1
40
45
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Title
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August 2022 List
Text
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August 2022 List
URL Address
<a href="http://doi.org/10.1097/NJH.0000000000000884" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/NJH.0000000000000884</a>
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"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit
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Journal of hospice and palliative nursing
Date
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2022
Subject
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child; terminal care; nursing; chronic disease; male; pain; human; intensive care; pediatric intensive care unit; perception; narrative; article; controlled study; interview; major clinical study; distress syndrome; comfort; cancer patient; quantitative analysis; malignant neoplasm; infant; sedation; memory
Creator
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Broden EG; Hinds PS; Werner-Lin AV; Curley MAQ
Description
An account of the resource
Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients' pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents' descriptions of their child's comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents' memories of their child's suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents' ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying children's pain and corresponding parental distress, as parents' memories of their dying child's suffering persist for years. Copyright © 2022 by The Hospice and Palliative Nurses Association. All rights reserved.
Identifier
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<a href="http://doi.org/10.1097/NJH.0000000000000884" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000884</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).
2022
Article
August 2022 List
Broden EG
Cancer Patient
Child
Chronic Disease
Comfort
Controlled Study
Curley MAQ
Distress Syndrome
Hinds PS
Human
Infant
Intensive Care
Interview
Journal of Hospice and Palliative Nursing
Major Clinical Study
Male
Malignant Neoplasm
Memory
Narrative
Nursing
Pain
Pediatric Intensive Care Unit
Perception
quantitative analysis
Sedation
Terminal Care
Werner-Lin AV
-
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 2018 List
Rights
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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).
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 2018 List
URL Address
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216318769196</a>
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Title
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"I don't want this to be in my biography": A qualitative study of the experiences of grandparents losing a grandchild due to a neurological or oncological disease
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
human; child; male; terminal care; clinical article; diagnosis; comfort; palliative therapy; conference abstract; friend; Switzerland; oncology; semi structured interview; qualitative research; grandchild; grandparent; literature; cause of death; memory; son
Creator
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Flury M; Orellana-Rios C; Bergstrasser E; Becker G
Description
An account of the resource
Background/aim: Pediatric Palliative Care (PPC) in hospitals mainly focuses on the parents and siblings of children suffering from a life limiting disease. However, most grandparents are also highly involved in the caring of the child and require additional attention. As little is known about the experiences of grandparents losing a grandchild, this study aimed to address this research gap by investigating the experiences of grandparents throughout the end of life care and after the death of a grandchild. Neurological and oncological diseases are the most common causes of death in children older than one year. Methods: A qualitative approach using semi-structured interviews was chosen. Fifteen grandparents of ten deceased children were interviewed. Four grandchildren died due to an oncology disease and six to a neurological one. Participants were recruited among the families attended by the PPC team of a children's hospital in northern Switzerland. Grandparents were interviewed at least one year after the death of the grandchild. The data was analyzed employing reconstructive interview analysis. Results: Regardless of the diagnosis and death circumstances of the child, participants described major impact that the child's death had on them and their entire family. Grandparents felt obliged to support the family and constantly be a supportive pillar for the parents. They beared a double psychological burden as they care and mourn twice; for their dying grandchild and for their daughter or son. Grandparents also struggled with communication difficulties concerning disease and death when in contact with other family members, friends and acquaintances. They tried to make sense and processed their loss by remembering the deceased child and finding comfort in the fact that the child and the family did not have to suffer longer painful symptoms. All participants reported being grateful for the time they were able to spend with their grandchild. Conclusion: These findings emphasize the importance of understanding and identifying the suffering of the grandparents. PPC teams can achieve this by actively making contact with them, taking their concerns seriously and demonstrating appreciation for their role in supporting the family.
Identifier
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<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</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).
2018
August 2018 List
Becker G
Bergstrasser E
Cause Of Death
Child
Clinical Article
Comfort
conference abstract
Diagnosis
Flury M
friend
grandchild
grandparent
Human
literature
Male
Memory
Oncology
Orellana-Rios C
Palliative Medicine
Palliative Therapy
Qualitative Research
Semi Structured Interview
son
Switzerland
Terminal Care
-
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
November 2017 List
URL Address
<a class="doi" href="https://doi.org/10.1016/j.arcped.2017.06.009" target="_blank" title="Persistent link using digital object identifier" rel="noreferrer noopener">https://doi.org/10.1016/j.arcped.2017.06.009</a>
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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/.
Publisher
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Archives De Pediatrie
Date
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2017
Subject
The topic of the resource
Analgesia; Analgesic Agent; Child; Comfort; Drug Therapy; France; Human; Medline; Neonatal Intensive Care Unit; Newborn; Palliative Therapy; Practice Guideline; Sedation; Systematic Review; Tranquilizing Activity
Creator
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Pouvreau N; Tandonnet J; Tandonnet O; Renesme L
Description
An account of the resource
Introduction: Subcutaneous hydration (hypodermoclysis) and drug administration is a widely used method of analgesic therapy in adult palliative care medicine. Very little is known about its use in neonatal medicine. Evidence-based guidelines do not exist due to a lack of data. In this study, the advantages of subcutaneous analgesic therapy in terms of comfort in neonatal palliative care situations were investigated. Methods: This report details the results of a systematic review associated with a survey in neonatal intensive care units (NICUs) and pediatric palliative care departments (PPCTs) in France. Results: No article was available in the Medline database. In Google<sup></sup>, we found six guidelines that described the use of the subcutaneous route in the pediatric palliative population. The participation rate in the survey was approximately 83 % for French NICUs and 74 % for PPCTs. Eleven percent of NICUs and 27 % of PPCTs had already used subcutaneous drug administration for palliative care, mainly for analgesia and terminal sedation. Limiting factors of its use were mainly alternative options and the lack of data. Nevertheless, 76 % of NICUs and 73 % of PPCTs expressed an interest in the use of the subcutaneous route in NICUs. Ninety-one percent of French NICUs and 80 % of PPCTs were interested in elaborating a protocol using the subcutaneous route for analgesia, anxiolysis, or terminal sedation. Conclusion: The subcutaneous route can be advantageous for comfort care in the neonatal palliative population. Studies are needed to define the modalities, pharmacodynamics, and pharmacokinetics of therapeutics in this population.
Identifier
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<a href="https://doi.org/10.1016/j.arcped.2017.06.009">10.1016/j.arcped.2017.06.009</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).
Title
A name given to the resource
[Use of subcutaneous route for comfort care in neonatal palliative population: Systematic review and survey of practices in France]
2017
Analgesia
Analgesic Agent
Archives de Pediatrie
Child
Comfort
Drug Therapy
France
Human
Medline
Neonatal Intensive Care Unit
Newborn
November 2017 List
Palliative Therapy
Pouvreau N
Practice Guideline
Renesme L
Sedation
Systematic Review
Tandonnet J
Tandonnet O
Tranquilizing Activity
-
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Title
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January 2018 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
January 2018 List
URL Address
<a href="http://doi.org/10.1002/ppul.23840" target="_blank" rel="noreferrer">http://doi.org/10.1002/ppul.23840</a>
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Title
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Advanced care planning in cystic fibrosis
Publisher
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Pediatric Pulmonology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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cystic fibrosis; 7782-44-7 (oxygen); chest tube; Child; Clinical Article; comfort; durable power of attorney; Female; Forced Expiratory Volume; hemoptysis; Hospitalization; Human; lifespan; living will; Male; outpatient; oxygen; Palliative therapy; Pilot study; pneumothorax; practice guideline; school child; thinking
Creator
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Linnemann RW; Friedman D; Altstein L; Georgiopoulos A; Islam S; Bach K; St John A; Moskowitz SM; Yonker LM
Description
An account of the resource
Background: Advanced care planning (ACP) is recommended for people with cystic fibrosis (CF). To date, a CF-specific consensus statement that would help CF care teams incorporate ACP into clinical practice has not been developed. Additional research on ACP topics and preferences for optimal implementation is needed to support evidence-based incorporation into routine CF care. Objective: To assess ACP experiences and preferences among individuals with CF in order to inform future interventions aimed at improving ACP in CF. Methods: We surveyed 41 patients with CF aged >=12 years participating in a pilot study of a primary palliative care intervention (Coping, goal Assessment, and Relief from Evolving CF Symptoms [CF-CARES]). We assessed 4 domains of ACP: prior thoughts about ACP, comfort with ACP, preferences for ACP, and prior completion of ACP. We also evaluated the impact of disease severity on certain measures. Severe disease was defined as: Forced Expiratory Volume in 1 second (FEV<inf>1</inf>) <30%, >=4 CF hospitalizations in past year, ever had pneumothorax requiring chest tube placement, ever had massive hemoptysis/hemoptysis requiring hospitalization, or current home oxygen use. Results: We found that most participants worry about ACP topics: 92% worry about the impact of CF on their lifespan and 84% worry about what living with CF would be like if they were to get sicker. The majority (52%) had thought at least "somewhat" about what their important goals and wishes would be if their health situation were to worsen. Only 37% had specific wishes about the types of medical treatment they would or wouldn't want at end of life. The vast majority of participants reported feeling very comfortable talking with CF providers about ACP topics. However, only 5% reported previously talking to a CF team member about the care they would want if they became too ill to make decisions on their own. Few participants (11%) had completed a durable power of attorney for health care or living will. Participants overall preferred to have ACP discussions initiated by any member of the CF team who knows them well, during a period of stability when generally healthy but meeting a certain threshold (e.g. >=4 hospitalizations per year or FEV<inf>1</inf> <40%), and in the outpatient setting. Severe disease was not statistically associated with subjects' worry about getting sicker, comfort talking to CF providers about ACP, or setting preferences for ACP. Conclusions: Our results support the need for a consistent approach to ACP for CF patients earlier in the illness course when patients are still generally healthy. People with CF appear to worry about ACP topics, but need more support from the CF team to understand and document their ACP choices. Future guidelines on ACP in CF, as well as CF-specific ACP materials for patients, may help ensure that all individuals with CF benefit from ACP..
Identifier
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<a href="http://doi.org/10.1002/ppul.23840" target="_blank" rel="noreferrer">10.1002/ppul.23840</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).
2017
7782-44-7 (oxygen)
Altstein L
Bach K
chest tube
Child
Clinical Article
Comfort
Cystic Fibrosis
durable power of attorney
Female
Forced Expiratory Volume
Friedman D
Georgiopoulos A
hemoptysis
Hospitalization
Human
Islam S
January 2018 List
Lifespan
Linnemann RW
living will
Male
Moskowitz SM
Outpatient
oxygen
Palliative Therapy
Pediatric Pulmonology
Pilot Study
pneumothorax
Practice Guideline
School Child
St John A
thinking
Yonker LM
-
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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January 2018 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
January 2018 List
URL Address
<a href="http://doi.org/10.1371/journal.pone.0187375" target="_blank" rel="noreferrer">http://doi.org/10.1371/journal.pone.0187375</a>
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Title
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Challenges to code status discussions for pediatric patients
Publisher
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Plos One
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Child; comfort; distress syndrome; Female; Human; major clinical study; Male; morality; nurse; pediatric ward; Questionnaire; resident; self report; student; vision
Creator
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Kruse KE; Batten J; Constantine ML; Kache S; Magnus D
Description
An account of the resource
Objectives: In the context of serious or life-limiting illness, pediatric patients and their families are faced with difficult decisions surrounding appropriate resuscitation efforts in the event of a cardiopulmonary arrest. Code status orders are one way to inform end-of-life medical decision making. The objectives of this study are to evaluate the extent to which pediatric providers have knowledge of code status options and explore the association of provider role with (1) knowledge of code status options, (2) perception of timing of code status discussions, (3) perception of family receptivity to code status discussions, and (4) comfort carrying out code status discussions. Design: Nurses, trainees (residents and fellows), and attending physicians from pediatric units where code status discussions typically occur completed a short survey questionnaire regarding their knowledge of code status options and perceptions surrounding code status discussions. Setting: Single center, quaternary care children's hospital. Measurements and main results: 203 nurses, 31 trainees, and 29 attending physicians in 4 high-acuity pediatric units responded to the survey (N = 263, 90% response rate). Based on an objective knowledge measure, providers demonstrate poor understanding of available code status options, with only 22% of providers able to enumerate more than two of four available code status options. In contrast, provider groups self-report high levels of familiarity with available code status options, with attending physicians reporting significantly higher levels than nurses and trainees (p = 0.0125). Nurses and attending physicians show significantly different perception of code status discussion timing, with majority of nurses (63.4%) perceiving discussions as occurring "too late" or "much too late" and majority of attending physicians (55.6%) perceiving the timing as "about right" (p<0.0001). Attending physicians report significantly higher comfort having code status discussions with families than do nurses or trainees (p0.0001). Attending physicians and trainees perceive families as more receptive to code status discussions than nurses (p<0.0001 and p = 0.0018, respectively). Conclusions: Providers have poor understanding of code status options and differ significantly in their comfort having code status discussions and their perceptions of these discussions. These findings may reflect inherent differences among providers, but may also reflect discordant visions of appropriate care and function as a potential source of moral distress. Lack of knowledge of code status options and differences in provider perceptions are likely barriers to quality communication surrounding end-of-life options.
