1
40
5
-
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 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/10.1177/27527530221073298">http://doi.org/10.1177/27527530221073298</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
Ethical Considerations in Oncology and Palliative Care Research During COVID-19
Publisher
An entity responsible for making the resource available
Journal of Pediatric Hematology/Oncology 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
coronavirus; research design; research ethics; virtual research; controlled study; human neoplasm therapy; palliative nursing; palliative therapy; pandemic; randomized controlled; trial
Creator
An entity primarily responsible for making the resource
Akard TF; Gilmer MJ; Hendricks-Ferguson VL
Description
An account of the resource
Background: Researchers and clinicians must collaborate to consider alternative approaches to conduct standard protocol activities and deliver interventions during the pandemic. The COVID-19 pandemic has required researchers at many institutions to modify traditional in-person research to virtually delivered activities and still adhere to healthcare ethical principles of beneficence, justice, and respect for persons. Our objective is to describe ethical considerations faced by nurse investigators who modified research conducted in pediatric oncology during the COVID-19 pandemic. Methods Review of research case examples. Results Two research study case examples are presented, including remote-participant recruitment via Facebook advertising and a virtually delivered web-based legacy intervention in a pediatric oncology randomized clinical trial. Challenges to modifying in-person approaches to remote strategies are also discussed, with examples of advantages and disadvantages presented from a study testing a human-animal interaction intervention for children with cancer. Discussion Our case information may assist other investigators in planning virtually delivered behavioral strategies for populations that may prefer the convenience of remote participation in research studies because of multiple family responsibilities in the care of a family member, during the pandemic and after. As researchers understand more about subjects' preferences to receive protocol activities (i.e., virtual vs. in-person delivery), they may be able to reduce risks of being unable to collect data because eligible subjects declined or withdrew from a study due to multiple-home responsibilities during the care of a family member with a serious or life-limiting condition.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/27527530221073298">10.1177/27527530221073298</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
Akard TF
Controlled Study
coronavirus
Gilmer MJ
Hendricks-Ferguson VL
human neoplasm therapy
Journal of Pediatric Hematology/Oncology Nursing
October 2022 List
palliative nursing
Palliative Therapy
Pandemic
randomized controlled
Research Design
research ethics
trial
virtual research
-
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 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
May 2022 List
URL Address
<a href="http://doi.org/10.3389/fdgth.2022.730430" target="_blank" rel="noreferrer noopener">http://doi.org/10.3389/fdgth.2022.730430</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
Ethical Principles in Digital Palliative Care for Children: The MyPal Project and Experiences Made in Designing a Trustworthy Approach
Publisher
An entity responsible for making the resource available
Frontiers in Digital Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
acceptability; cancer; children; digital health; palliative care; research ethics; trustworthiness
Creator
An entity primarily responsible for making the resource
Garani-Papadatos T; Natsiavas P; Meyerheim M; Hoffmann S; Karamanidou C; Payne SA
Description
An account of the resource
This paper explores the ethical dimension of the opportunity to offer improved electronic patient-reported outcome (ePRO) systems addressing personal needs of pediatric cancer patients, their parents and caregivers, with regard to technological advance of digital health. This opportunity has been explored in the MyPal research project, which aims to assess a patient-centered service for palliative care relying on the adaptation and extension of digital health tools and concepts available from previous projects. Development and implementation of ePROs need to take place in a safe, secure and responsible manner, preventing any possible harm and safeguarding the integrity of humans. To that end, although the final results will be published at the end of the project, this paper aims to increase awareness of the ethical ramifications we had to address in the design and testing of new technologies and to show the essentiality of protection and promotion of privacy, safety and ethical standards. We have thus reached a final design complying with the following principles: (a) respect for the autonomy of participants, especially children, (b) data protection and transparency, (c) fairness and non-discrimination, (d) individual wellbeing of participants in relation to their physical and psychological health status and e) accessibility and acceptability of digital health technologies for better user-engagement. These principles are adapted from the Ethics Guidelines for a trustworthy Artificial Intelligence (AI) which provide the framework for similar interventions to be lawful, complying with all applicable laws and regulations, ethical, ensuring compliance to ethical principles and values and robust, both from a technical and social perspective.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3389/fdgth.2022.730430" target="_blank" rel="noreferrer noopener">10.3389/fdgth.2022.730430</a>
2022
acceptability
Cancer
Children
digital health
Frontiers in Digital Health
Garani-Papadatos T
Hoffmann S
Karamanidou C
May 2022 List
Meyerheim M
Natsiavas P
Palliative Care
Payne SA
research ethics
trustworthiness
-
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
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
A name given to the resource
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
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
February 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
February 2018 List
URL Address
<a href="http://doi.org/" target="_blank" rel="noreferrer">http://doi.org/</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
Children's Nurses' experiences in delivering bereavement care to children and families with life limiting conditions in the Irish context
Publisher
An entity responsible for making the resource available
Bmc Pregnancy And Childbirth
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Bereavement support; nurse; bereavement; Child; genetic transcription; hospice care; Human; Informed Consent; Ireland; Only Child; Palliative therapy; research ethics; semi structured interview; Terminal Care
Creator
An entity primarily responsible for making the resource
Power S; Kelly-Horrigan M
Description
An account of the resource
Healthcare providers influence the experiences of families during end of life care and death of a child*. Nurses are best placed to provide bereavement support as they have opportunities to build therapeutic relationships through closely and frequently caring for the child and family. This relationship is essential within the delivery of bereavement care. However, there is a dearth of information on nurses' emic perspective and experiences within this area. The aim of this study was to gain a deeper understanding of the experiences of children's nurses' (RCN) in delivering bereavement care to children and their families with life limiting conditions, and what meaning they ascribe to their experience. In addition, the aim was to explore what impact provision of bereavement care had on RCN's as service providers, and what their needs were in the provision of effective, supportive, quality driven bereavement care to this population. Using a phenomenological design guided by Heideggerian approach underpinned by Ricoeur's analytical framework, seven semistructured interviews were conducted with RCN's with experience of delivering children's palliative care and bereavement care in Ireland. Interviews were taped and transcribed verbatim. Three themes were identified; 'being communicative and collaborative', 'being challenged' and 'being familiar'. These themes encompassed nurses' experiences with both families and healthcare professionals, highlighting the benefits for RCN involvement in the delivery of bereavement care to promote overall best outcomes. The findings support the role of RCN's in the delivery of bereavement care to children and families with life limiting conditions. It highlights the need for RCN's to be educated, up-skilled, supported, and included within the interdisciplinary team to deliver bereavement care. Ethical approval for the study was granted by LauraLynn Research Ethics Committee (2016). Written informed consent was obtained by all study participants.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/" target="_blank" rel="noreferrer"></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
Bereavement
Bereavement Support
Bmc Pregnancy And Childbirth
Child
February 2018 List
genetic transcription
Hospice Care
Human
Informed Consent
Ireland
Kelly-Horrigan M
Nurse
Only Child
Palliative Therapy
Power S
research ethics
Semi Structured Interview
Terminal Care