Parents' experience of decision making in PICU
Research type
Research Study
Full title
What factors are important to parents when discussing withdrawing of paediatric intensive care interventions in children with cancer?
IRAS ID
193205
Contact name
Anami Gour
Contact email
Sponsor organisation
University of London and St George's University Hospitals NHS Foundation Trust
Duration of Study in the UK
0 years, 8 months, 0 days
Research summary
Children with cancer continue to die in the paediatric intensive care unit (PICU), either from side effects of anti-cancer treatment or due to the presence of disease that cannot be cured. The role of PICU is to provide medical intensive care support to children with reversible medical conditions. When a child’s condition becomes irreversible and ongoing intensive care is considered not in their best interests, the challenge for professionals is communicating this with the child’s parents. Studies suggest that up to 75% of all PICU deaths occur after a decision to withdraw treatment. The literature suggests that factors that may influence parental decision making include perceived suffering, financial burden and faith. However, no published studies have been conducted in the UK where the model and philosophy of care may be different.
This qualitative study aims to address this gap in the literature by gaining parents lived experiences of discussing and making decisions to with-hold or withdraw life sustaining treatment for their child with cancer in a paediatric intensive care unit in the UK.
Parents whose child had cancer and died after withdrawal of treatment in the PICU at St. Georges Hospital between 2010-2015 will be eligible to participate in this study. This study will use audio recorded unstructured interviews which will take approximately one hour to complete.
REC name
London - Surrey Borders Research Ethics Committee
REC reference
16/LO/0401
Date of REC Opinion
6 Apr 2016
REC opinion
Further Information Favourable Opinion