1
40
12
-
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.30484" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30484</a>
Dublin Core
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Title
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Unfolding parental knowledge, attitudes, and beliefs toward palliative care for children with cancer
Publisher
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Pediatric Blood and Cancer
Date
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2023
Subject
The topic of the resource
child; Palliative Care; childhood cancer; article; female; human; major clinical study; male; palliative therapy; pain; education; pediatrics; emotion; multicenter study; quantitative analysis; caregiver; questionnaire; structured interview; demography; Lebanon; educational status
Creator
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Rassam RS; Huijer HAS; Noureddine S; Smith EML; Wolfe J; Fares S; Abboud MR
Identifier
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<a href="http://doi.org/10.1002/pbc.30484" target="_blank" rel="noreferrer noopener">10.1002/pbc.30484</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
2023 SE3 - Oncology
Abboud MR
Article
Caregiver
Child
Childhood Cancer
Demography
Education
Educational Status
Emotion
Fares S
Female
Huijer HAS
Human
Lebanon
Major Clinical Study
Male
Multicenter Study
Noureddine S
Pain
Palliative Care
Palliative Therapy
Pediatric Blood and Cancer
Pediatrics
quantitative analysis
Questionnaire
Rassam RS
Smith EML
Structured Interview
Wolfe J
-
Dublin Core
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Title
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March 2023 List
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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
March List 2023
URL Address
<a href="http://doi.org/10.1136/spcare-2022-HUNC.65" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2022-HUNC.65</a>
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Title
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Transforming Care for Young Adults with Complex and Life-Limiting Conditions
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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
2022
Subject
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Adult; Child; conference abstract; Human; immersion; learning; logic; peer group; quantitative analysis; young adult
Creator
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James C; Horsley A; Shouls S
Description
An account of the resource
Background More young people with complex life-limiting conditions are living into adulthood, generating greater demand for appropriate care (Fraser, Gibson-Smith, Jarvis, et al., 2021. Palliat Med. 35:1641). We implemented Project ECHO (Extension of Community Healthcare Outcomes) to improve young people's palliative care, Sept 2019 - Dec 2022. Aim(s) Evaluate Project ECHO and associated National Transition Community of Practice (CoP) as a mechanism to transform palliative care for young people. Methods Following expressions of interest, three ECHO Hubs were trained and a CoP established (year 1). Our appointed Evaluation Partner is analysing qualitative and quantitative evidence (obtained throughout) applying a logic model. Results Work in progress; findings demonstrate enhanced knowledge, confidence and peer support. Key metrics: * ECHO Immersion Training x3 Hubs (Dec 2019). * 10 ECHO sessions per year x3. * Quarterly Transition (Professional) meetings: 'Really helpful, a wealth of experience and enthusiasm.' * 141 CoP subscribers (March 2022). Conclusions Children and young people's needs are diverse, complex and require a higher profile (NHS. The NHS long term plan. 2019). Initial findings reveal a positive contribution to learning and improved outcomes reflecting NICE Guidance (National Institute for Health and Care Excellence. [NG43], 2017; National Institute for Health and Care Excellence [NG213], 2022; National Institute for Health and Care Excellence. [NG61], 2019). Our Transition project addresses gaps in knowledge across the UK.
