Infants with intestinal failure. Establishing an ethical framework for an emerging therapy (360G-Wellcome-208116_Z_17_Z)

This project will establish a practical ethical framework for decision-making in neonatal intestinal failure (IF). It aims to identify circumstances in which active therapy might be ethically obligatory, circumstances in which it may only be ethically appropriate to recommend palliative care, and situations in which active treatment is ethically acceptable but not obligatory This will be achieved by combining empirical research with normative analysis and reasoning using a four stage process as described below: A critical interpretive review of empirical and theoretical literature will be carried out in order to acquire a thorough understanding of the clinical and ethical factors likely to be relevant. Qualitative methodology (semi-structured interviews with thematic analysis) will then be employed to develop a contextualised understanding of the problem as experienced and understood by a range of stakeholders including a healthcare professionals from different subspecialties, families and children. Coherence will then be sought between the empirical data and normative theory using reflexive balancing to reach defensible normative conclusions. Finally a draft guidance framework will be developed through a structured online consensus method (DELPHI) in order to gain consensus amongst professionals to develop a usable ethical framework for decision making in neonatal IF.