Identifier
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<a href="http://doi.org/10.1371/journal.pone.0187375" target="_blank" rel="noreferrer">10.1371/journal.pone.0187375</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).
2017
Batten J
Child
Comfort
Constantine ML
Distress Syndrome
Female
Human
January 2018 List
Kache S
Kruse KE
Magnus D
Major Clinical Study
Male
Morality
Nurse
pediatric ward
PLoS One
Questionnaire
Resident
Self Report
Student
vision
-
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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February 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
February 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.360" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.360</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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Characteristics of a Perinatal Palliative Care Program Over 10 years
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
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; hospice; obstetrician; palliative therapy; major clinical study; retrospective study; comfort; medical record; patient referral; neonatal intensive care unit; neonatologist; conference abstract; human; child; female; male; controlled study; diagnosis; resuscitation; positive end expiratory pressure; genetics
Creator
An entity primarily responsible for making the resource
Doherty M; Dumond LG; Williams R; Stoppels N
Description
An account of the resource
Background: Perinatal Hospice is a relatively new component of pediatric palliative care, which supports families who are expecting the birth of a child with life-threatening or life-limiting condition. Parents in this situation have unique needs and often experience emotional isolation following their child's loss. This study explores the characteristics of babies and families referred for perinatal hospice, and provides descriptive analysis of diagnosis, interventions and outcomes.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.360" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.360</a>
2018
Child
Comfort
conference abstract
Controlled Study
Diagnosis
Doherty M
Dumond LG
February 2019 List
Female
Genetics
Hospice
Human
Infant
Journal of Pain and Symptom Management
Major Clinical Study
Male
Medical Record
Neonatal Intensive Care Unit
Neonatologist
obstetrician
Palliative Therapy
Patient Referral
positive end expiratory pressure
Resuscitation
Retrospective Study
Stoppels N
Williams R
-
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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February 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
February 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/141/1_MeetingAbstract/376">https://pediatrics.aappublications.org/content/141/1_MeetingAbstract/376</a>
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Title
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Communicating death and dying through simulation: A project with pediatric residents
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
acute disease; child; clergy; comfort; communication skill; conference abstract; conversation; curriculum; emergency treatment; human; Likert scale; pain; palliative therapy; residency education; resident; simulation; teaching; terminal care
Creator
An entity primarily responsible for making the resource
Greening H G; Havalad V; Kobler K
Description
An account of the resource
Program Goals Pediatric residentscare for a wide spectrum of children with acute and chronic disease processes. They are often the first to communicate with families, yet receive little formal training in conveying difficult information. In 2014, during this author's chief resident academic year, many residents expressed feelings of frustration and inadequacy when caring for children at end-of-life, and also reported a lack of opportunities to process their patients' deaths. To address these needs, we partnered with an interdisciplinary team to create an end-of-life communications-based curriculum that was integrated into our existing resident simulation program. We aimed to provide communication opportunities for our residents in a safe, structured, and directly observed environment where they could practice communication skills and reflect on their experiences. We hypothesized that residents would value these simulations as part of their residency training, and would feel more comfortable communicating difficult news after practicing such skills. Evaluation The end-of-life simulation curriculum was developed by an interdisciplinary team of ICU and hospitalist physicians, pediatric palliative care professionals, child life specialists, and hospital chaplains. Over two years, all residents participated in simulations that focused on communicating with parents (standardized actors) in pediatric death and dying situations. Three pausing points were included during the simulation, offering residents the unique opportunity to discuss together how best to approach the next conversation with the standardized parent-actor. Following the simulations, the interdisciplinary team debriefed with the residents, allowing opportunity for reflection and addressing questions and concerns. After each simulation/debriefing cycle, educational resources were provided through an electronic teaching file, as well as opportunities to meet oneon- one with members of the interdisciplinary team for further processing. Pre-tests and post-tests were used to evaluate residents comfort with end-of-life communication and pediatric palliative care provision. A 5-point Likert scale was used to evaluate residents' level of comfort with a variety of skills/topics, including: discussing end-of-life care options with parents, limiting emergency treatment, managing pain/symptoms, pronouncing death, and coping with one's own responses to a child's death. Discussion Pediatric residents feel unprepared to communicate with families in end-of-life situations. Through this innovated simulation curriculum, we have been able to better understand the needs of our resident trainees and by providing exposure to these complex situations in a safe, empowering environment. Following our first year of data collection, we found that 92% of residents reported feeling more comfortable communicating with families in end-of-life situations after participating in a two hour simulation. The residents reported benefitting from these experiences; 100% of residents requested additional training in palliative care. We anticipate having second cycle data available for presentation in Fall, 2016 to further demonstrate the how this innovative simulation enhances pediatric resident education.
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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).
2018
Acute Disease
Child
Clergy
Comfort
Communication Skill
conference abstract
Conversation
Curriculum
Emergency Treatment
February 2020 List
Greening H G
Havalad V
Human
Kobler K
Likert scale
Pain
Palliative Therapy
Pediatrics
residency education
Resident
Simulation
Teaching
Terminal 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
March 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
March 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.147" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1016/j.jpainsymman.2018.12.147</a>
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Title
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Compassionate Design: Applying Design Thinking Principles to Pediatric End-of-Life Care (FR452)
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
mourning; college; feasibility study; comfort; student; morality; conference abstract; injury; human; child; controlled study; terminal care; interview; staff; memory; intensive care unit; light; thinking; bath; illumination; job satisfaction; posthumous care; privacy
Creator
An entity primarily responsible for making the resource
Thienprayoon R; Lane J; Grossoehme D
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.147" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.147</a>
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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).
Description
An account of the resource
Objectives: *Discuss bereaved parent and staff perspectives regarding limitations for end-of-life care for children who die in intensive care units.*Explain the process of co-creation sessions, and identify opportunity concepts for improving end of life care in pediatric intensive care units.*Discuss multiple interventions to improve end-of-life care for children who die in intensive care units and their families. Approximately 70% of pediatric deaths at Cincinnati Children's (CCHMC) occur in an intensive care unit (ICU). Memories of the child's death critically impact the grieving process. Yet, ICU rooms are not designed for end-of-life (EOL) care. Space and privacy are limited; families may feel pressured to leave quickly after the child dies. Visitation policies limit family presence. Ritual bathing is difficult to accommodate. Some families desire to accompany the child through the basement to the morgue, a walk described as "unceremonious" and "stark". The Objectives of this study were to (i) understand EOL and post-mortem (PM) experiences of bereaved parents, how they relate to grief/mourning, (ii) understand EOL and PM experiences of staff, how they relate to job satisfaction/moral injury (iii) design new patient-centered, culturally sensitive processes and dedicated space for EOL and PM care. This project was a collaboration between CCHMC and a University of Cincinnati College of Design, Architecture, Art and Planning student design team, united through the Live Well Collaborative (LWC), a non-profit utilizing a design-thinking process to co-create innovations to improve health outcomes. LWC utilized human centered design in three phases: research, ideation and refinement. Research: LWC drew insights from a literature review and interviews with bereaved families and staff. The team designed an experience/journey map visually representing stakeholders' thoughts, experiences, and emotions throughout the EOL process. A feasibility/influence chart focused them on 3 improvement areas: privacy, transition from intensive care to legacy building, and parental control. Ideation: the team's co-creation sessions with parents and staff led to 7 opportunity concepts. Refinement: Concepts were tested and refined: room privacy lights, a comfort quilt, little reminders, announcement and spiritual lighting en route to the morgue, a remembrance garden and other spatial considerations. These were presented to the CCHMC team and other stakeholders for implementation.
2019
bath
Child
college
Comfort
conference abstract
Controlled Study
Feasibility Study
Grossoehme D
Human
illumination
injury
Intensive Care Unit
Interview
Job Satisfaction
Journal of Pain and Symptom Management
Lane J
Light
March 2019 List
Memory
Morality
mourning
Posthumous Care
Privacy
Staff
Student
Terminal Care
Thienprayoon R
thinking
-
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Title
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2020 Oncology 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.
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Oncology 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.11.022" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.11.022</a>
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Title
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Defining the Boundaries of Palliative Care in Pediatric Oncology
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
child; human; palliative therapy; controlled study; female; major clinical study; male; article; childhood cancer; terminal care; quality of life; interview; comfort; cancer patient; content analysis; skill; mental health; nurse practitioner; genetic transcription; pediatric oncologist; standardization
Creator
An entity primarily responsible for making the resource
Cuviello A; Raisanen J C; Donohue P K; Wiener L; Boss R D
Description
An account of the resource
Context: Although palliative care (PC) continues to be integrated into pediatric oncological care, only a minority of patients with cancer receive a formal PC consult.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.11.022" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.11.022</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).
2020
Article
Boss R D
Cancer Patient
Child
Childhood Cancer
Comfort
Content Analysis
Controlled Study
Cuviello A
Donohue P K
Female
genetic transcription
Human
Interview
Journal of Pain and Symptom Management
Major Clinical Study
Male
Mental Health
Nurse Practitioner
Oncology 2020 List
Palliative Therapy
pediatric oncologist
Quality Of Life
Raisanen J C
Skill
standardization
Terminal Care
Wiener L
-
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Title
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January 2023 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.
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January List 2023
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2021-003087" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjspcare-2021-003087</a>
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Title
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Designing the physical environment for inpatient palliative care: A narrative review
Publisher
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BMJ Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Hospice Care; Hospital Care; Hospital Patient; Narrative; Nursing Home; Palliative Therapy; Cinahl; Family Management; Hospice Care; Hospital Care; Medline; PsycINFO; Adult; Built Environment; Child; Comfort; Conception; Data Extraction; Data Synthesis; Emergency Ward; Family Interaction; Family Management; Hospice Care; Hospital Care; Nursing Home Care; Female; Furniture; Human; Human Dignity; Male; Nursing Home; Privacy; Review; Systematic Review; Thematic Analysis
Creator
An entity primarily responsible for making the resource
Wong K; McLaughlan R; Collins A; Philip J
Description
An account of the resource
Background: It is essential that the physical environments in which inpatient palliative care is provided support the needs of patients and the facilitate the multidimensional delivery of palliative care. This review aims to identify the features and characteristics of inpatient palliative care environments that enhance or detract from the patient experience; and identify opportunities for progress within this field. Method(s): Three databases were searched: MEDLINE (1946-2020), PsycINFO (1806-2020) and CINAHL (1937-2020). Articles were screened by title and abstract with included studies read in full for data extraction. Data synthesis involved thematic analysis informed by the findings of the included literature. Inclusion criteria were studies with empirical methodology examining adult palliative care in the hospital, hospice or nursing home environment. Studies that examined palliative care delivered within the emergency department, ICU or within the home were excluded, as were those related to paediatric palliative care. Result(s): Four main themes were identified: the provision of privacy, facilitating interactions with family, facilitating comfort through homeliness and connections to nature. Conclusion(s): The board acceptance of single rooms as the preeminent design solution for supporting privacy, dignity and family interaction, alongside current conceptions of homeliness that typically focus on matters of interior design, are limiting possibilities for further design innovation within palliative care settings. Research that investigates a broader set of design strategies through which the built environment can support care, alongside enhanced interdisciplinary collaboration, could positively contribute to patient and family experiences of inpatient palliative care.Copyright © Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2021-003087" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003087</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).
