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40
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Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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URL Address
<a href="http://doi.org/10.1016/j.jpeds.2007.01.050" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpeds.2007.01.050</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
Parents' perspectives regarding a physician-parent conference after their child's death in the pediatric intensive care unit
Publisher
An entity responsible for making the resource available
The Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Female; Humans; infant; Male; Intensive Care Units; Adult; Parent-Child Relations; Questionnaires; Middle Aged; Communication; Death; Physician's Role; Needs Assessment; Critical Care; Pediatric; bereavement; infant; Newborn; ICU Decision Making; Parents/psychology
Creator
An entity primarily responsible for making the resource
Meert KL; Eggly S; Pollack M; Anand KJ; Zimmerman J; Carcillo J; Newth CJ; Dean JM; Willson DF; Nicholson C; National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network
Description
An account of the resource
OBJECTIVE: To investigate parents' perspectives on the desirability, content, and conditions of a physician-parent conference after their child's death in the pediatric intensive care unit (PICU). STUDY DESIGN: Audio-recorded telephone interviews were conducted with 56 parents of 48 children. All children died in the PICU of one of six children's hospitals in the National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN) 3 to 12 months before the study. RESULTS: Only seven (13%) parents had a scheduled meeting with any physician to discuss their child's death; 33 (59%) wanted to meet with their child's intensive care physician. Of these, 27 (82%) were willing to return to the hospital to meet. Topics that parents wanted to discuss included the chronology of events leading to PICU admission and death, cause of death, treatment, autopsy, genetic risk, medical documents, withdrawal of life support, ways to help others, bereavement support, and what to tell family. Parents sought reassurance and the opportunity to voice complaints and express gratitude. CONCLUSIONS: Many bereaved parents want to meet with the intensive care physician after their child's death. Parents seek to gain information and emotional support, and to give feedback about their PICU experience.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2007.01.050" target="_blank" rel="noreferrer">10.1016/j.jpeds.2007.01.050</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
2007
Adult
Anand KJ
Backlog
Bereavement
Carcillo J
Communication
Critical Care
Dean JM
Death
Eggly S
Female
Humans
ICU Decision Making
Infant
Intensive Care Units
Journal Article
Male
Meert KL
Middle Aged
National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network
Needs Assessment
Newborn
Newth CJ
Nicholson C
Parent-child Relations
Parents/psychology
Pediatric
Physician's Role
Pollack M
Questionnaires
The Journal Of Pediatrics
Willson DF
Zimmerman J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1089/jpm.2007.0120" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2007.0120</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
Ethical and logistical considerations of multicenter parental bereavement research
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Multi-site Ethics
Creator
An entity primarily responsible for making the resource
Meert KL; Eggly S; Dean JM; Pollack M; Zimmerman J; Anand KJ; Newth CJ; Willson DF; Nicholson C
Description
An account of the resource
BACKGROUND: Multicenter research has the potential to recruit participants with diverse racial, ethnic, and geographic backgrounds and is essential for understanding heterogeneity in bereavement. The National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN) is a multicenter network charged with conducting research on the pathophysiology and management of critical illness in childhood. Among its research activities, the CPCCRN has undertaken research in parental bereavement because most childhood deaths in the United States occur in hospitals, primarily in critical care units. OBJECTIVE: The purpose of this paper is to discuss ethical and logistical issues found by the CPCCRN to be problematic to multicenter research with bereaved parents and to explore research strategies that may be practicably implemented. RESULTS: Ethical and logistical challenges encountered by the CPCCRN included issues of privacy; confidentiality; voluntariness; minimizing risks; working with multiple institutional review boards; researcher qualifications, training and support; and methods of data collection. Strategies to address these challenges included local recruitment of participants; flexibility in consent methods across sites; participant options for methods of data collection; involvement of local bereavement support services; central training of researchers with systematic monitoring and opportunities for support; and use of a secure Web-based collaborative workspace. CONCLUSIONS: Multicenter parental bereavement research has distinct ethical issues that must be addressed by the logistics of the research plan. Greater attention to the issues identified may facilitate research to reduce adverse mental and physical health outcomes in a diverse population of bereaved individuals.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2007.0120" target="_blank" rel="noreferrer">10.1089/jpm.2007.0120</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
2008
Anand KJ
Backlog
Dean JM
Eggly S
Journal Article
Journal of Palliative Medicine
Meert KL
Multi-site Ethics
Newth CJ
Nicholson C
Pollack M
Willson DF
Zimmerman J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1097/01.PCC.0000298644.13882.88" target="_blank" rel="noreferrer">http://doi.org/10.1097/01.PCC.0000298644.13882.88</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
Parents' perspectives on physician-parent communication near the time of a child's death in the pediatric intensive care unit
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Child; Female; Humans; Male; United States; Intensive Care Units; Adult; Interviews as Topic; Hospital Mortality; Prognosis; Middle Aged; Professional-Family Relations; Communication; Death; Physician's Role; Truth Disclosure; Hospitals; Pediatric; Preschool; bereavement; Parents/psychology
Creator
