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 ISSN 2044-6055.

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

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 Science, Engineering and Medicine > 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:	Date Event May 2019 Published 3 April 2019 Accepted
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 (Creative Commons)
Date of first compliant deposit:	22 November 2019
Date of first compliant Open Access:	22 November 2019
RIOXX Funder/Project Grant:	Project/Grant ID RIOXX Funder Name Funder ID BCHRF-369 Birmingham 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

Downloads