1
40
9
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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.
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October List 2023
URL Address
<a href="http://doi.org/10.1089/jpm.2023.0072" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0072</a>
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Title
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Evaluating a Pediatric Palliative Care Elective Rotation Through Prompted Reflective Writing and Aligning with Competencies
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
2023
Subject
The topic of the resource
fatigue; Palliative Care; child; article; human; United States; population health; palliative therapy; hospice; resident; clinical evaluation; physical examination; intestine obstruction; medical education; Rotation; learning; writing; accreditation; professionalism; rotation; inductive reasoning
Creator
An entity primarily responsible for making the resource
Crawford C; Arevalo Soriano T; Lu S; Rubenstein J; Jarrell JA
Description
An account of the resource
Background: Hospice and palliative medicine is important in the education of pediatric residents. Little is known about if and how residents' learnings during a pediatric palliative care elective fulfill core competencies and Pediatrics subcompetencies as set forth by the Accreditation Council for Graduate Medical Education (ACGME) and published subspecialty competencies for residents in pediatric hospice and palliative medicine (pHPM). Objective(s): To evaluate what residents are learning on a four-week pediatric palliative care elective rotation at a single institution and how these learnings fulfill ACGME and pHPM competencies. Setting/Subjects: Prompted, written reflections were collected from residents completing a pediatric palliative care rotation at a large, urban academic center in the United States between academic years 2016-2017 and 2020-2021. Measurements: A qualitative, inductive reasoning approach was used to analyze reflections for emergent themes and codes. A deductive approach was used to map resulting codes to ACGME core competencies, Pediatric subcompetencies, and pHPM competencies. Result(s): Twenty-five resident reflections were collected. Inductive analysis revealed three primary themes and 102 codes. These codes were mapped to all six ACGME core competencies and mapped to most Pediatric subcompetencies with the exception of performing a physical examination, organizing and prioritizing patients, diagnostic evaluation, and community and population health. Codes mapped to most pHPM competencies with the exception of two symptom-based competencies, malignant bowel obstruction and severe fatigue. Conclusion(s): Residents' written reflections following a pediatric palliative care elective rotation demonstrated robust learnings that fulfill many core, specialty, and subspecialty competencies, particularly those that relate to patient- and family-centered care, communication, professionalism, and systems-based practice.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2023.0072" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0072</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).
2023
Accreditation
Arevalo Soriano T
Article
Child
clinical evaluation
Crawford C
Fatigue
Hospice
Human
inductive reasoning
Intestine Obstruction
Jarrell JA
Journal of Palliative Medicine
Learning
Lu S
Medical Education
October List 2050
Palliative Care
Palliative Therapy
physical examination
Population Health
professionalism
Resident
Rotation
Rubenstein J
United States
writing
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.50</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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Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Palliative Care; child; controlled study; female; human; male; retrospective study; quality of life; palliative therapy; hospice; practice guideline; follow up; outcome assessment; artificial ventilation; clinical article; patient referral; education; consultation; pediatric intensive care unit; awareness; diagnosis; life sustaining treatment; hospital discharge; adolescent; surgery; infant; demographics; conference abstract; e-mail; decision making; trust; length of stay; nurse; writing; community care; heart graft; nursing staff; clinical nurse specialist; apparent life threatening event; organizational restructuring; oxygenation
Creator
An entity primarily responsible for making the resource
Subhash S; Freitas D; Aidoo E; Nkulu G; Chan-Dominy A
Description
An account of the resource
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus wishes of the child and family on preferred place of care.2 3 We evaluated the temporal effect on PC referrals at a quarternary cardiorespiratory paediatric intensive care unit (PICU) following organisational restructuring to integrate people-centred changes amidst complex diagnoses and advanced life-sustaining treatments. Methods Retrospective review of PC referral database between January and December 2022 was conducted, analysed on referral pathway, reviewed with decision-making process, patient demographics and outcome. Results The nurse-led service with ad hoc informal visits to offer PC support following requests from medical team was reorganised since service-level agreement for paediatric PC consultant attendance at our weekly complex care multidisciplinary meetings. Departmental education sessions and trust governance events were platforms to promote staff awareness on service and enhance referral pathway. PC referrals were made for 23 children(M:F 1.3:1), median age 13.8 months (range 10days -16.8years), under categories of life-limiting diagnoses (n=12, 52%) or acute life-threatening events (n=11, 48%), including resuscitative extracorporealmembrane-oxygenation.