Identifier
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<a href="http://doi.org/10.1136/spcare-2022-HUNC.65" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.65</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
Adult
BMJ Supportive and Palliative Care
Child
conference abstract
Horsley A
Human
immersion
James C
Learning
Logic
March List 2023
Peer Group
quantitative analysis
Shouls S
Young Adult
-
Dublin Core
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Title
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December 2022 List
Text
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Citation List Month
December List 2022
URL Address
<a href="http://doi.org/10.1002/pbc.299522" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.299522</a>
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Cultivating Gratitude in Bereaved Families: Description of the Impact of the Bereavement Workshop on Families of Deceased Patients in the Pediatric Palliative Care Program
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
2022
Subject
The topic of the resource
active listening; bereavement; butterfly; child; conference abstract; coping behavior; genetic transcription; grief; group therapy; human; learning; music therapy; nonhuman; palliative therapy; perception; qualitative research; quantitative analysis; ritual; writing
Creator
An entity primarily responsible for making the resource
Cuervo M; Devia A; Pereira L; Alvarez T; Molina K; Bolanos J; Correa I; Garcia X
Description
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Background and Aims: Grief in parents has been described as a very intense long-lasting experience, characterized by deep sadness, and social isolation, therefore, the recommendation of scientific societies in pediatrics is to provide bereavement care to parents and relatives of deceased children who have previously been cared for by health professionals. In this study, a bereavement workshop for parents is proposed as an intervention strategy, providing accompaniment to the families of deceased patients who received pediatric palliative care (PPC). Method(s): We conducted a quantitative and qualitative study in a focus group of parents of deceased children who participated in a bereavement workshop. The intervention consisted of a bereavement workshop, guided by the multidisciplinary PPC team, in which 4 activities were developed: group psychotherapy, music therapy, gratitude activity, symbolic ritual of delivery of butterfly. The gratitude activity consisted of motivating the families to express their gratitude by writing on cards with phrases that encourage reflection: during this process I am grateful for., I thank my child or family member for. . . , I thank the pediatric palliative care program for. . .; the cards were transcribed into a database constructed for this study and analyzed by 4 evaluators, thematic categories were assigned to each reflective sentence. Result(s): 60 families received the personalized letter of condolences with invitation to the workshop, 23 families attended the workshop. From the gratitude activity, families made 49 thank you cards, the following categories were highlighted: Communication, Hope, compassion, acceptance, humanization, learning, gratitude, active listening, coping strategies, regards, faith and humanization Conclusion(s): Strategies that favor adequate emotional management of the grieving process should be promoted. This study reflects the perceptions of parents attending a bereavement workshop. It highlights the gratitude, feelings and reflections of the family members during the health process and the death of the child while receiving accompaniment by a pediatric palliative care team.
Identifier
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<a href="http://doi.org/10.1002/pbc.299522" target="_blank" rel="noreferrer noopener">10.1002/pbc.299522</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
active listening
Alvarez T
Bereavement
Bolanos J
butterfly
Child
conference abstract
Coping Behavior
Correa I
Cuervo M
December List 2022
Devia A
Garcia X
genetic transcription
Grief
Group Therapy
Human
Learning
Molina K
Music Therapy
Nonhuman
Palliative Therapy
Pediatric Blood and Cancer
Perception
Pereira L
Qualitative Research
quantitative analysis
ritual
writing
-
Dublin Core
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Title
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October 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2022 List
URL Address
<a href="http://doi.org/10.1016/j.pedn.2022.07.002">http://doi.org/10.1016/j.pedn.2022.07.002</a>
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Title
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A Investigation into Hope, Self-Efficacy, Distress and Uncertainty in Parents Who Have A Child with A Life-Threatening or Life-Limiting Illness
Publisher
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Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Children; Families; Hope; Life-limiting illness; Life-threatening illness; Self-efficacy; article; care; behavior; caregiver; child; controlled study; demographics; distress; syndrome; exploratory; research; financial management; human; parental leave; pediatric; nurse; quantitative analysis; self concept; uncertainty
Creator
An entity primarily responsible for making the resource
Spurr S; Bally J; Burles M; McHaro K
Description
An account of the resource
PURPOSE: To examine the experiences of parents who are caring for a child with a life-threatening or life-limiting illness (LTI/LLI) including levels of uncertainty, distress, hope, and self-efficacy to determine if there are significant variations with respect to demographic characteristics. DESIGN AND METHODS: Data for this analysis are derived from a quasi-experimental evaluation of a support intervention with a purposeful sample of parental caregivers from a western Canadian province. Participants completed a demographic survey and four quantitative measures at baseline and following use of the support intervention. RESULT(S): Many parents had high scores of hope and self-efficacy, with highest levels of hope amongst parents who could stay at home with their children, and higher self-efficacy expressed by parents without financial concerns. Increased levels of uncertainty and distress were found amongst parents without other children living in the home, and those with financial concerns, respectively. CONCLUSION(S): This exploratory analysis found that many parents experienced clinically significant distress along with uncertainty. The results determined that caring for children in the home other than the ill child significantly decreased uncertainty. High levels of parental hope and self-efficacy were frequently identified, with variations reflecting differences in social roles and stressors. The results contribute to an increased understanding of the value of support resources including parental leave and financial support. PRACTICE IMPLICATIONS: Pediatric nurses may consider adopting an approach to caring for families with children in treatment for LLIs/LTIs that gives high priority to promoting hope and self-efficacy while ensuring access to support resources. Copyright © 2022 Elsevier Inc. All rights reserved.
