1
40
26
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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
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
2030 SE2 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1136/bmjopen-2021-053184" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjopen-2021-053184</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
Programmes to prepare siblings for future roles to support their brother or sister with a neurodisability: protocol of a scoping review
Publisher
An entity responsible for making the resource available
BMJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Disabled Persons; Siblings; Adolescent; developmental neurology & neurodisability; education & training (see medical education & training); Health Personnel; Humans; Male; paediatrics; Review Literature as Topic
Creator
An entity primarily responsible for making the resource
Nguyen L; Bootsma J; Di Rezze B; Jack S; Ketelaar M; Gorter JW
Description
An account of the resource
INTRODUCTION: Siblings share a lifelong bond in their relationship, and they may choose to provide support to their brother or sister with a neurodisability. Previous reviews summarised programmes that only focused on the behavioural, emotional and psychological outcomes of the siblings. There is a need to synthesise existing evidence and enhance our understanding about programmes for siblings to acquire knowledge, develop skills and become empowered that can help them to provide support to their brother or sister with a neurodisability. The objective of this review is to identify and map the characteristics and outcomes of programmes designed to prepare siblings in their future roles to support their brother or sister with a neurodisability. METHODS AND ANALYSIS: This review will be conducted using the Joanna Briggs Institute methodology for scoping reviews. An integrated knowledge translation approach will be used by partnering with the Sibling Youth Advisory Council comprised of siblings of individuals with a disability throughout all review phases. Databases to be searched include PsycINFO, Cumulative Index of Nursing and Allied Health Literature, Sociological Abstracts, Education Resources Information Center, EMBASE, Web of Science, MEDLINE (Ovid) and SPORTDiscus, from date of inception to November 2020. Studies of programmes designed for siblings of individuals with neurodisabilities, with no exclusion on the age of siblings or context, and published in English will be included. Extracted data will include details of programme structure and content, eligibility criteria and participants, context, study methods and outcomes. A summary of the results will be presented in a tabular form to provide an overview of the programmes with an accompanying narrative summary to address the research questions of this review. DISSEMINATION: Findings from this review will be shared using dissemination strategies in partnership with the Sibling Youth Advisory Council. We will share the findings with key stakeholders such as healthcare providers, researchers, and patient and family advocacy groups.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjopen-2021-053184" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-053184</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
2030 SE2 - Parent Perspectives
Adolescent
Bmj Open
Bootsma J
developmental neurology & neurodisability
Di Rezze B
Disabled Persons
education & training (see medical education & training)
Gorter JW
Health Personnel
Humans
Jack S
Ketelaar M
Male
Nguyen L
Paediatrics
Review Literature as Topic
Siblings
-
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
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
2025 SE2 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1590/1983-1447.2022.20220129.en" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1590/1983-1447.2022.20220129.en</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
“He is normal”: phenomenological considerations of child/adolescent’s perception of the disabled sibling
Publisher
An entity responsible for making the resource available
Revista Gaúcha de Enfermagem
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Adolescent; Child; Disabled Persons; Female; Humans; Learning; Male; Perception; Qualitative Research; Siblings
Creator
An entity primarily responsible for making the resource
Freitag VL; Motta MdGC; Milbrath VM; Bazzan JS; Debatin G; Gabatz RIB
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1590/1983-1447.2022.20220129.en" target="_blank" rel="noreferrer noopener">10.1590/1983-1447.2022.20220129.en</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).
2022
2025 SE2 - Parent Perspectives
Adolescent
Bazzan JS
Child
Debatin G
Disabled Persons
Female
Freitag VL
Gabatz RIB
Humans
Learning
Male
Milbrath VM
Motta MdGC
Perception
Qualitative Research
Revista Gaúcha De Enfermagem
Siblings
-
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/10.1212/WNL.0b013e318237f649" target="_blank" rel="noreferrer noopener">http://doi.org/10.1212/WNL.0b013e318237f649</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
Quantifying physical decline in juvenile neuronal ceroid lipofuscinosis (Batten disease)
Publisher
An entity responsible for making the resource available
Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Cross-Sectional Studies; Disease Progression; Young Adult; Child; Humans; Adult; Prospective Studies; Adolescent; Child Preschool; Regression Analysis; Reproducibility of Results; Analysis of Variance; Neuropsychological Tests; Mutation; Disabled Persons; Genotype; Homozygote; Membrane Glycoproteins; Molecular Chaperones; Neuronal Ceroid-Lipofuscinoses; tone and motor problems; NCL3; tool development; scale development; UBDRS
Creator
An entity primarily responsible for making the resource
Kwon J M; Adams H; Rothberg P G; Augustine E F; Marshall F J; Deblieck E A; Vierhile A; Beck C A; Newhouse N J; Cialone J; Levy E; Ramirez-Montealegre D; Dure L S; Rose K R; Mink J W
Description
An account of the resource
OBJECTIVE: To use the Unified Batten Disease Rating Scale (UBDRS) to measure the rate of decline in physical and functional capability domains in patients with juvenile neuronal ceroid lipofuscinosis (JNCL) or Batten disease, a neurodegenerative lysosomal storage disorder. We have evaluated the UBDRS in subjects with JNCL since 2002; during that time, the scale has been refined to improve reliability and validity. Now that therapies are being proposed to prevent, slow, or reverse the course of JNCL, the UBDRS will play an important role in quantitatively assessing clinical outcomes in research trials. METHODS: We administered the UBDRS to 82 subjects with JNCL genetically confirmed by CLN3 mutational analysis. Forty-four subjects were seen for more than one annual visit. From these data, the rate of physical impairment over time was quantified using multivariate linear regression and repeated-measures analysis. RESULTS: The UBDRS Physical Impairment subscale shows worsening over time that proceeds at a quantifiable linear rate in the years following initial onset of clinical symptoms. This deterioration correlates with functional capability and is not influenced by CLN3 genotype. CONCLUSION: The UBDRS is a reliable and valid instrument that measures clinical progression in JNCL. Our data support the use of the UBDRS to quantify the rate of progression of physical impairment in subjects with JNCL in clinical trials.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1212/WNL.0b013e318237f649" target="_blank" rel="noreferrer noopener">10.1212/WNL.0b013e318237f649</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).
