Intermittent self-catheterisation (ISC) is now considered the standard of care for most neurologic patients with lower urinary tract disorders (Groen et al, 2016). Self-catheterisation is usually a simple procedure. It involves the introduction of a catheter through the urethra to the bladder by the patient in order to ensure the complete evacuation of urine. Numerous societies, headed by the International Continence Society, are in agreement on the effectiveness of ISC (Tornic et al, 2018).
Guidance from the National Institute for Health and Care Excellence (NICE) 2012a; 2012b) recommends that, whenever possible, ISC should be considered for its benefits. Use of intermittent catheters is reported to reduce the risk of catheter-associated urinary tract infection (CAUTI) compared with indwelling urinary catheters while improving patient comfort and quality of life (Beauchemin et al, 2018). ISC is considered the first step towards independence, normalisation, control, dignity and self-esteem in relation to bladder management (Shaw and Logan, 2013).
However, previous studies have shown that, despite the benefits of ISC, it does not guarantee behavioural changes and integration of this procedure into the daily life of patients (Cobussen-Boekhorst et al, 2016; Nørager et al, 2019). Adherence to treatment is a problem for many people with chronic illnesses, including those with incontinence problems. Patients may encounter internal (personal) or external (related to the environment) difficulties. Identifying these obstacles early will help promote the success of ISC. This review aims to identify barriers (internal and external) related to ISC and to propose adequate solutions to avoid them.
Clean intermittent self-catheterisation
The use of self-catheterisation has grown since the 1970s with the development of the technique of clean intermittent catheterisation. Initially, self-catheterisation was used with paraplegic patients in the acute phase of their accident, when their bladder was not emptying effectively. It is now used in the management of various urological, gynaecological, psychogenic and iatrogenic pathologies.
According to the guidelines of the European Association of Nurses in Urology (EAUN) (Vahr et al, 2009), the clean intermittent catheterisation technique is used only by patients or home caregivers. Clean technique implies that the procedure is not sterile. The catheter can be touched without gloves. The catheter is sterile or reusable, with or without lubricant. Hand hygiene involves the use of soap and water.
Teaching patients ISC
ISC is considered the gold standard for urine drainage (NICE, 2015). Teaching strategies for ISC should ensure that caregivers are familiar with the basic anatomy and function of the lower urinary tract (Vahr et al, 2013). For some patients, this procedure may be required through their lifespan and performed several times each day (up to six times a day). This is why community nurses must pay particular attention to simplify the stages of preparing and carrying out the catheterisation (Balhi et al, 2020). Patients need verbal explanation, practical instruction in the procedure and written information (Vahr et al, 2013). Moreover, increased support and follow-up are necessary, particularly in the early stages, to ensure long-term compliance (Royal College of Nursing (RCN), 2019).
Intermittent self-cathterisation is commonly accepted by several international societies for maining urinary continence in those with neurological conditions and the associated urinary symptoms
ISC is taught by a competent and experienced specialist professional with good communication skills (RCN, 2019). Health professionals' communication skills and attitudes are instrumental in promoting confidence in carrying out the procedure and can promote long-term compliance (Vahr et al, 2013). Patients should be encouraged to ask questions and interact with their instructor (Balhi et al, 2021).
Adherence to ISC
According to the World Health Organization (WHO) (2003b), adherence is ‘the extent to which a person's behaviour-taking medication, following a diet and/or executing lifestyle changes-corresponds with agreed recommendations from a healthcare provider.’ It is well accepted that ISC has several advantages over indwelling catheters and suprapubic catheters. However, a positive effect does not guarantee that patients perform catheterisation over a long period of time (Cobussen-Boekhorst et al, 2016). Inadequate adherence reduces the effectiveness of treatment, and this can lead to complications, deterioration in health and, ultimately, death (Barbosa et al, 2012). This represents a significant burden not just for patients but also for the healthcare team, healthcare system and society. These costs are both personal and societal, such as those attributed to complications, hospitalisation or absenteeism (WHO, 2003a).
