Caring Decisions: The Development Of A Written Resource For Parents Facing End-of-life Decisions

Title

Caring Decisions: The Development Of A Written Resource For Parents Facing End-of-life Decisions

Creator

Xafis V; Gillam L; Hynson J; Sullivan J; Cossich M; Wilkinson D

Identifier

10.1089/jpm.2015.0048

Publisher

Journal Of Palliative Medicine

Date

2015

Subject

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

Description

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.

Rights

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).

Citation List Month

July 2017 List

Citation

Xafis V; Gillam L; Hynson J; Sullivan J; Cossich M; Wilkinson D, “Caring Decisions: The Development Of A Written Resource For Parents Facing End-of-life Decisions,” Pediatric Palliative Care Library, accessed October 27, 2021, https://pedpalascnetlibrary.omeka.net/items/show/10944.

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