Child
Hospice Care
Hospital Care
Human
Thematic Analysis
2021
Adult
BMJ Supportive and Palliative Care
Built Environment
Cinahl
Collins A
Comfort
Conception
data extraction
Data Synthesis
Emergency Ward
Family Interaction
Family Management
Female
Furniture
Hospice Care
Hospital care
Hospital Patient
Human Dignity
January List 2023
Male
McLaughlan R
Medline
Narrative
nursing home
Nursing Home Care
Palliative Therapy
Philip J
Privacy
Psycinfo
Review
Systematic Review
Wong K
-
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Title
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December 2018 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.
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December 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909118786870" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1177/1049909118786870</a>
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Development and Implementation of an End-of-Life Curriculum for Pediatric Residents
Publisher
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The American journal of hospice & palliative care
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
dying; palliative therapy; comfort; satisfaction; resident; human; article; child; terminal care; curriculum development
Creator
An entity primarily responsible for making the resource
Wilson PM; Herbst L A; Gonzalez-Del-Rey J
Description
An account of the resource
BACKGROUND: Caring for a child near the end of life (EOL) can be a stressful experience. Resident physicians are often the frontline providers responsible for managing symptoms, communicating difficult information, and pronouncing death, yet they often receive minimal education on EOL care. OBJECTIVE: To develop and implement an EOL curriculum and to study its impact on resident comfort and attitudes surrounding EOL care. DESIGN: Kern's 6-step approach to curriculum development was used as a framework for curriculum design and implementation. SETTING/PARTICIPANTS: Categorical and combined pediatric residents at a large quaternary care children's hospital were exposed to the curriculum. MEASUREMENTS: A cross-sectional survey was distributed pre- and postimplementation of the curriculum to evaluate its impact on resident comfort and attitudes surrounding EOL care. RESULTS: One-hundred twenty-six (49%) of 258 residents completed the preimplementation survey, and 65 (32%) of 201 residents completed the postimplementation survey. Over 80% of residents reported caring for a dying patient, yet less than half the residents reported receiving prior education on EOL care. Following curriculum implementation, the percentage of residents dissatisfied with their EOL education fell from 36% to 14%, while the percentage of residents satisfied with their education increased from 14% to 29%. The postimplementation survey identified that resident comfort with communication-based topics improved, and they sought additional training in symptom management. CONCLUSIONS: The implementation of a longitudinal targeted multimodal EOL curriculum improved resident satisfaction with EOL education and highlighted the need for additional EOL education.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909118786870" target="_blank" rel="noreferrer noopener">10.1177/1049909118786870</a>
2018
Article
Child
Comfort
curriculum development
December 2018 List
Dying
Gonzalez-Del-Rey J
Herbst L A
Human
Palliative Therapy
Resident
Satisfaction
Terminal Care
The American Journal of Hospice & Palliative Care
Wilson PM
-
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Title
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June 2019 List
Text
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June 2019 List
URL Address
<a href="http://doi.org/10.1136/jim-2018-000974.461" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/jim-2018-000974.461</a>
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Title
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Development and integration of a perinatal palliative care program at a tertiary care center
Publisher
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Journal of Investigative 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
hospice; newborn; anencephalus; intensive care; clergy; nurse; social worker; comfort; practice guideline; neonatologist; tertiary care center; conference abstract; human; child; female; controlled study; perinatal care; palliative therapy; abortion; electronic medical record; fetus malformation; Oklahoma; prenatal diagnosis
Creator
An entity primarily responsible for making the resource
Shah B A; May R; White L; Wlodaver A
Description
An account of the resource
Purpose of study Advances in fetal medicine have increased referrals to tertiary perinatal care centers. NRP guidelines recommend that only neonates with anencephaly and less than. 400 grams are not to be resuscitated. In 2015, Oklahoma passed a law stating 'it is the duty of the physician to inform the woman who carries a fetus with anomalies that perinatal hospice services are available and that this is an alternative to abortion'. We aim to describe the process of developing a perinatal palliative care (PPC) program for newborns with prenatal diagnoses of life-limiting conditions. Methods used Focus groups were conducted with responsible parties. Existing resources were identified. Implementation approaches were discussed. Summary of results The need for a PPC team was identified. Nurses, neonatologists, chaplains, social workers and child life specialists were integrated into this service with the support of an existing pediatric palliative care team. A new PPC program was introduced. Prenatal consults initiated by maternal-fetal medicine are an integral part of the prenatal care. Options of intensive care versus comfort care are offered. A neonatologist attends all these deliveries. The newborn stays with the mother. Special nurses were assigned for comfort care in the mother's room. Guidelines and specific PPC orders are now available in the electronic medical record. Examples are listed in the table 1. A website was created to inform referring physicians about this new program. Conclusions PPC was successfully established at a regional tertiary center. Parents of newborns diagnosed with lethal conditions have the choice of often non-beneficial intensive care or care focused on comfort after birth. This specialized care allows parents to celebrate the limited life of their precious newborns. Providers across the state have now access to a referral center offering perinatal neonatal palliative care. (Table Presented).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/jim-2018-000974.461" target="_blank" rel="noreferrer noopener">10.1136/jim-2018-000974.461</a>
2019
Abortion
anencephalus
Child
Clergy
Comfort
conference abstract
Controlled Study
electronic medical record
Female
Fetus Malformation
Hospice
Human
Intensive Care
Journal Of Investigative Medicine
June 2019 List
May R
Neonatologist
Newborn
Nurse
Oklahoma
Palliative Therapy
Perinatal Care
Practice Guideline
Prenatal Diagnosis
Shah B A
Social Worker
tertiary care center
White L
Wlodaver A
-
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Title
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November 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
November 2019 List
URL Address
<a href="http://doi.org/10.1038/s41372-019-0490-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41372-019-0490-y</a>
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Title
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Early palliative care reduces stress in parents of neonates with congenital heart disease: validation of the "Baby, Attachment, Comfort Interventions"
Publisher
An entity responsible for making the resource available
Journal of perinatology : official journal of the California Perinatal Association.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
comfort; congenital heart disease; mental stress; palliative therapy; anxiety; article; child parent relation; cohort analysis; controlled study; emotional attachment; female; health care quality; human; infant; male; newborn; prospective study
Creator
An entity primarily responsible for making the resource
Callahan K; Steinwurtzel R; Brumarie L; Schechter S; Parravicini E
Description
An account of the resource
OBJECTIVE: To test our hypothesis that an innovative method of early palliative care called "Baby, Attachment, Comfort Interventions" reduces psychological distress in parents of neonates with congenital heart disease. STUDY DESIGN: Prospective cohort study of parents of neonates with congenital heart disease. Distress was evaluated at admission and discharge using Neonatal Unit Parental Stressor Scale and Depression Anxiety Stress Index-21. Control parents received standard of care. Intervention parents received interdisciplinary interventions aimed at improving neonatal comfort and parenting experience.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1038/s41372-019-0490-y" target="_blank" rel="noreferrer noopener">10.1038/s41372-019-0490-y</a>
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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).
2019
anxiety
Article
Brumarie L
Callahan K
Child Parent Relation
Cohort Analysis
Comfort
Congenital Heart Disease
Controlled Study
emotional attachment
Female
Health Care Quality
Human
Infant
Journal of perinatology : official journal of the California Perinatal Association.
Male
Mental Stress
Newborn
November 2019 List
Palliative Therapy
Parravicini E
Prospective Study
Schechter S
Steinwurtzel R
-
Dublin Core
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Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
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URL Address
<a href="http://doi.org/10.1016/j.ejpn.2016.09.006" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ejpn.2016.09.006</a>
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Effect of selective dorsal rhizotomy on daily care and comfort in non-walking children and adolescents with severe spasticity
Publisher
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European Journal of Paediatric Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
adolescent; risk factor; medical history; follow up; satisfaction; school child; comfort; cerebral palsy; congenital malformation; human; pain; child; controlled study; clinical article; attention; dystonia; dorsal rhizotomy; scoliosis; leg muscle; tone and motor problems; lipidoses; surgical intervention; selective dorsal rhizotomy; spasticity
Creator
An entity primarily responsible for making the resource
Buizer A I; van Schie P E M; Bolster E A M; van Ouwerkerk W J; Strijers R L; van de Pol L A; Stadhouder A; Becher J G; Vermeulen R J
Description
An account of the resource
Background In non-walking children with severe spasticity, daily care can be difficult and many patients suffer from pain. Selective dorsal rhizotomy (SDR) reduces spasticity in the legs, and therefore has the potential to improve daily care and comfort. Aim To examine effects of SDR on daily care and comfort in non-walking children with severe spasticity due to different underlying neurological conditions. Methods Medical history, changes in daily care and comfort and satisfaction with outcome were assessed retrospectively in non-walking children who underwent SDR in our center, with a mean follow-up of 1y 7m (range 11m-4y 3m). All eligible patients (n = 24, years 2009-2014) were included. Results Mean age at SDR was 12y 4m (SD 4y 3m, range 2y 8m-19y 3m). Associated orthopaedic problems were frequent. Seven patients underwent scoliosis correction in the same session. Most improvements were reported in dressing (n = 16), washing (n = 12) and comfort (n = 10). Median score for satisfaction was 7 on a scale of 10 (range 1-9). SDR resulted in reduction of spasticity in leg muscles. In nine patients dystonia was recorded post-operatively, mainly in children with congenital malformations and syndromes. Interpretation SDR is a single event intervention that can improve daily care and comfort in non-walking children with severe spasticity, and can safely be combined with scoliosis correction. Despite the improvements, satisfaction is variable. Careful attention is necessary for risk factors for dystonia, which may be unmasked after SDR. Copyright © 2016 European Paediatric Neurology Society
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ejpn.2016.09.006" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2016.09.006</a>
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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).
2017
Adolescent
Attention
Becher J G
Bolster E A M
Buizer A I
Cerebral Palsy
Child
Clinical Article
Comfort
Congenital Malformation
Controlled Study
dorsal rhizotomy
Dystonia
European Journal of Paediatric Neurology
Follow Up
Human
leg muscle
lipidoses
Medical History
Pain
risk factor
Satisfaction
School Child
scoliosis
selective dorsal rhizotomy
Spasticity
Stadhouder A
Strijers R L
surgical intervention
tone and motor problems
van de Pol L A
van Ouwerkerk W J
van Schie P E M
Vermeulen R J
-
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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May 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
May 2020 List
URL Address
<a href="http://doi.org/10.1089/jpm.2019.0299" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0299</a>
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Title
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Emergencies in Pediatric Palliative Care: A Survey of Ambulance Officers to Understand the Interface between Families and Ambulance Services
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
2020
Subject
The topic of the resource
ambulance; article; attitude; child; comfort; controlled study; counseling; e-mail; emergency health service; human; medical documentation; Palliative therapy; pediatric patient; perception; Queensland; resuscitation; writing
Creator
An entity primarily responsible for making the resource
Mott C; Herbert A; Malcolm K; Sansone H; Agar M
Description
An account of the resource
Background: Pediatric palliative care occurs across contexts through the child's illness trajectory, including within the child or young person's community. Interactions with the ambulance service may occur with a child's deterioration, crisis, or when needing transfer, but there is little research on this interaction. Aim: To explore the experiences and attitudes of ambulance officers in managing pediatric patients with palliative care needs. Design: A targeted e-mail survey was sent exploring perceptions of the involvement with these patients including exposure, comfort, resuscitation topics, and supports available. Setting/Participants: Participants were Queensland ambulance officers known to have had an interaction with one of the last 50 pediatric palliative care referrals across Queensland. Results: Twenty-two survey responses were received. Most of the palliative group accessed ambulances for the 13-month study period. Most ambulance officers did not easily identify patients as receiving palliative care. Many participants felt these cases were challenging, confidence levels varied, and staff counselling services were felt to be relevant. Ambulance officers were most likely to use correspondence provided by the family from their usual team as a guide for emergency management. Half of the participants felt patients receiving pediatric palliative care should have a "not for resuscitation" order. Respondents suggested officer support could be improved through increased patient documentation and promotion of existing officer supports. Conclusions: These findings demonstrate challenges experienced by ambulance officers and suggest practical ways in which pediatric palliative care services can better support emergency services.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2019.0299" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0299</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).
