Decision-making and future planning for children with life-limiting conditions: a qualitative systematic review and thematic synthesis
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...
| Main Authors: | , , , , |
|---|---|
| Format: | Article |
| Published: |
Wiley
2017
|
| Subjects: | |
| Online Access: | https://eprints.nottingham.ac.uk/42454/ |
| _version_ | 1848796491442814976 |
|---|---|
| author | Popejoy, Emma Pollock, Kristian Almack, Kathryn Manning, Joseph C. Johnston, B. |
| author_facet | Popejoy, Emma Pollock, Kristian Almack, Kathryn Manning, Joseph C. Johnston, B. |
| author_sort | Popejoy, Emma |
| building | Nottingham Research Data Repository |
| collection | Online Access |
| description | 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. |
| first_indexed | 2025-11-14T19:48:50Z |
| format | Article |
| id | nottingham-42454 |
| institution | University of Nottingham Malaysia Campus |
| institution_category | Local University |
| last_indexed | 2025-11-14T19:48:50Z |
| publishDate | 2017 |
| publisher | Wiley |
| recordtype | eprints |
| repository_type | Digital Repository |
| spelling | nottingham-424542020-05-04T19:55:53Z https://eprints.nottingham.ac.uk/42454/ 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. 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. Wiley 2017-09 Article PeerReviewed Popejoy, Emma, Pollock, Kristian, Almack, Kathryn, Manning, Joseph 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, 43 (5). pp. 627-644. ISSN 1365-2214 decision-making; life-limiting illness; systematic review http://onlinelibrary.wiley.com/doi/10.1111/cch.12461/abstract doi:10.1111/cch.12461 doi:10.1111/cch.12461 |
| spellingShingle | decision-making; life-limiting illness; systematic review Popejoy, Emma Pollock, Kristian Almack, Kathryn Manning, Joseph C. Johnston, B. Decision-making and future planning for children with life-limiting conditions: a qualitative systematic review and thematic synthesis |
| title | Decision-making and future planning for children with life-limiting conditions: a qualitative systematic review and thematic synthesis |
| title_full | Decision-making and future planning for children with life-limiting conditions: a qualitative systematic review and thematic synthesis |
| title_fullStr | Decision-making and future planning for children with life-limiting conditions: a qualitative systematic review and thematic synthesis |
| title_full_unstemmed | Decision-making and future planning for children with life-limiting conditions: a qualitative systematic review and thematic synthesis |
| title_short | Decision-making and future planning for children with life-limiting conditions: a qualitative systematic review and thematic synthesis |
| title_sort | decision-making and future planning for children with life-limiting conditions: a qualitative systematic review and thematic synthesis |
| topic | decision-making; life-limiting illness; systematic review |
| url | https://eprints.nottingham.ac.uk/42454/ https://eprints.nottingham.ac.uk/42454/ https://eprints.nottingham.ac.uk/42454/ |