1
40
12
-
Dublin Core
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Title
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July 2019 List
Text
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July 2019 List
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<a href="http://doi.org/10.1016/j.pedn.2019.02.029" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1016/j.pedn.2019.02.029</a>
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Title
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Parental Perspectives on Roles in End-of-Life Decision Making in the Pediatric Intensive Care Unit: An Integrative Review
Publisher
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Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Child; CINAHL Database; Decision Making; Health Personnel; Human; Medline; Parental Attitudes; Parental Role; Professional Role; Psycinfo; PubMed; Systematic Review; United States; Intensive Care Units; Pediatric – United States; Terminal Care – In Infancy and Childhood
Creator
An entity primarily responsible for making the resource
Bennett Rachel A; LeBaron V T
Description
An account of the resource
Little is known about how parents perceive their role or the role of health care providers (HCPs) during end-of-life decision making (EOL DM) in the context of the pediatric intensive care unit (PICU). The authors searched CINAHL, PubMed, Ovid Medline, Web of Science, Social Science Database, PsycINFO, and Google scholar for English language studies performed in the United States related to parental perception of parental or HCP roles in EOL DM in the PICU since 2008. Eleven studies of parents and health care providers (HCPs) of critically ill children in the PICU and/or receiving inpatient pediatric palliative care, and bereaved parents of PICU patients. Most parents reported belief that EOL DM is within the domain of parental role, a minority felt it was a physician's responsibility. Parental EOL DM is rooted more firmly in emotion and perception and a desire to be a 'good parent' to a child at EOL in the way they see fit than HCP recommendations or 'medical facts'. Parents need HCPs to treat them as allies, communicate well, and be trustworthy. Role conflict may exist between parents and HCPs who are prioritizing different attributes of the parental role. The role of the nurse in support of parental role in the PICU is not well-elucidated in the extant literature. Future research should focus on what parents need from HCPs, especially nurses, to support their parental role, and factors that facilitate the development of trust and good communication. • Little is known about PICU parental role perception in end of life decision making. • Role alteration is a stressor with negative sequelae for parents in the PICU. • Majority of parents report decision making is a means of parental role fulfillment. • Health care professionals must be trustworthy allies who communicate well. • The role of the PICU nurse in supporting parental role is poorly explicated.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pedn.2019.02.029" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2019.02.029</a>
2019
Bennett Rachel A
Child
CINAHL Database
Decision Making
Health Personnel
Human
Intensive Care Units
Journal of Pediatric Nursing
July 2019 List
LeBaron V T
Medline
Parental Attitudes
Parental Role
Pediatric – United States
Professional Role
Psycinfo
PubMed
Systematic Review
Terminal Care – In Infancy and Childhood
United States
-
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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July 2019 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
July 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0276" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1089/jpm.2018.0276</a>
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Title
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Costs of Care and Location of Death in Community-Based Pediatric Palliative Care
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; adult; article; cardiovascular disease/dm [Disease Management]; child; child death; child health care; child health insurance; childhood cancer/dm [Disease Management]; childhood disease/dm [Disease Management]; cohort analysis; community care; community-based; congenital disorder/dm [Disease Management]; cost; dying; family income; female; groups by age; health care cost; health maintenance organization; home care; human; major clinical study; male; medicaid; neuromuscular disease/dm [Disease Management]; newborn disease/dm [Disease Management]; palliative therapy; pediatric palliative care; pediatric patient; prematurity/dm [Disease Management]; race difference; retrospective study
Creator
An entity primarily responsible for making the resource
Chirico J; Donnelly J P; Gupton A; Cromwell P; Miller M; Dawson C; Korones D N
Description
An account of the resource
Background: Children with complex chronic conditions (CCCs) are dying at home with increased frequency, yet the number of studies on the financial feasibility of community-based pediatric palliative care is limited. Objective(s): The objectives of this study were to (1) describe characteristics of patients who died in a community-based palliative care program and (2) evaluate cost differences associated with participant characteristics and location of death. Design(s): A retrospective cohort analysis of administrative and electronic medical record data was employed. Setting/Subjects: Children enrolled in the community-based pediatric palliative care program, CompassionNet, who died between 2008 and 2015 were included (N = 224). Measurements: Demographic data, program expense, and paid claims were extracted from an insurance provider database and clinical data from the electronic medical record. Result(s): Sixty-six (29%) of the children were \textless1 year old at death; 80 (36%) were 1-9 years old, and 78 (35%) were 10-22 years old. Malignancy was the most common primary CCC diagnosis for the 158 children/adolescents (n = 89, 56%), whereas neuromuscular conditions (n = 20, 30%) were most frequent for infants. Death at home occurred 21% of the time for infants, 48% for children of ages 1-9 years, and 46% for children of ages 10-22 years. The mean total cost in the final year of life for pediatric patients was significantly related to location of death, a malignancy diagnosis, and participation in Medicaid. The largest estimated difference was between costs of care associated with death at home ($121,111) versus death in the hospital ($200,050). Conclusion(s): Multidisciplinary community-based pediatric palliative care teams provide the opportunity for a home death to be realized as desired. Significant cost differences associated with location of death may support program replication and sustainability. Copyright © 2019, Mary Ann Liebert, Inc.
