1
40
3
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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
March 2020 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
March 2020 List
URL Address
<a href="http://doi.org/10.1111/nin.12341" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/nin.12341</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
Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18
Publisher
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Nursing inquiry
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
article; care behavior; child; child protection; controlled study; Edwards syndrome; family counseling; female; grounded theory; human; intensive care unit; male; pain; palliative therapy; patient education; pediatrics; personnel management; practice guideline; son
Creator
An entity primarily responsible for making the resource
Szabat M
Description
An account of the resource
The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method. Each aspect of hope is coded through the blog author's statements, from which three main aspects of hope emerge: hope for the longest possible presence of Aaron with his family, hope for control over situations, pain, and symptoms, and existential facets of hope. These various aspects reveal to what extent the experience of hope is unique. Additionally, analyzing the experience of parental hope uncovers the additional problem of inappropriate communication by health care professionals (HCPs) in intensive care units, particularly when discussing the termination of causal treatment. The problem may be solved through proper education for HCPs and serious consideration of parental involvement in order to properly elaborate guidelines on this issue. The three main aspects of parental hope discussed in this paper might expand knowledge on the issue, helping HCPs to better understand the parents' experience of care and to help sustain parental hope in pediatric palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/nin.12341" target="_blank" rel="noreferrer noopener">10.1111/nin.12341</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).
2020
Article
care behavior
Child
child protection
Controlled Study
Edwards syndrome
family counseling
Female
Grounded Theory
Human
Intensive Care Unit
Male
March 2020 List
Nursing Inquiry
Pain
Palliative Therapy
Patient Education
Pediatrics
personnel management
Practice Guideline
son
Szabat M
-
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
August 2020 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 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.139" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.04.139</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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Understanding the Intersection of Pediatric Palliative Care and Child Abuse Pediatrics (GP716)
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
pediatric palliative care; child protection; Child abuse and neglect; child abuse pediatrics
Creator
An entity primarily responsible for making the resource
Cleveland R; Keefer P
Description
An account of the resource
Objectives: * Describe a framework for understanding circumstances in which Pediatric Palliative Care providers may encounter child abuse or neglect. * Explain the need for future investigations into the overlap of PPC and CPT/CPS. Importance: The intersection of Pediatric Palliative Care (PPC) and child maltreatment is clinically understood to occur. To this point there has not been any published research on the scope of the problem nor any description of the patients who fall into this overlap. Objective(s): To describe medical and demographic characteristics of the population of children seen by both PPC and either an inpatient Child Protective Team (CPT) or state Child Protective Services (CPS). Additional objective was to create a categorization system for said patients. Method(s): Retrospective chart review of 12 years of PPC records. 1803 unique patient charts identified. These were searched for possible child maltreatment, yielding 1405 charts. These were individually reviewed to verify PPC and CPS/CPT involvement, 1216 charts excluded. Demographic and medical data were extracted from the remaining 189 charts. A categorization system based on short narratives of their medical course and reason for CPS/CPT involvement was created. These categories were: 1. An abusive event leading to involvement of PPC and CPS/CPT, 2. A chronic/complex condition for which PPC was involved and the over/under-treatment thereof lead to involvement of CPS/CPT, 3. PPC involvement for a medical process and CPS/CPT involvement for a non-medically-related reason. Descriptive analysis of patients in total and by category was performed. Result(s): 189 of 1803 PPC patients had involvement of CPS/CPT. Of the 189 patients, 26 are in category one, 59 are in category two, and 69 are in category three. Those in category one were statistically more likely to have CPT involvement and concurrent PPC & CPT/CPS involvement. Those in category two were statistically more likely to have concerns for medical neglect. Conclusion(s): PPC children are more frequently involved with CPT/CPS than the general population. There are similarities and differences in their involvement based on their medical history. Impact: This is the first study describing this patient population. The categorization system here developed increases our understanding of this patient population and will aid in future research. Copyright © 2020
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.139" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.139</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).
2020
August 2020 List
Child Abuse and Neglect
child abuse pediatrics
child protection
Cleveland R
Journal of Pain and Symptom Management
Keefer P
Pediatric Palliative Care
-
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
Special Edition #1 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
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1111/nin.12341" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/nin.12341</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
Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18
Publisher
An entity responsible for making the resource available
Nursing inquiry.
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
care behavior; child; child protection; controlled study; Edwards syndrome; family counseling; grounded theory; intensive care unit; pain; palliative therapy; patient education; pediatrics; personnel management; practice guideline; son
Creator
An entity primarily responsible for making the resource
Szabat M
Description
An account of the resource
The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method. Each aspect of hope is coded through the blog author's statements, from which three main aspects of hope emerge: hope for the longest possible presence of Aaron with his family, hope for control over situations, pain, and symptoms, and existential facets of hope. These various aspects reveal to what extent the experience of hope is unique. Additionally, analyzing the experience of parental hope uncovers the additional problem of inappropriate communication by health care professionals (HCPs) in intensive care units, particularly when discussing the termination of causal treatment. The problem may be solved through proper education for HCPs and serious consideration of parental involvement in order to properly elaborate guidelines on this issue. The three main aspects of parental hope discussed in this paper might expand knowledge on the issue, helping HCPs to better understand the parents' experience of care and to help sustain parental hope in pediatric palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/nin.12341" target="_blank" rel="noreferrer noopener">10.1111/nin.12341</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).
2020
2022 Special Edition 1 - Parent Perspectives
care behavior
Child
child protection
Controlled Study
Edwards syndrome
family counseling
Grounded Theory
Intensive Care Unit
Nursing inquiry.
Pain
Palliative Therapy
Patient Education
Pediatrics
personnel management
Practice Guideline
son
Szabat M