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Patients' experiences of clean intermittent catheterisation

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VOL: 98, ISSUE: 04, PAGE NO: 55-56.

Ann McConville, BSc, RGN, is area continence adviser, Southern Health and Social Services Board, Northern Ireland

Many studies have been carried out looking at different aspects of clean intermittent catheterisation, (CIC). However, these mainly looked at patients with spinal cord injury and infection rates and treatment. There was a recognised gap of knowledge as a result of a lack of research which looked at the lived experiences of those using clean intermittent catheterisation and their quality of life.

 

Many studies have been carried out looking at different aspects of clean intermittent catheterisation, (CIC). However, these mainly looked at patients with spinal cord injury and infection rates and treatment. There was a recognised gap of knowledge as a result of a lack of research which looked at the lived experiences of those using clean intermittent catheterisation and their quality of life.

 

 

I conducted a survey to gain insight into the experiences, knowledge and levels of satisfaction of living with clean intermittent catheterisation for patients living in areas I had responsibility for.

 

 

Objectives
The objectives of the study were as follows:

 

 

- To assess patient knowledge regarding reasons for CIC as well as management of the procedure;

 

 

- To assess their level of satisfaction regarding provision of information, education and ongoing support;

 

 

- To find out how many patients had had urinary tract infections, their frequency as well as other related complications;

 

 

- To gain some understanding of the impact CIC can have on the family;

 

 

- To find out if the use of CIC has led to improved urinary symptoms, greater independence and hence better quality of life.

 

 

I decided on a quantitative approach, using a questionnaire as the method of data collection. This used mainly closed questions, but some open-ended ones were included to explore patients’ lived experiences and to provide opportunity for greater feedback. This added a qualitative aspect to the study.

 

 

Ethical approval was given and informed consent was obtained from all subjects participating in the survey.

 

 

Analysis of findings
Sixty-nine questionnaires were sent out and 46 returned. This was a response rate of 67%. Ages ranged from 0-100 years, with the majority(46%) aged between 40-60.

 

 

All the participants knew why they had to have CIC. The majority (54%) stated that their bladder was unable to empty properly, while 20% had multiple sclerosis; 13% had had a spinal cord injury while 9% carried out the procedure for urethral stricture; 2% had spina bifida.

 

 

As CIC is a self-care treatment it was encouraging to see that the majority (85%) of participants carried out the procedure themselves, while 9% had it done by a partner, 4% by a carer and 2% by a nurse.

 

 

Forty-one per cent had been undertaking CIC for 6-12 months, while 20% had done so for one to two years and 20% more than two years; 15% had been undertaking CIC for less than six months. The majority of participants (67%) had been taught CIC in the community by a continence adviser; 30% had been taught in hospital by either a nurse (22%)or a doctor (4%). However, seven per cent stated that they were left to teach themselves which they found ‘stressful and worrying’.

 

 

Twenty-eight per cent of respondents carried out CIC two to three times daily, 15% daily, 7% weekly, 8% five to 10 times daily and of those three stated that they actually carried out CIC 10 times daily.

 

 

Patient information

 

 

Seventy-eight per cent of respondents reported that they had received enough information before starting CIC. Information they found helpful included an explanation of CIC in easily understood language, information booklets, time given to them for practical instruction of the procedure and reassurance that they could not damage themselves undertaking CIC. However, 20% reported that they did not receive enough information and three said that in hospital they were told to try to do CIC themselves. One stated that the staff member teaching her was more embarrassed than her or her husband and another reported that written information was of no benefit because he could not read. Another mentioned that information was given too quickly.

 

 

Ongoing support

 

 

Seventy-four per cent said that ongoing support was essential, while 9% did not agree.

 

 

Fifty-two per cent reported that they did receive ongoing support in relation to CIC but 46% stated that they did not. Of those participants some said that they would prefer to manage themselves. However, some comments included ‘special school staff should be trained in CIC’, and that there should be ‘access to a nurse monthly to discuss any problems’. Respondents also highlighted a need for more advice on hygiene, emotional help and more frequent follow-up.

 

 

Effects of CIC

 

 

Fifty-seven per cent reported having had urinary tract infections - 46% male and 54% female - with 54% being treated with antibiotics. These ranged from monthly infections to every two to three or three to four months. When asked if CIC caused or prevented infections, 41% said it prevented them while 30% said it caused them; 29% were unsure.

 

 

Sixty-three per cent of respondents said CIC had improved their independence, while 65% said it improved their urinary symptoms. Many commented that it was a much better option than having a self-retaining catheter. Respondents comments included that ‘CIC allowed them a better night’s sleep’, ‘fewer urinary tract infections’, ‘no need to wear nappies anymore’ and ‘less chance of incontinence’.