Identifier
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<a href="http://doi.org/10.1089/jpm.2018.0276" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0276</a>
2019
Adolescent
Adult
Article
cardiovascular disease/dm [Disease Management]
Child
Child Death
Child Health Care
child health insurance
childhood cancer/dm [Disease Management]
childhood disease/dm [Disease Management]
Chirico J
Cohort Analysis
community care
community-based
congenital disorder/dm [Disease Management]
Cost
Cromwell P
Dawson C
Donnelly J P
Dying
family income
Female
groups by age
Gupton A
Health Care Cost
health maintenance organization
Home Care
Human
Journal of Palliative Medicine
July 2019 List
Korones D N
Major Clinical Study
Male
Medicaid
Miller M
neuromuscular disease/dm [Disease Management]
newborn disease/dm [Disease Management]
Palliative Therapy
Pediatric Palliative Care
pediatric patient
Prematurity/dm [disease Management]
Race Difference
Retrospective Study
-
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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July 2019 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
July 2019 List
URL Address
<a href="http://doi.org/10.12968/ijpn.2018.24.7.351" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.12968/ijpn.2018.24.7.351</a>
Dublin Core
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Title
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Increasing access to children's palliative care education through e-learning: a review of the ICPCN experience
Publisher
An entity responsible for making the resource available
International journal of palliative nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
article; child; female; human; major clinical study; male; palliative therapy; Children; E-learning; Education; human experiment; language; learning; mandarin; nonhuman; nurse; Paediatrics; Palliative; pediatrics; skill; writing
Creator
An entity primarily responsible for making the resource
Daniels A; Downing J
Description
An account of the resource
Education is integral to the development of children's palliative care (CPC) globally; thus, the International Children's Palliative Care Network (ICPCN) developed a training programme including face-to-face and e-learning programmes to increase access to CPC. A review of ICPCN's e-learning programmes was undertaken in April/May 2018. At the time of writing, there are seven courses available, with more scheduled to be released in the near future. All courses are available in English, with some available in other languages, including Mandarin, Czech and Dutch. Between May 2016 and April 2018, 1501 individuals accessed the courses from 96 countries (39% nurses, 28% doctors). English was the prevalent language used (74%), followed by Spanish (8.5%). To date, over 3106 participants have accessed the e-learning programme from 124 countries. An evaluation in 2015/16 found that \textgreater80% of respondents said the courses were clear, understandable, rated them highly and found them useful. Some 75% of respondents reported improved knowledge, skills and change in attitude, while 61% reported a change in practice. The ICPCN e-learning platform is an innovative way of improving knowledge and understanding of CPC, thereby increasing the accessibility and availability of CPC.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2018.24.7.351" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2018.24.7.351</a>
2018
Article
Child
Children
Daniels A
Downing J
E-learning
Education
Female
Human
Human Experiment
International Journal of Palliative Nursing
July 2019 List
Language
Learning
Major Clinical Study
Male
mandarin
Nonhuman
Nurse
Paediatrics
Palliative
Palliative Therapy
Pediatrics
Skill
writing
-
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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July 2019 List
Text
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Citation List Month
July 2019 List
URL Address
<a href="http://doi.org/10.1016/j.annemergmed.2019.03.008" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1016/j.annemergmed.2019.03.008</a>
Dublin Core
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Title
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Palliative Care in the Pediatric Emergency Department: Findings From a Qualitative Study
Publisher
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Annals of Emergency Medicine.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; child; female; human; major clinical study; male; palliative therapy; clinical evaluation; controlled study; critically ill patient; distress syndrome; emergency ward; genetic transcription; intensive care; patient care; pediatric emergency medicine; qualitative research; software; thematic analysis; theoretical study
Creator
An entity primarily responsible for making the resource
Cote A J; Payot A; Gaucher N
Description
An account of the resource
