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

BMC Palliative Care

Research Article

Lynn Gillam¹  Jenny Hynson¹  Clare Delany²  Dominic Wilkinson³  Vicki Xafis⁴  Jo-anne Hughson⁵ 

[1] Children’s Bioethics Centre, Royal Children’s Hospital Melbourne, 50 Flemington Rd, 3052, Parkville, VIC, Australia;Children’s Bioethics Centre, Royal Children’s Hospital Melbourne, 50 Flemington Rd, 3052, Parkville, VIC, Australia;University of Melbourne, 3010, Parkville, VIC, Australia;Oxford Uehiro Centre for Practical Ethics, Faculty of Philosophy, University of Oxford, Suite 8, Littlegate House, St Ebbes Street, OX1 1PT, Oxford, UK;Sydney Children’s Hospitals Network, Children’s Hospital at Westmead, Locked Bag 4001, 2145, Westmead, NSW, Australia;Centre for Values Ethics and the Law in Medicine, University of Sydney, Medical Foundation Building K25, 2006, Camperdown, NSW, Australia;University of Melbourne, 3010, Parkville, VIC, Australia;

关键词: Health communication;    Inter-professional communication;    End of life care;    Consumer health information;    Decision making;    Paediatrics;   

DOI  :  10.1186/s12904-016-0177-5

 received in 2016-08-29, accepted in 2016-12-20,  发布年份 2017

来源: Springer

【 摘 要 】

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.

【 授权许可】

CC BY   
© The Author(s). 2017