 

 

Negative comments about CIC included ‘I still have accidents and wet’, ‘you always have to watch your time to do CIC’, and ‘I still get a lot of infections’.

 

 

Qualitative data

 

 

The open-ended questions and opportunity to comment on many aspects of the questionnaire added an invaluable amount of qualitative information. It was quite clear from the individuals’ responses that CIC had a huge physical, psychological and emotional impact on them and in many instances their partners, carers and the whole family.

 

 

When asked how they initially felt when they were told that they needed to undertake CIC the majority of respondents felt worried, shocked, annoyed, frightened and depressed. Others felt a sense of relief and accepted CIC as ‘another means of keeping my dignity’, ‘pleased that there was an option to prevent the many urinary tract infections I was having’, and a spinal cord injury patient stated that it was ‘another step on the road to recovery’. Another respondent said that it was the worst thing he ever had to do in his life. Many reported that CIC affected their family and personal life. Some respondents did not go out and socialise because of embarrassment, and some found CIC time-consuming. One respondent said he was not able to drink as much alcohol as before and two women with multiple sclerosis found that having CIC done by their husbands was inconvenient. One said that her husband could not go out, while another stated this dependency left her feeling helpless and as if all of her dignity was gone.

 

 

Another female participant reported that CIC had put a wedge between her and her husband because he resented having to do it for her and their sexual relationship had suffered because he feared hurting her. Another female patient was so embarrassed about CIC that she did not talk to her husband or her family about it. One young man commented that his personal life virtually stopped, ‘as CIC saps my confidence, making socialising and staying overnight at a friend’s house a problem’.

 

 

Others reported that CIC gave them more freedom to go out and found it a better option than an indwelling catheter.

 

 

Discussion
Even though this survey was small it had a good response rate. Many of the questions gave the participants the option to comment, and the open-ended questions produced some rich qualitative data.

 

 

While respondents had a wide age range and different experiences of carrying out CIC, they understood why it was important for them to do so. The majority carried out this treatment themselves; however, concerns were raised by those who had to have it undertaken by a partner as it often created strain in their relationship.

 

 

The majority were taught in the community by a continence adviser, but for some who were taught in hospital it proved to be a frightening and worrying experience. Doherty (1999) reported that motivation, understanding and sensitivity on the part of the educator leads to participants becoming proficient in this treatment. A small questionnaire study by Bradley (2000) found that clinical expertise of the person teaching the technique was highlighted and continued support from health professionals was highly desirable.

 

 

In this survey 74% said ongoing support was essential and the comments of those who stated that they had received enough information before starting included ’ we had an explanation of CIC in easily understood language’ and ‘time was given for practical instruction of the procedure’.

 

 

The majority reported receiving enough information before starting CIC. However, it is of concern that 20% did not, and 46% reported that they do not receive on going support.

 

 

Most of the participants had a good understanding of the procedure and the product used, but a few were unsure about personal hygiene, constipation and use of catheters abroad.

 

 

As this treatment is meant to reduce the risk of urinary tract infections, it was disappointing that 57% reported having symptomatic proven infection. This is somewhat higher than the 42% reported in a 12-year follow-up study (Wyndale and Maes, 1990). What was even more worrying was that 30% thought that CIC caused infections and a further 29% were unsure.

 

 

Sixty-five per cent of the respondents stated that CIC improved their urinary symptoms, while Gray et al (1995) reported that 54% of 150 patients who performed CIC experienced incontinent episodes, and 53% of those noted only episodic incontinence.

 

 

Conclusion
The findings of this study has implications for future practice. Under the umbrella of clinical governance and evidence-based practice dissemination of this information is important if these patients’ voices are to be heard and clinical practices improved.

 

 

There is need for more in-depth qualitative research to explore the lived experiences of CIC. This could lead to the development of a specific quality-of-life assessment tool for practice in this area. Finally, the need for ongoing audit and re-evaluation of practice is advocated.

 

 

Recommendations
- Improve health professionals’ knowledge of CIC in hospital and community settings;

 

 

- Where possible, clients should be taught CIC in a community setting as opposed to an acute hospital setting;

 

 

- Improve clients’ and carers’ knowledge and understanding of CIC;

 

 

- Compile protocols and guidelines for CIC for use in both acute and community settings, thus offering clients a seamless service;

 

 

- Compile a register for CIC clients and offer them one- to two-monthly contact once they have become proficient;

 

 

- Address sexuality with appropriate clients and give more time and support to clients and their partners when they are undertaking CIC;

 

 

- Look at possible ways of attempting to reduce the rate of urinary tract infections and implement standards to achieve this.

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