Study objective: Children with medical complexity represent a fragile population and account for the majority of patients followed in pediatric palliative care. Little is known in regard to the role of the emergency department (ED) in caring for the families of children with medical complexity. Method(s): Semistructured focus groups were held with health care professionals from pediatric emergency medicine, palliative care, complex care, and intensive care to explore their perspective on pediatric palliative care in the ED. Data were transcribed and analyzed with NVivo software, and thematic analysis and theoretic sampling were performed. Result(s): From January to October 2016, 58 participants were interviewed. Difficulties providing pediatric palliative care in the ED are related on the one hand to characteristics specific to the ED, such as its culture and its health care professionals' strong emotional responses when caring for children with medical complexity, and on the other hand to factors extrinsic to the ED; mainly, lack of continuity of care. For critically ill children with unknown goals of care and potential for end of life, professionals in the ED should evaluate the clinical situation, contact known health care teams, remain open to families' preferences, alleviate distressing symptoms, and create a caring environment. Communication between teams is targeted by health care professionals to facilitate and improve patient flow and care. Conclusion(s): Although perspectives differ in regard to how to provide care for pediatric palliative care patients in the ED, several barriers to providing high-quality emergency pediatric palliative care can be overcome. Copyright © 2019 American College of Emergency Physicians
Identifier
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<a href="http://doi.org/10.1016/j.annemergmed.2019.03.008" target="_blank" rel="noreferrer noopener">10.1016/j.annemergmed.2019.03.008</a>
2019
Annals of Emergency Medicine.
Article
Child
clinical evaluation
Controlled Study
Cote A J
Critically Ill Patient
Distress Syndrome
Emergency Ward
Female
Gaucher N
genetic transcription
Human
Intensive Care
July 2019 List
Major Clinical Study
Male
Palliative Therapy
Patient Care
Payot A
pediatric emergency medicine
Qualitative Research
Software
Thematic Analysis
theoretical study
-
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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July 2019 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
July 2019 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2018-316382" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1136/archdischild-2018-316382</a>
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Title
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Parents' experiences of requests for organ and tissue donation: The value of asking
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; child; female; human; male; palliative therapy; retrospective study; qualitative research; awareness; clinical article; coping behavior; coronary care unit; fear; hospice; multicenter study; neonatal intensive care unit; organ donation; organ donor; palliative care; parents; pediatric intensive care unit; terminal care
Creator
An entity primarily responsible for making the resource
Darlington A S; Long-Sutehall T; Randall D; Wakefield C; Robinson V; Brierley J
Description
An account of the resource
Objective: A proportion of children die, making them potentially eligible to be organ/tissue donors. Not all are approached for donation, and experiences of those parents are not well understood. The objective was to investigate to what extent organ and tissue donation (OTD) is discussed as part of end-of-life care and to explore parents' and healthcare professionals' (HCPs) experiences. Design(s): A retrospective qualitative study. Setting(s): Multicentre study with participants recruited through two neonatal intensive care units (ICUs), two paediatric ICUs, a cardiac ICU and a children's hospice. Patient(s): Bereaved parents, parents of a child with a long-term condition (LTC) and HCPs. Intervention(s): None. Main Outcomes and Measures: Parents' and HCPs' views and experiences of discussions about OTD. Result(s): 24 parents of 20 children were interviewed: 21 bereaved parents and 3 parents of a child with a LTC. Seven parents were asked about donation (13 not asked), four agreed and two donated. 41 HCPs were interviewed. Themes: complexity of donation process, OTD as a coping strategy, the importance of asking, difficulty of raising the topic,\textbackslash and parents' assumptions about health of organs (when donation is not discussed). Conclusion(s): The findings add new knowledge about parents' assumptions about the value of their child's organs when discussions about OTD are not raised, and that HCPs do not routinely ask, are sometimes hesitant to ask in fear of damaging relationships, and the reality of the complexity of the donation process. Given the current levels of awareness around OTD, the topic should be raised. Copyright © Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2018-316382" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-316382</a>
2019
Archives of Disease in Childhood.
