Indwelling Pleural Catheters: a Self-management Intervention
Many people with fluid around their lungs (called a pleural effusion) use a special tube called an Indwelling Pleural Catheter (IPC) to drain the fluid at home. This often helps them feel less breathless. Usually, a community nurse drains the IPC, but some people can learn to drain it themselves, or with help from family. This is called self-management and can give people more freedom. This study wants to learn how to make self-management easier and more common for those who want it. We'll talk to patients, their families, and nurses to understand what helps or hinders them. Then, we'll design a new way to support people to manage their IPC at home.
At a glance
What is this study about?
When fluid builds up around your lungs, it's called a pleural effusion. This can make you feel very breathless and tired. Many people with this problem have a special tube called an Indwelling Pleural Catheter (IPC) fitted. This tube helps to drain the fluid, which can make a big difference to how you feel and your quality of life. The fluid is usually drained a few times a week.
Often, a community nurse comes to your home to drain the IPC. However, some people, with the help of family, friends, or carers, can learn to drain it themselves. This is called 'self-management'. The idea is that if you can drain your own IPC, you have more control and don't have to wait for a nurse visit. This could mean you can drain it when you most need to, making life a bit easier and giving you more independence.
This study, which grew from conversations with patients, wants to understand how we can help more people safely and confidently manage their IPC at home if they choose to. We'll speak with patients, their families, and the healthcare team, including community nurses, to understand everyone's experiences and ideas. Ultimately, we hope to create new ways to support and teach people who want to self-manage their IPC, making this option available to more of those who could benefit.
Key takeaways
- The study helps people manage fluid around their lungs.
- It focuses on self-managing a special drain (IPC) at home.
- Aims to give patients more control and freedom.
- Will collect ideas from patients, families, and nurses.
- The goal is to design better support for home IPC care.
- No medical treatments, just sharing experiences.
Who may be eligible?
If you are an adult (over 18) and currently have, or have had, an IPC, you might be able to take part in the first stage of this study. Your family members or unpaid carers are also welcome to join if you have an IPC.
We are also looking for healthcare professionals, like community nurses who have worked with IPCs recently, and hospital staff who discuss IPC care with patients, to share their thoughts.
Unfortunately, if you have a very short life expectancy (less than 6 weeks) or are unable to give your informed consent due to health reasons, you wouldn't be able to participate. Also, if you're a healthcare professional, there are no specific reasons that would stop you from taking part.
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?
- Do you currently have or have you had an IPC?
- Are you able to clearly understand and agree to take part?
- Are you a family member or unpaid carer of someone with an IPC?
What does participation involve?
This study involves talking about your experiences and ideas. There are three stages, and you might take part in one or more. In the first stage, we'll have a chat with patients with IPCs and their family/carers. This would be a private interview where you can share your views on managing your IPC. In the second stage, we'll speak with healthcare professionals, either in interviews or group discussions.
In the final stage, we'll bring together patients, families, and healthcare professionals in workshops to design how best to help people self-manage their IPCs. These conversations will be recorded (with your permission) and then written down so the research team can understand everyone's thoughts. The total time you spend will depend on which stage(s) you participate in; there are no medications, assessments, or long-term follow-ups involved.
Potential risks and benefits
Locations (1)
- Norfolk and Norwich University Hospitals NHS TrustVerified postcodeNorwich, United Kingdom
Common questions
What is an IPC?
An IPC is a special tube placed to drain fluid that builds up around your lungs, which makes you feel breathless.
What does 'self-management' mean?
It means learning to drain your IPC yourself, or with help from a family member or friend, instead of always relying on a nurse.
Why is this study important?
It aims to find better ways to help people who want to manage their IPC at home, giving them more control and freedom.
Will I have to do anything medical?
No, this study only involves talking about your experiences and ideas; there are no medical procedures.
Who designed this study?
This study was designed with input from patients, their families, and community nurses, to make sure it's relevant to those it aims to help.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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