2020
Agar M
ambulance
Article
Attitude
Child
Comfort
Controlled Study
Counseling
E-mail
Emergency Health Service
Herbert A
Human
Journal of Palliative Medicine
Malcolm K
May 2020 List
medical documentation
Mott C
Palliative Therapy
pediatric patient
Perception
Queensland
Resuscitation
Sansone H
writing
-
Dublin Core
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Title
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February 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
February 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/141/1_MeetingAbstract/380">https://pediatrics.aappublications.org/content/141/1_MeetingAbstract/380</a>
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Evaluation of residents' level of comfort with palliative care concepts before and after
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
child; comfort; conference abstract; controlled study; hospice; human; life; nomenclature; nurse practitioner; palliative therapy; patient care; pediatric hospital; residency education; skill; tertiary health care; total quality management
Creator
An entity primarily responsible for making the resource
Pohl C E
Description
An account of the resource
Introduction The specialty of Pediatric Palliative care and Hospice is growing exponentially, however, residency training programs are often underprepared to meet the evolving educational needs of their trainees with regards to the field. While Pediatric Advance Care Teams (PACT) have been established at many children's hospitals, they are frequently in different stages of development. Residents are often at the forefront of patient care, and may find themselves in difficult end-of-life situations requiring skills not formally taught in their training. As PACT teams grow into their roles at various children's hospitals, residents will continue to be challenged by unfamiliar and unique situations, resulting in a need to educate residents in palliative care. Methods The objective of the quality improvement project was to evaluate residents' understanding of several concepts of palliative care, develop an educational intervention, and to reevaluate resident understanding following this intervention. Goal improvement was 40% over 2 months. 91 pediatric residents of a single program associated with a tertiary care pediatric hospital were invited to participate in the survey. The pretest survey addressed residents' level of comfort of 5 concepts in palliative care on a scale from 1 (least) to 10 (most). The pretest evaluated comfort describing palliative care terminology, comfort discussing concepts with family, and their ability to identify the roles for residents and PACT. After collection, a conference was prepared by the investigators in collaboration with the PACT team physician and nurse practitioner to ensure consistency within the institution. The conference was designed to address knowledge gaps revealed by the survey. Audio and visuals were recorded and made accessible online for all residents. Following the conference, a document was distributed to the residents, addressing the educational needs concerning palliative care, as well as scholarly links to numerous AAP resources on palliative care. A post intervention survey identical to the pretest was then administered. Results 55 residents responded to the pretest survey, with 16 responding post intervention. Pretest mean scores were calculated from the 5 questions, with an average score of 5.68 of a possible 10. Post test mean scores were averaged with result of 7.60 of a possible 10. Post test intervention mean scores showed an increase of 34% from baseline. Conclusion These results show that after intervention, there is a significant increase in residents' level of comfort regarding understanding of basic concepts of palliative care. With educational materials which concisely address the needs determined by initial evaluation, we were able to effectively engage the residents through both audio and visual means to achieve an appreciable and replicable intervention for educating residents in palliative care. Moving forward, we will focus on continuing educational and clinical opportunities for residents in collaboration with the growth of the PACT team.
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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).
2018
Child
Comfort
conference abstract
Controlled Study
February 2020 List
Hospice
Human
Life
Nomenclature
Nurse Practitioner
Palliative Therapy
Patient Care
Pediatric Hospital
Pediatrics
Pohl C E
residency education
Skill
tertiary health care
Total Quality Management
-
Dublin Core
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Title
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2019 Developing World List
Text
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Citation List Month
Developing World 2019 List
URL Address
<a href="http://doi.org/10.1177/0825859719827021" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0825859719827021</a>
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Title
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Factors Associated With Knowledge and Comfort Providing Palliative Care: A Survey of Pediatricians in Mexico
Publisher
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Journal of Palliative 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
barriers; comfort; education; knowledge; Mexico; pediatric palliative care
Creator
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Zuniga-Villanueva G; Ramirez-GarciaLuna J L; Weingarten K
Description
An account of the resource
BACKGROUND:: Lack of education and training in palliative care has been described to be one of the most important barriers to pediatric palliative care implementation. OBJECTIVE:: To examine what factors determine the degree of knowledge and level of comfort Mexican pediatricians have providing pediatric palliative care. METHODS:: A questionnaire that assessed palliative care concepts was developed and applied online to Mexican pediatricians, both generalists and specialists. RESULTS:: A total of 242 pediatricians responded. The majority had not received palliative care education (92.6%) and felt uncomfortable discussing palliative needs with patients and families (92.1%). The mean score of the questionnaire was 6.8 (+/-1.4) of 10 correct answers. Knowledge in palliative care was associated with exposure to oncologic patients ( P = .01) and previous palliative care education ( P = .02) but inversely related to the pediatrician's age ( P = .01). Comfort addressing patient's palliative care needs was associated with knowledge in palliative care ( P < .01), exposure to oncologic patients ( P = .03), and previous education in palliative care ( P = .02). CONCLUSIONS:: Although Mexican pediatricians have basic knowledge of palliative care concepts, they do not feel comfortable addressing palliative care needs, suggesting that the main barrier for implementing palliative care is not the lack of knowledge but rather feeling uncomfortable when addressing these issues with patients and families. Educational programs should incorporate strategies that could help physicians develop comfort in approaching palliative care patients.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0825859719827021" target="_blank" rel="noreferrer noopener">10.1177/0825859719827021</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).
2019
Barriers
Comfort
Developing World 2019 List
Education
Journal Of Palliative Care
Knowledge
Mexico
Pediatric Palliative Care
Ramirez-GarciaLuna J L
Weingarten K
Zuniga-Villanueva G
-
Dublin Core
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Title
A name given to the resource
2019 Developing World 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
Developing World 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.414" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2018.10.414</a>
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Title
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Frequency and Clinical Characteristics Associated With Pediatric Deaths In a Tertiary Hospital in a Developing Country - Opportunities for Pediatric Palliative Care
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
2018
Subject
The topic of the resource
antibiotic therapy; artificial ventilation; brain death; cause of death; child; clinical feature; comfort; conference abstract; controlled study; demography; developing country; diagnosis; drug withdrawal; female; health care quality; hospital patient; human; human tissue; inotropism; life sustaining treatment; major clinical study; male; medical record; neonatal intensive care unit; newborn; palliative therapy; pediatric patient; resuscitation; retrospective study; sedation; statistical analysis; terminal care; tertiary care center
Creator
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Cuervo Suarez M I; Munoz M; Garcia X
Description
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Background: Colombia does not have knowledge about the clinical characteristics of pediatric deaths caused by life-threatening conditions and/or serious illness within the hospital setting.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.414" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.414</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).
2018
antibiotic therapy
Artificial Ventilation
Brain Death
Cause Of Death
Child
Clinical Feature
Comfort
conference abstract
Controlled Study
Cuervo Suarez M I
Demography
developing country
Developing World 2019 List
Diagnosis
Drug Withdrawal
Female
Garcia X
Health Care Quality
Hospital Patient
Human
Human Tissue
inotropism
Journal of Pain and Symptom Management
Life Sustaining Treatment
Major Clinical Study
Male
Medical Record
Munoz M
Neonatal Intensive Care Unit
Newborn
Palliative Therapy
pediatric patient
Resuscitation
Retrospective Study
Sedation
statistical analysis
Terminal Care
tertiary care center
-
Dublin Core
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Title
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August 2023 List
Text
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August List 2023
URL Address
<a href="http://doi.org/10.1001/jamapediatrics.2023.1602" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamapediatrics.2023.1602</a>
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Title
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Goals of Care Among Parents of Children Receiving Palliative Care
Publisher
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JAMA Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; Palliative Care; article; cohort analysis; controlled study; human; major clinical study; male; chronic disease; Patient Care Planning; quality of life; palliative therapy; comfort; demographics; life extension
Creator
An entity primarily responsible for making the resource
Feudtner C; Beight LJ; Boyden JY; Hill DL; Hinds PS; Johnston EE; Friebert SE; Bogetz JF; Kang TI; Hall M; Nye RT; Wolfe J
Description
An account of the resource
Importance: While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known. <br/>Objective(s): To determine parental prioritization of GOCs and patterns of change over time for parents of children receiving palliative care. <br/>Design, Setting, and Participant(s): A Pediatric Palliative Care Research Network's Shared Data and Research cohort study with data collected at 0, 2, 6, 12, 18, and 24 months in hospital, outpatient, or home settings from April 10, 2017, to February 15, 2022, at 7 PPC programs based at children's hospitals across the US. Participants included parents of patients, birth to 30 years of age, who received PPC services. Exposures: Analyses were adjusted for demographic characteristics, number of complex chronic conditions, and time enrolled in PPC. Main Outcomes: Parents' importance scores, as measured using a discrete choice experiment, of 5 preselected GOCs: seeking quality of life (QOL), health, comfort, disease modification, or life extension. Importance scores for the 5 GOCs summed to 100. <br/>Result(s): A total of 680 parents of 603 patients reported on GOCs. Median patient age was 4.4 (IQR, 0.8-13.2) years and 320 patients were male (53.1%). At baseline, parents scored QOL as the most important goal (mean score, 31.5 [SD, 8.4]), followed by health (26.3 [SD, 7.5]), comfort (22.4 [SD, 11.7]), disease modification (10.9 [SD, 9.2]), and life extension (8.9 [SD, 9.9]). Importantly, parents varied substantially in their baseline scores for each goal (IQRs more than 9.4), but across patients in different complex chronic conditions categories, the mean scores varied only slightly (means differ 8.7 or less). For each additional study month since PPC initiation, QOL was scored higher by 0.06 (95% CI, 0.04-0.08) and comfort scored higher by 0.3 (95% CI, 0-0.06), while the importance score for life extension decreased by 0.07 (95% CI, 0.04-0.09) and disease modification by 0.02 (95% CI, 0-0.04); health scores did not significantly differ from PPC initiation. <br/>Conclusions and Relevance: Parents of children receiving PPC placed the highest value on QOL, but with considerable individual-level variation and substantial change over time. These findings emphasize the importance of reassessing GOCs with parents to guide appropriate clinical intervention.
Identifier
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<a href="http://doi.org/10.1001/jamapediatrics.2023.1602" target="_blank" rel="noreferrer noopener">10.1001/jamapediatrics.2023.1602</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).
2023
Article
August List 2032
Beight LJ
Bogetz JF
Boyden JY
Child
Chronic Disease
Cohort Analysis
Comfort
Controlled Study
Demographics
Feudtner C
Friebert SE
Hall M
Hill DL
Hinds PS
Human
JAMA Pediatrics
Johnston EE
Kang TI
life extension
Major Clinical Study
Male
Nye RT
Palliative Care
Palliative Therapy
Patient Care Planning
Quality Of Life
Wolfe J
-
Dublin Core
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Title
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2019 Oncology List
Text
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Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27713</a>
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Improving pediatric palliative care in a community-based setting through an ongoing education series
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
administrative personnel; checklist; child; clergy; comfort; community hospital; conference abstract; conversation; do not resuscitate order; dying; education; female; hospice care; human; Likert scale; major clinical study; male; needs assessment; nurse; palliative therapy; pharmacist; simulation; social worker; Texas
Creator
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Moonat H; Nguyen L
Description
An account of the resource
Background: Community hospitals represent a unique setting to provide pediatric palliative care (PPC), given their usual proximity to a patient's home. Texas Children's Hospital, TheWoodlands (TCH-TW) is a community-based campus that opened in April 2017. Hospital staff have varying experience in PPC and are unfamiliar with available resources. Absence of focused training on PPC and relative paucity of exposure to PPC necessitates an urgent need for improvement. Objective(s): 1. To understand baseline comfort of TCH-TW staff members in delivering PPC in a community-based setting and identify areas of improvement and knowledge gaps. 2. To pilot a campus wide ongoing education series that improves overall comfort and knowledge of TCH-TW staff members in delivering PPC in a community-based setting. Design/Method: An electronic survey (using a 5 point Likert scale) was sent to 350 staff members including physicians, mild-level providers, nurses, social workers, child life specialists, chaplains, pharmacists, and administrators to conduct a needs assessment. Results were analyzed to design a quarterly education series, utilizing didactic presentations, simulations, and small group discussions. Feedback tools included pre- and post-assessment questions, audience response system, and competency checklists. Result(s): One-hundred forty three participants (40%) completed the survey. Staff members reported an average score ~3.16 when asked if they felt the campus was 'palliative care friendly.' They reported a comfort level ~2.90 with regards to having end-of-life discussions with patients and their families, and a rating ~2.33 when it came to placing 'do-not-resuscitate' orders. An average comfort level ~3.28 was reported when caring for an actively dying patient and acute symptom management. Additional areas of improvement included understanding essential differences between palliative, concurrent, and hospice care (average score~3.39), as well as logistics and information accessibility to identify PPC resources within the campus (average score ~2.85 and ~2.93, respectively). The inaugural lecture- 'Hospice 101: Providing Palliative Care in the Community Hospital Setting: An Interprofessional Approach-' was launched in October 2018, with 37 participants reporting an overall activity quality score ~4.53. Additional lectures planned over the academic year include: having difficult conversations; logistics of when a patient dies at TCH-TW; and management of an actively dying patient. Conclusion(s): Community hospitals have a unique opportunity to provide PPC services due their closer proximity to a patient's own home. Through an ongoing campus wide educational series initiative, we aim to provide a high-quality palliative care experience that better serves our patient population.
