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.

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: Apr 13, 2019
• 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.
• Contract Date: May 2, 2017