Data in the literature regarding patient adherence to ISC vary. Chai et al (1995) examined adherence to ISC in a cohort of patients with spinal cord injury, and they showed that, after a mean of 5.9 years, only 71% were compliant with this method of bladder emptying. Girotti et al (2011) found that 58% of patients adhered to ISC after 1 year of follow-up, compared with 47% patients in a study conducted by Cobussen-Boekhorst et al (2016).
Internal barriers affecting adherence to ISC
Physical factors
Assessment of the functional abilities of patients before the start of ISC teaching is a fundamental step. The therapeutic approach must be adapted according to the needs of each individual. All of the physical barriers that can affect the quality of the ISC should be considered: poor eyesight, reduced manual dexterity, reduced mobility, body habits and the changing nature of the condition. It is strongly recommended that the duration of patient training in ISC be adapted to the physical, cognitive and psychological capacities of the patient, as well as any patient-dependent environmental constraints (Gamé et al, 2020).
Manual dexterity
The upper limbs are important for installation (transfer and undressing) and for the technique itself. Vahter et al (2009) found a correlation between learning failure and the Expanded Disability Status Score (EDSS) in patients with multiple sclerosis, which reflected the patient's poor mobility abilities. Another study found dexterity to be a common barrier to ISC, affecting 21% (n=9) of patients. This funding has been reported exclusively in patients with multiple sclerosis. They said the dexterity problem was mainly due to the spasticity, which is often experienced by patients with neurological problems (Bolinger and Engberg, 2013).
In order to assess the technical feasibility of ISC, the pencil and paper test (PP test) can be used. The PP test is a valid instrument to predict the ability of patients with neurological disease to practice ISC. However, psychological factors cannot explored using this test (Amarenco et al, 2011).
Cognitive disorders
Cognitive dysfunction has been reported by several studies as a major barrier to learning ISC. However, in a previous study of patients with multiple sclerosis, the ability to learn was found to depend on the number of sessions needed to acquire the skills and not on cognitive abilities (Vahter et al, 2009).
In the event that the patient does not have the capacity to perform ISC correctly, an appropriate person (spouse, caregiver or guardian) should be identified and trained to undertake ISC.
Pain
The pain experienced by patients during catheterisation varies among studies. Kessler et al (2009) showed that the majority of patients considered ISC to be easy and painless procedure that did not interfere with daily activities. Consequently, quality of life improved in more than 60% of the patients. Another study showed that 38% (n=13) patients experienced pain (Wilde et al, 2011). According to Turmel et al (2019), there seems to be an association between the presence of pain and poor adherence at 1 month when patients are learning ISC. The fear of reproducing painful symptoms induces an attempt to avoid ISC regardless of the benefits achieved.
A specific assessment and management of pain should be taken into account when introducing ISC, especially in neurological patients. The instructor should choose a suitable catheter for each patient to reduce pain.
Continence
The results of published studies are mixed with regard to continence and ISC. Girotti et al (2011) showed that the number of urinary incontinence episodes between catheterisations did not influence patient compliance, while Yavuzer and colleagues (2000) pointed out that the primary factor for long-term ISC acceptance is continence.
Age
Age is a very important variable to consider when planning ISC. Self-catheterisation becomes less convenient with age. Older patients may present with poor self-care ability, lack of motivation, reduced ability to cope with new situations, decreased visual acuity, decreased motor dexterity and preconceived ideas about manipulation of their genitals. Girotti et al (2011) showed that the adherence rate for patients older than 60 years was only 33%, compared with 86% for patients younger than 40 years. The same findings were reported by Cobussen-Boekhorst et al (2016), who showed that adherence can be negatively influenced by increasing age. A weak correlation was found between increasing age and stopping catheterisation (Cobussen-Boekhorst et al, 2016). However, Van Achterberg et al (2008) reported that younger patients felt that the need for ISC only added to the problems they encountered with their long-term condition, lowering their motivation and thus influencing their adherence. They believed that ISC also had an impact on relationship building, affecting intimacy and sexuality.
Positioning
The catheterisation procedure should be performed by patients in different positions (standing, lying or sitting), taking into account limiting factors, in order to make it accessible in all life circumstances. However, finding the ideal position to perform ISC safely remains a real challenge for patients, especially women. Reduced mobility and central obesity can interfere with proper positioning when inserting the catheter into the urethra. A study conducted by Bolinger and Engberg (2013) showed that 25% (n=11) of women find positioning of catheters to be a challenge to ISC.
