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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.
- pediatrics
- decision making
- palliative care
- paediatric palliative care
- advance care planning
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Footnotes
Contributors The study was conceptualised by SM, AP, JC and JD, informed and guided by Patient and Public Involvement, with specific guidance and advice provided by EH. JS conducted the interviews. AP managed the conduct of the study. SM, JLS and AP drafted the article with contributions from JC and JD. EH acted as PPI coauthor and reviewed the article to ensure relevance to the family situation. JC and JD reviewed the article for intellectual content and edited the final version. All authors reviewed, edited and agreed this version.
Funding This work was supported by Birmingham Children’s Hospital Research Foundation, grant number: BCHRF-369.
Competing interests None declared.
Ethics approval Ethical approval was granted on 5 January 2016 by the East Midlands Research Ethics Committee IRAS No: 184171 REC 15/EM/0539. Amendment 1.0.1 was approved on 31 May 2016.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement The research protocol is available as a supplementary file (supplementary file 1). The data that support the findings of this study are not publicly available due to their containing information that could compromise the privacy of the research participant.
Patient consent for publication Not required.