A good resource for parents, but will clinicians use it?: Evaluation of a resource for paediatric end-of-life decision making

Clare Delany,Jenny Hynson,Dominic Wilkinson,Vicki Xafis,Jo-Anne Hughson,Lynn Gillam

doi:10.1186/s12904-016-0177-5

Abstract

BackgroundCommunication 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.MethodsQualitative interviews were conducted with a range of health professionals who provide care to children facing life-limiting conditions.ResultsData 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.ConclusionThe 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.

Highlights

Communication with parents about end-of-life care and decisions is a difficult and sensitive process
Study aims The goal of the current research was to gain more indepth feedback about the acceptability and practical value of the Caring Decisions handbook from the perspective of a range of health professionals who are likely to be involved in caring for children whose parents will need to make end-of-life decisions and use this resource (Caring Decisions Handbook)
Theme 1: Family empowerment All of the interviewees discussed a general lack of resources available for parents needing to consider withdrawal or withholding of life support treatments for their child, and many of the participants considered that the provision of a resource such as the Caring Decisions handbook and web resource would be an effective way to empower parents

Summary

Introduction

Communication with parents about end-of-life care and decisions is a difficult and sensitive process. There is widespread professional and legal acceptance that it is ethical to withdraw or withhold lifesustaining medical treatments if these are not in the child’s or infant’s best interest [1,2,3,4,5]. Such decisions can lead to extremely challenging discussions in the intensive care unit, in the paediatric inpatient ward, or in the outpatient or community setting. Studies have confirmed that parents prefer the shared-decision making model [8]

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Discussion

Conclusion