Article
Awareness
Brierley J
Child
Clinical Article
Coping Behavior
coronary care unit
Darlington A S
Fear
Female
Hospice
Human
July 2019 List
Long-Sutehall T
Male
Multicenter Study
Neonatal Intensive Care Unit
Organ Donation
organ donor
Palliative Care
Palliative Therapy
Parents
Pediatric Intensive Care Unit
Qualitative Research
Randall D
Retrospective Study
Robinson V
Terminal Care
Wakefield C
-
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
July 2019 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
July 2019 List
URL Address
<a href="http://doi.org/10.1080/02739615.2019.1605608" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1080/02739615.2019.1605608</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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Parents' experiences of services for their child with a life-limiting neurodevelopmental disability
Publisher
An entity responsible for making the resource available
Children's Health Care.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; child; female; human; major clinical study; male; staff; funding; interview; nervous system malformation; quantitative analysis
Creator
An entity primarily responsible for making the resource
Kiernan G; Courtney E; Ryan K; McQuillan R; Guerin S
Description
An account of the resource
This study explored parents' experiences of services for children with life-limiting neurodevelopmental disabilities (LLNDD) using mixed methods. The study included a quantitative survey (n = 63) and qualitative interviews (n = 12), with a focus on integrating the findings to identify higher-level insights. Results suggest parents' experiences are mixed, showing more negative than positive experiences. Access to services was described as problematic, with obstacles including funding and geographical inequities. Helpful aspects included staff attitudes and relationships and, to a lesser extent, coordinated care. Unhelpful aspects included inconsistencies in the provision of services. The findings suggest some implications for service provision, including the need for a more family-centered approach. Copyright © 2019, © 2019 Taylor & Francis Group, LLC.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/02739615.2019.1605608" target="_blank" rel="noreferrer noopener">10.1080/02739615.2019.1605608</a>
2019
Article
Child
Children's Health Care.
Courtney E
Female
Funding
Guerin S
Human
Interview
July 2019 List
Kiernan G
Major Clinical Study
Male
McQuillan R
nervous system malformation
quantitative analysis
Ryan K
Staff
-
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
July 2019 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
July 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjopen-2018-028548" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1136/bmjopen-2018-028548</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 experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: A qualitative interview study
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
2019
Subject
The topic of the resource
death; article; child; female; human; male; palliative therapy; genetic transcription; thematic analysis; pediatrics; clinical article; palliative care; pediatric intensive care unit; advance care planning; decision making; interview; human tissue; national health service; nonverbal communication; paediatric palliative care
Creator
An entity primarily responsible for making the resource
Mitchell S; Spry J L; Hill E; Coad J; Dale J; Plunkett A
Description
An account of the resource
Objectives To provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU). Design An in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts. Setting A PICU in a large National Health Service (NHS) tertiary children's hospital in the West Midlands, UK. Participants 17 parents of 11 children who had died in the PICU. Results Five interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a place of acceptance'.(5) Families perceive benefits to receiving end of life care for their child in a PICU. Conclusions and implications The death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care. Copyright © 2019 Author(s).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjopen-2018-028548" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2018-028548</a>
2019
Advance Care Planning
Article
Bmj Open
Child
Clinical Article
Coad J
Dale J
Death
Decision Making
Female
genetic transcription
Hill E
Human
Human Tissue
Interview
July 2019 List
Male
Mitchell S
national health service
Nonverbal Communication
paediatric palliative care
Palliative Care
Palliative Therapy
Pediatric Intensive Care Unit
Pediatrics
Plunkett A
Spry J L
Thematic Analysis
-
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
July 2019 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
July 2019 List
URL Address
<a href="http://doi.org/10.1542/hpeds.2018-0169" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1542/hpeds.2018-0169</a>
Dublin Core
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Title
A name given to the resource
Timing of palliative consultation for children during a fatal illness
Publisher
An entity responsible for making the resource available
Hospital Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; cohort analysis; female; human; major clinical study; male; palliative therapy; retrospective study; outcome assessment; Caucasian; African American; cardiovascular disease; childhood disease; insurance; length of stay; private health insurance
Creator
An entity primarily responsible for making the resource
Rossfeld Z M; Miller R; Fosselman D D; Ketner A R; Tumin D; Tobias J D; Humphrey L
Description
An account of the resource
