Family experience of emergence from PDOC
Research type
Research Study
Full title
The experience of families of people emerged from prolonged disorders of consciousness
IRAS ID
353502
Contact name
Lloyd Bradley
Contact email
Sponsor organisation
The Royal Hospital for Neuro-disability
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
People who suffer severe brain injuries from various causes may experience problems with consciousness (awareness). If this continues for several months, it is called a “prolonged disorder of consciousness” (PDOC).
A person is considered to have recovered from PDOC when they:
Can communicate in a meaningful way, or
Can use two different objects functionally.
Brain injuries that cause consciousness disorders usually also affect communication, thinking, movement, and sensory abilities. It is rare for someone to have only a consciousness impairment without other significant difficulties.
While studies have explored the experiences of families of people still in PDOC, little is known about the challenges faced by individuals and their families after regaining consciousness. We also don’t know what families expect in terms of recovery and long-term outcomes.
To understand this better, we will interview family members of people who recover from PDOC during inpatient rehabilitation. We will follow up with them at 6 months and again a year later. Our goal is to recruit 12 family members (of 12 different patients) over a year.
Working with the University of Sussex, we will analyse these interviews to see how family experiences and expectations change over time. This will help predict future care and support needs and improve early discussions with families about recovery expectations.
REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
25/NW/0148
Date of REC Opinion
20 Jun 2025
REC opinion
Further Information Favourable Opinion