Identifier
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<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</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).
2019
administrative personnel
Checklist
Child
Clergy
Comfort
community hospital
conference abstract
Conversation
do not resuscitate order
Dying
Education
Female
Hospice Care
Human
Likert scale
Major Clinical Study
Male
Moonat H
Needs Assessment
Nguyen L
Nurse
Oncology 2019 List
Palliative Therapy
Pediatric Blood and Cancer
pharmacist
Simulation
Social Worker
Texas
-
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
April 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
April 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/671" target="_blank" rel="noreferrer noopener">https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/671</a>
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Title
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Improving the frequency of symptom assessment in pediatric palliative care patients
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
awareness; child; clinical evaluation; comfort; conference abstract; e-mail; electronic medical record; hospital patient; human; human cell; information technology; outpatient; Palliative therapy; quality of life; root cause analysis; stem cell; symptom assessment; total quality management
Creator
An entity primarily responsible for making the resource
Mark M S; McKenna L; Thienprayoon R
Description
An account of the resource
High quality symptom management for children receiving palliative care relies on accurate and timely documentation of symptoms. Our pediatric palliative and comfort care team (PACT) previously established a mechanism in to assess and document symptoms in the electronic medical record (EMR) using a symptoms assessment tool modified from the Memorial Symptom Assessment Scale (MSAS). Our specific aim was to increase the percentage of MSAS evaluations completed and properly documented at the time of consult completion and at least weekly thereafter by PACT providers from 20% to 90% over six months. This project utilized standard quality improvement methodology. We began with a process map, documented process failures using a PARETO chart, and subsequently performed root cause analysis for each failure. Multiple tests of change were run for the following interventions: an initial educational session, MSAS badge reminder cards, adding MSAS awareness to our morning patient huddle, notification of individual completion rates via email, public posting of individual completion rates, a visual reminder with a colorful stamp on daily patient list, modification to the EMR patient list view and EMR flowsheet interface where MSAS is documented. We also performed in-depth reviews of any failures that were identified. Within 4 months of implementation the aim was exceeded and a median of 100% of patients had documented MSAS evaluations. This was considered a significant improvement based on the Institute for Healthcare Improvement Scale. These results have been sustained for an additional 8 months. Factors that impacted success included active engagement of all team members in the improvement process, frequent recognition and treatment of new symptoms, and ongoing updates regarding individual completion rates. Our dependence on the EMR was a limiting factor in sustainability as not all parts of the process were able to be automated and some steps still depend on human factors. Improving existing structure of team communication became critical as we implemented tests of change. Next steps for this project include utilizing the weekly MSAS data available on all patients to study those symptoms experienced specifically by children undergoing stem cell transplant. We will continue to work with our hospital information technology staff to further develop sustainability via process changes in the EMR. In addition we will expand our symptom assessment to include all outpatient consults. Finally, as we have standardized, reliable method to measure symptoms for all inpatients, we intend to design interventions targeting improving symptom management and health-related quality of life in children receiving palliative care in our institution.
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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).
2018
April 2020 List
Awareness
Child
clinical evaluation
Comfort
conference abstract
E-mail
electronic medical record
Hospital Patient
Human
human cell
information technology
Mark M S
McKenna L
Outpatient
Palliative Therapy
Pediatrics
Quality Of Life
root cause analysis
stem cell
Symptom Assessment
Thienprayoon R
Total Quality Management
-
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 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
August 2019 List
URL Address
<a href="http://doi.org/10.1097/NJH.0000000000000576" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/NJH.0000000000000576</a>
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Interdisciplinary Perspectives on the Value of Massage Therapy in a Pediatric Hospice
Publisher
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Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association.
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; controlled study; thematic analysis; clinical article; staff; comfort; perception; clinician; hospice care; massage; semi structured interview; accident prevention; human dignity; leisure; rest; self care
Creator
An entity primarily responsible for making the resource
Egeli D; Bainbridge L; Miller T; Potts J
Description
An account of the resource
Canuck Place Children's Hospice in Vancouver, Canada, has been hosting a massage therapy practicum within the hospice since 2011. The practicum is delivered by upper-level massage therapy students who are supervised by a registered massage therapist and clinical instructor through West Coast College of Massage Therapy. This study aimed to explore clinicians' perspectives on the value of providing massage therapy to support children in hospice care, their families, and staff. The research participants (n = 6) comprised Canuck Place clinicians who have experience with the massage therapy practicum. In this descriptive phenomenological inquiry, semistructured interviews and thematic analysis were used. The findings demonstrated that Canuck Place clinicians valued the massage therapy practicum for its practical support in terms of creating access to massage therapy and self-care in the hospice. Massage therapy was also valued for supporting physical wellness (injury prevention/maintenance and symptom management) and psychosocial wellness (supporting dignity, interconnection, intraconnection, and rest/relaxation and providing a source of comfort/nurturing). This study is the first to explore clinicians' perceptions of massage therapy within a pediatric hospice and contributes to understanding massage therapy's potential role in the support of children, families, and staff within a hospice setting.
Identifier
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<a href="http://doi.org/10.1097/NJH.0000000000000576" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000576</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).
2019
accident prevention
Article
August 2019 List
Bainbridge L
Child
Clinical Article
Clinician
Comfort
Controlled Study
Egeli D
Female
Hospice Care
Human
Human Dignity
Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association.
leisure
Male
Massage
Miller T
Perception
Potts J
rest
Self Care
Semi Structured Interview
Staff
Thematic Analysis
-
Dublin Core
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Title
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October 2022 List
Text
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Citation List Month
October 2022 List
URL Address
<a href="http://doi.org/10.1080/09699260.2022.2094173">http://doi.org/10.1080/09699260.2022.2094173</a>
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National Survey of Sibling Support Services in Children's Hospitals
Publisher
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Progress in Palliative Care.
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Child; life; Palliative care; Pediatric; Psychosocial support; Serious illness; Siblings; article; child; comfort; distress; syndrome; education; human; palliative; therapy; psychosocial; care; quality of life; sibling; teaching; United States
Creator
An entity primarily responsible for making the resource
Mooney-Doyle K; Franklin QM; Burley SR; Root MC; Akard TF
Description
An account of the resource
Nearly a quarter-million children are siblings to children living with serious illness. Intense physical, emotional, social and psychological concerns are introduced when a brother or sister is diagnosed with a serious illness or disease. Support services for siblings are critical to promote positive outcomes and decrease negative consequences and align with parents' desires to support all of their children. These include services offered to the sibling or family to provide comfort or enhance the quality of life during a child's serious illness. Despite national standards, sibling support services are often difficult for families to access. The aim of this study was to describe sibling support activities provided through teaching children's hospitals across the United States using a cross-sectional, descriptive design. Results indicate most hospitals surveyed offer sibling support services that focus on sibling education about the illness; parent education on how to anticipate the siblings needs; and activities for families to do together, yet face barriers to delivery. Services focused directly on siblings and actively supporting their adaptation were least often provided and less than half reported screening siblings for psychosocial distress. Findings suggest that sibling support services may be an important resource to minimize distress and promote adaptation for siblings. This description of current and available sibling support services is an important starting point for enhancing services, policies, and institutions that fully envelope siblings into patient- and family-centered care. Copyright © 2022 Informa UK Limited, trading as Taylor & Francis Group.
Identifier
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<a href="http://doi.org/10.1080/09699260.2022.2094173">10.1080/09699260.2022.2094173</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).
2022
Akard TF
Article
Burley SR
CARE
Child
Comfort
Distress
Education
Franklin QM
Human
Life
Mooney-Doyle K
October 2022 List
Palliative
Palliative Care
Pediatric
Progress in Palliative Care.
psychosocial
psychosocial support
Quality Of Life
Root MC
Serious Illness
Sibling
Siblings
Syndrome
Teaching
Therapy
United States
-
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 2017 List
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Title
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Neonatal Palliative Care
Publisher
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Current Opinion In Pediatrics.
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Palliative Therapy; Basic Needs; Comfort; Distress Syndrome; Follow Up; Grief; Human; Newborn; Practice Guideline; Prognosis; Satisfaction; Terminal Care
Creator
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Parravicini E
Description
An account of the resource
PURPOSE OF REVIEW: A significant number of newborns are affected by life-limiting or life-threatening conditions. When prolongation of survival is no longer a goal, or prognosis is uncertain, a plan of care focused on the infant's comfort is essential. The aim of this article is to review the most recent and relevant literature regarding neonatal palliative care (NPC). RECENT FINDINGS: A variety of perinatal and NPC programs are described, but most programs focus exclusively on end-of-life care. Moreover, there is a great need to standardize practices and obtain follow-up quality measures.Guidelines to address infants' basic needs, to achieve a state of comfort, are proposed. A multidisciplinary team addressing the infants' medical and nonmedical needs, parental grieving process, and providers' distress is recommended. SUMMARY: NPC is a unique multidisciplinary approach for the care of newborns affected by life-limiting or complex medical conditions with uncertain prognosis. Standardized guidelines should be implemented with the goal of achieving a state of comfort for newborns throughout the course of illness. Further studies are warranted to assess whether NPC effectively promotes newborns' comfort and parents and providers' satisfaction. Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.
Identifier
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10.1097/MOP.0000000000000464
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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).
2017
Basic Needs
Comfort
Current Opinion in Pediatrics.
Distress Syndrome
Follow Up
Grief
Human
March 2017 List
Newborn
Palliative Therapy
Parravicini E
Practice Guideline
Prognosis
Satisfaction
Terminal Care
-
Text
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Citation List Month
December 2017 List
URL Address
<a href="http://doi.org/10.1016/j.ijrobp.2017.06.208" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ijrobp.2017.06.208</a>
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Title
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Palliative radiation therapy for pediatric patients: Parental perceptions
Publisher
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International Journal Of Radiation Oncology Biology Physics
Date
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2017
Subject
The topic of the resource
Perception; Analgesia; Brain; Breathing; Cancer Staging; Child; Comfort; Disease Course; Expectation; Female; Human; Institutional Review; Male; Palliative Therapy; Prevention; Prospective Study; Quality Of Life; Questionnaire; Radiotherapy; Spinal Cord Compression; Statistics
Creator
An entity primarily responsible for making the resource
Lee BKY; Apkon D; Wolfe J; Marcus KJ
Description
An account of the resource
Purpose/Objective(s): Palliative radiation therapy (pRT) for pediatric cancer patients is often used to treat pain, neurologic symptoms, and other conditions from progressive cancer that affects quality of life. However, though the doses used are generally lower than those used for curative treatment, pRT may still introduce undesirable side effects. A parent's decision to pursue additional anti-cancer therapy towards the end of their child's life may be challenging, as the perceived risk-versus-benefit ratio may be altered depending on their knowledge and expectations for the pRT. As anti-cancer directed treatment continues to be offered, the line between curing and palliation may become blurred. The goal of this study was to explore parental perceptions of pRT with regards to its purpose and expected outcome. Purpose/Objective(s): Forty-five children referred for pRT were enrolled in a prospective institutional review board-approved study. At the time of initial consultation, parents were counseled regarding the indication for pRT and the expected outcomes of treatment. At one to three months after treatment completion, a questionnaire was given to parents to assess their understanding of the role of pRT for their child. They were asked to specify the reasons for pRT as well as their expectations of the treatment outcome. Descriptive statistics were used to analyze the results of the questionnaire. Results: The main indications for pRT in this cohort were pain (44%), spinal cord compression (3%), neurologic symptoms from brain mass (18%), leptomeningeal involvement (3%), asymptomatic radiologic progression (18%), and other indications (13%). When asked about the reasons for pRT in their child, parents reported the following: pain relief (51%), addressing new disease such as radiologic progression (40%), prevention of damage to spinal cord (11%), and help with breathing (2%). 49% listed additional reasons, including control of existing tumors or prevention of pain (as opposed to pain control). When asked about their expectations for the pRT, 76% of parents marked improvement in quality of life. An equal proportion (76%) also expected prolongation of their child's life. 53% included pain relief as one of their expectations. Interestingly, 40% of parents expected the pRT to also cure their child's malignant disease. Conclusion: Radiation therapy is an important modality in palliative care for children with end-stage cancer. Improved quality of life through pRT sometimes blurs the distinction between palliative and curative intent of the treatment. In this study, we found that a large proportion of parents perceived pRT to play a curative role for their child's malignancy, despite having been informed initially that the treatment was palliative. Thus, many parents seem to derive hope and comfort from having their child continue to receive some active treatment. Studies are ongoing to determine parents' assessment of whether pRT did achieve what they had hoped for their child.