Women can use a small mirror at the beginning of training to locate the meatus. Other tools are available to aid self-catheterisation, such as abductors and knee pads.
Psychological factors
Few studies have focused on patient perception of ISC. The initial and short-term adherence are influenced by misconceptions, fear, shame, self-motivation and stigma. These determinants illustrate how ISC is not as ‘simple’ as it is supposed (Van Achterberg et al, 2007). Poor initial acceptability sometimes remains a major difficulty for long-term compliance. These negative feelings may not resolve over time and could resurface at any time (Ramm and Kane, 2011).
The psychological impact of ISC varies by individual. A study conducted in 2015 (Faleiros et al, 2017) showed that most patients with spina bifida and their caregivers did not experience any major emotional difficulties related to ISC. Of those patients who were asked whether there were any negative feelings or ideas that could affect the performance of the procedure, most (77.5%) did not report such feelings. In contrast, 22.5% (n = 45) described emotional difficulties, such as fear and shame (Faleiros et al, 2017).
Psychological and emotional factors related to patients and their families should be taken into account when learning (Faleiros et al, 2017). Community nurses should adopt a non-judgemental attitude and show empathy towards the patient (Ramm and Kane, 2011).
Expectations and fears
Expectations vary depending on the underlying medical condition and patients' prior knowledge about ISC. Some patients can feel embarrassed and fearful of inserting a tube inside their body, risking damage to their urethra. One study showed that, before learning ISC, almost all male patients thought the procedure would be painful. However, it seemed less painful than expected after performing the procedure (Cobussen-Boekhorst et al, 2016).
From the start of learning, it is necessary to establish a compromise between the instructor and patient regarding the expected results, possible complications, the period during which the ISC will be conducted and the number of catheterisation per day. This will help manage patient expectations. The healthcare professional should be honest, frank and realistic. It can help patients to understand the reality of their condition (Nørager et al, 2019).
Patient motivation
The patient's motivation to undertake ISC should be explored early in the learning programme. Lack of motivation is the most common reason for failure. The patient must be motivated to learn the procedure and to maintain it for a long time.
Introduction of the need to initiate ISC can influence patient motivation. According to Cobussen-Boekhorst et al (2016), one patient said she felt that she had to do something terrible because the doctor was so nervous. The patient should understand potential complications and outcomes if they are or are not compliant with ISC (Oh et al, 2006). In order to encourage patients, it is necessary to promote the benefits of ISC in terms of quality of life, reduction of urinary tract infections and protection of the upper urinary tract.
The desire to maintain independence was also a motivating factor in the realisation of ISC. Cobussen-Boekhorst et al (2016) showed that patients who had indwelling catheterisation before ISC reported that the latter procedure was better. They experienced more freedom and were less restricted compared with when they used indwelling catheters.
Feeling of loss
One study showed that loss of normal bladder function can be a devastating event and trigger responses associated with grief and loss. The majority of participants experienced deep emotional reactions ranging from shock, denial and isolation. However, patients with partial and gradual loss of bladder function were the least affected by this feeling (Ramm and Kane, 2011).
Community nurses must take the patient's psychological state into account, as ISC can represent an additional psychological barrier, apart from the disease itself.
Stigma
Stigma is the sidelining of a person for their differences, which are seen as contrary to societal norms. Those affected described the stigma associated with using urinary catheters (Ramm and Kane, 2011). The term ‘urinary catheter’ itself had negative associations for most participants when first introduced. Similarly, the term ‘incontinence’ was perceived to be related to older adults or severely disabled individuals (Ramm and Kane, 2011).
Aversion and embarrassment
Some patients may never adjust to the idea of self-catheterisation and may develop an aversion to the procedure. Urinary catheterisation is an intimate act in its nature. It requires exposure of the genital area. Any embarrassment felt as a result of this exposure can be exacerbated by time pressure and the desire to ‘get it right’. These pressures can be exacerbated by difficulty in visualising and accessing the female urethra (Ramm and Kane, 2011). However, another study (Cobussen-Boekhorst et al, 2016) showed that patients did not experience any aversion to intermittent catheterisation. They hoped that their physiological complaints would improve with the catheterisation, thus enabling them stop the procedure one day (Cobussen-Boekhorst et al, 2016). Another study showed that patients who have difficulty adjusting to ISC with poor adherence used denial and avoidance strategies (Shaw and Logan, 2013).