(Graph 1) Median time from admission to PC referral was 59 days (range 6-162) prior to standardised referral proforma in May2022, this reduced to 36 days (range -35 to 68) and 6 days (range 3-30) per 4-month period. One referral was made 5 weeks prior to an international repatriation for child with life-limiting diagnosis on long-term ventilation. Completed referral forms sent to a designated email address were passed onto PC consultants and clinical nurse specialist. Dedicated weekly PC days provided introductory 'meet-andgreet', follow-up 'check-in' or semi-structured meeting with PC team members for patients, families and staff. PC-led multidisciplinary meetings (including 2 online) were followed by real-time correspondence to medical and nursing staff with feedback, recommendations and action plan. 4 advanced care plans and 3 symptom management plans were completed; 9 hospice and 5 community care nursing team referrals were made whilst 2 families declined hospice. Median hospital length of stay was 69 days (range 6-390). 5 children survived to hospital discharge (3 died at home), and 8 are still in hospital (1 as heart transplant recipient). Conclusion Integrative culture during reorganisation can positively influence paediatric PC referrals. Event-triggered and diagnosis-based cues may help foster PC participation as continuing strategy to respond with support during disease, treatment and psychosocial burden for children and families.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.50</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).
2023
Adolescent
Aidoo E
apparent life threatening event
Archives of Disease in Childhood
Artificial Ventilation
Awareness
Chan-Dominy A
Child
Clinical Article
Clinical Nurse Specialist
community care
conference abstract
Consultation
Controlled Study
Decision Making
Demographics
Diagnosis
E-mail
Education
Female
Follow Up
Freitas D
heart graft
Hospice
hospital discharge
Human
Infant
Length Of Stay
Life Sustaining Treatment
Male
Nkulu G
Nurse
Nursing Staff
October List 2031
organizational restructuring
outcome assessment
Oxygenation
Palliative Care
Palliative Therapy
Patient Referral
Pediatric Intensive Care Unit
Practice Guideline
Quality Of Life
Retrospective Study
Subhash S
Surgery
Trust
writing
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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December 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
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>
Dublin Core
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Title
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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
An account of the resource
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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.299522" target="_blank" rel="noreferrer noopener">10.1002/pbc.299522</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).
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
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 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>
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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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>
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
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
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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2019 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 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.286" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2018.10.286</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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The Nesting Dolls Design: A Methodology for the Recruitment of Bereaved Parents for Partnership Activities Related to Palliative Care and Bereavement Support in Paediatric Psycho-Oncology
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
52315-07-8 (cypermethrin); 65731-84-2 (cypermethrin); 66841-24-5 (cypermethrin); 67375-30-8 (cypermethrin); bereavement support; child; clinical article; clinician; conference abstract; confidentiality; content analysis; controlled study; cypermethrin; death; evaluation research; female; filter; follow up; human; information center; intensive care; interview; male; neonatology; nesting; palliative therapy; pediatrics; psycho-oncology; questionnaire; research ethics; writing
Creator
An entity primarily responsible for making the resource
Bourque C J; Cardinal G; Dumont E; Sultan S
Description
An account of the resource
Objectives: 1) Fill the knowledge gaps about best practices related to collaboration with bereaved families in projects related to end-of-life practices, palliative care and parental bereavement in paediatrics. 2) Identify best practices for establishing safe partnership communication with bereaved families.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.286" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.286</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
52315-07-8 (cypermethrin)
65731-84-2 (cypermethrin)
66841-24-5 (cypermethrin)
67375-30-8 (cypermethrin)
Bereavement Support
Bourque C J
Cardinal G
Child
Clinical Article
Clinician
conference abstract
Confidentiality
Content Analysis
Controlled Study
cypermethrin
Death
Dumont E
evaluation research
Female
filter
Follow Up
Human
information center
Intensive Care
Interview
Journal of Pain and Symptom Management
Male
Neonatology
nesting
Oncology 2019 List
Palliative Therapy
Pediatrics
Psycho-Oncology
Questionnaire
research ethics
Sultan S
writing
