Noyes, Jane, Hastings, Richard P., Lewis, Mary, Hain, Richard, Bennett, Virginia, Hobson, Lucie and Spencer, Llinos Haf (2013) Planning ahead with children with life-limiting conditions and their families : development, implementation and evaluation of ‘My Choices’. BMC Palliative Care, Volume 12 (Number 1). Article number 5. doi:10.1186/1472-684X-12-5

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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.
Conclusion: 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.

Item Type:	Journal Article
Subjects:	R Medicine > RJ Pediatrics R Medicine > RT Nursing
Divisions:	Faculty of Social Sciences > Centre for Educational Development, Appraisal and Research (CEDAR)
Library of Congress Subject Headings (LCSH):	Pediatrics -- Research, Palliative treatment -- Great Britain, Pediatric nursing , Children -- Health and hygiene , Terminal care , Evidence-based medicine
Journal or Publication Title:	BMC Palliative Care
Publisher:	BioMed Central Ltd.
ISSN:	1472-684X
Official Date:	2013
Dates:	Date Event 2013 Published
Date of first compliant deposit:	25 December 2015
Volume:	Volume 12
Number:	Number 1
Page Range:	Article number 5
DOI:	10.1186/1472-684X-12-5
Status:	Peer Reviewed
Publication Status:	Published
Access rights to Published version:	Open Access
Funder:	National Institute for Social Care and Health Research (Wales) (NISCHR)

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