2011
Adams H
Adolescent
Adult
Analysis of Variance
Augustine E F
Beck C A
Child
Child Preschool
Cialone J
Cross-sectional Studies
Deblieck E A
Disabled Persons
Disease Progression
Dure L S
Genotype
Homozygote
Humans
Kwon J M
Levy E
Marshall F J
Membrane Glycoproteins
Mink J W
Molecular Chaperones
Mutation
NCL3
Neurology
Neuronal Ceroid-Lipofuscinoses
Neuropsychological Tests
Newhouse N J
Prospective Studies
Ramirez-Montealegre D
Regression Analysis
Reproducibility of Results
Rose K R
Rothberg P G
scale development
tone and motor problems
tool development
UBDRS
Vierhile 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/10.1002/mds.27129" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/mds.27129</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
Clinical rating scale for pantothenate kinase-associated neurodegeneration: A pilot study
Publisher
An entity responsible for making the resource available
Movement Disorders
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Cross-Sectional Studies; Middle Aged; Aged; Young Adult; Child; Humans; Adult; Adolescent; Disabled Persons; Reproducibility of Results; Pilot Projects; Mental Disorders/et [Etiology]; Severity of Illness Index; Dystonia/di [Diagnosis]; Pantothenate Kinase-Associated Neurodegeneration/di [Diagnosis]; Parkinsonian Disorders/di [Diagnosis]; Cognitive Dysfunction/di [Diagnosis]; Cognitive Dysfunction/et [Etiology]; Dystonia/et [Etiology]; Mental Disorders/di [Diagnosis]; Ocular Motility Disorders/di [Diagnosis]; Ocular Motility Disorders/et [Etiology]; Pantothenate Kinase-Associated Neurodegeneration/co [Complications]; Pantothenate Kinase-Associated Neurodegeneration/ge [Genetics]; Parkinsonian Disorders/et [Etiology]; behavior; tone and motor problems; IND; tool development; scale development; PKANDRS;
Creator
An entity primarily responsible for making the resource
Darling A; Tello C; Marti M J; Garrido C; Aguilera-Albesa S; Tomas V M; Gaston I; Madruga M; Gonzalez G L; Ramos L J; Pujol M; Gavilan I T; Tustin K; Lin J P; Zorzi G; Nardocci N; Martorell L; Lorenzo S G; Gutierrez F; Garcia P J; Vela L; Hernandez L C; Ortigoza E J D; Marti S L; Moreira F; Coelho M; Correia G L; Castro C A; Ferreira J; Pires P; Costa C; Rego P; Magalhaes M; Stamelou M; Cuadras P D; Rodriguez-Blazquez C; Martinez-Martin P; Lupo V; Stefanis L; Pons R; Espinos C; Temudo T; Perez D B
Description
An account of the resource
BACKGROUND: Pantothenate kinase-associated neurodegeneration is a progressive neurological disorder occurring in both childhood and adulthood. The objective of this study was to design and pilot-test a disease-specific clinical rating scale for the assessment of patients with pantothenate kinase-associated neurodegeneration. METHODS: In this international cross-sectional study, patients were examined at the referral centers following a standardized protocol. The motor examination was filmed, allowing 3 independent specialists in movement disorders to analyze 28 patients for interrater reliability assessment. The scale included 34 items (maximal score, 135) encompassing 6 subscales for cognition, behavior, disability, parkinsonism, dystonia, and other neurological signs. RESULTS: Forty-seven genetically confirmed patients (30 +/- 17 years; range, 6-77 years) were examined with the scale (mean score, 62 +/- 21; range, 20-106). Dystonia with prominent cranial involvement and atypical parkinsonian features were present in all patients. Other common signs were cognitive impairment, psychiatric features, and slow and hypometric saccades. Dystonia, parkinsonism, and other neurological features had a moderate to strong correlation with disability. The scale showed good internal consistency for the total scale (Cronbach's alpha = 0.87). On interrater analysis, weighted kappa values (0.30-0.93) showed substantial or excellent agreement in 85% of the items. The scale also discriminated a subgroup of homozygous c.1583C>T patients with lower scores, supporting construct validity for the scale. CONCLUSIONS: The proposed scale seems to be a reliable and valid instrument for the assessment of pediatric and adult patients with pantothenate kinase-associated neurodegeneration. Additional validation studies with a larger sample size will be required to confirm the present results and to complete the scale validation testing. © 2017 International Parkinson and Movement Disorder Society.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/mds.27129" target="_blank" rel="noreferrer noopener">10.1002/mds.27129</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adolescent
Adult
Aged
Aguilera-Albesa S
Behavior
Castro C A
Child
Coelho M
Cognitive Dysfunction/di [Diagnosis]
Cognitive Dysfunction/et [Etiology]
Correia G L
Costa C
Cross-sectional Studies
Cuadras P D
Darling A
Disabled Persons
dystonia/di [Diagnosis]
Dystonia/et [Etiology]
Espinos C
Ferreira J
Garcia P J
Garrido C
Gaston I
Gavilan I T
Gonzalez G L
Gutierrez F
Hernandez L C
Humans
IND
Lin J P
Lorenzo S G
Lupo V
Madruga M
Magalhaes M
Marti M J
Marti S L
Martinez-Martin P
Martorell L
Mental Disorders/di [Diagnosis]
Mental Disorders/et [Etiology]
Middle Aged
Moreira F
Movement Disorders
Nardocci N
Ocular Motility Disorders/di [Diagnosis]
Ocular Motility Disorders/et [Etiology]
Ortigoza E J D
Pantothenate Kinase-Associated Neurodegeneration/co [Complications]
Pantothenate Kinase-Associated Neurodegeneration/di [Diagnosis]
Pantothenate Kinase-Associated Neurodegeneration/ge [Genetics]
Parkinsonian Disorders/di [Diagnosis]
Parkinsonian Disorders/et [Etiology]
Perez D B
Pilot Projects
Pires P
PKANDRS
Pons R
Pujol M
Ramos L J
Rego P
Reproducibility of Results
Rodriguez-Blazquez C
scale development
Severity Of Illness Index
Stamelou M
Stefanis L
Tello C
Temudo T
Tomas V M
tone and motor problems
tool development
Tustin K
Vela L
Young Adult
Zorzi G
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1111/dmcn.12519" target="_blank" rel="noreferrer">http://doi.org/10.1111/dmcn.12519</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
Recent trends in cerebral palsy survival. Part II: individual survival prognosis
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
2014
Subject
The topic of the resource
adolescent; Child; Female; Humans; infant; Male; Young Adult; Adult; mortality; Prognosis; Disabled Persons; California; Cerebral Palsy; Kaplan-Meier Estimate; Preschool; Life Expectancy
Creator
An entity primarily responsible for making the resource
Brooks JC; Strauss DJ; Shavelle RM; Tran Linh M; Rosenbloom L; Wu YW
Description
An account of the resource
AIM: The aim of the study was to determine survival probabilities and life expectancies for individuals with cerebral palsy based on data collected over a 28-year period in California. METHOD: We identified all individuals with cerebral palsy, aged 4 years or older, who were clients of the California Department of Developmental Services between 1983 and 2010. Kaplan-Meier survival curves were constructed for 4-year-old children, and the estimated survival probabilities were adjusted to reflect trends in mortality by calendar year. For persons aged 15, 30, 45, and 60 years, separate Poisson regression models were used to estimate age-, sex-, and disability-specific mortality rates. These mortality rates were adjusted to reflect trends of improved survival, and life expectancies were obtained using life table methods. RESULTS: The sample comprised 16,440, 14,609, 11,735, 7023, and 2375 persons at ages 4, 15, 30, 45, and 60 years, respectively. In 1983, 50% of 4-year-old children who did not lift their heads in the prone position and were tube fed lived to age 10.9 years. By 2010, the median age at death had increased to 17.1 years. In ambulatory children the probability of survival to adulthood did not change by more than 1%. Life expectancies for adolescents and adults were lower for those with more severe limitations in motor function and feeding skills, and decreased with advancing age. Life expectancies for tube-fed adolescents and adults increased by 1 to 3 years, depending on age and pattern of disability, over the course of the study period. INTERPRETATION: Over the past three decades in California there have been significant improvements in the survival of children with very severe disabilities. There have also been improvements to the life expectancy of tube-fed adults, though to a lesser extent than in children.
