function. This study evaluates the ability of the 44-item Impact of Childhood Neurologic Disability Scale (ICND) to assess each of these four realms. Parents of children (aged 2 to 18 years) with epilepsy rated their child's overall quality of life and completed the ICND. External validation compared the ICND with (1) neurologists' reports of children's behavior, cognitive abilities, physical/neurologic disability, and epilepsy; and (2) parents, teachers, and children's ratings on six 'criterion standard' questionnaires. Families of 68 children with epilepsy only and 29 children with 'epilepsy-plus' (additional cognitive, behavioral, or physical/neurologic disability; 39 males, 58 females; mean age at testing 10 years 3 months [SD 4.5] age range 2 to 17 years) participated. Internal consistency was excellent (Cronbach's alpha=0.92) as was test-retest reliability (intraclass correlation=0.89). Caregivers distinguished the impact of each of the four realms. Scores were negatively related to quality of life (Pearson's r=-0.59). Children with high ICND scores had more difficulties at home and school. Their parents saw them as less rewarding and adaptable and the children saw themselves as less intelligent and less popular with more emotional problems. In addition, children with 'epilepsy-plus' had significantly higher total ICND scores as well as markedly elevated scores within each of the four realms when compared with the epilepsy-only group. It is concluded that the ICND is an accurate, quick measurement tool reflecting the impact of behavior, cognitive learning ability, physical/neurologic disability, and epilepsy on children and their families.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/s0012162203000306" target="_blank" rel="noreferrer">10.1017/s0012162203000306</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2003
Adolescent
Backlog
Breau L
Camfield C
Camfield P
Child
Child Behavior Disorders/diagnosis/etiology
Chronic Disease
Cognition Disorders/diagnosis/etiology
Developmental Medicine and Child Neurology
Diagnostic and Statistical Manual of Mental Disorders
Disability Evaluation
Epilepsy/complications/diagnosis
Female
Follow-up Studies
Humans
Journal Article
Longitudinal Studies
Male
Preschool
Questionnaires
Reproducibility of 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.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1001/archpedi.157.12.1219" target="_blank" rel="noreferrer">http://doi.org/10.1001/archpedi.157.12.1219</a>
<a href="http://www.ncbi.nlm.nih.gov/pubmed/14662579" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/pubmed/14662579</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The incidence of pain in children with severe cognitive impairments
Publisher
An entity responsible for making the resource available
Archives Of Pediatrics & Adolescent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Creator
An entity primarily responsible for making the resource
Breau Lynn; Camfield C; McGrath PJ; Finley A
Description
An account of the resource
BACKGROUND: Children with severe cognitive impairments are believed to suffer pain frequently. OBJECTIVE: To document the frequency, duration, and intensity of pain experienced by children with severe cognitive impairments. DESIGN: Cohort study using surveys during 1 year. SETTING: Tertiary-care pediatric center for 3 provinces in eastern Canada. PARTICIPANTS: Caregivers of 94 children and adolescents with moderate to profound mental retardation, aged 3 to 18 years (mean age, 10.1 years [SD, 4.3 years]). Forty-four children had cerebral palsy and 59 had a seizure disorder; 83 lived with family, and 11 in group homes. Main Outcome Measure Caregivers completed 4 semistructured telephone surveys, reporting the cause, duration (in minutes), and intensity (on a scale of 0-10) of children's pain during the previous week. RESULTS: A total of 406 episodes of pain occurred. During a 4-week period, 73 children (78%) experienced pain at least once, and 58 (62%) had nonaccidental pain. Accidental pain was most frequent (n = 28 [30%]), followed by gastrointestinal tract (n = 21 [22%]), infection (n = 19 [20%]), and musculoskeletal (n = 18 [19%]) pain. Each week, 33 to 49 children (35%-52%) had pain. Mean pain duration was longer than 9 hours per week (SD, 1.7-2.4 hours). Mean intensity was 6.1 (SD, 2.2) for nonaccidental pain and 3.8 (SD, 2.1) for accidental pain. Children with the fewest abilities had more nonaccidental pain (F4,89 = 3.7; P =.007), and children with greater motor abilities had more accidental pain (F4,89 = 2.8; P =.03). Pain did not vary with demographic characteristics. CONCLUSIONS: Children with severe cognitive impairments experience pain frequently, mostly not due to accidental injury. Children with the fewest abilities experience the most pain.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/archpedi.157.12.1219" target="_blank" rel="noreferrer">10.1001/archpedi.157.12.1219</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2003
