Guidelines for Intermittent Catheterisation in Children - ESPU-Nurses

EUROPEAN SOCIETY FOR PAEDIATRIC UROLOGY NURSES Written by: Hanny Cobussen, Ellen de Bruin Laurence Hermsen, Jo Searles Peer reviewer: Ellen Janshen, Nathalie Fort, Brigitta Karanikas, Anka Nieuwhof. Prof. dr. Tom de Jong Prof. dr.Giantonio Manzoni Approved: September 2016 Review Due: September 2018

Intermittent catheterisation in children September 2016 TABLE OF CONTENTS PURPOSE ………………………………………..………………………………….… … 3 INTRODUCTION .............................................................................................................................................................4 BACKGROUND ...............................................................................................................................................................4 MEMBERS OF THE WORKING GROUP ............................................................................................................................4 CHAPTER 1.....................................................................................................................................................................6 METHODS.....................................................................................................................................................................6 TERMINOLOGY ...............................................................................................................................................................6 CHAPTER 2.....................................................................................................................................................................9 INDICATIONS FORCATHETERISATION....................................................................................................................................9 COMPLICATIONS ANDMANAGEMENT ..................................................................................................................................9 2.1 Infections..................................................................................................................................................9 2.1.1 Urinary tract infection (UTI).................................................................................................................9 2.1.2 Urethritis...........................................................................................................................................10 2.1.3 Epididymitis.......................................................................................................................................10 2.2 Trauma ...................................................................................................................................................10 2.2.1 False passage .....................................................................................................................................10 2.2.2 Urethral stricture ...............................................................................................................................10 2.2.3 Urethral bleeding ...............................................................................................................................10 2.3 Other.......................................................................................................................................................10 2.3.1 Bladder stones ...................................................................................................................................10 CHAPTER 3...................................................................................................................................................................12 MATERIALS .................................................................................................................................................................12 3.1 Catheters....................................................................................................................................................12 3.1 Types of Catheters ...............................................................................................................................12 3.2 Drainage holes (eyes) ...........................................................................................................................12 3.3 Charrière..............................................................................................................................................13 3.4 Length..................................................................................................................................................13 3.5 Tip design.............................................................................................................................................13 3.6 Catheters for non-touch technique.......................................................................................................14 3.7 Catheterisation Aids .............................................................................................................................14 3.8 Continence containment products........................................................................................................14 CHAPTER 4...................................................................................................................................................................15 NURSING INTERVENTIONS ...............................................................................................................................................15 4.1 Teaching self-catheterisation...................................................................................................................15 4.2 Frequency of catheterisation....................................................................................................................15 4.3 Complications/difficulties associated with................................................................................................16 4.3.1 Problems with insertion....................................................................................................................16 4.3.2 Pain/discomfort................................................................................................................................16 4.3.3 Constipation and faecal incontinence ................................................................................................17 4.3.4 Cognitive Ability ...............................................................................................................................17 4.3.5 Physical ability..................................................................................................................................18 4.3.6 Psychological and Emotional Readiness ............................................................................................18 4.3.7 Practical/Social Considerations ..........................................................................................................18 4.3.8 Promoting Compliance .....................................................................................................................19 4.4 Documentation /Patient Information ......................................................................................................19 4.5 Follow-up care........................................................................................................................................19 4.6 Transition................................................................................................................................................20 CHAPTER 6...................................................................................................................................................................23 SEXUALITY AND RELATIONSHIPS ........................................................................................................................................23 CHAPTER 7...................................................................................................................................................................24

Intermittent catheterisation in children September 2016 SUMMARY OF EVIDENCED RECOMMENDATIONS FOR PRACTICE .................................................................................................24 REFERENCES.................................................................................................................................................................26 APPENDIX A SUGGESTED STEP-BY-STEP PLAN FOR TEACHING PARENTS CATHETERISATION..........................................29 APPENDIX B SUGGESTED STEP-BY-STEP PLAN FOR GIRLS LEARNING SELF-CATHETERISATION........................................31 APPENDIX C SUGGESTED STEP-BY-STEP PLAN FOR BOYS LEARNING SELF-CATHETERISATION ........................................32 APPENDIX DMATERIALS FOR CATHETERISATION..........................................................................................................33 APPENDIX EASEPTIC PROCEDURE................................................................................................................................36 APPENDIX F USEFUL WEBSITES.....................................................................................................................................39 APPENDIX GCHECKLIST PATIENT INFORMATION..........................................................................................................40 APPENDIX H INDIVIDUAL TRANSITION PLAN (ITP).........................................................................................................51 EXAMPLE, TRANSITION PLANUK ......................................................................................................................................49 APPENDIX J PICTURES, .................................................................................................................................................52 APPENDIX I ..................................................................................................................................................................57

Intermittent catheterisation in children September 2016 PURPOSE To provide guidance relating to the teaching and performing of intermittent catheterisation in order to maximise patient safety and comfort. Intended audience These guidelines and procedures are aimed at all healthcare professionals who are involved with the teaching and performing of intermittent catheterisation in both hospitals and communities across Europe. Scope of guidelines The guidelines have been developed for nurse practitioners, continence nurses and other nursing staff (referred to below as healthcare professionals), who practice and teach catheterisation and selfcatheterisation to children and their parents. For reasons of clarity we have restricted the guidelines to catheterisation and self-catheterisation via the urethra in children from birth up to the age of 18 years.