2014-11
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/dmcn.12519" target="_blank" rel="noreferrer">10.1111/dmcn.12519</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
2014
Adolescent
Adult
Backlog
Brooks JC
California
Cerebral Palsy
Child
Developmental Medicine and Child Neurology
Disabled Persons
Female
Humans
Infant
Journal Article
Kaplan-Meier Estimate
Life Expectancy
Male
Mortality
Preschool
Prognosis
Rosenbloom L
Shavelle RM
Strauss DJ
Tran Linh M
Wu YW
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/10.1001/archpedi.160.2.178" target="_blank" rel="noreferrer">http://doi.org/10.1001/archpedi.160.2.178</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
Access to health care for young adults with disabling chronic conditions
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
2006
Subject
The topic of the resource
Female; Humans; Male; United States; Adult; Disabled Persons; Needs Assessment; Adolescent Transitions; Chronic Disease/economics; Health; Health Services Accessibility/economics/statistics & numerical data; Insurance; Medically Uninsured/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Callahan ST; Cooper WO
Description
An account of the resource
OBJECTIVE: To assess health insurance status and health care access of young adults with disabilities attributable to a chronic condition. DESIGN AND SETTING: We analyzed data from the National Health Interview Survey from 1999 to 2002. We present bivariate analysis and multiple logistic regression of reported health care access barriers in the United States stratified by health insurance status. PARTICIPANTS: The study population included 1109 survey respondents with and 22 481 without disabling chronic conditions, aged 19 to 29 years. MAIN OUTCOME MEASURES: Delayed or unmet health needs owing to cost, no contact with a health professional in the prior year, and no usual source of care. RESULTS: Thirty-five percent of respondents with and 15% without disabling chronic conditions reported an unmet health care need owing to cost (P< .001). Uninsurance rates for young adults with and without disabling chronic conditions were similar (26% vs 28%, respectively), and uninsurance was significantly associated with unmet health care needs. More than two thirds of uninsured respondents with a disabling chronic condition reported an unmet health need and 45% reported no usual source of care. After adjusting for sociodemographic factors, uninsured young adults with disabling chronic conditions had 8 times greater odds of reporting unmet health care needs and 6 times greater odds of having no usual source of care relative to insured respondents with disabling chronic conditions. CONCLUSIONS: Despite increasing attention to issues of health care transition for young adults with disabling chronic conditions, this study suggests that uninsurance is as common among these young adults as nondisabled peers and is significantly associated with health care access barriers in this population.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/archpedi.160.2.178" target="_blank" rel="noreferrer">10.1001/archpedi.160.2.178</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
2006
Adolescent Transitions
Adult
Archives Of Pediatrics & Adolescent Medicine
Backlog
Callahan ST
Chronic Disease/economics
Cooper WO
Disabled Persons
Female
Health
Health Services Accessibility/economics/statistics & numerical data
Humans
Insurance
Journal Article
Male
Medically Uninsured/statistics & numerical data
Needs Assessment
United States
-
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/10.1080/15325020500358274" target="_blank" rel="noreferrer">http://doi.org/10.1080/15325020500358274</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
Posttraumatic growth in mothers of children with acquired disabilities.
Publisher
An entity responsible for making the resource available
Journal Of Loss And Trauma
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Parents; Mother-Child Relations; Disabled Persons; Longitudinal Studies; Stress Disorders; disabled children; Post-Traumatic; Disabilities; Disability; mothers; Maternal Behavior; Posttraumatic growth; Post-Traumatic; Posttraumatic growth
Creator
An entity primarily responsible for making the resource
Konrad SC
Description
An account of the resource
Stress, burden, and sorrow are not surprising responses for mothers of children who acquire life-altering disabilities. What is largely unforeseen is how maternal caregivers transform in positive ways through trauma and diversity. This article offers first person accounts from mothers about elements of posttraumatic growth that unexpectedly emerged and coexisted with the rigors and emotional strains of raising their newly physically challenged children. Also noted is the unanticipated potential for growth that occurs in the process of conducting “insider†research.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/15325020500358274" target="_blank" rel="noreferrer">10.1080/15325020500358274</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
2006
Backlog
Disabilities
Disability
Disabled Children
Disabled Persons
Journal Article
Journal of Loss and Trauma
Konrad SC
Longitudinal Studies
Maternal Behavior
Mother-child Relations
Mothers
Parents
Post-traumatic
Posttraumatic Growth
Stress Disorders
-
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/10.1212/01.wnl.0000198776.53007.2c" target="_blank" rel="noreferrer">http://doi.org/10.1212/01.wnl.0000198776.53007.2c</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
Course of disability and respiratory function in untreated late-onset Pompe disease
Publisher
An entity responsible for making the resource available
Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; Questionnaires; Follow-Up Studies; Aged; Middle Aged; Disease Progression; Disabled Persons; Time Factors; adolescent; Preschool; 80 and over; Q3 Literature Search; Age of Onset; Respiratory Function Tests; Glycogen Storage Disease Type II/physiopathology
Creator
An entity primarily responsible for making the resource
Hagemans ML; Hop WJ; Van Doorn PA; Reuser AJ; Van der Ploeg AT
Description
An account of the resource
Fifty-two untreated patients with late-onset Pompe disease completed questionnaires about their clinical condition and level of handicap at baseline and at 1-year (n = 41) and 2-year follow-ups (n = 40). During this period, declines in functional activities, respiratory function, handicap, and survival were recorded on a group level. This study illustrates the progressiveness of late-onset Pompe disease and indicates the need for close clinical follow-up of both children and adults with this disorder.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1212/01.wnl.0000198776.53007.2c" target="_blank" rel="noreferrer">10.1212/01.wnl.0000198776.53007.2c</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
2006
80 And Over
Adolescent
Adult
Age of Onset
Aged
Backlog
Child
Disabled Persons
Disease Progression
Female
Follow-up Studies
Glycogen Storage Disease Type II/physiopathology
Hagemans ML
Hop WJ
Humans
Journal Article
Male
Middle Aged
Neurology
Preschool
Q3 Scoping Review Results
Questionnaires
Respiratory Function Tests
Reuser AJ
Time Factors
Van der Ploeg AT
Van Doorn PA
-
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/10.1542/peds.2004-1321" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2004-1321</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 care transition: youth, family, and provider perspectives
Publisher
An entity responsible for making the resource available
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
Female; Humans; Male; Physician-Patient Relations; Family; Adult; Attitude to Health; Attitude of Health Personnel; Interdisciplinary Communication; Disabled Persons; Health Services Research; Focus Groups; Continuity of Patient Care; Patient Care Planning; Family Practice; adolescent; Adolescent Transitions; Health; Insurance; Chronic Disease/therapy; Adolescent Health Services/organization & administration; Delivery of Health Care/organization & administration; Pediatrics/organization & administration; Adolescent Medicine/organization & administration; CHIR Best Practices; Insurance Coverage
