title: A good resource for parents, but will clinicians use it?: Evaluation of a resource for paediatric end-of-life decision making.
abstract: BACKGROUND
  Communication 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.
  
  
  METHODS
  Qualitative interviews were conducted with a range of health professionals who provide care to children facing life-limiting conditions.
  
  
  RESULTS
  Data 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.
  
  
  CONCLUSIONS
  The 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.
authors.affiliation: Children's Bioethics Centre, Royal Children's Hospital Melbourne, 50 Flemington Rd, Parkville, VIC, 3052, Australia. c.delany@unimelb.edu.au.|University of Melbourne, Parkville, VIC, 3010, Australia. c.delany@unimelb.edu.au.
authors.forename: Clare
authors.identifier: http://orcid.org/0000-0001-6156-2347
authors.initials: C
authors.lastname: Delany
authors.affiliation: Sydney Children's Hospitals Network, Children's Hospital at Westmead, Locked Bag 4001, Westmead, NSW, 2145, Australia.|Centre for Values Ethics and the Law in Medicine, University of Sydney, Medical Foundation Building K25, Camperdown, NSW, 2006, Australia.
authors.forename: Vicki
authors.initials: V
authors.lastname: Xafis
authors.affiliation: Children's Bioethics Centre, Royal Children's Hospital Melbourne, 50 Flemington Rd, Parkville, VIC, 3052, Australia.
authors.forename: Lynn
authors.initials: L
authors.lastname: Gillam
authors.affiliation: University of Melbourne, Parkville, VIC, 3010, Australia.
authors.forename: Jo-Anne
authors.initials: JA
authors.lastname: Hughson
authors.affiliation: Children's Bioethics Centre, Royal Children's Hospital Melbourne, 50 Flemington Rd, Parkville, VIC, 3052, Australia.
authors.forename: Jenny
authors.initials: J
authors.lastname: Hynson
authors.affiliation: Oxford Uehiro Centre for Practical Ethics, Faculty of Philosophy, University of Oxford, Suite 8, Littlegate House, St Ebbes Street, Oxford, OX1 1PT, UK.
authors.forename: Dominic
authors.initials: D
authors.lastname: Wilkinson
mesh_terms: D001291:Attitude of Health Personnel; D002648:Child; D000066491:Clinical Decision-Making / Q000941:ethics / Q000379:methods*; D005190:Family / Q000523:psychology; D006801:Humans; D007231:Infant, Newborn; D020407:Internet / Q000706:statistics & numerical data; D007400:Interprofessional Relations; D010549:Personal Satisfaction; D011209:Power, Psychological; D011368:Professional-Family Relations; D013727:Terminal Care / Q000941:ethics / Q000379:methods*; D019452:Terminally Ill / Q000523:psychology; D013782:Textbooks as Topic
keywords: Consumer health information; Decision making; End of life care; Health communication; Inter-professional communication; Paediatrics