Listening and learning: catheter users explain their needs
First published on 2 October 2006
Updated on 3 March 2014
What did the project achieve?
“Our research aims to improve the care and quality of life of people who need to use a catheter because of poor bladder control,” explains Professor Mandy Fader of University Hospital Southampton. “With input from hundreds of people who use catheters, we have developed a new questionnaire that provides a systematic way to identify the problems people experience, the concerns they have and how their quality of life is affected.”
The new questionnaire will benefit people who use catheters in two important ways, as Professor Fader explains: “The questionnaire will enable doctors and nurses to make sure that people are getting appropriate ongoing care and support, and that they are using, in the best possible way, whichever catheter most closely suits their needs. The questionnaire will also facilitate longer-term improvements in care, by allowing researchers who are investigating new ways of tackling incontinence to evaluate the benefits of these new approaches accurately.”
Improvements in care are badly needed. Loss of bladder control is common and distressing. Catheters can be uncomfortable and burdensome, with long-term use being linked to complications such as leakage, blockage and infections. Professor Fader’s work brings a welcome opportunity to change things for the better.
This research was completed on 30 September 2012
A shocking 70 per cent of people who use catheters over the long term suffer distressing complications.¹,² Many contract infections, which can sometimes become life-threatening.³ Yet the basic design of catheters has hardly changed in 50 years. A lack of data on users' experiences is hindering product development. Researchers aim to fill the information gap, in the hope of improving the lives of catheter users.
What's the problem and who does it affect?
Catheters can make life miserable
Urinary incontinence may be a taboo subject, but it’s actually a very common and distressing problem. It affects more than a quarter of people with physical disabilities, as well as a similar proportion of people over 75 4,5. Many sufferers are forced to rely on catheters to control their bladder.
Long-term catheter use is highly problematic. Catheters are uncomfortable and burdensome. The bags that collect the urine can be heavy, smelly and difficult to disguise under clothing, making many users feel undignified. People with complex disabilities can find things like fiddly outlet taps on the bags too difficult to manage, which increases their dependency on carers.
More than 70 per cent of users suffer complications 1,2 Many contract infections, which can sometimes become life-threatening 3. Up to half find their catheter gets blocked, which can cause painful retention of urine, and emergency visits to a nurse to clear the blockage can be exhausting and traumatic 1. Sadly, incontinence can be a major reason for someone moving to institutionalised care. We desperately need to find better ways to manage incontinence. But a lack of firm data on catheter users’ experiences, and the associated costs, is hampering product development.
What is the project trying to achieve?
Catheter users explain their experiences
The researchers working on this project are conducting some long overdue, systematic research into the use of catheters. They are building a database of detailed information by drawing on the experiences of several hundred catheter users, and their carers, via interviews and questionnaires. Clinicians and product developers will also contribute through focus groups.
Researchers are developing two sophisticated questionnaires. The first, called a ‘needs assessment tool’, will measure users’ needs and abilities. It will cover things like cognitive ability, mobility and manual dexterity, as well as the level of dependency on carers. The second questionnaire will focus on how catheters affect the quality of life of users.
Researchers are also exploring the costs of long-term catheter use – to healthcare and social services, and to users and their carers, as well as any indirect costs resulting, for example, from carers not being able to work.
What are the researchers' credentials?
|Project Leader||Dr M Fader, PhD, PGCE, RN, BSc(Hons)|
|Location||School of Midwifery and Nursing, University of Southampton, Bristol Urological Institute Southmeand Hospital, Bristol, Oxford Centre for Enablement, Oxford and Department of Economics, University of Surrey, Guildford|
|Grant awarded||6 July 2006|
|Start date||2 October 2006|
|End date||30 September 2012|
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The project leader, Professor Kathryn Getliffe, began her clinical career in community nursing, giving her very real insights into catheter-related problems. Some of her earliest research, 15 years ago, was with patients who suffered recurrent blockage of their catheters, and she has continued to work on the problems associated with incontinence.
The researchers in the project team have an international reputation in the clinical evaluation of continence products such as catheters, drainage bags, absorbent pads and so on, as well as a strong track record in trying to improve the products available to patients. Their multidisciplinary expertise, in disability, rehabilitation and continence care, gives them the perfect combination of skills.
Who stands to benefit from this research and how?
Making better use of existing catheters
Everyone who is using a catheter over the long term stands to benefit from this project. Initially, researchers hope their work will ensure that people are getting the most out of the catheters that are already available – that everyone is receiving the best type of care and support for them. The needs assessment tool will be invaluable to healthcare professionals as they evaluate the individual needs of each catheter user.
Developing innovative new products
This study will also provide the firm data that product developers need to design better ways of controlling the bladder. Catheter users urgently need new, user-friendly products that cause fewer complications, as well as being easier to manage, more comfortable and less embarrassing. The quality-of-life questionnaire and data on costs will enable developers to evaluate the benefits of new products. Researchers hope their work will lead to renewed interest and enthusiasm for an area of medicine that has been seriously neglected.
- Kohler-Ockmore J, Feneley RCL. Long-term catheterisation of the bladder: prevalence and morbidity. British Journal of Urology 1996;77:347-351.
- Kunin CM, Douthitt S, Dancing J, Anderson J, Moeschberger M. The association between the use of urinary catheters and morbidity and mortality among elderly patients in nursing homes. American Journal of Epidemiology 1992;135:291-301.
- Cottenden A, Bliss D, Fader M, Getliffe K, Herrera H, Paterson J, Szoni G, Wilde Ml (2005). Management with Continence Products. In Abrams P, Cardozo L, Khoury S and Wein A (eds). Incontinence vol 1 Chapter 4. Health Publication Ltd, Paris.
- Perry S, Shaw C, Assassa P, Dallosso H, Williams K, Brittain KR, Mensah F, Smith N, Clarke M, Jagger C, Mayne C, Castleden CM, Jones J, McGrother C. An epidemiological study to establish the prevalence of urinary symptoms and felt need in the community; the Leicestershire MRC Incontinence Study. Journal of Public Health Medicine 2000;22(3):427-434.
- Department of Health. 'Good practice in continence services.' Department of Health, London (2000).