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

Popejoy, Emma; Pollock, Kristian; Almack, Kathryn; Manning, Joseph C.; Johnston, B.

Authors

Emma Popejoy

Kathryn Almack

Joseph C. Manning

B. Johnston



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.

Citation

Popejoy, E., Pollock, K., Almack, K., Manning, J. C., & 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, 43(5), 627-644. https://doi.org/10.1111/cch.12461

Journal Article Type Article
Acceptance Date Mar 13, 2017
Online Publication Date Apr 12, 2017
Publication Date Sep 1, 2017
Deposit Date May 2, 2017
Publicly Available Date Mar 29, 2024
Journal Child: Care, Health and Development
Print ISSN 0305-1862
Electronic ISSN 1365-2214
Publisher Wiley
Peer Reviewed Peer Reviewed
Volume 43
Issue 5
Pages 627-644
DOI https://doi.org/10.1111/cch.12461
Keywords decision-making; life-limiting illness; systematic review
Public URL https://nottingham-repository.worktribe.com/output/966889
Publisher URL http://onlinelibrary.wiley.com/doi/10.1111/cch.12461/abstract
Additional Information This is the peer reviewed version of the following article: 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, which has been published in final form at http://dx.doi.org/10.1111/cch.12461. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.

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