Identifier
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<a href="http://doi.org/10.1016/j.pedn.2022.07.002">10.1016/j.pedn.2022.07.002</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
Bally J
Behavior
Burles M
CARE
Caregiver
Child
Children
Controlled Study
Demographics
Distress
exploratory
Families
financial management
Hope
Human
Journal of Pediatric Nursing
life-limiting illness
Life-threatening illness
McHaro K
Nurse
October 2022 List
parental leave
Pediatric
quantitative analysis
Research
Self Concept
Self-efficacy
Spurr S
Syndrome
Uncertainty
-
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/10.1097/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
Publisher
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Journal of hospice and palliative nursing
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; 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
An entity primarily responsible for making the resource
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
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Title
A name given to the resource
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.
Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.27993</a>
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Title
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Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents
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
2020
Subject
The topic of the resource
newborn; social support; child; human; adult; female; major clinical study; male; retrospective study; article; priority journal; aged; Bereavement; adolescent; terminal care; quality of life; emotion; Parent; psychologist; social worker; content analysis; interpersonal communication; quantitative analysis; time of death; infant; caregiver; pediatric patient; nurse; support group; thematic analysis; psycho-oncology; open ended questionnaire; childhood cancer/dm [Disease Management]; pediatric oncologist; health care need; social media; worker
Creator
An entity primarily responsible for making the resource
Wiener L; Tager J; Mack J; Battles H; Bedoya S Z; Gerhardt C A
Description
An account of the resource
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
Identifier
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<a href="http://doi.org/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">10.1002/pbc.27993</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adolescent
Adult
Aged
Article
Battles H
Bedoya S Z
Bereavement
Caregiver
Child
childhood cancer/dm [Disease Management]
Content Analysis
Emotion
Female
Gerhardt C A
health care need
Human
Infant
Interpersonal Communication
Mack J
Major Clinical Study
Male
Newborn
Nurse
Oncology 2020 List
open ended questionnaire
Parent
Pediatric Blood and Cancer
pediatric oncologist
pediatric patient
Priority Journal
Psycho-Oncology
Psychologist
Quality Of Life
quantitative analysis
Retrospective Study
social media
Social Support
Social Worker
support group
Tager J
Terminal Care
Thematic Analysis
time of death
Wiener L
worker
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
July 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2019 List
URL Address
<a href="http://doi.org/10.1080/02739615.2019.1605608" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1080/02739615.2019.1605608</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Parents' experiences of services for their child with a life-limiting neurodevelopmental disability
Publisher
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Children's Health Care.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; child; female; human; major clinical study; male; staff; funding; interview; nervous system malformation; quantitative analysis
Creator
An entity primarily responsible for making the resource
Kiernan G; Courtney E; Ryan K; McQuillan R; Guerin S
Description
An account of the resource
This study explored parents' experiences of services for children with life-limiting neurodevelopmental disabilities (LLNDD) using mixed methods. The study included a quantitative survey (n = 63) and qualitative interviews (n = 12), with a focus on integrating the findings to identify higher-level insights. Results suggest parents' experiences are mixed, showing more negative than positive experiences. Access to services was described as problematic, with obstacles including funding and geographical inequities. Helpful aspects included staff attitudes and relationships and, to a lesser extent, coordinated care. Unhelpful aspects included inconsistencies in the provision of services. The findings suggest some implications for service provision, including the need for a more family-centered approach. Copyright © 2019, © 2019 Taylor & Francis Group, LLC.