Intermittent catheterisation in children September 2016 INTRODUCTION Background In order to promote the safety of children, parents and healthcare users and to ensure quality all care, wherever possible, should be based on research and scientific studies. In areas of practice where there is an absence of scientific research care should be based on best practice formulated from recognized expert knowledge and skills. The development of guidelines based on scientific research and the expertise of healthcare professionals informs practitioners and helps them to provide high quality, safe and consistent care. Intermittent catheterisation or self-catheterisation is the gold standard for treating neurogenic bladder dysfunction (ICCS) whilst there is literature evidence for some aspects of intermittent catheterisation there is limited research-based evidence on the techniques of teaching catheterisation, on compliance, and on followup care. For the purposes of these guidelines where scientific evidence was absent/insufficient the expertise of paediatric healthcare practitioners and review groups across Europe were utilised. These guidelines therefore use a research, evidence and best practice approach to promote a uniform and consistent approach to performing and teaching intermitted catheterisation which can be used by practitioners across Europe to inform and improve care for children and their families. Overview of contents The guideline clarifies terminology and discusses indications for catheterisation and potential complications. It outlines the types/materials of catheters and aids available for catheterisation and self-catheterisation and explains the procedure for male and female catheterisation. Specific information relating to approaches to teaching the procedure for various ages is provided and issues of independence and compliance are also discussed Potential complications, problems and barriers to successful catheterisation are identified and advice given on how to overcome these difficulties is also considered. The impact of catheterisation on quality of life and issues of sexuality and self-image are also highlighted. Members of the working group These guidelines are produced by the European Society of Paediatric Urology Nurses but are adapted from the Dutch guidelines for intermittent catheterisation for children 2014 and the EAUN (European Society of Urology Nurses) Guidelines for Intermittent Catheterisation 2013. These guidelines have been peer reviewed by members of ESPUN and by other practitioners involved in intermittent catheterisation in a variety of countries in order to represent a consensus of paediatric practice across Europe and increase their relevance for European practitioners. The in-depth literature review was conducted by a multidisciplinary team within the Netherlands and included literature from across the world. We would like to acknowledge the excellent and extensive work that the Netherlands team have done in compiling the guidelines on which these are based and members of the other countries who have also contributed to their formation. The range of practitioners consulted included: Nurse practitioners Continence nurses Paediatric urologists Child physiotherapists Urotherapists Psychological support staff Parent and child representatives Participating countries UK France Netherlands Germany

Intermittent catheterisation in children September 2016 Sweden Italy Government guidance To ensure the safety of healthcare users most countries across Europe have Government guidance on who is able to perform intermittent catheterisation. These generally advise that the procedure of catheterisation should be carried out by appropriately qualified and competent professionals. Non-qualified personnel (e.g. parents, school, respite staff) may carry the procedure in certain circumstances provided that they are appropriately taught by a competent healthcare professional.

Intermittent catheterisation in children September 2016 CHAPTER 1 Methods A systematic review of the literature was conducted using the databases: Cochrane, Medline, Pubmed and Cinahl searching literature between the dates 1998 and 2014 in both the Dutch and English languages. Relevant textbooks and existing guidelines and protocols were also reviewed. The following search terms were used: urinary catheteriz(s)ation, intermittent catheteriz(s)ation, intermittent self-catheteriz(s)ation, teaching, learning, coaching, infection prevention, urinary tract infection, neuropathic bladder, children, anxiety, pain, complications, disinfection. This information was used to formulate a draft guideline which was then reviewed and amended by practitioners from a range of practitioners and from a wide range of European countries. Grading and level of evidence The evidence used to support these guidelines has been graded according to the type and quality of the evidence as indicated in tables 4 and 5. This grading system is utilised throughout the document. Table 1 Level of Evidence Level of evidence Type of evidence 1a Evidence obtained from meta-analysis of randomised trials 1b Evidence obtained from at least one randomised trial 2a Evidence obtained from one well-designed controlled study without randomisation 2b Evidence obtained from at least one other type of well-designed quasi-experimental study 3 Evidence obtained from well-designed non-experimental studies, such as comparative studies, correlation studies and case reports 4 Evidence obtained from expert committee reports or opinions or from the clinical experience of respected authorities Table 2 Grade of Recommendation Grade of recommendation Type of evidence Nature of recommendation A Based on clinical studies of good quality and consistency addressing the specific recommendations and including at least one randomised trial B Based on well-conducted clinical studies, but without randomised clinical trials C Made despite the absence of directly applicable clinical studies of good quality Terminology Aseptic technique This technique is performed with a sterile catheter, sterile gloves and sterile lubricant (if the catheter is not pre-lubricated). The genitals are cleansed. Bacteriuria Asymptomatic bacteriuria is a UTI without symptoms .2 Bladder neck stenosis A bladder neck stenosis is defined as an abnormal narrowing of the bladder neck.

