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40
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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
July 2017 List
URL Address
<a href="https://doi.org/10.1186/s12904-015-0024-0" target="_blank" rel="noreferrer">https://doi.org/10.1186/s12904-015-0024-0</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
What Information Do Parents Need When Facing End-of-life Decisions For Their Child? A Meta-synthesis Of Parental Feedback
Publisher
An entity responsible for making the resource available
Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Communication;Decision Making;Health Knowledge Attitudes Practice;Hope;Humans;Intensive Care Units Pediatric/organization & Administration;Needs Assessment;Parents/education;Parents/psychology;Terminal Care/methods;Terminal Care/psychology;Time Factors
Creator
An entity primarily responsible for making the resource
Xafis V; Wilkinson D; Sullivan J
Description
An account of the resource
BACKGROUND: The information needs of parents facing end-of-life decisions for their child are complex due to the wide-ranging dimensions within which such significant events unfold. While parents acknowledge that healthcare professionals are their main source of information, they also turn to a variety of additional sources of written information in an attempt to source facts, discover solutions, and find hope. Much has been written about the needs of parents faced with end-of-life decisions for their child but little is known about the written information needs such parents have. Research in the adult intensive care context has shown that written resources impact positively on the understanding of medical facts, including diagnoses and prognoses, communication between families and healthcare professionals, and the emotional wellbeing of families after their relative's death. METHODS: A meta-synthesis of predominantly empirical research pertaining to features which assist or impede parental end-of-life decisions was undertaken to provide insight and guidance in our development of written resources (short print and online comprehensive version) for parents. RESULTS: The most prominently cited needs in the literature related to numerous aspects of information provision; the quantity, quality, delivery, and timing of information and its provision impacted not only on parents' ability to make end-of-life decisions but also on their emotional wellbeing. The meta-synthesis supports the value of written materials, as these provide guidance for both parents and healthcare professionals in pertinent content areas. CONCLUSIONS: Further research is required to determine the impact that written resources have on parental end-of-life decision-making and on parents' wellbeing during and after their experience and time in the hospital environment.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1186/s12904-015-0024-0" target="_blank" rel="noreferrer">10.1186/s12904-015-0024-0</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).
2015
BMC Palliative Care
Communication
Decision Making
Health Knowledge Attitudes Practice
Hope
Humans
Intensive Care Units Pediatric/organization & Administration
July 2017 List
Needs Assessment
Parents/education
Parents/psychology
Sullivan J
Terminal Care/methods
Terminal Care/psychology
Time Factors
Wilkinson D
Xafis V
-
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 2017 List
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
Caring Decisions: The Development Of A Written Resource For Parents Facing End-of-life Decisions
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
2015
Subject
The topic of the resource
Adult;Advance Care Planning/ethics;Advance Care Planning/standards;Attitude Of Health Personnel;Australia;Child;Consumer Health Information/methods;Decision Making/ethics;Humans;Internet;Parents/education;Parents/psychology;Pilot Projects;Professional-family Relations;Publications;Terminal Care/methods;Terminal Care/standards
Creator
An entity primarily responsible for making the resource
Xafis V; Gillam L; Hynson J; Sullivan J; Cossich M; Wilkinson D
Description
An account of the resource
BACKGROUND: Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical issues. The Caring Decisions handbook and website were developed to fill these gaps. AIM: We discuss the development of the resources, modification after reviewer feedback and findings from initial pilot implementation. DESIGN: A targeted literature review-to identify resources and factors that impact on parental EoL decision-making; development phase-guided by the literature and the researchers' expertise; consultation process-comprised a multi-disciplinary panel of experts and parents; pilot evaluation study-hard-copy handbook was distributed as part of routine care at an Australian Children's Hospital. SETTING/PARTICIPANTS: Twelve experts and parents formed the consultation panel. Eight parents of children with life-limiting conditions and clinicians were interviewed in the pilot study. RESULTS: Numerous factors supporting/impeding EoL decisions were identified. Caring Decisions addressed issues identified in the literature and by the multidisciplinary research team. The consultation panel provided overwhelmingly positive feedback. Pilot study parents found the resources helpful and comforting. Most clinicians viewed the resources as very beneficial to parents and identified them as ideal for training purposes. CONCLUSIONS: The development of the resources addressed many of the gaps in existing resources. The consultation process and the pilot study suggest these resources could be of significant benefit to parents and clinicians.