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<a href="http://doi.org/10.1016/j.ijrobp.2017.06.208" target="_blank" rel="noreferrer">10.1016/j.ijrobp.2017.06.208</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).
2017
Analgesia
Apkon D
Brain
Breathing
Cancer Staging
Child
Comfort
December 2017 List
Disease Course
Expectation
Female
Human
Institutional Review
International Journal Of Radiation Oncology Biology Physics
Lee BKY
Male
Marcus KJ
Palliative Therapy
Perception
Prevention
Prospective Study
Quality Of Life
Questionnaire
Radiotherapy
Spinal Cord Compression
Statistics
Wolfe J
-
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Title
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2019 Oncology List
Text
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Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1002/pbc.28003" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.28003</a>
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Title
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Palliative radiotherapy for pediatric patients: Parental perceptions of indication, intent, and outcomes
Publisher
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Pediatric Blood and Cancer
Date
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2020
Subject
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analgesia; article; child; clinical article; comfort; controlled study; expectation; female; human; male; palliative therapy; pediatric patient; perception; prospective study; quality of life; questionnaire; radiation oncology; radiotherapy; side effect
Creator
An entity primarily responsible for making the resource
Lee B K; Boyle P J; Zaslowe-Dude C; Wolfe J; Marcus K J
Description
An account of the resource
Objectives: Palliative radiation therapy (pRT) is often used to improve quality of life for pediatric patients. Though palliative doses are generally lower than those for cure, pRT may still introduce undesirable effects. The decision to pursue additional therapy for a child may be challenging and depends on parents' knowledge and expectations. The goal of this study was to explore parental perceptions of pRT.
Identifier
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<a href="http://doi.org/10.1002/pbc.28003" target="_blank" rel="noreferrer noopener">10.1002/pbc.28003</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).
2020
Analgesia
Article
Boyle P J
Child
Clinical Article
Comfort
Controlled Study
Expectation
Female
Human
Lee B K
Male
Marcus K J
Oncology 2019 List
Palliative Therapy
Pediatric Blood and Cancer
pediatric patient
Perception
Prospective Study
Quality Of Life
Questionnaire
radiation oncology
Radiotherapy
Side Effect
Wolfe J
Zaslowe-Dude C
-
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Title
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November 2022 List
Text
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Citation List Month
November 2022 List
URL Address
<a href="http://doi.org/10.1016/j.ajogmf.2022.100725" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.ajogmf.2022.100725</a>
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Title
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Patient-Centered Perinatal Palliative Care: Family Birth Plans, Outcomes, and Resource Utilization in a Diverse Cohort
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American Journal of Obstetrics & Gynecology MFM
Date
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2022
Subject
The topic of the resource
Article; Child; Cohort Analysis; Comfort; Consultation; Controlled Study; Demographics; Expectation; Female; Fetus; Fetus Malformation; Hospice; Human; Income Group; Infant; Newborn; Outcome Assessment; Palliative Therapy; Postpartum Hemorrhage; Prenatal Diagnosis; Prognosis; Retrospective Study; Trisomy 13
Creator
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Buskmiller C; Ho S; Chen M; Gants S; Crowe E; Lopez S
Description
An account of the resource
BACKGROUND: Perinatal palliative care (PPC) is an emerging concept in fetal medicine that offers quality of life options and anticipatory grief management for families of fetuses with complex conditions. Few PPC outcomes are detailed in peer-reviewed literature. OBJECTIVE(S): We aimed to describe outcomes of PPC at UT Fetal Center and Women and Infants Services at Children's Memorial Hermann. STUDY DESIGN: This is a retrospective cohort of families receiving PPC for life-limiting fetal diagnosis, such as trisomy 13 or 18 and some major structural anomalies, between 2016 and 2020. The primary outcome was whether delivery events matched families' birth plans, including fetal/neonatal clinical course matching expectations described by consultant notes. Secondary outcomes included maternal safety outcomes, use of perinatal interventions, delivery outcomes, and resource utilization outcomes. RESULT(S): Of 187 PPC consults, delivery events matched families' plans and clinicians' expectations in 89% of cases (165/185). 39% (73/187) of families requested some perinatal interventions, 64% of whom planned postnatal comfort care even while choosing antenatal interventions. Demographics and median income were similar between families who chose some interventions and those who chose comfort care. Patients choosing any interventions had more mismatches between their plans and delivery events (19% vs 2%, p < 0.001), were more likely to change their plans (24% vs 6%, p=0.001), and not unexpectedly used more healthcare resources. They were also more likely to have intraamniotic infection and postpartum hemorrhage (9% vs 22%, p=0.02), but this was associated with mode of delivery and not choice of interventions. CONCLUSION(S): Most families' perinatal experiences matched birth plans and expectations in this PPC program. Families who desired interventions used more healthcare resources, but often did so with plans for postnatal comfort care, demonstrating insight into neonatal prognosis but achieving value-consistent goals, like meeting a live neonate. PPC was safe for maternal patients and equitable across racial, ethnic, and income groups. PPC and some perinatal interventions are options for care of the whole family in complex fetal medicine.Copyright © 2022 Elsevier Ltd. All rights reserved.
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<a href="http://doi.org/10.1016/j.ajogmf.2022.100725" target="_blank" rel="noreferrer noopener">10.1016/j.ajogmf.2022.100725</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).
Article
Child
Female
Fetus
Infant
Newborn
2022
American Journal of Obstetrics & Gynecology MFM
Buskmiller C
Chen M
Cohort Analysis
Comfort
Consultation
Controlled Study
Crowe E
Demographics
Expectation
Fetus Malformation
Gants S
Ho S
Hospice
Human
income group
Lopez S
November 2022 List
outcome assessment
Palliative Therapy
postpartum hemorrhage
Prenatal Diagnosis
Prognosis
Retrospective Study
Trisomy 13
-
Dublin Core
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Title
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January 2018 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
January 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2017.09.078" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpeds.2017.09.078</a>
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Title
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Patterns of Care at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions
Publisher
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The Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
medical record; palliative therapy; Terminal Care; brain disease; central nervous system disease; Child; chromosome disorder; comfort; Death; Drug withdrawal; Female; Human; Intensive care unit; life sustaining treatment; lung disease; major clinical study; Male; Resuscitation; Study Design; Young Adult
Creator
An entity primarily responsible for making the resource
DeCourcey DD; Silverman M; Oladunjoye A; Balkin Emily M; Wolfe J
Description
An account of the resource
OBJECTIVE: To characterize patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions (LT-CCCs) and to compare them by LT-CCC type. STUDY DESIGN: Cross-sectional survey of bereaved parents (n = 114; response rate of 54%) of children with noncancer, noncardiac LT-CCCs who received care at a quaternary care children's hospital and medical record abstraction. RESULTS: The majority of children with LT-CCCs died in the hospital (62.7%) with more than one-half (53.3%) dying in the intensive care unit. Those with static encephalopathy (AOR, 0.19; 95% CI, 0.04-0.98), congenital and chromosomal disorders (AOR, 0.28; 95% CI, 0.09-0.91), and pulmonary disorders (AOR, 0.08; 95% CI, 0.01-0.77) were significantly less likely to die at home compared with those with progressive central nervous system (CNS) disorders. Almost 50% of patients died after withdrawal or withholding of life-sustaining therapies, 17.5% died during active resuscitation, and 36% died while receiving comfort care only. The mode of death varied widely across LT-CCCs, with no patients with pulmonary disorders dying receiving comfort care only compared with 66.7% of those with CNS progressive disorders. A majority of patients had palliative care involvement (79.3%); however, in multivariable analyses, there was distinct variation in receipt of palliative care across LT-CCCs, with patients having CNS static encephalopathy (AOR, 0.07; 95% CI, 0.01-0.68) and pulmonary disorders (AOR, 0.07; 95% CI, 0.01-.09) significantly less likely to have palliative care involvement than those with CNS progressive disorders. CONCLUSIONS: Significant differences in patterns of care at the end of life exist depending on LT-CCC type. Attention to these patterns is important to ensure equal access to palliative care and targeted improvements in end-of-life care for these populations.
Identifier
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<a href="http://doi.org/10.1016/j.jpeds.2017.09.078" target="_blank" rel="noreferrer">10.1016/j.jpeds.2017.09.078</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).
2017
Balkin Emily M
brain disease
central nervous system disease
Child
Chromosome Disorder
Comfort
Death
DeCourcey DD
Drug Withdrawal
Female
Human
Intensive Care Unit
January 2018 List
Life Sustaining Treatment
Lung Disease
Major Clinical Study
Male
Medical Record
Oladunjoye A
Palliative Therapy
Resuscitation
Silverman M
Study Design
Terminal Care
The Journal Of Pediatrics
Wolfe J
Young Adult
-
Dublin Core
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Title
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March 2018 List
Text
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Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.1097/01.ccm.0000528417.25863.42" target="_blank" rel="noreferrer">http://doi.org/10.1097/01.ccm.0000528417.25863.42</a>
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Title
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Pccm fellows' palliative care knowledge and attitudes surrounding a pilot educational initiative
Publisher
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Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
palliative therapy; Child; Clinical Article; cohort analysis; comfort; communication skill; Curriculum; Death; Human; Intensive Care; legal aspect; Likert scale; maturation; prospective study; role playing; simulation; spike
Creator
An entity primarily responsible for making the resource
Short SR; Poynter-Wong S; Flint H
Description
An account of the resource
Learning Objectives: The importance of Palliative and End of Life Care (PC, EOL) for children in the PICU with life-limiting, chronic conditions is increasingly recognized (1). Robust PC improves outcomes by symptom score, cost, and length of life (2-4). Pediatric Critical Care fellows (PCCF) report deficiencies in PC education and knowledge (5-7). This study measured PC knowledge, attitudes, and skills of PCCF at one center assessing how maturation impacts those indices. Methods: Prospective cohort study of PCCF surrounded a series of PC workshops. Two validated adapted tools evaluated endpoints; a survey of PCCFs' comfort, knowledge and experience (8) and a Communication Assessment (CA) using SPIKES methodology (9). Graduating fellows (GF, n = 4) and a current fellow cohort (CF, n = 11) completed the survey. In a simulation workshop, faculty (n = 2) used the CA to rate fellows' communication skills (n = 15). A CF cohort (n = 11) completed the post-curriculum survey. Results: Assessed PCCF's knowledge, attitudes and skills show maturation alone inadequately instructs PC, reflecting national data (5-9). Maturation did not alter self-appraised comfort providing PC in 6 (Likert scale 1-5)(composite scores by year; 1st 3.6, 2nd 3.3; 3rd; 3.5). With training, comfort managing conflict and emotion (1st 3.2; 3rd 3), symptoms at EOL (1st 3.7; 2nd 3.6; 3rd 4.1), and legal aspects of PC (1st 3.6; 3rd 3.7) did not change. Nor, did it improve objective knowledge scores (by year; 1st 54%; 2nd 46%; 3rd 51%; GF 65% p> 0.05) or communication skills by CA (scale 0-4)(1st 2.2; 2nd 2.6; 3rd 2). PC exposure, gauged by care conferences (cc) led and recalled deaths on clinical duty (cc 1-25; M= 8.5; deaths 5-36; M 13.5), did not correlate with comfort, communication skills, or knowledge. Post-workshop, more PCCF found PC education helpful (90 v 60%) with new openness to workshops, online modules, and role-play versus didactics and observation pre-workshop. Conclusions: This study demonstrates knowledge gaps and a lack of communication skills commiserate with self-reported comfort in PC among PCCF. Maturation did not improve these endpoints. Fellows are also open to and request more PC education after exposure to a multi-modal educational intervention. Findings indicate that PCCF want and need specific curricula to affect PC knowledge and skills.