Creator
An entity primarily responsible for making the resource
Reiss JG; Gibson RW; Walker LR
Description
An account of the resource
OBJECTIVE: This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care providers? What are promising practices that facilitate successful HCT? What are obstacles that inhibit HCT? METHODS: A qualitative approach was used to investigate these questions. Focus group interviews were conducted. Content and narrative analyses of interview transcripts were completed using ATLAS.ti. RESULTS: Thirty-four focus groups and interviews were conducted with 143 young adults with disabilities and special health care needs, family members, and health care providers. Content analysis yielded 3 content domains: transition services, which presents a chronological understanding of the transition process; health care systems, which presents differences between pediatric and adult-oriented medicine and how these differences inhibit transition; and transition narratives, which discusses transition experience in the broader context of relationships between patients and health care providers. CONCLUSION: This study demonstrated the presence of important reciprocal relationships that are based on mutual trust between providers and families and are developed as part of the care of chronically ill children. Evidence supports the need for appropriate termination of pediatric relationships as part of the transition process. Evidence further supports the idea that pediatric and adult-oriented medicines represent 2 different medical subcultures. Young adults' and family members' lack of preparation for successful participation in the adult health care system contributes to problems with HCT.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2004-1321" target="_blank" rel="noreferrer">10.1542/peds.2004-1321</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2005
Adolescent
Adolescent Health Services/organization & administration
Adolescent Medicine/organization & administration
Adolescent Transitions
Adult
Attitude Of Health Personnel
Attitude To Health
Backlog
CHIR Best Practices
Chronic Disease/therapy
Continuity Of Patient Care
Delivery of Health Care/organization & administration
Disabled Persons
Family
Family Practice
Female
Focus Groups
Gibson RW
Health
Health Services Research
Humans
Insurance
Insurance Coverage
Interdisciplinary Communication
Journal Article
Male
Patient Care Planning
Pediatrics
Pediatrics/organization & Administration
Physician-patient Relations
Reiss JG
Walker LR
-
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.156.11.1138" target="_blank" rel="noreferrer">http://doi.org/10.1001/archpedi.156.11.1138</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
Physical functioning in female caregivers of children with physical disabilities compared with female caregivers of children with a chronic medical condition
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
2002
Subject
The topic of the resource
Child; Cross-Sectional Studies; Female; Humans; Adult; Aged; Middle Aged; Disabled Persons; Regression Analysis; Caregivers/psychology; Chronic disease; Back Pain/etiology; Depression/etiology; Mothers/psychology; Physical Fitness
Creator
An entity primarily responsible for making the resource
Tong HC; Kandala G; Haig AJ; Nelson VS; Yamakawa KS; Shin KY
Description
An account of the resource
OBJECTIVES: To evaluate if physical functioning is different in female caregivers of children with physical disabilities compared with female caregivers of children with nondisabling medical illnesses, and to investigate the factors associated with functioning level. DESIGN: Cross-sectional survey. SETTING: University-based clinics. PATIENTS: Ninety consecutive female caregivers of children presenting to a pediatric physical medicine and rehabilitation (PM&R) clinic, and 23 presenting to a pediatric endocrine clinic. INTERVENTION: Fifteen-minute self-administered survey. MAIN OUTCOME MEASURES: The dependent variable measured was physical functioning (physical functioning subscale of the Short Form-36). Independent variables measured were the average back pain severity over the last week (100-mm visual analog scale), mood (using the Center for Epidemiologic Studies-Depression Scale), work status, amount of lifting at work, caregiver demographics, child demographics, and the physical functioning ability of the child (measured using the WeeFIM scale). RESULTS: The mean (SD) physical functioning score of caregivers of children in the pediatric PM&R clinic was 80.6 (21.9), which was less than the score of 90.2 (17.6) for caregivers in the pediatric endocrine clinic (mean difference, 9.6; 95% confidence interval, -0.9 to -18.4). The physical functioning score of 77.7 (22.9) in caregivers of PM&R clinic children with a WeeFIM scale score of 1 to 4 was significantly worse than the 90.5 (14.8) in female caregivers of children with a WeeFIM score of 5 to 7 (mean difference, 12.8; 95% confidence interval, -2.0 to -23.6). This decrease is associated with the average pain severity, mood, and total length of time of back pain in the previous 12 months. Regression analysis shows that pain severity and caregiver mood are significantly related to the physical functioning status of the caregiver. CONCLUSIONS: Physical functioning is decreased in female caregivers of children with a physical disability. This decrease is associated with caregiver pain severity and mood.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/archpedi.156.11.1138" target="_blank" rel="noreferrer">10.1001/archpedi.156.11.1138</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2002
Adult
Aged
Archives Of Pediatrics & Adolescent Medicine
Back Pain/etiology
Backlog
Caregivers/psychology
Child
Chronic Disease
Cross-sectional Studies
Depression/etiology
Disabled Persons
Female
Haig AJ
Humans
Journal Article
Kandala G
Middle Aged
Mothers/psychology
Nelson VS
Physical Fitness
Regression Analysis
Shin KY
Tong HC
Yamakawa KS
-
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/10.1007/bf00286225" target="_blank" rel="noreferrer">http://doi.org/10.1007/bf00286225</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
Congenital malformations of the central nervous system in a 1-year birth cohort followed to the age of 14 years
Publisher
An entity responsible for making the resource available
Child's Nervous System
Date
A point or period of time associated with an event in the lifecycle of the resource
1986
Subject
The topic of the resource
Child; Humans; infant; Follow-Up Studies; Disabled Persons; adolescent; Preschool; infant; Q3 Literature Search; Newborn; Abnormalities; Central Nervous System/abnormalities; Hydrocephalus/congenital; Meningomyelocele/diagnosis; Multiple/diagnosis
Creator
An entity primarily responsible for making the resource
von Wendt L; Rantakallio P
Description
An account of the resource
A 1-year birth cohort from northern Finland comprised 12,058 children, 96% of all live-born infants born in the region in 1966. The development and morbidity of these children were followed up to the age of 14 years. Altogether, 40 children (25 boys and 15 girls) 3.32 per 1,000 suffered from congenital malformations of the central nervous system (CNS). Fourteen (1.16) had spina bifida cystica, 17 (1.41) hydrocephalus, and 9 (0.75) miscellaneous other malformations. Altogether, 14 children died during the follow-up period, giving a prevalence of 2.21 per 1,000 at 14 years. Additional neurological handicaps, mental retardation, cerebral palsy or epilepsy were present in 23 children, 13 of whom had multiple handicaps. Of these children 26% were able to attend an ordinary school in the class appropriate for their age. It is concluded that the incidences for CNS malformations obtained in this study are very much higher than those reported in the Finnish Register of Congenital Malformations, but correspond very well to the figures obtained in the British 1958 birth cohort, which was studied in an analogous way.