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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/10.12968/ijpn.2018.24.7.351" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.12968/ijpn.2018.24.7.351</a>
Dublin Core
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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Increasing access to children's palliative care education through e-learning: a review of the ICPCN experience
Publisher
An entity responsible for making the resource available
International journal of palliative nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
article; child; female; human; major clinical study; male; palliative therapy; Children; E-learning; Education; human experiment; language; learning; mandarin; nonhuman; nurse; Paediatrics; Palliative; pediatrics; skill; writing
Creator
An entity primarily responsible for making the resource
Daniels A; Downing J
Description
An account of the resource
Education is integral to the development of children's palliative care (CPC) globally; thus, the International Children's Palliative Care Network (ICPCN) developed a training programme including face-to-face and e-learning programmes to increase access to CPC. A review of ICPCN's e-learning programmes was undertaken in April/May 2018. At the time of writing, there are seven courses available, with more scheduled to be released in the near future. All courses are available in English, with some available in other languages, including Mandarin, Czech and Dutch. Between May 2016 and April 2018, 1501 individuals accessed the courses from 96 countries (39% nurses, 28% doctors). English was the prevalent language used (74%), followed by Spanish (8.5%). To date, over 3106 participants have accessed the e-learning programme from 124 countries. An evaluation in 2015/16 found that \textgreater80% of respondents said the courses were clear, understandable, rated them highly and found them useful. Some 75% of respondents reported improved knowledge, skills and change in attitude, while 61% reported a change in practice. The ICPCN e-learning platform is an innovative way of improving knowledge and understanding of CPC, thereby increasing the accessibility and availability of CPC.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2018.24.7.351" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2018.24.7.351</a>
2018
Article
Child
Children
Daniels A
Downing J
E-learning
Education
Female
Human
Human Experiment
International Journal of Palliative Nursing
July 2019 List
Language
Learning
Major Clinical Study
Male
mandarin
Nonhuman
Nurse
Paediatrics
Palliative
Palliative Therapy
Pediatrics
Skill
writing
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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/10.1136/goshabs.46" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1136/goshabs.46</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 receiving research ethics committee approval for studies involving children and young people with life-limiting conditions and life-threatening illnesses: Analysis of research ethics committee minutes and correspondence with principle investigators
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
documentation; scientist; cytochrome P450; endogenous compound; United Kingdom; conference abstract; human; child; peer review; attention; error; research ethics; writing; 9035-51-2 (cytochrome P450)
Creator
An entity primarily responsible for making the resource
Butler A E; Vincent K; Bluebond-Langner M
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/goshabs.46" target="_blank" rel="noreferrer noopener"> 10.1136/goshabs.46</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).
Description
An account of the resource
Background Research ethics committees (RECs) are identified as one of the biggest barriers to research with vulnerable populations, such as children and young people with life-limiting conditions or life-threatening illnesses (CYP with LLC/LTI). Despite this, REC concerns for research with this population and their correspondence with principle investigators during the research approval process remains unknown. The aim is to explore the challenges in receiving REC approval for studies involving CYP with LLC/LTIs, focusing on the primary concerns of the REC and the ways these are addressed by the research team. Methods Analysis of REC meeting minutes, REC decision letters, and researcher response letters were conducted for all studies involving CYP with LLC/LTIs reviewed in the United Kingdom between March 2011-2016. Results REC meeting minutes and decision letters were received for 77 studies, with 27 researcher response letters provided. Though most REC concerns were general, relating to participant information sheets, methodological issues, or formatting errors, a number of concerns specific to CYP with LLC/LTIs were also identified, such as the age of consent/ assent or the need to involve clinical teams in recruitment. Overall, RECs raised 279 concerns in their correspondence with investigators, most of which resulted in changes to research methods or documentation. Conclusions Research protocols involving CYP with LLC/LTIs usually require multiple changes before REC approval is given. Many of the main REC concerns, such as formatting issues or insufficient detail, can be easily resolved with attention to detail or peer review prior to submission. Others, such as recruitment methods or consent procedures, require more detailed consideration of study methods to ensure they appropriately consider the needs of CYP with LLC/LTIs. Understanding REC concerns may help researchers consider potential issues more thoroughly before submission, reducing the impact of RECs as a barrier and improving research quality overall.
