title: Planning ahead with children with life-limiting conditions and their families: development, implementation and evaluation of 'My Choices'.
abstract: BACKGROUND
  The United Kingdom has led the world in the development of children's palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children's palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase.
  
  
  METHODS
  Drawing on contemporaneous research on producing evidence-based children's health information, we collaborated with leading children's not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation.
  
  
  RESULTS
  Parents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals.
  
  
  CONCLUSIONS
  The My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning.
authors: Noreen Edwards Chair in Health Services Research and Child Health, School of Healthcare Sciences, Bangor University, Bangor, UK. jane.noyes@bangor.ac.uk.
authors: Jane
authors: J
authors: Noyes
authors: Richard P
authors: RP
authors: Hastings
authors: Mary
authors: M
authors: Lewis
authors: Richard
authors: R
authors: Hain
authors: Virginia
authors: V
authors: Bennett
authors: Lucie
authors: L
authors: Hobson
authors: Llinos Haf
authors: LH
authors: Spencer
references: BMC Pediatr. 2010 Sep 27;10:70
references: 20875112
references: Milbank Q. 2002;80(2):303-24
references: 12101874
references: Palliat Med. 2005 Mar;19(2):137-42
references: 15810753
references: Child Care Health Dev. 2008 Jul;34(4):542-4
references: 19154555
references: Palliat Med. 2010 Dec;24(8):796-806
references: 20719816
references: J Adv Nurs. 2010 May;66(5):968-77
references: 20337798
references: BMC Palliat Care. 2010 May 10;9:8
references: 20459734
references: Pediatrics. 2001 Jun;107(6):E99
references: 11389297
references: Pediatrics. 2011 Jun;127(6):1094-101
references: 21555495
references: Arch Dis Child. 2010 Feb;95(2):79-82
references: 20172892
references: BMJ Support Palliat Care. 2011 Sep;1(2):167-73
references: 24653230