1986
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/bf00286225" target="_blank" rel="noreferrer">10.1007/bf00286225</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
1986
Abnormalities
Adolescent
Backlog
Central Nervous System/abnormalities
Child
Child's Nervous System
Disabled Persons
Follow-up Studies
Humans
Hydrocephalus/congenital
Infant
Journal Article
Meningomyelocele/diagnosis
Multiple/diagnosis
Newborn
Preschool
Q3 Scoping Review Results
Rantakallio P
von Wendt L
-
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/s0387-7604(12)80067-2" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0387-7604(12)80067-2</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
Respiratory function in handicapped children
Publisher
An entity responsible for making the resource available
Brain & Development
Date
A point or period of time associated with an event in the lifecycle of the resource
1990
Subject
The topic of the resource
Child; Female; Male; Posture; adolescent; Preschool; Comparative Study; Human; Recurrence; Brain Damage; Brain Damage; Disabled Persons; Muscular Dystrophies/pp [Physiopathology]; Respiration Disorders/et [Etiology]; Tidal Volume; Vital Capacity; Anoxia/et [Etiology]; Chronic/co [Complications]; Chronic/pp [Physiopathology]; Hypercapnia/et [Etiology]; Motor Skills; Muscular Dystrophies/co [Complications]; Respiratory Tract Infections/et [Etiology]; Spinal Dysraphism/co [Complications]; Spinal Dysraphism/pp [Physiopathology]
Creator
An entity primarily responsible for making the resource
Ishida C; Fujita M; Umemoto H; Taneda M; Sanae N; Tasaki T
Description
An account of the resource
The aim of this study was to evaluate respiratory function of severely handicapped children. Tidal volumes and respiratory rates were determined in a total of 130 children with different clinical motor abilities. Tidal volume of non-sitters (n = 39) was significantly lower than ambulators (n = 49) or sitters (n = 42) (p less than 0.01). There was no difference in respiratory rate among the three groups. Among 45 children whose vital capacity could be determined, the tidal volumes showed a significant correlation with vital capacity (r = 0.56, p less than 0.001). Among four children whose tidal volume was less than 200 ml and respiratory rate was more than 30 cpm, blood gas analysis revealed hypoxia in three of them. The tidal volumes, therefore, would be a useful guide to estimate respiratory functions. It was concluded that the respiratory function in a non-sitter with reduced tidal volume is impaired, and that preventive measures must be taken against respiratory infection.
1990
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0387-7604(12)80067-2" target="_blank" rel="noreferrer">10.1016/s0387-7604(12)80067-2</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
1990
Adolescent
Anoxia/et [Etiology]
Backlog
Brain & Development
Brain Damage
Child
Chronic/co [Complications]
Chronic/pp [Physiopathology]
Comparative Study
Disabled Persons
Female
Fujita M
Human
Hypercapnia/et [Etiology]
Ishida C
Journal Article
Male
Motor Skills
Muscular Dystrophies/co [Complications]
Muscular Dystrophies/pp [Physiopathology]
Posture
Preschool
Recurrence
Respiration Disorders/et [Etiology]
Respiratory Tract Infections/et [Etiology]
Sanae N
Spinal Dysraphism/co [Complications]
Spinal Dysraphism/pp [Physiopathology]
Taneda M
Tasaki T
Tidal Volume
Umemoto H
Vital Capacity
-
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/10.1097/00005650-198107000-00005" target="_blank" rel="noreferrer">http://doi.org/10.1097/00005650-198107000-00005</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
Seeing the Same Doctor: Determinants of Satisfaction with Specialty Care for Disabled Children
Publisher
An entity responsible for making the resource available
Medical Care
Date
A point or period of time associated with an event in the lifecycle of the resource
1981
Subject
The topic of the resource
Child; Humans; Physician-Patient Relations; Health Services Accessibility; Socioeconomic Factors; Disabled Persons; Continuity of Patient Care; Regression Analysis; Primary Health Care; Personal Satisfaction; adolescent; Miller 2009 BMC HSR Refs; Process Mapping; Ohio
Creator
An entity primarily responsible for making the resource
Breslau N; Mortimer EA
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00005650-198107000-00005" target="_blank" rel="noreferrer">10.1097/00005650-198107000-00005</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
1981
1981
Adolescent
Backlog
Breslau N
Child
Continuity Of Patient Care
Disabled Persons
Health Services Accessibility
Humans
Journal Article
Medical Care
Miller 2009 BMC HSR Refs
Mortimer EA
Ohio
Personal Satisfaction
Physician-patient Relations
Primary Health Care
Process Mapping
Regression Analysis
Socioeconomic Factors
-
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/10.1097/00005650-198204000-00001" target="_blank" rel="noreferrer">http://doi.org/10.1097/00005650-198204000-00001</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
Continuity Reexamined: Differential Impact on Satisfaction with Medical Care for Disabled and Normal Children
Publisher
An entity responsible for making the resource available
Medical Care
Date
A point or period of time associated with an event in the lifecycle of the resource
1982
Subject
The topic of the resource
Child; Humans; Physician-Patient Relations; Questionnaires; Disabled Persons; Continuity of Patient Care; Consumer Satisfaction; Regression Analysis; adolescent; Preschool; Miller 2009 BMC HSR Refs; Process Mapping; Ohio; Primary Health Care/standards
Creator
An entity primarily responsible for making the resource
Breslau N
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00005650-198204000-00001" target="_blank" rel="noreferrer">10.1097/00005650-198204000-00001</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
1982
1982
Adolescent
Backlog
Breslau N
Child
Consumer Satisfaction
Continuity Of Patient Care
Disabled Persons
Humans
Journal Article
Medical Care
Miller 2009 BMC HSR Refs
Ohio
Physician-patient Relations
Preschool
Primary Health Care/standards
Process Mapping
Questionnaires
Regression Analysis
-
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/10.1097/00005650-198404000-00003" target="_blank" rel="noreferrer">http://doi.org/10.1097/00005650-198404000-00003</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
Use of health services by chronically ill and disabled children
Publisher
An entity responsible for making the resource available
Medical Care
Date
A point or period of time associated with an event in the lifecycle of the resource
1984
Subject
The topic of the resource
Child; Hospitalization; Humans; Socioeconomic Factors; Disabled Persons; School Nursing; adolescent; Preschool; Chronic disease; Statistics as Topic; Process Mapping; Child Health Services/utilization; Ohio; Dental Health Services/utilization; Mental Health Services/utilization; Occupational Therapy/utilization; Physical Therapy Modalities/utilization; Physicians/utilization; Social Work/utilization; Speech Therapy/utilization
Creator
An entity primarily responsible for making the resource
Smyth-Staruch K; Breslau N; Weitzman M; Gortmaker S
Description
An account of the resource
Hospitalization and use of outpatient health care services during a 1-year period by 369 pediatric patients with cystic fibrosis, cerebral palsy, myelodysplasia, or multiple physical handicaps and 456 randomly selected children without congenital conditions from the Cleveland area were examined. Use of hospitalization and outpatient services by the average chronically ill or disabled child was 10 times that of the average comparison child. Physician specialists, occupational and physical therapists, and school nurses were the major outpatient categories used disproportionately by children with chronic illnesses or disabilities. The major share of health care used by children with chronic conditions was attributable to a small subset of children: All hospital care was accounted for by one third of the children, and three quarters of all outpatient care was accounted for by one quarter of that sample. Hospital care was used at similar rates by the four diagnostic groups. However, amount and type of outpatient care varied by diagnosis, level of functional impairment, race, and income. Estimated average expenditure for health services used by the chronically ill or disabled sample was 10 times that of the comparison sample. Relative distribution of estimated expenditures across types of services differed for the two samples as well as among diagnostic categories.
