A pleural effusion is a build-up of fluid around the lung. In the UK, about 250,000 people develop a pleural effusion each year, usually caused by advanced cancer or organ failure. These patients feel breathless and can’t do the things they want to. Draining the fluid improves breathlessness and quality of life. This study aims to help more patients manage this drainage themselves, if they want to
Background
A pleural effusion is a build-up of fluid around the lung. In the UK, about quarter of a million people develop a pleural effusion each year, usually caused by advanced cancer or heart, kidney, or liver failure. People with a pleural effusion feel breathless and can’t do the things they want to. Draining the fluid improves breathlessness and quality of life. This can be done by inserting a semi-permanent tube called an indwelling pleural catheter. This is drained at home about three times a week, usually by a community nurse, but can be done by the patient or family/unpaid carer – this is called self-management. Self-management gives patients freedom to drain their catheter when needed, without waiting in for a nurse, and reducing community nursing services’ workloads. Despite these benefits, not all patients get the opportunity to self-manage.
Project Aims
Funded by the NIHR Research for Patient Benefit programme, this study aims to help more patients self-manage their indwelling pleural catheter if they want to by co-developing an intervention (with patients, carers and healthcare professionals) to support self-management.
Project Activity
Stage 1: We will talk to patients with indwelling pleural catheters as well as their families/carers to find out their views on self-management and what stops people who could self-manage from doing so. We know that patients with an indwelling pleural catheter can be frail. Often their families/carers are already doing a lot to support them. We will ask what might help them to self-manage if they would like to.
Stage 2: We will talk to healthcare professionals looking after patients with indwelling pleural catheters to understand what they think about self-management. This will include community nurses and the hospital teams who put indwelling pleural catheters in.
Stage 3: Along with our patients, their families/unpaid carers and healthcare professionals, we will hold workshops to design an intervention that will help people to self-manage indwelling pleural catheters. We don’t know what this intervention will look like yet. From talking to patients and families who already self-manage, we have found they like to learn from a demonstration on their own indwelling pleural catheter followed by supervised self-management until they feel confident. Therefore, our intervention may include training sessions for healthcare professionals on how to teach self-management.
Anticipated or actual outputs
A co-designed intervention to help people to self-manage their indwelling pleural catheter if they want to. The intervention may include training sessions for healthcare professionals on how to teach self-management.
Who is involved?
Dr Adam Peel - Joint PI - Norfolk & Norwich University Hospital
Prof Morag Farquhar - Joint PI - University of East Anglia
Prof Eleanor Mishra - Norfolk & Norwich University Hospital
Dr Geoffrey Brandon - PPI Representative
Contact
M.Farquhar@uea.ac.uk - PI