An entity primarily responsible for making the resource
Meert KL; Eggly S; Pollack M; Anand KJ; Zimmerman J; Carcillo J; Newth CJ; Dean JM; Willson DF; Nicholson C; National Institute of Child Health; Human Development Collaborative Pediatric Critical Care Research Network
Description
An account of the resource
OBJECTIVE: Communicating bad news about a child's illness is a difficult task commonly faced by intensive care physicians. Greater understanding of parents' scope of experiences with bad news during their child's hospitalization will help physicians communicate more effectively. Our objective is to describe parents' perceptions of their conversations with physicians regarding their child's terminal illness and death in the pediatric intensive care unit (PICU). DESIGN: A secondary analysis of a qualitative interview study. SETTING: Six children's hospitals in the National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. PARTICIPANTS: Fifty-six parents of 48 children who died in the PICU 3-12 months before the study. INTERVENTIONS: Parents participated in audio recorded semistructured telephone interviews. Interviews were analyzed using established qualitative methods. MEASUREMENTS AND MAIN RESULTS: Of the 56 parents interviewed, 40 (71%) wanted to provide feedback on the way information about their child's terminal illness and death was communicated by PICU physicians. The most common communication issue identified by parents was the physicians' availability and attentiveness to their informational needs. Other communication issues included honesty and comprehensiveness of information, affect with which information was provided, withholding of information, provision of false hope, complexity of vocabulary, pace of providing information, contradictory information, and physicians' body language. CONCLUSIONS: The way bad news is discussed by physicians is extremely important to most parents. Parents want physicians to be accessible and to provide honest and complete information with a caring affect, using lay language, and at a pace in accordance with their ability to comprehend. Withholding prognostic information from parents often leads to false hopes and feelings of anger, betrayal, and distrust. Future research is needed to investigate whether the way bad news is discussed influences psychological adjustment and family functioning among bereaved parents.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.PCC.0000298644.13882.88" target="_blank" rel="noreferrer">10.1097/01.PCC.0000298644.13882.88</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
2008
Adult
Anand KJ
Backlog
Bereavement
Carcillo J
Child
Communication
Dean JM
Death
Eggly S
Female
Hospital Mortality
Hospitals
Human Development Collaborative Pediatric Critical Care Research Network
Humans
Intensive Care Units
Interviews As Topic
Journal Article
Male
Meert KL
Middle Aged
National Institute of Child Health
Newth CJ
Nicholson C
Parents/psychology
Pediatric
Pediatric Critical Care Medicine
Physician's Role
Pollack M
Preschool
Professional-family Relations
Prognosis
Truth Disclosure
United States
Willson DF
Zimmerman J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1097/PCC.0b013e3181e89c3a" target="_blank" rel="noreferrer">http://doi.org/10.1097/PCC.0b013e3181e89c3a</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
Physicians' experiences and perspectives regarding follow-up meetings with parents after a child's death in the pediatric intensive care unit.
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Communication; Critical Care; bereavement; ICU Decision Making; qualitative methods; parent
Creator
An entity primarily responsible for making the resource
Meert K; Eggly S; Berger J; Zimmerman J; Anand KJS; Newth CJ; Harrison R; Carcillo J; Dean JM; Willson DF; Nicholson CE; The Eunice Kennedy Shriver National Institute of Child Health; Human Development Collaborative Pediatric Critical Care Research Network
Description
An account of the resource
Objective: To investigate critical care physicians' experiences and perspectives regarding follow-up meetings with parents after a child's death in the pediatric intensive care unit. Parents of children who die in the pediatric intensive care unit often desire a follow-up meeting with the physicians who cared for their child.Design: Semistructured, audio-recorded telephone interviews.Setting: Six clinical centers affiliated with the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network.Participants: Seventy critical care physicians (i.e., attendings and fellows) practicing or training at a Child Health and Human Development Collaborative Pediatric Critical Care Research Network clinical center between February 1, 2008 and June 30, 2008.Measurements and Main Results: Twenty-three (33%) physicians reported never participating in a follow-up meeting with bereaved parents; 22 (31%) participated in one to five meetings; and 25 (36%) participated in more than five meetings. Of those with prior experience, 44 (94%) met with parents at the hospital and 40 (85%) met within 3 months of the death. Meeting content included discussing autopsy, parent questions, hospital course, cause of death, genetic risk, bereavement services, and legal or administrative issues; providing emotional support; and receiving parent feedback. Forty (85%) physicians perceived the meetings to be beneficial to families, and 35 (74%) to physicians. Barriers included time and scheduling, family and physician unwillingness, distance and transportation, language and cultural issues, parent anger, and lack of a system for meeting initiation and planning.Conclusions: Critical care physicians have a wide range of experience conducting follow-up meetings with bereaved parents. Although physicians perceive benefits to follow-up meetings, barriers exist that interfere with their implementation in clinical practice.
2010-06
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/PCC.0b013e3181e89c3a" target="_blank" rel="noreferrer">10.1097/PCC.0b013e3181e89c3a</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
2010
Anand KJS
Backlog
Bereavement
Berger J
Carcillo J
Communication
Critical Care
Dean JM
Eggly S
Harrison R
Human Development Collaborative Pediatric Critical Care Research Network
ICU Decision Making
Journal Article
Meert K
Newth CJ
Nicholson CE
Parent
Pediatric Critical Care Medicine
Qualitative Methods
The Eunice Kennedy Shriver National Institute of Child Health
Willson DF
Zimmerman J