Please use this identifier to cite or link to this item: https://hdl.handle.net/2440/123221
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Type: Journal article
Title: A good resource for parents, but will clinicians use it?: Evaluation of a resource for paediatric end-of-life decision making
Author: Delany, C.
Xafis, V.
Gillam, L.
Hughson, J.
Hynson, J.
Wilkinson, D.
Citation: BMC Palliative Care, 2017; 16(1):12-1-12-10
Publisher: BMC
Issue Date: 2017
ISSN: 1472-684X
1472-684X
Statement of
Responsibility: 
Clare Delany, Vicki Xafis, Lynn Gillam, Jo-anne Hughson, Jenny Hynson and Dominic Wilkinson
Abstract: 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.
Keywords: Humans
Terminal Care
Attitude of Health Personnel
Personal Satisfaction
Power (Psychology)
Family
Interprofessional Relations
Professional-Family Relations
Internet
Child
Infant, Newborn
Terminally Ill
Textbooks as Topic
Clinical Decision-Making
Rights: © The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
DOI: 10.1186/s12904-016-0177-5
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