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40
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Posters
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.
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
Contributions and recognition of patient partners in pediatric health research: a rapid scoping review protocol
Creator
An entity primarily responsible for making the resource
Pawliuk C; Hermansen AM; Barrans C; Siden H
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.31219/osf.io/svztf">10.31219/osf.io/svztf</a>
Publisher
An entity responsible for making the resource available
OSF Preprints
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Description
An account of the resource
Objective: The objective of this rapid scoping review is to: 1) assess the prevalence of acknowledgement and authorship of patient partners in pediatric health research; 2) understand how patient partners contribute through the research process; and 3) assess how patient engagement is identified in publications.
Introduction: Patient-Oriented Research (POR) is an area of increasing interest and activity, with growing funding opportunities. Patient partners with significant contributions to a research project may be eligible for formal acknowledgment or authorship, however locating patient-engaged studies is difficult and time consuming, so there is little understanding of the prevalence of patient partner acknowledgement or authorship and how patient partners typically contribute to research projects.
Inclusion criteria: This rapid scoping review will consider evidence sources that investigate topics related to pediatric patients aged (0-19 years) and that include acknowledgement or descriptions of one or more patient partner(s) contributions in one or more studies. We will exclude sources that include non-pediatric patients, are not in English, and not published in full in a journal (e.g. conference abstracts).
Methods: We will search MEDLINE (Ovid), Embase (Ovid) and CINAHL (EBSCOhost). In addition, we will search key sources of POR literature. To increase the rapidity of this review, only 25% of sources will be reviewed and extracted by two team members and the remaining sources will be screened and extracted by a single reviewer. Data will be extracted using a data extraction tool developed by the reviewers. The results will be presented in a tabular/and/or charted format and accompanied by a narrative summary describing how the results related to the review objectives and questions.
acknowledgement
Authorship
Barrans C
Hermansen AM
patient and public involvement
patient partner
Patient Partner Recognition
patient-oriented research
Pawliuk C
Preprint
protocol
rapid review
Scoping review
Siden 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
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/10.1177/2632352420958000" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/2632352420958000</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
The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups
Publisher
An entity responsible for making the resource available
Palliative Care and Social Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
children; cancer; life-limiting illness; non-cancer; parents; paediatric palliative care; article.; interest with respect to the research; support needs; and/or publication of this; authorship; health professionals
Creator
An entity primarily responsible for making the resource
Aoun S M; Gill F J; Phillips M B; Momber S; Cuddeford L; Deleuil R; Stegmann R; Howting D; Lyon M E
Description
An account of the resource
BACKGROUND: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. OBJECTIVES: Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing parents' needs caring for cancer and non-cancer conditions. Carer well-being outcomes were also tested. METHODS: A non-randomised prospective intervention pilot study. Twenty-eight parents (out of 42 approached) and 5 health professionals working in paediatric palliative care services in Western Australia (2018-2019) completed the pilot study. RESULTS: Two-thirds of eligible parents completed the study. The highest support needs included having time for yourself; practical help in the home; knowing what to expect in the future; financial, legal or work issues; and knowing who to contact if you are concerned. Almost all needs were considerably more pronounced for the non-cancer group. The pCSNAT seemed feasible and outcomes demonstrated a tendency to improve. CONCLUSION: Using the pCSNAT provided a concise and comprehensive 'one stop shop' for health professionals to evaluate difficulties encountered by parents. The disadvantages reported by the non-cancer group warrant increased attention. Paediatric palliative care should adopt routine assessment of parents' support needs to anticipate early and tailored supports including partnerships with the community.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/2632352420958000" target="_blank" rel="noreferrer noopener">10.1177/2632352420958000</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
and/or publication of this
Aoun S M
article.