1984
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00005650-198404000-00003" target="_blank" rel="noreferrer">10.1097/00005650-198404000-00003</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
1984
Adolescent
Backlog
Breslau N
Child
Child Health Services/utilization
Chronic Disease
Dental Health Services/utilization
Disabled Persons
Gortmaker S
Hospitalization
Humans
Journal Article
Medical Care
Mental Health Services/utilization
Occupational Therapy/utilization
Ohio
Physical Therapy Modalities/utilization
Physicians/utilization
Preschool
Process Mapping
School Nursing
Smyth-Staruch K
Social Work/utilization
Socioeconomic Factors
Speech Therapy/utilization
Statistics as Topic
Weitzman 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/10.1136/jme.12.2.72" target="_blank" rel="noreferrer">http://doi.org/10.1136/jme.12.2.72</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
Informed dissent: the views of some mothers of severely mentally handicapped young adults
Publisher
An entity responsible for making the resource available
Journal Of Medical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
1986
Subject
The topic of the resource
Female; Humans; infant; Adult; Middle Aged; Euthanasia; Disabled Persons; Informed Consent; Patient Compliance; Empirical Approach; Mental Health Therapies; Death and Euthanasia; Mothers/psychology; Newborn; Genetics and Reproduction; Passive; Value of Life; Abortion; Congenital Abnormalities/therapy; Induced
Creator
An entity primarily responsible for making the resource
Simms M
Description
An account of the resource
Much of the discussion since the Arthur case has centred round the rights of handicapped infants to medical treatment. Little has centred round the question of how far one person can rightly be required to sacrifice her life for another, when she has not been consulted beforehand. This may be due to the fact that most of the discussants are men, while nearly all the carers are women. This small study attempts to redress this balance by asking mothers who have cared for 20 years, whether they felt it was worthwhile.; KIE: As part of a larger study by a British regional health authority, 15 mothers of severely mentally handicapped young adults from varying socioeconomic areas were asked for their views on selective abortion and treatment of severely handicapped newborns. Ten of the 15 women wished with hindsight that they could have had an abortion, and 12 thought such infants should be allowed to die. Simms concludes that the views of those who have cared devotedly for their severely mentally handicapped children deserve more consideration. Davis, herself disabled and an activist for the handicapped, asserts that human rights devolve to every individual at fertilization and cannot be apportioned according to perceived "worth." She suggests that parents who are unable to cope with a handicapped child should consider offering the baby for adoption as an alternative to "killing" the child.
1986
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/jme.12.2.72" target="_blank" rel="noreferrer">10.1136/jme.12.2.72</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
1986
Abortion
Adult
Backlog
Congenital Abnormalities/therapy
Death and Euthanasia
Disabled Persons
Empirical Approach
Euthanasia
Female
Genetics and Reproduction
Humans
Induced
Infant
Informed Consent
Journal Article
Journal of Medical Ethics
Mental Health Therapies
Middle Aged
Mothers/psychology
Newborn
Passive
Patient Compliance
Simms M
Value of Life
-
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/10.1016/1054-139X(95)00077-6" target="_blank" rel="noreferrer">http://doi.org/10.1016/1054-139X(95)00077-6</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
Between two worlds: bridging the cultures of child health and adult medicine
Publisher
An entity responsible for making the resource available
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
1995
Subject
The topic of the resource
Child; Humans; United States; Physician-Patient Relations; Adult; Disabled Persons; Patient Participation; Continuity of Patient Care; Survivors; patient care team; decision making; Adolescent Transitions; Chronic disease; Delivery of Health Care/organization & administration; Internal Medicine/organization & administration; Pediatrics/organization & administration
Creator
An entity primarily responsible for making the resource
Rosen D
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/1054-139X(95)00077-6" target="_blank" rel="noreferrer">10.1016/1054-139X(95)00077-6</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
1995
1995
Adolescent Transitions
Adult
Backlog
Child
Chronic Disease
Continuity Of Patient Care
Decision Making
Delivery of Health Care/organization & administration
Disabled Persons
Humans
Internal Medicine/organization & administration
Journal Article
Patient Care Team
Patient Participation
Pediatrics/organization & Administration
Physician-patient Relations
Rosen D
Survivors
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
United States
-
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/s0003-9993(97)90302-6" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0003-9993(97)90302-6</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
Interrater agreement and stability of the Functional Independence Measure for Children (WeeFIM): Use in children with developmental disabilities.
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
1997
Subject
The topic of the resource
Child; Humans; Disabled Persons; Longitudinal Studies; Activities of Daily Living; Observer Variation; Health Status Indicators; Disability Evaluation; Preschool; infant
Creator
An entity primarily responsible for making the resource
Ottenbacher KJ; Msall ME; Lyon NR; Duffy LC; Granger CV; Braun S
Description
An account of the resource
OBJECTIVE: Examination of the interrater agreement and stability of ratings obtained using the Functional Independence Measure for Children (WeeFIM) in a sample of children with developmental disabilities. DESIGN: A relational design was used in which two sets of WeeFIM scores were collected under four conditions: same rater-short interval; same rater-long interval; different rater-short interval; and different rater-long interval. SETTING: WeeFIM scores were collected in outpatient developmental rehabilitation centers, school programs, and the children's homes. PARTICIPANTS: Data were collected for 205 children ranging in age from 11 to 87 months. All children had a medical diagnosis of disability and were receiving habilitative-educational intervention or follow-along services including neurodevelopmental surveillance. INSTRUMENT: The WeeFIM instrument examines basic daily living and functional skills in children from birth to 7 years of age. The WeeFIM is modeled after the Functional Independence Measure (FIM) for adults and includes 18 items in the following subscales: self-care, sphincter control, transfers, locomotion, communication, and social cognition. RESULTS: Kappa values for items ranged from .44 to .82. Intraclass correlation coefficients (ICC) for the six subscales ranged from .73 to .98. Total WeeFIM ICC values were greater than .95 for all analyses. CONCLUSIONS: The WeeFIM ratings for the 205 children with developmental disabilities participating in this investigation were consistent across raters and time.