2018
Identifier
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<a href="http://doi.org/10.1097/01.ccm.0000528417.25863.42" target="_blank" rel="noreferrer">10.1097/01.ccm.0000528417.25863.42</a>
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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).
2018
Child
Clinical Article
Cohort Analysis
Comfort
Communication Skill
Critical Care Medicine
Curriculum
Death
Flint H
Human
Intensive Care
Legal Aspect
Likert scale
March 2018 List
maturation
Palliative Therapy
Poynter-Wong S
Prospective Study
Role Playing
Short SR
Simulation
Spike
-
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 2018 List
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).
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 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.29007.abstract" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.29007.abstract</a>
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Title
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Pediatric palliative care and resident education
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
2018
Subject
The topic of the resource
outpatient; human; child; palliative therapy; comfort; simulation; pediatrics; hospice; pain; conference abstract; survival; curriculum; terminal disease; hospital patient; pediatrician; resident; questionnaire; decision making; exercise; internal medicine; primary medical care
Creator
An entity primarily responsible for making the resource
Penney J; Kim G; Dietzen D
Description
An account of the resource
Description: Improving Familiarity with Pediatric Palliative Care Among Pediatric and Internal Medicine-Pediatric Residents. Objectives: To increase familiarity with and comfort level in providing pediatric palliative care in inpatient and outpatient settings among pediatric and internal medicine-pediatrics residents at a tertiary care children's hospital. Background: Palliative care is an emerging field in pediatrics. A policy statement issued by the American Academy of Pediatrics in 2013 recognizes the growing importance of interdisciplinary palliative care and hospice teams in caring for children with life threatening conditions. As medical advancements lead to a broader range of treatment options and increased survival of children with complex medical issues, patients and their families rely on their pediatric providers, both inpatient and outpatient, for an introduction to palliative care. However, pediatric providers at all levels of training have consistently reported minimal training, experience, or competence in key areas of palliative care. A workshop was developed by the authors and conducted among pediatric and internal medicine-pediatrics residents to address these gaps in the current resident curriculum. Research Objectives: The impact of the workshop was measured by changes to an 11-item, Likert-scaled questionnaire administered before and after the workshop. We hypothesized that participants of this study would report increased familiarity and confidence in pe-diatric palliative care after completing the curriculum. Methods: Participants were interns and residents of the UMMS-Baystate pediatric and internal medicine-pediatric pro-grams. The workshop consisted of two one-hour sessions which combined didactics and practical exercises. The first session provided basic definitions and addressed the role of primary care pediatricians in providing palliative care including discussions with family regarding long term goals of care. The second focused on inpatient concepts such as pain control in terminal illness and conducting effective family meetings regarding end of life decision making. Residents were asked to fill out a questionnaire prior to the intervention and after completion of both sessions. Results: Residents reported an overall greater comfort with the topic after the intervention (Pre: Median 3.1, IQR 2.8-3.8, Post: Median 4.1, IQR 3.6-4.3, P=0.003). They also reported better understanding of what pediatric palliative care is (P = 0.001) and more comfort leading a discussion regarding palliative care options for patients (P= 0.007) after the intervention. Conclusions/Implications: After a brief workshop designed for residents, participants reported improved familiarity and comfort level with pediatric palliative care. This educational intervention was able to show that residents benefit from training in pediatric palliative care. We hope that this provides a framework for further educational sessions for pediatric residents. We also hope to use this as a framework for development of a simulation based curriculum for difficult discussions within pediatrics.
Identifier
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<a href="http://doi.org/10.1089/jpm.2018.29007.abstract" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.29007.abstract</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).
2018
August 2018 List
Child
Comfort
conference abstract
Curriculum
Decision Making
Dietzen D
Exercise
Hospice
Hospital Patient
Human
Internal Medicine
Journal of Palliative Medicine
Kim G
Outpatient
Pain
Palliative Therapy
Pediatrician
Pediatrics
Penney J
primary medical care
Questionnaire
Resident
Simulation
Survival
terminal disease
-
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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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/10.1016/j.jpainsymman.2019.12.262" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.262</a>
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Title
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Pediatric Palliative Telehealth Care from Hospital to Hospital: A Pilot Project (QI653)
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
child; clinical article; comfort; community hospital; conference abstract; consensus; education; feasibility study; female; follow up; human; human experiment; Likert scale; male; palliative therapy; primary health care; program feasibility; questionnaire; satisfaction; telehealth; tertiary care center; total quality management
Creator
An entity primarily responsible for making the resource
Evan E; Sandesara A; Mock K O
Description
An account of the resource
Objectives: * Explain a novel method for creating pediatric palliative care resources using telehealth technology. * Describe preliminary data demonstrating project feasibility and satisfaction.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.262" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.262</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).
2020
Child
Clinical Article
Comfort
community hospital
conference abstract
Consensus
Education
Evan E
Feasibility Study
Female
Follow Up
Human
Human Experiment
Journal of Pain and Symptom Management
Likert scale
Male
March 2020 List
Mock K O
Palliative Therapy
Primary Health Care
program feasibility
Questionnaire
Sandesara A
Satisfaction
Telehealth
tertiary care center
Total Quality Management
-
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Title
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March 2020 List
Text
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March 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.120" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.120</a>
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Title
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Pediatric Resident's Knowledge and Attitudes Towards Spiritual Assessment and Care: An Educational Intervention. (FR408C)
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
attitude; Caucasian; child; clinical article; comfort; conference abstract; controlled study; female; human; Likert scale; palliative therapy; pediatric patient; resident; role playing; Wilcoxon signed ranks test
Creator
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Delaney C; Moehling K; Maurer S
Description
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Objectives: * Recognize the importance of religious/spiritual assessment and care in pediatric patients with serious illness. * Identify the elements of a spiritual assessment. * Assess the needs of pediatric residents in religious and spiritual assessment in children with serious illness.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.120" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.120</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).
2020
Attitude
Caucasian
Child
Clinical Article
Comfort
conference abstract
Controlled Study
Delaney C
Female
Human
Journal of Pain and Symptom Management
Likert scale
March 2020 List
Maurer S
Moehling K
Palliative Therapy
pediatric patient
Resident
Role Playing
Wilcoxon signed ranks test
-
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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February 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
February 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/141/1_MeetingAbstract/387">https://pediatrics.aappublications.org/content/141/1_MeetingAbstract/387</a>
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Title
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Peer-designed parents' bereavement panel: Exposing first-year medical students to pediatric end-of-life care
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
Bereavement; care behavior; child; clinical article; comfort; conference abstract; controlled study; curriculum; female; human; human experiment; learning; Likert scale; male; medical school; medical student; pediatric oncologist; pediatrics; preclinical study; terminal care
Creator
An entity primarily responsible for making the resource
Rolfes M; Sunde K; Jones A; Starr S
Description
An account of the resource
Program Goals: Despite the Liaison Committee for Medical Education (LCME) mandatory requirement for the incorporation of end-of-life care education into medical school curriculum, very few studies have reported successful approaches, and standardization across medical schools is lacking. Furthermore, very little effort has focused on the incorporation of pediatric-specific end-of-life care education into the preclinical years. The purpose of this study is to determine whether a bereavement panel consisting of parents who had a child pass away from a life threatening condition: (1) improved first-year medical students' self-reported ability to interact with children suffering from life-threatening conditions and their families, and (2) changed students' opinions about pediatric end-of-life care curriculum. Evaluation: A total of 23 first-year medical students attended a two-hour panel consisting of four parents who had a child pass away from a life threatening condition. The panel was part of a weeklong, peer-designed elective focused on exposing students to various aspects of pediatrics. It consisted of a question-and-answer discussion facilitated by a pediatric oncologist, with a focus on the parents' positive and negative experiences with different aspects of health care throughout their child's illness. Pre-panel and post-panel surveys were administered, asking students to report agreement with various statements using a 10- point Likert scale.
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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).
2018
Bereavement
care behavior
Child
Clinical Article
Comfort
conference abstract
Controlled Study
Curriculum
February 2020 List
Female
Human
Human Experiment
Jones A
Learning
Likert scale
Male
Medical School
medical student
pediatric oncologist
Pediatrics
preclinical study
Rolfes M
Starr S
Sunde K
Terminal Care
-
Dublin Core
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Title
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February 2024 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
February List 2024
URL Address
<a href="http://doi.org/10.3389/fped.2023.1258285" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fped.2023.1258285</a>
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Title
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Perinatal palliative care: focus on comfort
Publisher
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Frontiers in Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
article; human; palliative therapy; comfort; infant; critically ill patient
Creator
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McCarthy FT; Kenis A; Parravicini E
Description
An account of the resource
Providing comfort while a patient is living with a life-limiting condition or at end of life is the hallmark of palliative care regardless of the patient's age. In perinatal palliative care, the patient is unable to speak for themselves. In this manuscript we will present guidelines garnered from the 15-year experience of the Neonatal Comfort Care Program at Columbia University Irving Medical Center, and how they provide care for families along the perinatal journey. We will describe essential tools and strategies necessary to consider in assessing and providing comfort to infants facing a life-limiting diagnosis in utero, born at the cusp of viability or critically ill where the burden of care may outweigh the benefit.
Identifier
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<a href="http://doi.org/10.3389/fped.2023.1258285" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1258285</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).
2023
Article
Comfort
Critically Ill Patient
February List 2024
Frontiers in Pediatrics
Human
Infant
Kenis A
McCarthy FT
Palliative Therapy
Parravicini E
-
Dublin Core
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Title
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May 2023 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
May List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2022.10.037" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpeds.2022.10.037</a>
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Title
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Population-Level Analysis of Appropriateness of End-of-Life Care for Children with Neurologic Conditions
Publisher
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The Journal of Pediatrics
Date
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2023
Subject
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terminal care; analysis of variance; article; Belgium; child; cohort analysis; comfort; drawing; female; financial management; follow up; general practitioner; human; intensive care unit; major clinical study; male; nationality; palliative therapy; phlebotomy; physician; retrospective study; sibling; surgery; Terminal Care; total quality management
Creator
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Piette V; Smets T; Deliens L; van Berlaer G; Beernaert K; Cohen J
Description
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Abstract Objective: The objective of this study was to measure the appropriateness of end-of-life care for children who died with neurologic conditions. Study design: Based on linked routinely collected databases, we conducted a population-level decedent retrospective cohort study of children with neurologic conditions who died in Belgium between 2010 and 2017. We measured a set of 22 face-validated quality indicators. The set concerns 12 indicators of potentially appropriate end-of-life care (eg, specialized comfort medication, physician contact, continuous care) and 10 indicators of potentially inappropriate end-of-life care (eg, diagnostic tests, phlebotomy). We performed ANOVA for predictors (age, sex, disease category, nationality, having siblings, year of death) for scales of appropriate and inappropriate care. Results: Between 2010 and 2017, 139 children with neurologic conditions died in Belgium. For potentially appropriate care, in the last 30 days, 76% of children received clinical care, 55% had continuous care relationships, 17% had contact with a general physician, 8% of children received specialized comfort medication, and 14% received care from a palliative care team. For potentially inappropriate care, in the last 14 days, 45% had blood drawn and 27% were admitted to intensive care unit. Conclusions: Our study found indications of appropriate as well as inappropriate end-of-life care for children who died with neurologic conditions. These findings reveal a substantial margin for potential quality improvement, in regard to palliative care provision, multidisciplinary care, financial support, specialized comfort medication, clinical follow-up, general physician contact, diagnostics, and blood drawing.
