Understanding male family experiences of PDoC (Version 1)
Research type
Research Study
Full title
Male experiences as a family member of a person in a prolonged disorder of consciousness: A qualitative study.
IRAS ID
321566
Contact name
Connor Watkins
Contact email
Sponsor organisation
Staffordshire University
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
A disorder of consciousness is a state where consciousness has been affected by damage to the brain. This is usually short term, however when unconsciousness lasts for more than four weeks, the person is described as having a prolonged disorder of consciousness (PDoC).
In the first few months, some have the potential for recovery of a meaningful quality of life, however for those in a PDoC longer, they will inevitably have permanent physical and cognitive deficits (Katz et al., 2009; Laureys et al., 2010; Royal College of Physicians, 2020).
People in a PDoC present complex emotional and social challenges to family members, with family members experiencing a complicated and conflicting emotional journey processing the ambiguous situation in which the person lacks consciousness but is still alive (Hamama-Raz et al., 2013).
The Royal College of Physicians (2020) highlight the need to provide consistent support for family members, from a professional with an understanding on PDoC. However, the scientific literature looking at family experiences of PDoC is limited. Soeterik et al. (2018) explored female family experiences in the UK, which concluded more research was needed from a systemic approach, with one recommendation being to explore whether there findings are transferable to the experience of males.
Therefore this research aims to build the literature around PDoC, by exploring the experience of male family members in the UK, with the hope this will improve our understanding and help inform how families are best supported.
This study will recruit male participants either via two agreed NHS sites or via a research recruitment advertisement with the UK charity Headway. Semi-structured interviews will be conducted, which will involve the participant discussing their experience of having someone close to them in a PDoC. The interviews will then be transcribed and analysed using interpretative phenomenological analysis.
REC name
Yorkshire & The Humber - Leeds West Research Ethics Committee
REC reference
22/YH/0276
Date of REC Opinion
15 Dec 2022
REC opinion
Favourable Opinion