BACKGROUND: The American Academy of Pediatrics recommends palliative care for children at the diagnosis of serious illness. Yet few children who die receive specialty palliative care consultation, and when it is provided, palliative care consultation tends to occur after .75% of the time from diagnosis until death. Focusing on the timing of palliative consultation in relation to the date of diagnosis, we evaluated factors predicting earlier receipt of pediatric palliative care in a cohort of decedents. METHOD(S): We retrospectively identified patients diagnosed with a life-limiting disease who died at our hospital in 2015-2017 after at least 1 inpatient palliative medicine consultation. Our primary outcome was time from palliative-qualifying diagnosis to earliest receipt of specialty palliative care. A survival analysis was used to describe factors associated with earlier receipt of palliative care. RESULT(S): The analysis included 180 patients (median age at diagnosis,1 month [interquartile range (IQR): 0-77]). The median time to first palliative consultation was 7 days after diagnosis (IQR: 2-63), compared with a median of 50 days between diagnosis and death (IQR: 7-210). On the multivariable analysis, palliative consultation occurred earlier for patients who had cardiovascular diagnoses, had private insurance, and were of African American race. CONCLUSION(S): In a cohort of decedents at our institution, palliative consultation occurred much earlier than has been previously reported. We also identify factors associated with delayed receipt of palliative care among children who are dying that reveal further opportunities to improve access to specialty palliative care. Copyright © 2019 by the American Academy of Pediatrics.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/hpeds.2018-0169" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2018-0169</a>
2019
African American
Article
Cardiovascular Disease
Caucasian
Childhood Disease
Cohort Analysis
Female
Fosselman D D
Hospital Pediatrics
Human
Humphrey L
Insurance
July 2019 List
Ketner A R
Length Of Stay
Major Clinical Study
Male
Miller R
outcome assessment
Palliative Therapy
private health insurance
Retrospective Study
Rossfeld Z M
Tobias J D
Tumin D
-
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
July 2019 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
July 2019 List
URL Address
<a href="http://doi.org/10.1097/01.NAJ.0000544137.55887.5a" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1097/01.NAJ.0000544137.55887.5a</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
Pain in Nonverbal Children with Medical Complexity: A Two-Year Retrospective Study
Publisher
An entity responsible for making the resource available
The American journal of nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Child; Female; Male; Adolescent; Humans; Retrospective Studies; Child Behavior; Intellectual Disability; Pain Measurement/mt [Methods]; Pain/di [Diagnosis]; Pain/pp [Physiopathology]; Parents/px [Psychology]; Longitudinal Studies; New England; Nursing Assessment; Surveys and Questionnaires
Creator
An entity primarily responsible for making the resource
Quinn B L; Solodiuk J C; Morrill D; Mauskar S
Identifier
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<a href="http://doi.org/10.1097/01.NAJ.0000544137.55887.5a" target="_blank" rel="noreferrer noopener">10.1097/01.NAJ.0000544137.55887.5a</a>
2018
Adolescent
Child
Child Behavior
Female
Humans
Intellectual Disability
July 2019 List
Longitudinal Studies
Male
Mauskar S
Morrill D
New England
Nursing Assessment
Pain Measurement/mt [Methods]
Pain/di [diagnosis]
Pain/pp [Physiopathology]
Parents/px [psychology]
Quinn B L
Retrospective Studies
Solodiuk J C
Surveys And Questionnaires
The American journal of nursing
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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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July 2019 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
July 2019 List
URL Address
<a href="http://doi.org/10.1007/s00431-019-03393-w" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1007/s00431-019-03393-w</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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Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study
Publisher
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European Journal of Pediatrics.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; child; female; human; male; palliative therapy; controlled study; qualitative research; thematic analysis; Coping; Paediatrics; pediatrics; clinical article; coping behavior; decision making; interview; child care; anxiety; Caregiving; child parent relation; Experiences; grief; Palliative care; Parents; perception; tension; uncertainty
Creator
An entity primarily responsible for making the resource
Verberne L M; Kars M C; Schouten-van Meeteren A Y N; van den Bergh E M M; Bosman D K; Colenbrander D A; Grootenhuis M A; van Delden J J M
Description
An account of the resource
Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals' support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s). Conclusion(s): Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies.What is Known:* In paediatric palliative care, parents have a daunting task in fulfilling all caregiving tasks while striving for control of their child's symptoms, a life worth living and a family balance.What is New:* Prominent experiences were: continuous management of anxiety of child loss, feelings of uncertainty, tension with end-of-life decision making and engagement with professionals. Parents experienced unique significance to their child, reinforcing a meaningful parent-child relationship.* Relevant coping strategies were: suppressing emotions, seeking support, taking control to arrange optimal care and adapting to the ongoing changes.* To provide tailored support, professionals need to understand parents' perceptions, relationship with their child and coping strategies. Copyright © 2019, The Author(s).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-019-03393-w" target="_blank" rel="noreferrer noopener">10.1007/s00431-019-03393-w</a>
2019
anxiety
Article
Bosman D K
Caregiving
Child
Child Care
Child Parent Relation
Clinical Article
Colenbrander D A
Controlled Study
Coping
Coping Behavior
Decision Making
European Journal of Pediatrics.