Archives Of Pediatrics & Adolescent Medicine
Backlog
Breau Lynn
Camfield C
Finley A
Journal Article
McGrath PJ
-
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/s0022-3476(99)70125-3" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0022-3476(99)70125-3</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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Living with cerebral palsy and tube feeding: A population-based follow-up study
Publisher
An entity responsible for making the resource available
The Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
1999
Subject
The topic of the resource
Child; Humans; Community Health Planning; Adult; Attitude to Health; Questionnaires; Follow-Up Studies; Survival Analysis; Activities of Daily Living; quality of life; adolescent; Preschool; Adaptation; Psychological; Caregivers/psychology; infant; Parents/psychology; Nutritional Failure; Cerebral Palsy/mortality/psychology/therapy; Enteral Nutrition/adverse effects/psychology; Gastrostomy/adverse effects/psychology; Jejunostomy/adverse effects/psychology; Nova Scotia/epidemiology; Precipitating Factors
Creator
An entity primarily responsible for making the resource
Smith SW; Camfield C; Camfield P
Description
An account of the resource
OBJECTIVES: To assess the impact of surgically placed feeding tubes on children with severe cerebral palsy (CP) and their families and to determine the survival of these children after initiation of tube feeding (TF). METHODS: Virtually all children from Nova Scotia who had gastrostomy or jejunostomy procedures between the years 1980 and 1998 and who had been diagnosed with CP were identified. Caretakers of those children who had TF initiated in the last 8 years were evaluated by using a semi-structured interview. Names of children who had not had recent follow-up visits were submitted to the provincial Vital Statistics office to determine whether they had died. Data from patients who were tube-fed between 1980 and 1989 were then used in combination with data from the more recent cases to create a survival curve. RESULTS: A total of 61 children were identified; 16 had died. Forty of 45 eligible families were interviewed; 90% were pleased with the effect of TF on their child and family life. Negative reports were associated with increased stress related to feeding. Survival rates after gastrostomy and/or jejunostomy were 83% after 2 years and 75% after 7 years. CONCLUSIONS: In children with severe CF, initiation of TF improved the quality of life for both the child and family in 90% despite frequent minor complications.
1999
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0022-3476(99)70125-3" target="_blank" rel="noreferrer">10.1016/s0022-3476(99)70125-3</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
1999
Activities of Daily Living
Adaptation
Adolescent
Adult
Attitude To Health
Backlog
Camfield C
Camfield P
Caregivers/psychology
Cerebral Palsy/mortality/psychology/therapy
Child
Community Health Planning
Enteral Nutrition/adverse effects/psychology
Follow-up Studies
Gastrostomy/adverse effects/psychology
Humans
Infant
Jejunostomy/adverse effects/psychology
Journal Article
Nova Scotia/epidemiology
Nutritional Failure
Parents/psychology
Precipitating Factors
Preschool
Psychological
Quality Of Life
Questionnaires
Smith SW
Survival Analysis
The Journal Of Pediatrics
-
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/10.1067/mpd.2001.112247" target="_blank" rel="noreferrer">http://doi.org/10.1067/mpd.2001.112247</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
Measuring pain accurately in children with cognitive impairments: refinement of a caregiver scale
Publisher
An entity responsible for making the resource available
The Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Child; Female; Humans; Male; Logistic Models; Prospective Studies; Odds Ratio; Sensitivity and Specificity; Cognition Disorders; Non-U.S. Gov't; Research Support; RDF Project; caregivers; Pain Measurement/methods
Creator
An entity primarily responsible for making the resource
Breau LM; Camfield C; McGrath PJ; Rosmus C; Finley G A
Description
An account of the resource