External barriers affecting adherence to ISC
Factors related to training
Lack of knowledge or insufficient training
Due to its invasive nature and unnatural experience for the patient, understanding the benefits of ISC is necessary in order to ensure adherence to treatment. One study (Ramm and Kane, 2011) found that all participants highlighted their lack of prior knowledge about urinary catheters and the value of ISC. Most had never seen urinary catheter (Ramm and Kane, 2011). In another study (van Achterberg et al, 2008), patients mentioned that the knowledge gained during therapeutic education sessions relating to the anatomy of the urinary tract and their pathologies was an important factor in understanding and mastering ISC. In this regard, patients admitted that their prior knowledge of the anatomy of the urinary tract was incomplete, if not totally wrong.
This lack of understanding often leads patients to draw the wrong conclusions (Nørager et al, 2019). Discovering and resolving these misunderstandings are essential steps in motivating the patient to accept ISC. Patients who start ISC for the first time should have, at least, some basic knowledge of the urinary system. They should also understand the cause for their voiding dysfunction.
The instructor
The instructor is a major determinant in the patient's progress. They help the patient to gain independence and self-confidence in order to obtain a better quality of life (Girotti et al, 2011). In a previous qualitative study, most participants stated that they would have preferred to be taught by nurse they already knew and with whom they had already developed relationship, rather than a stranger. Whenever possible, a nurse who has already established a therapeutic relationship with the patient should also teach them ISC (Ramm and Kane, 2011).
Nursing staff who train patients to manage ISC in healthcare facilities must have acquired the requisite competencies and be under medical supervision (Gamé et al, 2020). One study explored the views of health professionals on the need to provide nurses with specialised training in ISC (Weynants et al, 2017). Most urologists said they would find it more convenient to offer ISC to patients if they had a specialist nurse on their team. In particular, for urologists with less than 10 years of experience, the lack of nurses specialising in continence was a considerable challenge (Weynants et al, 2017).
Support from and regular follow-up by health professionals
Regular follow-up is necessary, as neuro-urological disorders are often unstable (Groen et al, 2016). A regular medical evaluation of the indications and practice of ISC is strongly recommended (Gamé et al, 2020). It also requires the establishment of a care system and hospital-based human resources, which can be problematic (Oh et al, 2006). In a previous study (Bolinger and Engberg, 2013), participants complained about a lack of follow-up after their initial teaching session. They were very grateful that someone asked about their progress. They were even eager to share their ISC experience with their lead instructor. Community nurses can offer patients supporting information and signpost them to learning programmes, literature, websites, classes and meetings (patient support groups), as well as recommend organisations and helplines.
It is recommended that ISC patient training be based on a formalised protocol (Gamé et al, 2020). Neel et al (2008) reported that 88.6% of their patients with lower urinary tract dysfunction continued with ISC through a structured therapeutic education programme and appropriate follow-up. Oh and colleagues (2006) showed that the ‘centralised intensive education system’ is a superior training programme to the conventional ‘individualised ward education system’ for patients with voiding dysfunction to acquire a proper ISC technique.
Factors related to the choice of urinary catheter
Limited options in choice of urinary catheters and equipment
In the present market, there are different types of urinary catheters varying in dimensions, the material used, lubrication, coating and the possibility of reuse. It is necessary for the patient to test all available catheters in order to choose the one that best suits them. It is strongly recommended that the patient be involved in catheter selection (Gamé et al, 2020). Patient satisfaction is an important indicator of the quality of care (Blumenthal, 1996). Appropriate support and products are crucial to long-term concordance with ISC (NICE, 2019). Several patients complained that they could not try different types of catheters during the learning period (Wilde et al, 2011). They preferred to have the choice of the most comfortable catheter (Cobussen-Boekhorst et al, 2016). The available data suggested that greater treatment satisfaction was associated with better compliance and improved persistence and with lower regimen complexity or treatment burden (Barbosa et al, 2012).
