What is the perceived role of risk in DOC healthcare
Research type
Research Study
Full title
What is the perceived role of risk in the healthcare received by people in disorders of consciousness?
IRAS ID
343286
Contact name
Roger Kerry
Contact email
Sponsor organisation
University of Nottingham
Clinicaltrials.gov Identifier
pending , Clinical.Trial.gov
Duration of Study in the UK
1 years, 11 months, 30 days
Research summary
Risk is a normal, emancipatory, and healthy aspect of life. We all take risks as part of personal identity, hope, and decision-making. Risk-taking (evaluating risks, how we take risks, and what we individually see as an acceptable risk) is part of who we all are as humans.
Risk is inherent in clinical practice. All clinical decisions present possible risks and benefits. In most scenarios, decisions include an expert clinician who interprets the available evidence and applies it to the person and their unique clinical scenario and a patient, who evaluates what the potential risks and benefits could mean for them. This individualised risk-taking process helps ensure that the person receives the best possible healthcare.
Those in a Disorder of Consciousness (DOC) have a severe brain injury which has left them unable to make decisions about their own healthcare. All decisions are made by healthcare workers and family through a ‘best interests’ process, which aims to approximate what the person would want (if they could tell us). To make decisions, family members and healthcare workers evaluate possible risks and benefits on their behalf and determine what is an acceptable risk. This is a distinctly different decisional process from risk taking, known as ‘risk-making’. How risk-making decisions are constructed and how they impact DOC healthcare is poorly understood.
This research project will explore how risk-making decisions are made on behalf of the person in DOC. Capturing and sharing the expertise and experiences of DOC stakeholders (healthcare workers, healthcare managers, and families) will help improve our knowledge about DOC as a condition and the possible impact of decision-making on the person living in DOC. This will help guide healthcare workers and family members to make the best possible choices for the individual person in a DOC.This ethnographic research will use a case study methodology to follow 4 – 5 people in a DOC, observing them and those around them (healthcare workers and family members) to understand how decision making occurs. Video reflexive ethnography will be used during identified risk related decision points within the person in DOCs healthcare (i.e., during a family meeting about discharge home). Decision-making processes will be filmed (with informed consent), edited, and then replayed to those in the film during a guided reflexive interview (or group session if more appropriate). The reflexive sessions will focus on surfacing and co-producing an understanding of what influenced decision making. These reflexive sessions will be filmed and transcribed for analysis.
REC name
London - Brighton & Sussex Research Ethics Committee
REC reference
24/LO/0893
Date of REC Opinion
6 Feb 2025
REC opinion
Further Information Favourable Opinion