Identifier
An unambiguous reference to the resource within a given context
10.1089/jpm.2015.0048
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).
2015
Adult
Advance Care Planning/ethics
Advance Care Planning/standards
Attitude Of Health Personnel
Australia
Child
Consumer Health Information/methods
Cossich M
Decision Making/ethics
Gillam L
Humans
Hynson J
Internet
Journal of Palliative Medicine
July 2017 List
Parents/education
Parents/psychology
Pilot Projects
Professional-family Relations
Publications
Sullivan J
Terminal Care/methods
Terminal Care/standards
Wilkinson D
Xafis V
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2017 List
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
A Good Resource For Parents, But Will Clinicians Use It?: Evaluation Of A Resource For Paediatric End-of-life Decision Making
Publisher
An entity responsible for making the resource available
Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Creator
An entity primarily responsible for making the resource
Delany C; Xafis V; Gillam L; Hughson JA; Hynson J; Wilkinson D
Description
An account of the resource
BACKGROUND: Communication with parents about end-of-life care and decisions is a difficult and sensitive process. The objective of the present study was to ascertain clinicians' views on the acceptability and usefulness of a handbook and web-based resource (Caring Decisions) that was designed as an aid for parents facing end-of-life decisions for their child. METHODS: Qualitative interviews were conducted with a range of health professionals who provide care to children facing life-limiting conditions. RESULTS: Data analysis confirmed the acceptability and usefulness of the resource. Two major themes were revealed: 1. Family empowerment, with sub-themes Giving words and clarity, Conversation starter, 'I'm not alone in this', and A resource to take away, highlighted how the resource filled a gap by supporting and enabling families in a multitude of ways; 2. Not just for families, with sub-themes A guide for staff, When to give the resource?, How to give the resource and Who should give the resource?, explored the significant finding that participants viewed the resource as a valuable tool for themselves, but its presence also brought into relief potential gaps in communication processes around end-of-life care. CONCLUSION: The interview data indicated the positive reception and clear value and need for this type of resource. However, it is likely that successful resource uptake will be contingent on discussion and planning around dissemination and use within the health care team.
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
BMC Palliative Care
Delany C
Gillam L
Hughson JA
Hynson J
March 2017 List
Wilkinson D
Xafis V
-
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 2016 List
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
Death Talk: Basic Linguistic Rules And Communication In Perinatal And Paediatric End-of-life Discussions.
Publisher
An entity responsible for making the resource available
Patient Education And Counseling
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Communication; Death; Decision Making; Female; Humans; Linguistics; Male; Parents/psychology; Pediatrics; Perinatal Death; Pregnancy; Professional-family Relations; Terminal Care/methods; Terminally Ill
Consumer Health Information; Decision-making; End-of-life Care; Health Communication
Creator
An entity primarily responsible for making the resource
Xafis V; Watkins A; Wilkinson D
Description
An account of the resource
OBJECTIVE:
This paper considers clinician/parent communication difficulties noted by parents involved in end-of-life decision-making in the light of linguistic theory.
METHODS:
Grice's Cooperative Principle and associated maxims, which enable effective communication, are examined in relation to communication deficiencies that parents have identified when making end-of-life decisions for the child. Examples from the literature are provided to clarify the impact of failing to observe the maxims on parents and on clinician/parent communication.
RESULTS:
Linguistic theory applied to the literature on parental concerns about clinician/parent communication shows that the violation of the maxims of quantity, quality, relation, and manner as well as the stance that some clinicians adopt during discussions with parents impact on clinician/parent communication and lead to distrust, anger, sadness, and long-term difficulties coping with the experience of losing one's child.
CONCLUSION:
Parents have identified communication deficiencies in end-of-life discussions. Relating these communication deficiencies to linguistic theory provides insight into communication difficulties but also solutions.
PRACTICE IMPLICATIONS:
Gaining an understanding of basic linguistic theory that underlies human interactions, gaining insight into the communication deficiencies that parents have identified, and modifying some communication behaviours in light of these with the suggestions made in this article may lead to improved clinician/parent communication.
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).
2016
Communication
Consumer Health Information
Death
Decision Making
Decision-making
End-of-life Care
Female
Health Communication
Humans
Linguistics
Male
May 2016 List
Parents/psychology
Patient Education and Counseling
Pediatrics
Perinatal Death
Pregnancy
Professional-family Relations
Terminal Care/methods
Terminally Ill
Watkins A
Wilkinson D
Xafis V