Intestinal Failure in Neonates. Investigating Therapy and Ethics
Research type
Research Study
Full title
Infants with Intestinal Failure. Establishing an ethical framework for an emerging therapy.
IRAS ID
290552
Contact name
Pamela Cairns
Contact email
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Intestinal failure (IF) is a devastating condition where the gut is either dysfunctional or too short to absorb enough nutrients for survival and normal growth. Infants with severe IF face potentially life-long parenteral intravenous nutrition (PN), with concomitant risks of infection, liver failure and death. A proportion may eventually undergo an intestinal transplant. Some of these children have other medical issues. As this long-term treatment is felt to be burdensome it may be appropriate to manage these infants palliatively. There is wide variation in approach between different clinicians. The overall aim of this project to develop a practical ethical framework to aid decision-making.
This is a qualitative study which aims to gain a rich understanding of the lived experience of those affected either as health professionals, families or patients. It will explore the values and beliefs that underlie decision-making.
This will enhance the ability of the overall project to develop realistic and relevant recommendations that can be applied in practice.
It will comprise qualitative empirical research consisting of in-depth interviews with clinicians (neonatologists,paediatric gastroenterologists and surgeons, parents of children with intestinal failure, bereaved parents and semi-structured interviews with older children.
The adult interviews will take place electronically by Microsoft Teams. The children will be interviewed face to face when conducting research face to face is once again viable.
Interview data will be analysed using Thematic analysis as described by Braun and Clarke (2006). Each participant group (health professionals, parents etc) will be coded separately and compared. Themes will be developed by exploring links and relationships between codes. These will be reviewed and analysed using mind maps to demonstrate linking codes and themes.
This study will take place over two years across three NHS Trusts in Bristol and London.
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
21/WM/0094
Date of REC Opinion
4 Jun 2021
REC opinion
Further Information Favourable Opinion