Identifier
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<a href="http://doi.org/10.1080/02739615.2019.1605608" target="_blank" rel="noreferrer noopener">10.1080/02739615.2019.1605608</a>
2019
Article
Child
Children's Health Care.
Courtney E
Female
Funding
Guerin S
Human
Interview
July 2019 List
Kiernan G
Major Clinical Study
Male
McQuillan R
nervous system malformation
quantitative analysis
Ryan K
Staff
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
May 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
May 2019 List
URL Address
<a href="http://doi.org/10.1016/j.nepr.2019.02.014" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.nepr.2019.02.014</a>
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Title
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The use of a theatre workshop in developing effective communication in paediatric end of life care
Publisher
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Nurse Education in Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; human; terminal care; statistics; article; perception; quantitative analysis; bereavement support; communication skill; convenience sample; human experiment; questionnaire; clinical practice; registration; nursing student; learning; teaching
Creator
An entity primarily responsible for making the resource
Neilson S J; Reeves A
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.nepr.2019.02.014" target="_blank" rel="noreferrer noopener">10.1016/j.nepr.2019.02.014</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).
Description
An account of the resource
Being able to communicate effectively is an essential skill for all nurses. Communication in paediatric end of life care can be challenging for both the student and lecturer as it is a rare experience and challenging to teach. Innovative approaches to teaching communication skills such as role play, simulation and drama have been used; however there is a dearth of literature examining the use of drama in this specialist context. The aim of this study was to explore the effectiveness of a novel workshop in teaching transferable knowledge and skills in palliative, end of life and bereavement care communication to a convenience sample of first year pre-registration nursing students undertaking clinical skills training at a UK university. Qualitative and quantitative data were obtained from pre and post intervention questionnaires exploring student's perception of communication skills. Qualitative data were analysed thematically and quantitative data presented as standard descriptive statistics. The novel communication workshop facilitated students' exploration of how good and poor communication looks and feels and introduced aids to inform communication in clinical practice. Exposure to different learning approaches provided opportunities to both gain confidence in engaging in new learning activities and develop knowledge and skills through purposeful engagement.
2019
Article
Bereavement Support
Child
Clinical Practice
Communication Skill
Convenience Sample
Human
Human Experiment
Learning
May 2019 List
Neilson S J
Nurse Education In Practice
nursing student
Perception
quantitative analysis
Questionnaire
Reeves A
Registration
Statistics
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
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.2018.10.278" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.278</a>
Dublin Core
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Title
A name given to the resource
The Impact of Music Therapy in Paediatric Palliative Care in Residential Hospice
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
caregiver; palliative therapy; hospice; quantitative analysis; conference abstract; human; child; memory; music therapy; nomenclature
Creator
An entity primarily responsible for making the resource
You H; Ross S
Description
An account of the resource
Background: Emily's House Children's Hospice (EH) located in Toronto, Canada provides residential hospice services to children living with serious medical conditions. The use of music therapy to ameliorate anxiety and pain is well documented in paediatric patients. Research identifies quality of life as an important area of improvement for families/caregivers with music therapy in paediatric palliative care. Following the program's initial six months, Music Therapy at EH needed to be evaluated for impact.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.278" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.278</a>
2018
Caregiver
Child
conference abstract
February 2019 List
Hospice
Human
Journal of Pain and Symptom Management
Memory
Music Therapy
Nomenclature
Palliative Therapy
quantitative analysis
Ross S
You H
-
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
2018 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 2018 List
URL Address
