Advanced Care Planning & Decision Making for EOLC in PICU. Version 1.1
Research type
Research Study
Full title
Advance Care Planning (ACP) and decision making at the end-of-life for children and young people (CYP) with life-limiting conditions (LLC) in the Paediatric Intensive Care Unit (PICU): A qualitative study of the experiences and perceptions of bereaved parents.
IRAS ID
184171
Contact name
Adrian Plunkett
Contact email
Sponsor organisation
Birmingham Children’s Hospital NHS Foundation Trust
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
0 years, 6 months, 1 days
Research summary
Background: The majority of child deaths in the UK occur in children with life limiting conditions (LLC). LLCs are diseases or conditions resulting in reduced life expectancy; many of these children do not live into adulthood. The majority of these deaths occur in hospital, most commonly in the Paediatric (or children’s) Intensive Care Unit (PICU). Birmingham Children’s Hospital (BCH) hosts the largest and busiest PICU in the UK; on average, approximately 70 children die in BCH PICU every year.
Aim: To investigate bereaved parents’ views and experiences of making
decisions and care planning in PICU around the end of their child’s life.Design: Bereaved parents, whose children died on PICU at Birmingham Children's Hospital, will be invited to take part in one to one interviews with a research nurse. The information they share will be audio recorded and then analysed by the study team (2 doctors and the research nurse), to identify prominent and important themes.
Outcomes & Benefits: The study will provide important insights into the experience of parents regarding end of life care decision-making and advance care planning (ACP) in PICU. The study will contribute to the current evidence base in this area, direct future research and inform how healthcare professionals work with families in the future, in order to improve the delivery of care in the future for families.
This study is funded by the Birmingham Children’s Hospital Research Foundation.
REC name
East Midlands - Derby Research Ethics Committee
REC reference
15/EM/0539
Date of REC Opinion
14 Dec 2015
REC opinion
Favourable Opinion