Qualitative Study With Focus Groups of People Living With ANCA-associated Vasculitis (AAV) and Clinicians, to Explore Different Perspectives on Shared Decision-making in AAV.
This research is looking at how people living with a rare condition called ANCA-associated vasculitis (AAV) and their doctors, nurses, and other healthcare professionals can make decisions about treatment and care together. This is called 'shared decision-making'. The study will gather ideas and experiences from both patients and healthcare staff through group discussions. The main goal is to find out what's important to everyone involved, so that future tools and methods for making decisions can be as helpful and easy to use as possible. This will help make sure patients feel more involved and confident in their care choices.
At a glance
What is this study about?
Imagine you're facing important choices about your health. Wouldn't it be great to talk through all the options with your doctor or nurse, making a decision together that feels right for you? This is what 'shared decision-making' is all about – it means you and your healthcare team work together as partners to choose the best path for your treatment and care.
This particular study focuses on people living with a rare condition called ANCA-associated vasculitis, or AAV for short. AAV is an illness that can affect different parts of the body, and people often need to see various specialists. Making decisions about long-term care can be complex. National guidelines, like those from NICE, strongly recommend shared decision-making in all healthcare. However, for AAV, it's not yet happening consistently across the board.
That's why this research is so important. It wants to hear directly from people with AAV and the healthcare professionals who look after them. By bringing these groups together in focused discussions, the study hopes to understand everyone's thoughts, experiences, and what they believe is needed to make shared decision-making work really well. The insights gained will then be used to create helpful resources and tools that can be used in clinics, empowering patients to be more involved and confident in their healthcare choices.
Key takeaways
- This study explores how patients with AAV and healthcare teams can make treatment decisions together.
- It aims to gather ideas from patients and healthcare professionals through group discussions.
- The goal is to develop better tools and ways to support shared decision-making in AAV care.
- Participation involves taking part in one discussion group; no medicines or medical procedures are involved.
- This research could help improve future support for AAV patients in making healthcare choices.
Who may be eligible?
This study is looking for two main groups of people to take part: those living with ANCA-associated vasculitis (AAV) and healthcare professionals who work with AAV patients.
If you have AAV, you might be able to join if you are aged 18 or over, have been diagnosed with AAV, and live in the UK or Ireland. You'll also need to be able to understand and speak English well enough to take part in group discussions and read the study information. You won't be able to join if you don't have AAV, are under 18, or live outside the UK or Ireland.
If you are a healthcare professional, you could be a doctor, nurse, physiotherapist, or another specialist who looks after people with AAV. You must work in the UK or Ireland. You won't be able to join if you don't work with AAV patients or work outside these countries.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Are you 18 years old or older?
- Have you been diagnosed with ANCA-associated vasculitis (AAV)?
- Do you live in the UK or Ireland?
- Can you understand and speak English well enough for a group discussion?
- Are you a healthcare professional who works with AAV patients (if applicable)?
What does participation involve?
If you decide to take part, you will be invited to join a 'focus group'. This is a group discussion, like a friendly chat, with other people who are either living with AAV (if you're a patient) or healthcare professionals (if you're a staff member). These discussions are designed to gather your thoughts and experiences on shared decision-making. There will be no medication or tests involved. The exact number of groups and how long each one lasts will be explained to you, but typically, they involve one session that lasts a couple of hours. Your overall involvement in the study will be limited to this one discussion.
Potential risks and benefits
Locations (1)
- Focus groups will be held online, no facility will be usedVerified postcodeBristol, United Kingdom
Common questions
What is ANCA-associated vasculitis (AAV)?
AAV is a rare disease where the body's immune system mistakenly attacks small blood vessels, causing inflammation. It can affect many different organs.
What does 'shared decision-making' mean?
It's when you and your healthcare team (like your doctor or nurse) work together to choose your treatment and care plans, making sure your preferences and values are considered.
What is a 'focus group'?
It's a small group discussion where people with similar experiences or backgrounds come together to talk about a specific topic, guided by a researcher.
Will I have to take any new medicines?
No, this study does not involve any new medicines, tests, or changes to your current treatment. It's purely about gathering opinions and experiences.
How will my privacy be protected?
The researchers will keep your personal information confidential, and your identity will not be shared when the study results are reported.
How to find out more
Professor Joanna C Robson, PhD FRCP
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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