<a href="http://doi.org/10.1097/01.ccm.0000528499.57151.25" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1097/01.ccm.0000528499.57151.25</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Pediatric intensivist end-of-life practices and attitudes in Vietnam
Publisher
An entity responsible for making the resource available
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
qualitative analysis; semi structured interview; terminal care; chronic disease; education; major clinical study; life sustaining treatment; cultural factor; medical technology; quantitative analysis; human; child; female; male; perception; palliative therapy; resuscitation; doctor nurse relation; Viet Nam; chronic patient; pediatric hospital; tertiary health care; Vietnamese; intensivist
Creator
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Schiltz B; Liu J; Fadadu P; Kumbamu A; Phan P; Tran X; Ouellette Y
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.ccm.0000528499.57151.25" target="_blank" rel="noreferrer noopener">10.1097/01.ccm.0000528499.57151.25</a>
2018
Child
Chronic Disease
Chronic Patient
Critical Care Medicine
Cultural Factor
Developing World 2018 List
doctor nurse relation
Education
Fadadu P
Female
Human
Intensivist
Kumbamu A
Life Sustaining Treatment
Liu J
Major Clinical Study
Male
Medical Technology
Ouellette Y
Palliative Therapy
Pediatric Hospital
Perception
Phan P
Qualitative Analysis
quantitative analysis
Resuscitation
Schiltz B
Semi Structured Interview
Terminal Care
tertiary health care
Tran X
Viet Nam
Vietnamese
-
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
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/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216318769196</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Challenges in assessing the need for beds in palliative care-The example of inpatient hospice care for children, adolescents and young adults
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; female; male; palliative therapy; diagnosis; death; Likert scale; psychosocial care; adult; home care; major clinical study; conference abstract; young adult; artificial ventilation; Germany; occupation; semi structured interview; long term care; resident; quantitative analysis; disabled person; funding; hospital patient; mortality; statistics; prevalence; hospice care; calculation; length of stay; politics
Creator
An entity primarily responsible for making the resource
Jaspers B; Jansky M; Nauck F
Description
An account of the resource
Background: Inpatient hospice care (IHC) for adults in Germany is used in the last weeks of life. Children, adolescents and young adults (ACA) with life-limiting diseases are entitled to 28 days/year of IHC during their lifetime. We explored various data to assess the need for IHC for ACA in North Rhine-Westphalia (NRW; 17.6 million inhabitants). Methods: Quantitative: All local hospices (n=5; 52 beds) and the single palliative care unit (PCU) for ACA were asked to contribute data on service provision, e.g. patient numbers and characteristics, occupation rate (OcR), length of stay. All local specialist palliative home care teams (n=6) (SAPV) for ACA were asked to estimate the percentage of ACA for whom they arranged IHC and in which timely manner (6-point Likert scale). Qualitative semi-structured interviews (hospices; SAPV; PCU) covering aspects such as access, barriers to access, needs coverage, impact of newly implemented SAPV on need, unmet demand for other services, funding politics and networking. Further data (reference year 2015): a) mortality statistics-% of all ACA in NRW dying from cancer (< 20 years)/non-cancer diseases according to the 4 ACT disease groups (< 25 years); b) prevalence estimates. Results: The 4 responding hospices had cared for 81-127 patients; average stay: 8-10 days, OcR: 60-90%. Cancer accounted for 1-20% of admissions, severe multi-handicapped ACA were 29-80%, 0-15% had no clear diagnosis. Hospices, SAPV and PCU teams saw no need for further hospice beds for ACA in NRW. They reported a lack of short and long-term care facilities for ACA in need of intensive medical care (and/or invasive ventilation) as well as of ambulatory psychosocial care and care management. Of the 1383 deaths (0-24 years) 47.1% were >1 year old, 62.3% of those < 20 years and 33.4% of those from 20-24 years had diseases according to the ACT groups and were probably in need of IHC. Different calculation models for prevalence will be discussed. Conclusion: Estimating the need for hospice beds for ACA remains difficult for various reasons: a) lack of valid prevalence statistics of relevant diseases, b) mortality statistics underestimate palliative care need, c) data protection regulations prohibit data exchange between hospices, d) local data do not capture the fact that residents from all German States are entitled to use IHC in NRW, and e) therefore an estimation would have to triangulate data from all relevant services for ACA across Germany.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</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).