To evaluate the satisfaction of patients with the urinary catheter provided, the Intermittent Catheterisation Satisfaction Questionnaire (InCaSaQ) can be used. This tool was found to be a simple and valid test for the evaluation of patient satisfaction with the urinary catheter. Thus, it is possible to compare the comfort and effectiveness of different types of catheter and to objectify the need to change the type of catheter in cases in which patients express their dissatisfaction (Guinet-Lacoste et al, 2014).
Barriers influencing adherence to ISC outside the home
Incorporating ISC into daily life is not easy for patients. It takes practice, planning and a proper location. Even though the act of catheterisation was described as easy, most patients preferred home catheterisation (Cobussen-Boekhorst et al, 2016). Patients have described several barriers preventing their adherence to ISC outside the home.
Inaccessibility of bathrooms
The difficulty of adhering to ISC outside the home depended mainly on access to bathrooms and sanitary facilities, which were often inaccessible, lacked privacy or were dirty. Patients experienced circumstances that made ISC more difficult, for example, small toilets, insufficient lighting and-as mainly mentioned by men-a sink outside the toilet (Cobussen-Boekhorst, 2016). Similar results were found by Bolinger et al (2013), where the most common barrier reported by patients was lack of access to a bathroom. Participants reported that they managed this barrier by performing ISC before leaving their homes.
Patients also mentioned that bathrooms reserved for disabled people were often too small for the manoeuvrability of a wheelchair. In addition, the size and position of the toilet affected the ease of conducting the procedure.
Lack of privacy
A study published in 2016 showed that all patients who performed ISC outside their usual environment felt embarrassed and uncomfortable. They felt they were hampered in their privacy (Cobussen-Boekhorst et al, 2016). Similar results were reported by Wilde et al (2011), where patients complained of a lack of confidentiality and having to leave the bathroom door open during self-catheterisation.
Preparing for the procedure
Cobussen-Boekhorst et al (2016) provided insights into the facilitators and underlying barriers for patients performing ISC in everyday life. According to patients, the main constraint was preparation before handling (access to sanitary facilities, hand washing, preparation of the catheter and washing of the genitals), which was more difficult than catheterisation itself. In addition, patients felt embarrassed by the need to schedule suitable times for catheterisation, especially outside the home. For this, they chose to stay at home and adapt their social life to the times of catheterisation, rather than carrying out the procedure outside the home.
For some patients, transporting the necessary catheterisation equipment remains a problem (Shaw et al, 2008). Community nurses could provide advice on how to transport catheters for daily usage outside of the home environment (RCN, 2019).
Conclusion
Intermittent catheterisation is a safe, simple and effective treatment in the short and long term. However, there are several internal and external factors that can act as barriers to patient adherence to ISC, even in the short term. Internal barriers are represented by the physical and psychological factors associated with the patient. External barriers are mainly those related to the instructor, the training programme, patient monitoring, choice of urinary catheters and their availability. These obstacles should be explored from the start of the ISC learning programme. The instructor plays a key role in the success of this procedure by ensuring appropriate training, the right choice of urinary catheter and regular patient follow-up. Health professionals also need to listen to patients, giving them a sense of dignity and self-esteem and helping them develop habits that allow ISC to become easier.
KEY POINTS
- Intermittent self-catheterisation (ISC) is the gold standard in the treatment of chronic urinary retention
- ISC decreases the risk of urinary tract infections, protects the upper urinary tract and improves quality of life
- Despite the beneficial effects of ISC, patient adherence to this procedure is not optimal
- Several internal and external barriers may influence patient adherence to ISC
- It is necessary to identify these barriers and to propose adequate solutions in order to avoid them, from the start of the patient's therapeutic education
- This will promote patient adherence to the ISC and ensure the success of the procedure
CPD REFLECTIVE QUESTIONS
- How would you convince patients (especially young people) to accept their illnesses and perform intermittent self-catheterisation (ISC), which some them might need for the rest of their lives?
- How often should patients performing ISC be followed up?
- What are effective interventions to reduce stigma towards patients performing ISC?