Identifier
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<a href="http://doi.org/10.1016/j.jpeds.2022.10.037" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2022.10.037</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).
2023
Analysis of Variance
Article
Beernaert K
Belgium
Child
Cohen J
Cohort Analysis
Comfort
Deliens L
Drawing
Female
financial management
Follow Up
General Practitioner
Human
Intensive Care Unit
Major Clinical Study
Male
May List 2023
nationality
Palliative Therapy
Phlebotomy
Physician
Piette V
Retrospective Study
Sibling
Smets T
Surgery
Terminal Care
The Journal Of Pediatrics
Total Quality Management
van Berlaer G
-
Dublin Core
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Title
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August 2022 List
Text
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Citation List Month
August 2022 List
URL Address
<a href="http://doi.org/10.1177/08258597221098496" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/08258597221098496</a>
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Title
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Reimagining Perinatal Palliative Care: A Broader Role for Support in the Face of Uncertainty
Publisher
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Journal of palliative care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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female; grief; ethics; human; perinatal care; uncertainty; article; palliative therapy; comfort; fetus; patient referral; infant; bereavement support; decision making
Creator
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Lord S; Williams R; Pollard L; Ives-Baine L; Wilson C; Goodman K; Rapoport A
Description
An account of the resource
Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty. For clinicians who counsel families in these circumstances, determining which ones might benefit from early palliative care referral can be challenging. We assert that all women carrying a fetus diagnosed with a life-threatening condition for which comfort-focused care at birth is one ethically reasonable option ought to be offered palliative care support prenatally, regardless of the chosen plan of care. Early palliative care support can contribute to informed decision making, enhance psychological and grief support, and provide opportunities for care planning that includes ways to respect and honor the life of the fetus or baby, however long it may be.
Identifier
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<a href="http://doi.org/10.1177/08258597221098496" target="_blank" rel="noreferrer noopener">10.1177/08258597221098496</a>
Rights
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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).
2022
Article
August 2022 List
Bereavement Support
Comfort
Decision Making
Ethics
Female
Fetus
Goodman K
Grief
Human
Infant
Ives-Baine L
Journal Of Palliative Care
Lord S
Palliative Therapy
Patient Referral
Perinatal Care
Pollard L
Rapoport A
Uncertainty
Williams R
Wilson C
-
Dublin Core
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Title
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Oncology
Text
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Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1002/pon.4354" target="_blank" rel="noreferrer">http://doi.org/10.1002/pon.4354</a>
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Self-assessment for competency and educational needs among pediatric resident on end-of-life care
Publisher
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Psycho-oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Education; Resident; Terminal Care; 8002-76-4 (opiate); 8008-60-4 (opiate); 53663-61-9 (opiate); Adjuvant; Aged; Child; Clinical Study; Comfort; Communication Skill; Delirium; Drug Withdrawal; Dyspnea; Feeding; Hospice; Human; Hydration; Opiate; Patient Referral; Symptom; Unclassified Drug; Very Elderly
Creator
An entity primarily responsible for making the resource
Phung B; Soliman A; Mohamed A
Description
An account of the resource
Purpose: There is lack of standardized resident' curriculum or training for the rapidly emerging field of pediatric end of life care. Goal: To assess pediatric residents' perception of their clinical competence with end of life care and their education needs. To identify an opportunity for improving residents' education and training. Methods: End of life resident assessment survey published by D Weissman was used for evaluation. The survey is divided into 2 domains: clinical competency and education needs. Each domain is subdivided into communication skills and symptom management section. Results: Twenty pediatric residents returned the survey, 8 PGY1, 4 PGY2, and 8 PGY3. PGY1 reported the lowest average score (2.56 of 4), with improving score as we moved to PGY3 (3.1 of 4). Regarding competence with domain of communication skills, they reported significantly lower average score 58% compared to 69% for symptoms management (P < .5). The lowest percentage score among all residents was in discussing home hospice referral 52%, followed by the shift from curative to comfort care and withdrawal of support 54%, then DNR 55%. They felt more competent in giving bad news 72% and best in talking to children in age appropriate manner 91%. This was supported by the high percentage (83%) request of education in those areas. For the symptom management domain, the lowest percentage score among all residents was in management of terminal delirium (40%), followed by terminal dyspnea (48%), using adjuvant analgesics (68%) while they felt comfortable with using opioid analgesic (85%). The highest requested education was for the areas of managing delirium (82%) and dyspnea (81%), followed by hydration and feeding at end of life (68%). Conclusions: There is a major gap in the resident self-assessment in end of life communication skills and symptoms management. This present an improvement opportunity that can translate into better care for children at end of life.
Identifier
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<a href="http://doi.org/10.1002/pon.4354" target="_blank" rel="noreferrer">10.1002/pon.4354</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).
2017
53663-61-9 (opiate)
8002-76-4 (opiate)
8008-60-4 (opiate)
Adjuvant
Aged
Child
Clinical Study
Comfort
Communication Skill
Delirium
Drug Withdrawal
Dyspnea
Education
Feeding
Hospice
Human
Hydration
Mohamed A
Oncology 2017 List
Opiate
Patient Referral
Phung B
Psycho-Oncology
Resident
Soliman A
Symptom
Terminal Care
Unclassified Drug
Very Elderly
-
Dublin Core
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Title
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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/10.1177/0269216319896747" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319896747</a>
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Title
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Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care: A qualitative study
Publisher
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Palliative Medicine
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; bereavement support; child; China; comfort; controlled study; death education; hematology; human; palliative therapy; pediatrics; qualitative research; religion; spiritual care; support group; terminally ill patient
Creator
An entity primarily responsible for making the resource
Cai S; Guo Q; Luo Y; Zhou Y; Abbas A; Zhou X; Peng X
Description
An account of the resource
Background: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion. Aim: To understand nonreligious theistic parents’ spirituality and to explore how parents discuss death with their terminally ill children in mainland China. Design: Qualitative study. Setting/participants: This study was conducted in the hematology oncology center at Beijing Children’s Hospital. Participants in this study included 16 bereaved parents. Results: Participants described themselves as nonreligious but showed a tendency toward a particular religion. Parents sought religious support in the face of the life-threatening conditions that affected their child and regarded the religious belief as an important way to get psychological and spiritual comfort after experiencing the death of their child. Religious support could partially address parents’ spiritual needs. Parents’ spiritual needs still require other supports such as bereavement services, death education, and family support groups. Some parents stated that it was difficult to find a way to discuss death with their children. For patients who come from nonreligious theistic families, their understanding of death was more complex and may be related to atheism. Conclusion: Religious support could be an element of spiritual support for nonreligious theistic parents of terminally ill children. Multiple strategies including religious supports and nonreligious supports should be rationally integrated into spiritual support of nonreligious theistic family. Patient’s personal belief in death should be assessed before discussing death with them.
Identifier
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<a href="http://doi.org/10.1177/0269216319896747" target="_blank" rel="noreferrer noopener">10.1177/0269216319896747</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).
2020
Abbas A
Article
Bereavement Support
Cai S
Child
China
Comfort
Controlled Study
Death Education
Guo Q
Hematology
Human
Luo Y
March 2020 List
Palliative Medicine
Palliative Therapy
Pediatrics
Peng X
Qualitative Research
Religion
Spiritual Care
support group
terminally Ill Patient
Zhou X
Zhou Y
-
Dublin Core
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Title
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April 2018 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
April 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2017.10.023" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2017.10.023</a>
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Title
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Survey on Neonatal End-of-Life Comfort Care Guidelines Across America
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
2018
Subject
The topic of the resource
anxiety; compassion fatigue; pediatrics; intensive care; comfort; palliative therapy; Canada; Infant; Newborn; Palliative Care; bodily secretions; newborn; satisfaction; institutional review; neonatologist; practice guideline; human; terminal care; article; pain; gastrointestinal symptom; geographic distribution; neonatal nurse practitioner; perinatal care
Creator
An entity primarily responsible for making the resource
Haug S; Farooqi S; Wilson CG; Hopper A; Oei G; Carter B
Description
An account of the resource
Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing neonatal comfort care at the end-of-life (EOL). Objectives: The purpose of this study was to evaluate current neonatal EOL comfort care practices and clinician satisfaction across America. Methods: After institutional review board approval (516005), an anonymous, electronic survey was sent to members of the American Academy of Pediatrics Section on Neonatal-Perinatal Medicine. Members of the listserv include neonatologists, neonatal fellow physicians, neonatal nurses, and neonatal nurse practitioners from across America (U.S. and Canada). Results: There were 346/3000 (11.5%) responses with wide geographic distribution and high levels of intensive care responding (46.1% Level IV, 50.9% Level III, 3.0% Level II). Nearly half (45.2%) reported that their primary institution did not have neonatal comfort care guidelines. Of those reporting institutional neonatal comfort care guidelines, 19.1% do not address pain symptom management. Most guidelines also do not address gastrointestinal distress, anxiety, or secretions. Thirty-nine percent of respondents stated that their institution did not address physician compassion fatigue. Overall, 91.8% of respondents felt that their institution would benefit from further education/training in neonatal EOL care. Conclusion: Across America, respondents confirmed significant variation and verified many institutions do not formally address neonatal EOL comfort care. Institutions with guidelines commonly appear to lack crucial areas of palliative care including patient symptom management and provider compassion fatigue. The overwhelming majority of respondents felt that their institutions would benefit from further neonatal EOL care training.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2017.10.023" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.10.023</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).
2018
anxiety
April 2018 List
Article
bodily secretions
Canada
Carter B
Comfort
Compassion Fatigue
Farooqi S
Gastrointestinal Symptom
geographic distribution
Haug S
Hopper A
Human
Infant
Institutional Review
Intensive Care
Journal of Pain and Symptom Management
neonatal nurse practitioner
Neonatologist
Newborn
Oei G
Pain
Palliative Care
Palliative Therapy
Pediatrics
Perinatal Care
Practice Guideline
Satisfaction
Terminal Care
Wilson CG
-
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
October 2023 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
October List 2023
URL Address
<a href="http://doi.org/10.1542/hpeds.2023-007225" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/hpeds.2023-007225</a>
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Title
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The Butterfly Effect: Supporting Pediatric Trainee Bereavement Through a Condolence Card Project
Publisher
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Hospital Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Bereavement; article; human; death; pediatrics; clinical practice; grief; terminal care; dying; wellbeing; comfort; resident; human relation; pediatrician; bereavement; medical education; frustration; coping behavior; work environment; posthumous care; anger; bereavement support; medical student; catharsis; gesture; loneliness
Creator
An entity primarily responsible for making the resource
Rabinowitz DG; Korus RE; Eastland SL; Bloomhardt HM
Description
An account of the resource
As medical students and residents, we have all grappled with patient death and dying at some point in our training. These experiences often remain with us, informing our clinical practice, our personal wellbeing, and the ways in which we build relationships with patients and families. One memory, among many, inspired our work to bolster and reform trainee bereavement practices. On Monday, I walked into the hospital apprehensively. I was nearing the end of a month-long rotation in the medical-surgical ICU, my first experience caring for critically ill children during residency. I heard the news from my coresident: my patient had died on Sunday. Although it was not unexpected, it still hurt all the same. It was 5:50 am when I rounded the hospital corner and approached his old room. As I peeked inside, my heart sank. Just 3 days ago, this room was full of people and things and sounds;...
Identifier
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<a href="http://doi.org/10.1542/hpeds.2023-007225" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2023-007225</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).
2023
Anger
Article
Bereavement
Bereavement Support
Bloomhardt HM
catharsis
Clinical Practice
Comfort
Coping Behavior
Death
Dying
Eastland SL
frustration
gesture
Grief
Hospital Pediatrics
Human
Human Relation
Korus RE
Loneliness
Medical Education
medical student
October List 2027
Pediatrician
Pediatrics
Posthumous Care
Rabinowitz DG
Resident
Terminal Care
Wellbeing
work environment