2018
Adult
Artificial Ventilation
August 2018 List
calculation
Child
conference abstract
Death
Diagnosis
disabled person
Female
Funding
Germany
Home Care
Hospice Care
Hospital Patient
Human
Jansky M
Jaspers B
Length Of Stay
Likert scale
Long Term Care
Major Clinical Study
Male
Mortality
Nauck F
occupation
Palliative Medicine
Palliative Therapy
Politics
Prevalence
psychosocial care
quantitative analysis
Resident
Semi Structured Interview
Statistics
Young Adult
-
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
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.ejpn.2017.04.1310" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ejpn.2017.04.1310</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Palliative care in children with spinal muscular atrophy type 1: How do they die? Results from a French multicentric study (National Hospital clinical Research Program)
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
clinical research; palliative therapy; Werdnig Hoffmann disease; 50-48-6 (amitriptyline); 52-26-6 (morphine); 57-27-2 (morphine); 549-18-8 (amitriptyline); Amitriptyline; benzodiazepine derivative; Child; Clinical Article; clinical practice; Diagnosis; Drug Therapy; Female; follow up; Human; infant; Intensive care unit; Interview; Male; Morphine; multicenter study; nasogastric tube; Noninvasive Ventilation; psychologist; quantitative analysis; Resuscitation; time of death
Creator
An entity primarily responsible for making the resource
Hully M; Barnerias C; Vanesse S; Viallard ML; Desguerre I
Description
An account of the resource
Objective: The national Hospital Clinical Research Program (PHRC) called Assessment of clinical practices of palliative care in children with Spinal Muscular Atrophy Type 1 (SMA 1) was conducted to depict palliative practices in that fatal disease, in which death up to now occurs few weeks or months after the diagnosis. We here report data about the conditions of death for the patients included. Methods: In this French multicentric study, patients were included from june 2012 to june 2016. Parents and physicians filled in a specific health book during the follow up, the physician in charge filled in a survey concerning the patient's management over the last 48 hours before death, then a semidirected interview of the parents was conducted by a trained psychologist 6 to 18 months after the child's death. We here report the quantitative analysis of data obtained from the survey about patient's management around death. Results: 38 patients were included in the study (17 centres), data were available for 36 dead patients. Median age at inclusion was 3 months (0,6-10,4), death occurred at a median 5,5 month of age (1,5-16,4), i.e a median follow-up of 2 months (0,2-12,8). 39% of patients died at home, 6% in an intensive care unit. At the time of death, patients received morphine (56%), benzodiazepines (39%), amitriptyline (39%). Treatments were given through a nasogastric tube (83%), and oxygenotherapy was delivered (76%). 6% patients received noninvasive ventilation at the time of death. No resuscitation recommendations had been prepared for most patients (97%), written in 85%, after a multidisciplinary meeting in most cases (79%). Conclusion: Our data confirm current knowledge about natural outcome in SMA 1, death occurring very soon after the diagnosis, claiming for an effective palliative management of the patients, including the involvement of parents in medical care at home.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ejpn.2017.04.1310" target="_blank" rel="noreferrer">10.1016/j.ejpn.2017.04.1310</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).
2017
50-48-6 (amitriptyline)
52-26-6 (morphine)
549-18-8 (amitriptyline)
57-27-2 (morphine)
Amitriptyline
Barnerias C
benzodiazepine derivative
Child
Clinical Article
Clinical Practice
Clinical Research
Desguerre I
Diagnosis
Drug Therapy
European Journal of Paediatric Neurology
Female
Follow Up
Hully M
Human
Infant
Intensive Care Unit
Interview
January 2018 List
Male
Morphine
Multicenter Study
nasogastric tube
Noninvasive Ventilation
Palliative Therapy
Psychologist
quantitative analysis
Resuscitation
time of death
Vanesse S
Viallard ML
Werdnig Hoffmann disease