1997
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0003-9993(97)90302-6" target="_blank" rel="noreferrer">10.1016/s0003-9993(97)90302-6</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).
Type
The nature or genre of the resource
Journal Article
1997
Activities of Daily Living
Archives Of Physical Medicine And Rehabilitation
Backlog
Braun S
Child
Disability Evaluation
Disabled Persons
Duffy LC
Granger CV
Health Status Indicators
Humans
Infant
Journal Article
Longitudinal Studies
Lyon NR
Msall ME
Observer Variation
Ottenbacher KJ
Preschool
-
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/s0897-1897(96)80242-4" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0897-1897(96)80242-4</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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Pediatric Functional Independence Measure: Clinical trials with disabled and nondisabled children.
Publisher
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Applied Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
Child; Female; Humans; Male; Disabled Persons; Pediatric Nursing; Longitudinal Studies; Activities of Daily Living; Reproducibility of Results; Case-Control Studies; Preschool; infant; Clinical Nursing Research; Cerebral Palsy/nursing/physiopathology; Neuromuscular Diseases/nursing/physiopathology; Nursing Assessment/methods
Creator
An entity primarily responsible for making the resource
McCabe MA
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0897-1897(96)80242-4" target="_blank" rel="noreferrer">10.1016/s0897-1897(96)80242-4</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
1996
1996
Activities of Daily Living
Applied Nursing Research
Backlog
Case-Control Studies
Cerebral Palsy/nursing/physiopathology
Child
Clinical Nursing Research
Disabled Persons
Female
Humans
Infant
Journal Article
Longitudinal Studies
Male
McCabe MA
Neuromuscular Diseases/nursing/physiopathology
Nursing Assessment/methods
Pediatric Nursing
Preschool
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/10.1093/geront/37.6.785" target="_blank" rel="noreferrer">http://doi.org/10.1093/geront/37.6.785</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
Meaning in caregiving and its contribution to caregiver well-being.
Publisher
An entity responsible for making the resource available
Gerontologist
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Child; Female; Humans; Male; Home Nursing; Adult; Education; Emotions; Aged; Middle Aged; Disabled Persons; Longitudinal Studies; Time Factors; Frail Elderly; Research; Income; Regression Analysis; 80 and over; P.H.S.; Research Support; U.S. Gov't; Caregivers/psychology; Interviews; Comparative Study; Spouses
Creator
An entity primarily responsible for making the resource
Noonan AE; Tennstedt SL
Description
An account of the resource
This multivariate study examined the relationship between meaning in caregiving--positive beliefs about the caregiving situation and the self as caregiver--and the psychological well-being of 131 informal caregivers to community-residing frail elders. Measures of well-being included depression, self-esteem, mastery, role captivity, and loss of self. Meaning in caregiving explained a significant portion of the differences in depression and self-esteem scores even after demographic and stressor variables had been controlled. Meaning was not related to mastery, role captivity, or loss of self. The conceptual parameters of meaning in caregiving are discussed, as are directions for future research.
1997
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/geront/37.6.785" target="_blank" rel="noreferrer">10.1093/geront/37.6.785</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
1997
80 And Over
Adult
Aged
Backlog
Caregivers/psychology
Child
Comparative Study
Disabled Persons
Education
Emotions
Female
Frail Elderly
Gerontologist
Home Nursing
Humans
Income
Interviews
Journal Article
Longitudinal Studies
Male
Middle Aged
Noonan AE
P.H.S.
Regression Analysis
Research
Research Support
Spouses
Tennstedt SL
Time Factors
U.S. Gov't
-
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/10.1097/00005176-199700002-00017" target="_blank" rel="noreferrer">http://doi.org/10.1097/00005176-199700002-00017</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
Diagnostic and therapeutic approach to vomiting and gastroparesis in children with neurological and neuromuscular handicap
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Gastroenterology And Nutrition
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Child; Humans; Disabled Persons; Nervous System Diseases/complications; Gastroparesis/complications/diagnosis/therapy; Neuromuscular Diseases/complications; Vomiting/complications/diagnosis/therapy
Creator
An entity primarily responsible for making the resource
Ravelli AM
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00005176-199700002-00017" target="_blank" rel="noreferrer">10.1097/00005176-199700002-00017</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
1997
1997
Backlog
Child
Disabled Persons
Gastroparesis/complications/diagnosis/therapy
Humans
Journal Article
Journal Of Pediatric Gastroenterology And Nutrition
Nervous System Diseases/complications
Neuromuscular Diseases/complications
Ravelli AM
Vomiting/complications/diagnosis/therapy
-
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/10.1097/00005176-199700002-00018" target="_blank" rel="noreferrer">http://doi.org/10.1097/00005176-199700002-00018</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
Chronic constipation and fecal incontinence in children with neurological and neuromuscular handicap
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Gastroenterology And Nutrition
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Child; Humans; Disabled Persons; Q3 Literature Search; Chronic disease; Nervous System Diseases/complications; Neuromuscular Diseases/complications; Constipation/complications/therapy; Fecal Incontinence/complications/therapy
Creator
An entity primarily responsible for making the resource
Di Lorenzo C
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00005176-199700002-00018" target="_blank" rel="noreferrer">10.1097/00005176-199700002-00018</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
1997
1997
Backlog
Child
Chronic Disease
Constipation/complications/therapy
Di Lorenzo C
Disabled Persons
Fecal Incontinence/complications/therapy
Humans
Journal Article
Journal Of Pediatric Gastroenterology And Nutrition
Nervous System Diseases/complications
Neuromuscular Diseases/complications
Q3 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.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1469-8749.2001.tb00753.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1469-8749.2001.tb00753.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
Life expectancy among people with cerebral palsy in Western Australia
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
2001
Subject
The topic of the resource
Child; Delivery of Health Care; Female; Humans; Male; Adult; Middle Aged; Disabled Persons; Survival Analysis; adolescent; Non-U.S. Gov't; Research Support; cause of death; Life Expectancy; Intelligence; Cerebral Palsy/mortality/pathology; Epidemiologic Studies; Western Australia/epidemiology
Creator
An entity primarily responsible for making the resource
Blair E; Watson L; Badawi N; Stanley FJ
Description
An account of the resource