OBJECTIVE: To examine whether typical pain behavior, as reported by caregivers, could be used prospectively to predict future pain behavior and to derive a subset of core items from the Non-Communicating Children's Pain Checklist. STUDY DESIGN: Caregivers (n = 33) of children with cognitive impairments completed the Non-Communicating Children's Pain Checklist retrospectively and immediately after subsequent episodes of pain and distress in their homes. Odds ratios were computed for checklist items, and multiple regressions were used to predict numerical pain and distress ratings with items that had significant odds ratios. A logistic regression was used to test whether the items found to predict pain could correctly classify the presence or absence of pain in a new cohort of 63 children with similar cognitive impairments. RESULTS: Seven of the checklist items had significant odds ratios: Cranky, Seeking Comfort, Change in Eyes, Less Active, Gesture to Part That Hurts, Tears, and Gasping. This subset of items significantly predicted numerical pain ratings by caregivers (multiple R =.70), but not distress ratings (multiple R =.31). In a second group of 63 children with cognitive impairments, this subset of items displayed 85% sensitivity and 89% specificity for pain. CONCLUSION: A subset of items from the Non-Communicating Children's Pain Checklist could predict pain in children with cognitive impairments. Caregivers' retrospective reports may be useful for clinicians making judgments about pain in these children.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1067/mpd.2001.112247" target="_blank" rel="noreferrer">10.1067/mpd.2001.112247</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
2001
Backlog
Breau LM
Camfield C
Caregivers
Child
Cognition Disorders
Female
Finley G A
Humans
Journal Article
Logistic Models
Male
McGrath PJ
Non-U.S. Gov't
Odds Ratio
Pain Measurement/methods
Prospective Studies
RDF Project
Research Support
Rosmus C
Sensitivity and Specificity
The Journal Of Pediatrics
-
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 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Helping Families Cope With The Severe Stress Of Dravet Syndrome.
Publisher
An entity responsible for making the resource available
Canadian Journal Of Neurological Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Epilepsies; Myoclonic/nursing; Epilepsies Myoclonic/physiopathology; Epilepsies Myoclonic/psychology; Family; Family Health; Female; Humans; Male; Stress Psychological/etiology; Transition To Adult Care
Dravet Syndrome; Family; Help; Management; Support
Creator
An entity primarily responsible for making the resource
Camfield P; Camfield C; Nolan K
Description
An account of the resource
Abstract
A child with Dravet syndrome shakes family life to the core. Dravet syndrome usually has three phases: (1) up to 1-1½ years: with episodes of febrile status epilepticus but normal development; (2) age 1½ to ~6-10 years: with frequent seizures of varying types, developmental stagnation, behavioural and sleep problems; (3) after ~10 years: improvement in seizures, deteriorating gait, intellectual disability but some developmental gains. Complete seizure control is rare-simply prescribing medication is inadequate to help families. Based on structured interviews with 24 families and confirmed by more informal discussions with other families, we suggest strategies for coping with this catastrophe. A child with Dravet syndrome usually means that one parent cannot work-financial pressures should be anticipated. In Stage 1, the approach to status should include a written protocol. An indwelling catheter for rapid venous access may be helpful. In Stage 2, assistance finding qualified babysitters is required, and the extended family needs encouragement to help. Appropriate equipment, rescue medication and protocols should travel with the child. Siblings may benefit from a system of one parent "on call." An internet support group provides an invaluable lifeline. In Stage 3, family isolation may be extreme-respite care and personal time for parents are important. Death from status, accidents and SUDEP (sudden unexplained death in epilepsy) occurs in 15%. Fear of SUDEP needs to be addressed. Moving from paediatric to adult care is frightening; an epilepsy transition clinic is useful. Attention to these realities may improve the quality of life for both child and family.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1017/cjn.2016.248
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
Camfield C
Camfield P
Canadian Journal of Neurological Sciences
Dravet Syndrome
Epilepsies
Epilepsies Myoclonic/physiopathology
Epilepsies Myoclonic/psychology
Family
Family Health
Female
Help
Humans
June 2016 List
Male
Management
Myoclonic/nursing
Nolan K
Stress Psychological/etiology
Support
Transition To Adult Care