What is the Perceived Role of Risk in DOC Healthcare.
This research aims to understand how healthcare decisions are made for individuals living with a severe brain injury, who are in a 'disorder of consciousness' (often called a coma, vegetative state, or minimally conscious state). Researchers will observe healthcare staff and family members over time, looking closely at how they discuss and manage potential risks when making choices about care. The study involves watching interactions, conducting interviews, and reviewing videos to get a full picture of this sensitive decision-making process. The goal is to gain insights into how risk is understood and acted upon when caring for someone unable to make decisions for themselves.
At a glance
What is this study about?
This study is about understanding how healthcare decisions are made for people who have had a severe brain injury and are in a ‘disorder of consciousness’ (DOC). This means they might be in a coma, a vegetative state, or a minimally conscious state, where they can't communicate or make choices for themselves.
The researchers want to see how doctors, nurses, and other healthcare staff, along with family members, talk about and decide on the best care. A big part of this involves looking at how 'risk' is considered. For example, what risks are involved with different treatments, or what risks are there if certain treatments aren't given? The study will observe these conversations and decisions as they happen in real-life hospital settings.
The main aim is to get a really detailed picture of this complex process. By watching how decisions unfold, interviewing those involved, and even looking at video recordings of discussions (with full consent), the researchers hope to learn more about the challenges and sensitive considerations involved in caring for someone with a severe brain injury. This understanding could help improve how these important decisions are made in the future, making sure patients receive the best possible care.
Key takeaways
- A study observing how key decisions are made for patients with severe brain injuries.
- Specifically looking at patients in a 'disorder of consciousness' (like a coma or vegetative state).
- Involves observing healthcare staff and family members.
- Aims to understand how 'risk' influences care decisions.
- Could help improve future care for these vulnerable patients.
- Participation involves observation and interviews, with strict confidentiality.
Who may be eligible?
This study is looking for two main groups of people to take part.
Firstly, they are looking for **people with a disorder of consciousness (DOC)**. To be included, these individuals must have a current diagnosis of DOC, be over 18 years old, and have a family member who can represent their best interests in the study. They cannot be included if their diagnosis is unclear, if they seem to be getting better quickly, or if they are very unwell and nearing the end of their life.
Secondly, the study needs **family members and healthcare workers** who are involved in making decisions for someone with a DOC. These participants must be over 18, able to speak and understand English well enough for conversations, and willing to give their consent to take part.
- Is the person I'm considering for the study currently diagnosed with a 'disorder of consciousness'?
- Are they 18 years old or older?
- Am I a main family member or a healthcare worker involved in their care?
- Can I speak and understand English well enough to have conversations?
- Is the patient medically stable and not thought to be very close to the end of their life?
This is a guide only — the research team will confirm whether you can take part.
What does participation involve?
If you or your loved one takes part in this study, it will involve observations in a hospital or care setting. Researchers will watch how healthcare staff and family members interact and make decisions about the person with a disorder of consciousness. This might also include interviews with family members and healthcare workers where they will be asked about their experiences and views on decision-making and risk. In some instances, with full permission, video recordings might be made of these conversations to help the researchers capture more detail. There are no medications involved and a specific total duration of participation is not set, as it is a 'longitudinal' study, meaning observations will happen over a period of time to see how things develop.
Potential risks and benefits
Locations (2)
- Royal Hospital for NeurodisabilityLondon, United Kingdom· Recruiting
- University of NottinghamNottingham, United Kingdom· Not yet recruiting
Common questions
What is a 'disorder of consciousness'?
It's a serious condition after a severe brain injury, where someone might be in a coma, a vegetative state, or a minimally conscious state. They struggle to respond or communicate normally.
What does the study hope to achieve?
It aims to understand how healthcare teams and families make important decisions for people in a disorder of consciousness, especially considering the risks involved. This could help improve future care.
Who can take part?
People with a confirmed disorder of consciousness (over 18) and their main family members, along with healthcare workers involved in their care.
What will I have to do if I, or my family member, join?
If you're a family member or staff, it might involve being observed during care discussions, giving interviews, or possibly being videoed (with your permission). For the patient, it's about observing their care journey.
Will my involvement be kept private?
Yes, all information gathered will be treated with strict confidentiality and your identity will be protected.
How to find out more
Teresa Clark, PhD Candidate UON
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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