planning ahead with children with life-limiting conditions and their families development, implementation and evaluation of ‘my choices’计划推进上来说是条件的儿童和他们的家庭发展、实施和评价u201c我的选择u201d.pdfVIP

Noyes et al. BMC Palliative Care 2013, 12:5 /1472-684X/12/5 RESEARCH ARTICLE Open Access Planning ahead with children with life-limiting conditions and their families: development, implementation and evaluation of ‘My Choices’ 1,7* 2 3 4 5 6 Jane Noyes , Richard P Hastings , Mary Lewis , Richard Hain , Virginia Bennett , Lucie Hobson and Llinos Haf Spencer5 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 writte