Keywords: TBI, PDoC, Coma, Vegetative, Consciousness, Family
Open to: Adult men with a family member who has a diagnosed prolonged disorder of consciousness within the UK
Deadline: 2nd January 2024
How to apply / ask questions: Please contact Mr. Connor Watkins (Lead Researcher) at: email@example.com.
Further Information: Patient Information Sheet
Research participation requests are sent to the Stroke Association from external research institutions (e.g. universities and hospitals).
We conduct checks on these before promoting but are not involved in their running. This means we cannot comment on trials and have no affiliation with them.
A Prolonged Disorder of Consciousness (PDoC) occurs when a person’s awareness and responsiveness are significantly impaired for an extended period, such as being in a vegetative or minimally conscious state for more than 4 weeks following a stroke.
We are seeking male family members/close friends of individuals who have experienced a Prolonged Disorder of Consciousness (PDoC) in the UK, aiming to gain a deeper understanding of this experience and enhance the support available.
What is the opportunity about?
The aim of this study is to investigate the experiences of male family members of people who have a disorder of consciousness within the UK, to better understand this experience, which may help us consider what support may most help families in this situation.
What will it Involve?
If you would like to find out more, your contact details will be given to the researcher for this study, Connor Watkins. You can also make contact yourself using the contact details at the end of this information sheet. You will then be contacted by him to discuss the research and answer any questions. If you wish to continue, you will be asked to read and sign a consent form and then he will arrange a time with you to conduct an interview.
The interview will involve answering questions and discussing your experience of what it is like having someone close to you with a prolonged disorder of consciousness.
The interview will either take place face to face in a quiet room or be conducted online in a private space. We will aim to conduct the interview at a time and place that is most convenient to you. If face to face, this could be conducted in a private place such as a room at Staffordshire University, a NHS site, a private healthcare site or your home.
If conducted online, this would be done by online video call via Microsoft Teams and it will need both the researcher and participant to be in a quiet uninterrupted environment such as in the comfort of your own home. You would also need to have access to a device that allows you to do online video calls. The interview should last between one to one and a half hours, depending on how much you have to say.
All interviews will be video recorded and some notes may be taken during the course of the interview. This will only be done with your consent and the researcher will indicate the start and end of the recording.
Once the interview is over and it has been recorded, the audio will then be transcribed by the researcher Connor Watkins and analysed in an attempt to make sense of your personal lived experience.
Who can take part?
You are eligible to take part if you meet the criteria outlined below:
It is important to note that in line with the Royal College of Physicians (2020) prolonged disorders of consciousness guidelines, we define a family member as
“anyone who has a sufficiently close relationship with the person, to be actively concerned with their management and wellbeing.”
Therefore you do not need to be a family member by legal ties or blood relations.
What will you get from taking part?
A potential benefit of the research is that you have the chance to feedback on your experiences, which some people can find helpful.
In the longer-term, the findings of this study has the potential to add to our understanding of what it is like to have a family member with a prolonged disorder of consciousness within the UK, with the hope that this may then help inform what support services offer to families.
How Can I Take Part?
If you are interested in taking part or require more information,
please contact Mr Connor Watkins (Lead Researcher):
Information on taking part in research
Research participation helps research teams to test new ideas and approaches by sharing information or trying new approaches in clinical trials.
Taking part in clinical trials can support research to:
- Stop strokes from happening.
- Treat strokes.
- Support people to rebuild their lives.
By taking part in research, you can help us to learn more about stroke and make a difference in the lives of future stroke survivors.
We have produced the Clinical Trials and Stroke booklet to explain more about clinical trials and answer questions you might have about taking part. The booklet was produced with the NIHR Clinical Research Network.
Information on Research Involvement
Research Involvement is a different way of contributing to research that involves collaborating with researchers to design decisions about how research is shaped and conducted.
You do not need any research knowledge to do this, your lived experience is what would otherwise be missing. Involvement is about contributing this to shape projects in ways that create most potential to benefit people affected.