2018
9035-51-2 (cytochrome P450)
Archives of Disease in Childhood
Attention
Bluebond-Langner M
Butler A E
Child
conference abstract
cytochrome P450
Documentation
Endogenous Compound
error
Human
March 2019 List
Peer Review
research ethics
Scientist
United Kingdom
Vincent K
writing
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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/10.1177/0269216314552091" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216314552091</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 advance care discussions between health care professionals and parents of children with a life-limiting disease: A qualitative interview study
Publisher
An entity responsible for making the resource available
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
semi structured interview; child; clinical article; conference abstract; conversation; data analysis; emotion; female; Germany; health care personnel; human; male; medical information; palliative therapy; perception; writing
Creator
An entity primarily responsible for making the resource
Daxer M; Monz A; Heitkamp N; Hein K; Knochel K; Jox R; Borasio GD; Fuhrer M
Description
An account of the resource
Background: Advance care discussions (ACD) between health care professionals (HCPs) and parents of children with a life-limiting disease are a core element to successful pediatric advance care planning (pACP). Yet, they are considered as challenging by all participants. Research objective: We aimed to investigate the perception of ACDs from the perspective of both HCPs and parents and to gain more details on obstacles, barriers and helpful communication strategies during the course of ACDs. Methods: Design: We used an ethnographic approach including (1) participant observation of ACDs between HCPs and parents, and (2) semi-structured interviews with all participants after the discussion. Conversation analysis and descriptive coding were used for data analysis. Setting/participants: We observed 15 discussions and conducted 31 interviews with 15 HCPs and 20 parents of eleven children cared for by three different palliative care teams in southern Germany. Results: HCPs evaluated the quality of ACD based on their perception of the emotional state and capacity of self-reflection of parents, and on the degree of correspondence between the HCP's and the parents' perspectives. In contrast, parents' evaluation focused on (1) perceived support in deciding upon medical treatment for their child, (2) the HCPs understanding of their family situation and (3) the structure provided by HCPs throughout the conversation. They appreciated when HCPs did not have time restrictions and stressed the importance of confidence and sympathy towards their discussion partners. Knowing each other made the discussion easier for parents and HCPs. Both sides supported the idea of two HCPs from different professions participating in ACD, even though parents preferred that physicians lead the conversation in order to provide them with the necessary medical information. Conclusions: HCPs and parents perceive ACD differently. Parents wish for structure and clear instructions that help them to prepare and decide for future crisis situations. Therefore, HCPs should adapt the structure of their ACDs to the parents' needs. In addition, our findings suggest that ACD should be conducted by HCPs familiar to family and child.
Identifier
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<a href="http://doi.org/10.1177/0269216314552091" target="_blank" rel="noreferrer noopener">10.1177/0269216314552091</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
Borasio GD
Child
Clinical Article
conference abstract
Conversation
Data Analysis
Daxer M
Emotion
Female
Führer M
Germany
Health Care Personnel
Hein K
Heitkamp N
Human
Jox R
Knochel K
Male
Medical Information
Monz A
Palliative Medicine
Palliative Therapy
Perception
Semi Structured Interview
writing
-
Dublin Core
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Title
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October 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
September 2018 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2017-314430" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1136/archdischild-2017-314430</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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Fifteen-minute consultation: Developing an advance care plan in partnership with the child and family
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Archives of Disease in Childhood: Education and Practice Edition
Date
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2018
Subject
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palliative therapy; advance care planning; article; child; female; human; human experiment; male; writing
Creator
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Harrop E J; Boyce K; Beale T; Brombley K
Description
An account of the resource
An advance care plan (ACP) is the record of a discussion between an individual (where possible), their professional care givers and those close to them about their future care. When performed well, the process provides all those involved with the opportunity to talk honestly about the future allowing children and their families to retain autonomy and to influence how they are looked after. While this may represent a difficult area of practice for healthcare professionals, both staff and families appear to benefit when the process is fully informed and the child and family are actively involved. This article is enriched by the insight of two bereaved parents, who have engaged actively with the process of advance care planning. As a multidisciplinary writing team, we aim to share our experiences, in the context of recent national guidance, on the use of ACPs.Copyright © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2017-314430" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-314430</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
Advance Care Planning
Archives of Disease in Childhood: Education and Practice Edition
Article
Beale T
Boyce K
Brombley K
Child
Female
Harrop E J
Human
Human Experiment
Male
Palliative Therapy
September 2018 List
writing