Authorship
Cancer
Children
Cuddeford L
Deleuil R
Gill F J
health professionals
Howting D
interest with respect to the research
life-limiting illness
Lyon M E
Momber S
non-cancer
Oncology 2020 List
paediatric palliative care
Palliative Care and Social Practice
Parents
Phillips M B
Stegmann R
support needs
-
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 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
October 2020 List
URL Address
<a href="http://doi.org/10.1177/0269216320950089" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216320950089</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
The pervasive relevance of COVID-19 within routine paediatric palliative care consultations during the pandemic: A conversation analytic 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
2020
Subject
The topic of the resource
and/or publication of this; article.; authorship; child; communication; Covid-19; of interest with respect to the research; Palliative care; pandemics
Creator
An entity primarily responsible for making the resource
Ekberg K; Weinglass L; Ekberg S; Danby S; Herbert A
Description
An account of the resource
BACKGROUND: The importance of caring for children with complex and serious conditions means that paediatric palliative care must continue during pandemics. The recent pandemic of Coronavirus Disease 2019 (COVID-19) provides a natural experiment to study health communication during pandemic times. However, it is unknown how communication within consultations might change during pandemics. AIM: This study, a sub-study of a larger project, aimed to examine real-world instances of communication in paediatric palliative care consultations prior to and during the COVID-19 pandemic to understand how clinicians and families talk about the pandemic. DESIGN: Paediatric palliative care consultations prior to, during, and immediately following the initial peak of COVID-19 cases in Australia were video recorded and analysed using Conversation Analysis methods. SETTING/PARTICIPANTS: Twenty-five paediatric palliative care consultations (including face-to-face outpatient, telehealth outpatient and inpatient consultations) were video recorded within a public children's hospital in Australia. Participants included 14 health professionals, 15 child patients, 23 adult family members and 5 child siblings. RESULTS: There was a pervasive relevance of both serious and non-serious talk about COVID-19 within the consultations recorded during the pandemic. Topics typical of a standard paediatric palliative care consultation often led to discussion of the pandemic. Clinicians (55%) and parents (45%) initiated talk about the pandemic. CONCLUSIONS: Clinicians should not be surprised by the pervasiveness of COVID-19 or other pandemic talk within standard paediatric palliative care consultations. This awareness will enable clinicians to flexibly address family needs and concerns about pandemic-related matters that may impact health and wellbeing.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216320950089" target="_blank" rel="noreferrer noopener">10.1177/0269216320950089</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
and/or publication of this
article.
Authorship
Child
Communication
COVID-19
Danby S
Ekberg K
Ekberg S
Herbert A
October 2020 List
of interest with respect to the research
Palliative Care
Palliative Medicine
Pandemics
Weinglass L
-
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 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/10.1177/2333794x19854941" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/2333794x19854941</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
Professional Bereavement Photography in the Setting of Perinatal Loss: A Qualitative Analysis
Publisher
An entity responsible for making the resource available
Global Pediatric Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
qualitative research; bereavement; grief; perinatal loss; photography; publication of this article.; and/or; authorship; conflicts of interest with respect to the research
Creator
An entity primarily responsible for making the resource
Ramirez F D; Bogetz J F; Kufeld M; Yee L M
Description
An account of the resource
Perinatal loss, including fetal and infant death, is a devastating experience for parents, resulting in long-term adverse physical and psychosocial outcomes. However, little is known about what services might best support grieving parents. We aimed to understand the role of professional bereavement photography in assisting the grieving process of parents who have lost a fetus or infant, by examining the perspectives of bereaved parents, professional photographers, and health care professionals. Twenty semistructured interviews were conducted, and interview transcripts were analyzed using modified grounded theory. Twenty-three individuals participated, including 6 bereaved parents, 8 photographers, and 9 health care professionals. Analyses generated 5 major themes describing ways in which the photographs were valuable to parents: validation of the experience, permission to share, creation of a permanent and tangible legacy, creation of positive memories, and moving forward after the loss. Hospitals should consider incorporation of professional bereavement photography services into palliative care and bereavement programs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/2333794x19854941" target="_blank" rel="noreferrer noopener">10.1177/2333794x19854941</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
and/or
August 2019 List
Authorship
Bereavement
Bogetz J F
conflicts of interest with respect to the research
Global Pediatric Health
Grief
Kufeld M
Perinatal Loss
Photography
Publication Of This Article.
Qualitative Research
Ramirez F D
Yee L M
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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
Backlog
URL Address
<a href="http://doi.org/10.1177/0883073808331089" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073808331089</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
Success at publishing in biomedical journals: hints from a journal editor
Publisher
An entity responsible for making the resource available
Journal Of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Biomedical Research; Research; Authorship; Peer Review; Periodicals as Topic; Publishing; PubMed
Creator
An entity primarily responsible for making the resource
Brumback RA
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0883073808331089" target="_blank" rel="noreferrer">10.1177/0883073808331089</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).
Type
The nature or genre of the resource
Journal Article
2009
Authorship
Backlog
Biomedical Research
Brumback RA
Journal Article
Journal of Child Neurology
Peer Review
Periodicals as Topic
Publishing
PubMed
Research