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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
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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
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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
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 | ||||||
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| Subjects: | B Philosophy. Psychology. Religion > BF Psychology H Social Sciences > HQ The family. Marriage. Woman R Medicine > RC Internal medicine R Medicine > RJ Pediatrics |
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| 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: |
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| 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: |
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