Experiences
Female
Grief
Grootenhuis M A
Human
Interview
July 2019 List
Kars M C
Male
Paediatrics
Palliative Care
Palliative Therapy
Parents
Pediatrics
Perception
Qualitative Research
Schouten-van Meeteren A Y N
tension
Thematic Analysis
Uncertainty
van Delden J J M
van den Bergh E M M
Verberne L M
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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
July 2019 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
July 2019 List
URL Address
<a href="http://doi.org/10.1542/peds.2018-0478J" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1542/peds.2018-0478J</a>
Dublin Core
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Title
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Why Do Neonatologists in Scandinavian Countries and the Netherlands Make Life-and-death Decisions So Different?
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Infant; Humans; Attitude of Health Personnel; Clinical Decision-Making/mt [Methods]; Infant Care/mt [Methods]; Infant Care/px [Psychology]; Neonatologists/px [Psychology]; Infant Care/st [Standards]; Neonatologists/st [Standards]; Netherlands/ep [Epidemiology]; Scandinavian and Nordic Countries/ep [Epidemiology]; Survival Rate/td [Trends]; Withholding Treatment/st [Standards]; Newborn
Creator
An entity primarily responsible for making the resource
Verhagen A A E
Description
An account of the resource
An examination of the policies regarding the care of extremely premature newborns reveals unexpected differences between Scandinavian countries and the Netherlands. Three topics related to decision-making at the beginning and at the end of life are identified and discussed.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2018-0478J" target="_blank" rel="noreferrer noopener">10.1542/peds.2018-0478J</a>
2018
Attitude Of Health Personnel
Clinical Decision-Making/mt [Methods]
Humans
Infant
Infant Care/mt [Methods]
Infant Care/px [Psychology]
Infant Care/st [Standards]
July 2019 List
Neonatologists/px [psychology]
Neonatologists/st [Standards]
Netherlands/ep [Epidemiology]
Newborn
Pediatrics
Scandinavian and Nordic Countries/ep [Epidemiology]
Survival Rate/td [Trends]
Verhagen A A E
Withholding Treatment/st [Standards]
-
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
July 2019 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
July 2019 List
URL Address
<a href="http://doi.org/10.1177/0022167819850002" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1177/0022167819850002</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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Hospital Clown Narratives in Pediatric Palliative Care
Publisher
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Journal of Humanistic Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Palliative; pediatrics; narratives
Creator
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Santarpia A; Romani-Cesaro M; Simonds C
Description
An account of the resource
The goal of this qualitative research was to achieve a deeper psychological understanding of professional hospital clown work with hospitalized children during their end-of-life care period. Using a statistical text analysis with a co-occurrence strategy we showed several narrative categories from a clown’s perspective: “Tragic metamorphosis,” “Meditating on the mystery,” “An ultimate poetic atmosphere,” “Interconnectedness and interrelatedness of all things,” “An emotional catalyst,” “The deep need to say goodbye,” “Ethical guidance values.” We will interpret the narratives categories according to humanistic/existential framework as the theoretical base. The clown addresses those aspects of healing that are not well developed in modern Western medicine, the treatment of the whole person. The clown embraces human nature as physical, emotional, cognitive, and spiritual.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0022167819850002" target="_blank" rel="noreferrer noopener">10.1177/0022167819850002</a>
2019
Journal Of Humanistic Psychology
July 2019 List
Narratives
Palliative
Pediatrics
Romani-Cesaro M
Santarpia A
Simonds C