Skip to content Skip to navigation
University of Warwick
  • Study
  • |
  • Research
  • |
  • Business
  • |
  • Alumni
  • |
  • News
  • |
  • About

University of Warwick
Publications service & WRAP

Highlight your research

  • WRAP
    • Home
    • Search WRAP
    • Browse by Warwick Author
    • Browse WRAP by Year
    • Browse WRAP by Subject
    • Browse WRAP by Department
    • Browse WRAP by Funder
    • Browse Theses by Department
  • Publications Service
    • Home
    • Search Publications Service
    • Browse by Warwick Author
    • Browse Publications service by Year
    • Browse Publications service by Subject
    • Browse Publications service by Department
    • Browse Publications service by Funder
  • Help & Advice
University of Warwick

The Library

  • Login
  • Admin

Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit : a qualitative interview study

Tools
- Tools
+ Tools

Mitchell, Sarah J., Spry, Jenna L, Hill, Emma, Coad, Jane, Dale, Jeremy and Plunkett, Adrian (2019) Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit : a qualitative interview study. BMJ Open, 9 (5). e028548. doi:10.1136/bmjopen-2018-028548

[img]
Preview
PDF
WRAP-parental-experiences-end-life-care-children-paediatric-study-Dale-2019.pdf - Published Version - Requires a PDF viewer.
Available under License Creative Commons: Attribution-Noncommercial 4.0.

Download (357Kb) | Preview
Official URL: http://dx.doi.org/10.1136/bmjopen-2018-028548

Request Changes to record.

Abstract

Objectives To provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU).

Design An in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts.

Setting A PICU in a large National Health Service (NHS) tertiary children’s hospital in the West Midlands, UK.

Participants 17 parents of 11 children who had died in the PICU.

Results Five interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a ‘place of acceptance’.(5) Families perceive benefits to receiving end of life care for their child in a PICU.

Conclusions and implications The death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care

Item Type: Journal Article
Subjects: B Philosophy. Psychology. Religion > BF Psychology
H Social Sciences > HQ The family. Marriage. Woman
R Medicine > RC Internal medicine
R Medicine > RJ Pediatrics
Divisions: Faculty of Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH): Terminal care -- Great Britain, Terminally ill -- Psychological aspects, Decision making, Parents of terminally ill children , Parent and child , Critical care medicine -- Psychological aspects
Journal or Publication Title: BMJ Open
Publisher: BMJ
ISSN: 2044-6055
Official Date: May 2019
Dates:
DateEvent
May 2019Published
3 April 2019Accepted
Volume: 9
Number: 5
Article Number: e028548
DOI: 10.1136/bmjopen-2018-028548
Status: Peer Reviewed
Publication Status: Published
Access rights to Published version: Open Access
RIOXX Funder/Project Grant:
Project/Grant IDRIOXX Funder NameFunder ID
BCHRF-369Birmingham Women’s and Children’s NHS Foundation Trust https://bwc.nhs.uk/

Request changes or add full text files to a record

Repository staff actions (login required)

View Item View Item

Downloads

Downloads per month over past year

View more statistics

twitter

Email us: wrap@warwick.ac.uk
Contact Details
About Us