Please use this identifier to cite or link to this item: http://hdl.handle.net/2440/98584
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Type: Journal article
Title: Caring decisions: the development of a written resource for parents facing end-of-life decisions
Author: Xafis, V.
Gillam, L.
Hynson, J.
Sullivan, J.
Cossich, M.
Wilkinson, D.
Citation: Journal of Palliative Medicine, 2015; 18(11):945-955
Publisher: Mary Ann Liebert
Issue Date: 2015
ISSN: 1096-6218
1557-7740
Statement of
Responsibility: 
Vicki Xafis, Lynn Gillam, Jane Sullivan, Mary Cossich, and Dominic Wilkinson
Abstract: 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.We discuss the development of the resources, modification after reviewer feedback and findings from initial pilot implementation.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.Twelve experts and parents formed the consultation panel. Eight parents of children with life-limiting conditions and clinicians were interviewed in the pilot study.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.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.
Keywords: Humans; Terminal Care; Pilot Projects; Attitude of Health Personnel; Parents; Professional-Family Relations; Decision Making; Publications; Internet; Adult; Child; Advance Care Planning; Australia; Consumer Health Information
Rights: © Vicki Xafis, Lynn Gillam, Jenny Hynson, Jane Sullivan, Mary Cossich, Dominic Wilkinson 2015; Published by Mary Ann Liebert, Inc. This Open Access article is distributed under the terms of the Creative Commons Attribution Noncommercial License (http:// creativecommons.org/licenses/by-nc/4.0/) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and the source are credited.
RMID: 0030037181
DOI: 10.1089/jpm.2015.0048
Grant ID: http://purl.org/au-research/grants/nhmrc/1016641
Appears in Collections:Public Health publications

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