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Text
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URL Address
<a href="http://doi.org/10.1093/jpepsy/22.2.245" target="_blank" rel="noreferrer">http://doi.org/10.1093/jpepsy/22.2.245</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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Factors influencing family participation in a longitudinal study: comparison of pediatric and healthy samples.
Publisher
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Journal Of Pediatric Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Humans; Severity of Illness Index; Longitudinal Studies; Analysis of Variance; Family Health; Chi-Square Distribution; Regression Analysis; Case-Control Studies; infant; Parents/psychology; Heart Defects; Congenital/psychology; Cystic Fibrosis/psychology; Patient Dropouts/statistics & numerical data; Patient Participation/statistics & numerical data; Research/statistics & numerical data
Creator
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Janus M; Goldberg S
Description
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Compared participation levels in a longitudinal study of parent-child relationships from infancy to 4 years in families of children with cystic fibrosis, congenital heart disease, and with no chronic illness. Demographic (parent's age, education) and child, parent, and family variables (medical status, family environment) were investigated for their predictive value of families' participation. 34% of families (71/209) were lost to the study at a later date. Families of children with cystic fibrosis were the least likely to be lost. Parents' age and/or education predicted participation in all groups. Families in both pediatric samples participated less when parental well-being was less optimal, and the level of mother-infant attachment organization was lower. Unlike demographic factors, family factors have differential impact on participation in families in pediatric and nonpediatric samples.
1997
Identifier
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<a href="http://doi.org/10.1093/jpepsy/22.2.245" target="_blank" rel="noreferrer">10.1093/jpepsy/22.2.245</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
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Journal Article
1997
Analysis of Variance
Backlog
Case-Control Studies
Chi-Square Distribution
Congenital/psychology
Cystic Fibrosis/psychology
Family Health
Goldberg S
Heart Defects
Humans
Infant
Janus M
Journal Article
Journal of Pediatric Psychology
Longitudinal Studies
Parents/psychology
Patient Dropouts/statistics & numerical data
Patient Participation/statistics & numerical data
Regression Analysis
Research/statistics & numerical data
Severity Of Illness Index
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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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August 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2022.10762" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamanetworkopen.2022.10762</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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Assessment of an Instrument to Measure Interdisciplinary Staff Perceptions of Quality of Dying and Death in a Pediatric Cardiac Intensive Care Unit
Publisher
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JAMA Network Open
Date
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2022
Subject
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Humans; Infant; Cross-Sectional Studies; Female; Male; Child; Intensive Care Units, Pediatric; Family; Death; Terminal Care
Creator
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Bailey V; Beke DM; Snaman JM; Alizadeh F; Goldberg S; Smith-Parrish M; Gauvreau K; Blume ED; Moynihan KM
Description
An account of the resource
IMPORTANCE: Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children and families at end of life. OBJECTIVES: To evaluate the Pediatric Intensive Care Unit Quality of Dying and Death (PICU-QODD) instrument and examine differences between disciplines and end-of-life circumstances. DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional survey included staff at a single center involved in pediatric CICU deaths from July 1, 2019, to June 30, 2021. EXPOSURES: Staff demographic characteristics, intensity of end-of-life care (mechanical support, open chest, or cardiopulmonary resuscitation [CPR]), mode of death (discontinuation of life-sustaining therapy, treatment limitation, comfort care, CPR, and brain death), and palliative care involvement. MAIN OUTCOMES AND MEASURES: PICU-QODD instrument standardized score (maximum, 100, with higher scores indicating higher quality); global rating of quality of the moment of death and 7 days prior (Likert 11-point scale, with 0 indicating terrible and 10, ideal) and mode-of-death alignment with family wishes. RESULTS: Of 60 patient deaths (31 [52%] female; median [IQR] age, 4.9 months [10 days to 7.5 years]), 33 (55%) received intense care. Of 713 surveys (72% response rate), 246 (35%) were from nurses, 208 (29%) from medical practitioners, and 259 (36%) from allied health professionals. Clinical experience varied (298 [42%] ≤5 years). Median (IQR) PICU-QODD score was 93 (84-97); and quality of the moment of death and 7 days prior scores were 9 (7-10) and 5 (2-7), respectively. Cronbach α ranged from 0.87 (medical staff) to 0.92 (allied health), and PICU-QODD scores significantly correlated with global rating and alignment questions. Mean (SD) PICU-QODD scores were more than 3 points lower for nursing and allied health compared with medical practitioners (nursing staff: 88.3 [10.6]; allied health: 88.9 [9.6]; medical practitioner: 91.9 [7.8]; P < .001) and for less experienced staff (eg, <2 y: 87.7 [8.9]; >15 y: 91, P = .002). Mean PICU-QODD scores were lower for patients with comorbidities, surgical admissions, death following treatment limitation, or death misaligned with family wishes. No difference was observed with palliative care involvement. High-intensity care, compared with low-intensity care, was associated with lower median (IQR) rating of the quality of the 7 days prior to death (4 [2-6] vs 6 [4-8]; P = .001) and of the moment of death (8 [4-10] vs 9 [8-10]; P =.001). CONCLUSIONS AND RELEVANCE: In this cross-sectional survey study of CICU staff, the PICU-QODD showed promise as a reliable and valid clinician measure of quality of dying and death in the CICU. Overall QODD was positively perceived, with lower rated quality of 7 days prior to death and variation by staff and patient characteristics. Our data could guide strategies to meaningfully improve CICU staff well-being and end-of-life experiences for patients and families.
Identifier
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<a href="http://doi.org/10.1001/jamanetworkopen.2022.10762" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2022.10762</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
Alizadeh F
August 2022 List
Bailey V
Beke DM
Blume ED
Child
Cross-sectional Studies
Death
Family
Female
Gauvreau K
Goldberg S
Humans
Infant
Intensive Care Units, Pediatric
JAMA Network Open
Male
Moynihan KM
Smith-Parrish M
Snaman JM
Terminal Care