Decision-making and future planning for children with life-limiting conditions: a qualitative systematic review and thematic synthesis

Popejoy, E., Pollock, K., Almack, K., Manning, J.C. and Johnston, B. (2017) Decision-making and future planning for children with life-limiting conditions: a qualitative systematic review and thematic synthesis. Child: Care, Health and Development, (doi:10.1111/cch.12461) (PMID:28402040) (Early Online Publication)

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Abstract

Background: In the last decade, the number of children with life-limiting and life-threatening conditions in England has almost doubled, and it is estimated that worldwide, there are 1.2 million children with palliative care needs. Families and professionals caring for children with life-limiting conditions are likely to face a number of difficult treatment decisions and develop plans for future care over the course of the child's life, but little is known about the process by which these decisions and plans are made. Methods: The purpose of this review is to synthesize findings from qualitative research that has investigated decision-making and future planning for children with life-limiting conditions. A systematic search of six online databases was conducted and identified 887 papers for review; five papers were selected for inclusion, using predefined criteria. Reference list searching and contacting authors identified a further four papers for inclusion. Results: Results sections of the papers were coded and synthesized into themes. Nineteen descriptive themes were identified, and these were further synthesized into four analytical themes. Analytical themes were ‘decision factors’, ‘family factors’, ‘relational factors’ and ‘system factors’. Conclusions: Review findings indicate that decision-making and future planning is difficult and needs to be individualized for each family. However, deficits in understanding the dynamic, relational and contextual aspects of decision-making remain and require further research.

Item Type:Articles
Status:Early Online Publication
Refereed:Yes
Glasgow Author(s) Enlighten ID:Johnston, Professor Bridget
Authors: Popejoy, E., Pollock, K., Almack, K., Manning, J.C., and Johnston, B.
College/School:College of Medical Veterinary and Life Sciences > School of Medicine, Dentistry & Nursing
Journal Name:Child: Care, Health and Development
Publisher:Wiley
ISSN:0305-1862
ISSN (Online):1365-2214
Published Online:12 April 2017
Copyright Holders:
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<fragment>Copyright © 2017 John Wiley & Sons Ltd</fragment>
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First Published:First published in Child: Care, Health and Development 2017
Publisher Policy:Reproduced in accordance with the copyright policy of the publisher

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