Journal article

Caring Decisions: The Development of a Written Resource for Parents Facing End-of-Life Decisions

Vicki Xafis, Lynn Gillam, Jenny Hynson, Jane Sullivan, Mary Cossich, Dominic Wilkinson

Journal of Palliative Medicine | MARY ANN LIEBERT, INC | Published : 2015


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-discip..

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Awarded by Channel 7 Children's Research Foundation

Awarded by Australian National Health and Medical Research Council

Awarded by Wellcome Trust

Funding Acknowledgements

We would like to acknowledge the assistance provided by Dr. Steve Keeley and Professor Annette Braunack-Mayer in the design of the study. This work was supported by funding from a Channel 7 Children's Research Foundation Grant [13776]. DW was supported for this work by an early career fellowship from the Australian National Health and Medical Research Council [1016641] and in part by a grant from the Wellcome Trust [086041/Z/08/Z].