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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2023 Special Edition 4 - Parent Perspectives List
Text
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Citation List Month
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1111/jocn.15368" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jocn.15368</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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The views and experiences of fathers regarding their young child's intellectual and developmental disability diagnosis: Findings from a qualitative study.
Publisher
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Journal of Clinical Nursing
Date
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2020
Subject
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Humans; Child; Child, Preschool; Female; Male; Middle Aged; Adult; Qualitative Research; Attitude of Health Personnel; Developmental Disabilities/di [Diagnosis]; Intellectual Disability/di [Diagnosis]; *Fathers/px [Psychology]; *Intellectual Disability/px [Psychology]; *Developmental Disabilities/px [Psychology]
Creator
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Marsh, Lynne; Brown, Michael; McCann, Edward
Description
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AIMS AND OBJECTIVES: To report the views and experiences of fathers following their child's diagnosis of an intellectual and developmental disability (IDD)., BACKGROUND: There is a growing interest in understanding the experiences of fathers of children with IDD given the transformation of the structural change of fathers' roles within the family and wider society., DESIGN: A qualitative design was used to elicit the view and experiences of fathers., METHODS: A total of ten Irish fathers participated in face-to-face interviews. The data were thematically analysed. The COREQ guidelines for reporting qualitative studies were used in the development of this paper., RESULTS: The key themes that emerged were (a) the confirmation of the child's diagnosis (b) the impact of the diagnosis and (c) father's motivation to participate in disability research., CONCLUSIONS: This study informs and develops a further understanding of the international evidence base of fathers receiving a confirmation of a child's diagnosis of an intellectual and developmental disability, the impact of the diagnosis on fathers and their motivation to share their stories to add to the disability research. Health and social care practitioners have important contributions to make in meeting the needs of fathers. There are specific areas to consider in terms of practice, education and research that require further attention and development to ensure fathers' distinct needs regarding their child's diagnosis of IDD are known and responded to effectively., RELEVANCE TO CLINICAL PRACTICE: This study highlights that when the child's disability is confirmed, fathers experience a diverse range of mixed emotions. Health and social care practitioners including nurses need to be aware of the impact of the diagnosis upon fathers. There is scope to develop the knowledge, skills and confidence of health and social care practitioners regarding the experiences of fathers and how they can further support fathers and their families during the critical time of a disability disclosure. Copyright © 2020 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.
Identifier
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<a href="http://doi.org/10.1111/jocn.15368" target="_blank" rel="noreferrer noopener">10.1111/jocn.15368</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).
*Developmental Disabilities/px [Psychology]
*Fathers/px [Psychology]
*Intellectual Disability/px [Psychology]
2020
2023 SE4 - Parent Perspectives
Adult
Attitude Of Health Personnel
Brown, Michael
Child
Child, Preschool
Developmental Disabilities/di [Diagnosis]
Female
Humans
Intellectual Disability/di [Diagnosis]
Journal of Clinical Nursing
Male
Marsh, Lynne
McCann, Edward
Middle Aged
Qualitative Research
-
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/jama.283.6.756" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.283.6.756</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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Outcome at age 4 years in offspring of women with maternal phenylketonuria: the Maternal PKU Collaborative Study
Publisher
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Jama
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
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Child; Female; Humans; Male; Pregnancy; Logistic Models; Pregnancy Outcome; Longitudinal Studies; Cognition; Developmental Disabilities; Child Behavior; Preschool; AIM; IM; Developmental Disabilities/di [Diagnosis]; Developmental Disabilities/et [Etiology]; Phenylketonurias/dh [Diet Therapy]; Phenylketonurias/pp [Physiopathology]; Pregnancy Complications/dh [Diet Therapy]; Psychological Tests
Creator
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Waisbren SE; Hanley W; Levy HL; Shifrin H; Allred E; Azen C; Chang PN; Cipcic-Schmidt S; de la Cruz F; Hall R; Matalon R; Nanson J; Rouse B; Trefz F; Koch R
Description
An account of the resource
CONTEXT: Untreated maternal phenylketonuria (PKU) increases risk for developmental problems in offspring. The extent to which this risk is reduced by maternal dietary therapy at various stages of pregnancy is not known. OBJECTIVE: To determine whether dietary treatment during pregnancy of women with PKU affects developmental outcomes of offspring. DESIGN: The Maternal PKU Collaborative Study, an ongoing, longitudinal prospective study begun in 1984. SETTING: A total of 78 metabolic clinics and obstetrical offices in the United States, Canada, and Germany. PARTICIPANTS: A total of 253 children of women with PKU (n = 149), with untreated mild hyperphenylalaninemia (n = 33), or without known metabolic problems (comparison group; n = 71) were followed up to age 4 years. INTERVENTION: Women with PKU were offered a low-phenylalanine diet prior to or during pregnancy with the aim of maintaining metabolic control (plasma phenylalanine < or =10 mg/dL [< or =605 micromol/L]). Women with mild hyperphenylalaninemia, who had plasma phenylalanine levels of no more than 10 mg/dL (605 micromol/L) on a normal diet, were not treated. MAIN OUTCOME MEASURES: Children's scores on cognitive and behavioral assessments (McCarthy Scales of Children's Abilities, Test of Language Development, Achenbach Child Behavior Checklist, Vineland Adaptive Behavior Scales, and Home Observation for Measurement of the Environment), compared by maternal metabolic status at 0 to 10 weeks', 10 to 20 weeks', and after 20 weeks' gestation. RESULTS: Scores on the McCarthy General Cognitive Index decreased as weeks to metabolic control increased (r = -0.58; P<.001). Offspring of women who had metabolic control prior to pregnancy had a mean (SD) score of 99 (13). Forty-seven percent of offspring whose mothers did not have metabolic control by 20 weeks' gestation had a General Cognitive Index score 2 SDs below the norm. Overall, 30% of children born to mothers with PKU had social and behavioral problems. CONCLUSIONS: Our data suggest that delayed development in offspring of women with PKU is associated with lack of maternal metabolic control prior to or early in pregnancy. Treatment at any time during pregnancy may reduce the severity of delay.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jama.283.6.756" target="_blank" rel="noreferrer">10.1001/jama.283.6.756</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
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Journal Article
2000
AIM
Allred E
Azen C
Backlog
Chang PN
Child
Child Behavior
Cipcic-Schmidt S
Cognition
de la Cruz F
Developmental Disabilities
Developmental Disabilities/di [Diagnosis]
Developmental Disabilities/et [Etiology]
Female
Hall R
Hanley W
Humans
IM
JAMA
Journal Article
Koch R
Levy HL
Logistic Models
Longitudinal Studies
Male
Matalon R
Nanson J
Phenylketonurias/dh [Diet Therapy]
Phenylketonurias/pp [Physiopathology]
Pregnancy
Pregnancy Complications/dh [Diet Therapy]
Pregnancy Outcome
Preschool
Psychological Tests
Rouse B
Shifrin H
Trefz F
Waisbren SE