This report describes trends, predictors, and causes of mortality in persons with cerebral palsy (CP) using individuals identified by the Western Australian Cerebral Palsy Register and born between 1958 and 1994. Two thousand and fourteen people were identified (1154 males, 860 females), of whom 225 had died by 1 June 1997. Using date-of-death data, crude and standardized mortality rates were estimated and predictors of mortality sought using survival analysis stratified by decade of birth, description of impairments, and demographic and perinatal variables. For those born after 1967, the cause of death profile was examined over time. Mortality exceeded 1% per annum in the first 5 years and declined to age 15 years after which it remained steady at about 0.35% for the next 20 years. The strongest single predictor was intellectual disability, but all forms of disability contributed to decreased life expectancy. Half of those with IQ/DQ score <20 survived to adulthood, increasing to 76% with IQ/DQ score 20-34, and exceeding 92% for higher scores. Severe motor impairment primarily increased the risk of early mortality. Despite there being 72 persons aged from 25 to 41 years with severe motor impairment in our data set, none had died after the age of 25 years. Infants born after more than 32 weeks' gestation were at significantly higher risk of mortality than very preterm infants, accounted for by their higher rates of intellectual disability. No improvements in survival of persons with CP were seen over the study period despite advances in medical care, improved community awareness, and the increasing proportion of very preterm births among people with CP. This may be the result of improved neonatal care enabling the survival of infants with increasingly severe disabilities.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1469-8749.2001.tb00753.x" target="_blank" rel="noreferrer">10.1111/j.1469-8749.2001.tb00753.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2001
Adolescent
Adult
Backlog
Badawi N
Blair E
Cause Of Death
Cerebral Palsy/mortality/pathology
Child
Delivery of Health Care
Developmental Medicine and Child Neurology
Disabled Persons
Epidemiologic Studies
Female
Humans
Intelligence
Journal Article
Life Expectancy
Male
Middle Aged
Non-U.S. Gov't
Research Support
Stanley FJ
Survival Analysis
Watson L
Western Australia/epidemiology
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1600-079x.1996.tb00286.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1600-079x.1996.tb00286.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
Use of melatonin in the treatment of paediatric sleep disorders
Publisher
An entity responsible for making the resource available
Journal Of Pineal Research
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
Child; Adult; Disabled Persons; Preschool; infant; Chronic disease; Administration; Oral; Human; Adolescence; Melatonin/tu [Therapeutic Use]; Sleep Disorders/dt [Drug Therapy]; Melatonin/ae [Adverse Effects]
Creator
An entity primarily responsible for making the resource
Jan JE; O'Donnell ME
Description
An account of the resource
A group of Vancouver health professionals, including the authors, have studied the use of oral melatonin in the treatment of chronic sleep disorders in children with disabilities since the Fall of 1991. This review article is based on the first 100 patients, half of whom were visually impaired or blind. Children with neurological, neuropsychiatric, and developmental disabilities are predisposed to chronic sleep-wake cycle disturbances. Disorders such as blindness, deaf-blindness, mental retardation, autism, and central nervous system diseases, among others, diminish the ability of these individuals to perceive and interpret the multitude of cues for synchronizing their sleep with the environment. Melatonin, which benefitted slightly over 80% of our patients, appears to be a safe, inexpensive, and a very effective treatment of sleep-wake cycle disorders. The oral dose of fast release melatonin taken at bed-time ranged from 2.5 mg to 10 mg. Side effects or the development of tolerance have not been observed. Since the causes of sleep difficulties are extremely variable, not all children are candidates for treatment. For successful melatonin treatment, clinical experience is required, and the influences of other health problems and medications need to be considered. Further clinical and laboratory research in this field is imperative because melatonin treatment offers enormous health, emotional, social, and economic benefits to society, especially since multidisabled children with chronic sleep difficulties do not respond well to current therapeutic regimes. [References: 61]
1996
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1600-079x.1996.tb00286.x" target="_blank" rel="noreferrer">10.1111/j.1600-079x.1996.tb00286.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
1996
Administration
Adolescence
Adult
Backlog
Child
Chronic Disease
Disabled Persons
Human
Infant
Jan JE
Journal Article
Journal Of Pineal Research
Melatonin/ae [Adverse Effects]
Melatonin/tu [Therapeutic Use]
O'Donnell ME
Oral
Preschool
Sleep Disorders/dt [Drug Therapy]
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1651-2227.1996.tb14129.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.1996.tb14129.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
Feeding and nutritional characteristics in children with moderate or severe cerebral palsy
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
Child; Female; Humans; Male; Prevalence; Questionnaires; Disabled Persons; Risk Factors; Activities of Daily Living; Case-Control Studies; Non-U.S. Gov't; Research Support; Nutritional Status; Cerebral Palsy/complications; Age Distribution; Nutrition Assessment; Anthropometry; Child Nutrition Disorders/etiology; Eating Disorders/etiology
Creator
An entity primarily responsible for making the resource
Dahl M; Thommessen M; Rasmussen M; Selberg T
Description
An account of the resource
This study was undertaken to characterize the current feeding situation and nutritional status of moderately or severely disabled children with cerebral palsy (CP). Thirty-five children with CP (17 with diplegia, 11 with dystonia, 6 with tetraplegia and one child with ataxia) were investigated at a median age of 8 years. Information was obtained from parental interviews, medical records and clinical and anthropometric examinations. Twenty-one of the 35 children (60%), most of whom were severely disabled, were reported by the parents to have current feeding problems. Anthropometric indicators of undernutrition were found in 15 children (43%) and of overnutrition in 3 children (9%), compared with reference values of healthy children. Severely disabled children in the youngest age group were most at risk for poor nutritional status. Early identification of children at nutritional risk requires regular assessments of feeding skills and nutritional status.
1996
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1651-2227.1996.tb14129.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.1996.tb14129.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
1996
Acta Paediatrica
Activities of Daily Living
Age Distribution
Anthropometry
Backlog
Case-Control Studies
Cerebral Palsy/complications
Child
Child Nutrition Disorders/etiology
Dahl M
Disabled Persons
Eating Disorders/etiology
Female
Humans
Journal Article
Male
Non-U.S. Gov't
Nutrition Assessment
Nutritional Status
Prevalence
Questionnaires
Rasmussen M
Research Support
Risk Factors
Selberg T
Thommessen 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/10.1111/j.1651-2227.1997.tb08955.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.1997.tb08955.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
Nutrition in disabled children
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Child; Humans; Disabled Persons; Nutritional Status; Quadriplegia/complications; Deglutition Disorders/complications; Nutrition Disorders/etiology
Creator
An entity primarily responsible for making the resource
Stathopolou E; Thomas AG
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1651-2227.1997.tb08955.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.1997.tb08955.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
1997
1997
Acta Paediatrica
Backlog
Child
Deglutition Disorders/complications
Disabled Persons
Humans
Journal Article
Nutrition Disorders/etiology
Nutritional Status
Quadriplegia/complications
Stathopolou E
Thomas AG