How risk influences care decisions for adults with disorders of consciousness
What is the Perceived Role of Risk in the Healthcare Received by People in Disorders of Consciousness (DOC)?
This project sees how families, clinicians, and caregivers think about and manage risk when making care decisions for adults with disorders of consciousness.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 40 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | University of Nottingham Academic / other |
| Locations | 2 sites (London, London and 1 other locations) |
| Trial ID | NCT06647433 on ClinicalTrials.gov |
What this trial studies
This critical ethnography follows adults with a confirmed disorder of consciousness, their family consultees, and healthcare teams over time to document decision-making about risk. Researchers use a prospective longitudinal case study design with direct observation, field interviews, and video reflexive ethnography to capture real-world interactions and reflections. Data collection is conducted at the Royal Hospital for Neurodisability and the University of Nottingham and focuses on decisions made on behalf of patients. Qualitative analysis will identify themes and patterns in how risk is perceived and acted upon in DOC care.
Who should consider this trial
Good fit: Adults (18+) with a confirmed disorder of consciousness who have an available family member able to act as a consultee, along with family members and healthcare workers involved in decision making, are the intended participants.
Not a fit: People without a confirmed DOC diagnosis, those appearing to be emerging from DOC, clinically unstable patients approaching end of life, and minors are unlikely to benefit from or be eligible for participation.
Why it matters
Potential benefit: If successful, the findings could help families and clinicians make clearer, safer, and more person-centered decisions for adults with disorders of consciousness.
How similar studies have performed: Ethnographic and qualitative methods have successfully clarified decision-making in other clinical areas, but applying video reflexive ethnography to risk decisions in DOC is relatively novel.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * People in a DOC: * Working diagnosis of being in a DOC. * Have an appropriate family member able to act as a consultee. * Over 18 years of age. Family members and healthcare workers: * conversational English. * able to give consent. * over 18 years of age. * Involved in decision making on behalf of a person in a DOC Exclusion Criteria: Person in a Disorder of Consciousness * Not in a DOC, diagnosis uncertain, or appears to be emerging. * Clinically unstable or approaching the end of their life.
Where this trial is running
London, London and 1 other locations
- Royal Hospital for Neurodisability — London, London, United Kingdom (Recruiting)
- University of Nottingham — Nottingham, United Kingdom (Not_yet_recruiting)
Study contacts
- Study coordinator: Teresa Clark, PhD Candidate UON
- Email: teresa.clark@nottingham.ac.uk
- Phone: 800-555-5555
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.