Intermittent catheterisation in children September 2016 Dilatation The term dilatation refers to the condition of an anatomical structure being stretched beyond its normal dimensions. Catheterisation techniques Catheterisation techniques are the various ways used to perform catheterisation. Clean technique This is catheterisation with good hand hygiene where a sterile or non-sterile catheter is used alongside genital cleansing. Note The abbreviations CIC and CISC are often used interchangeably. CIC is the abbreviation for clean intermittent catheterisation. It is recommended that this term is used when carers carry out catheterisation. CISC is the abbreviation for clean intermittent self-catheterisation, and is used when the child itself performs the catheterisation. No-touch technique Performed with a ready-to-use catheter without touching it. Post-void residual (PVR) Post-void residual is defined as the volume of urine left in the bladder after voiding.1 Sterile technique A completely sterile technique that is only used in operating theatres. This technique implies that all the materials are sterile. The person who carries out the catheterisation wears sterile clothes, including sterile gloves. It is often confused with the aseptic technique. Urethral intermittent catheterisation Urethral intermittent catheterisation (IC) is defined as the intermittent drainage of the bladder or a urinary reservoir via the urethra with the help of a catheter.1 Urethral stricture/stenosis A urethral stricture or stenosis is a narrowing in the urethra. Urinary retention Acute retention of urine is a painful, palpable or percussable bladder, where the patient is unable to pass urine. Chronic retention of urine is defined as a non-painful bladder, which remains palpable or percussable after the patient has passed urine.1 Urine Incontinence (UI) Urinary incontinence means involuntary leakage of urine; it can be continuous or intermittent. The subdivisions of incontinence include continuous incontinence, intermittent incontinence, daytime incontinence and enuresis. Urinary tract infection (UTI) Is defined as a combination of clinical age-related features along with the presence of bacteria in a reliable urine culture. Generally a UTI is caused by a single organism that is present in a concentration of more than 105 colony forming units per millilitre (CFU/ml). This level has not yet been formally validated for use in children. The following cut-off values are used: Urine collected via midstream or clean catch after cleansing the genitals with water: > 105 CFU/ml Urine collection via single-use catheter: > 104 CFU/ml Urine collection via ultrasound-guided suprapubic bladder puncture: > 103 CFU/ml Recurrent UTI A recurrent UTI is defined as:

Intermittent catheterisation in children September 2016 - two or more episodes of UTIs with fever and/or obvious flank pain, or - one episode of UTI with fever and/or obvious flank pain plus one or more episodes of UTI without a fever, or three or more episodes of UTI without a fever.

Intermittent catheterisation in children September 2016 Chapter 2 Indications for Catheterisation The technique of clean intermittent catheterisation was introduced by Lapides et al in 19723 for patients with different diagnoses of bladder emptying disorders. Several years later, Hannigan et al4,5 revised the technique for use in children. Intermittent catheterisation is applied in the case of persistent, recurring residual urine and/or an inability to empty the bladder. This may occur in the following disorders: Neurogenic bladder dysfunction. Combined with the administration of anticholinergic medication, CIC/CISC maintains a low pressure bladder which grows along with the child . CIC/CISC, combined if necessary with a maintenance dose of antibiotics, also reduces the risk of urinary tract infections and preserves renal function.6, 7 Bladder dysfunction caused either by an anatomical or functional disorder or by urethral pathology. CIC/CISC prevents both recurrent obstruction and urinary tract infections.8 Operations to improve continence also carry a risk of temporary or permanent bladder emptying impairment for which CIC/CISC may be indicated. Complications and Management 2.1 Infections 2.1.1 Urinary tract infection (UTI) The most common complication of intermittent catheterisation is a catheter-related UTI.9 Asymptomatic UTI is seen in 42-76% of children who catheterise. The true incidence is difficult to determine, however, because of the variety between studies with regard to the different catheter techniques, the different types and sizes of catheters, and levels of hygiene. In specific cases (vesico-urethral reflux, congenital disorders of the genital tract and recurring UTIs), antibiotic prophylaxis may be given.10 However, antibiotic prophylaxis does not reduce the frequency of symptomatic UTIs in children with neurogenic bladder dysfunction, relative to those not receiving prophylaxis.11 In adults performing intermittent catheterisation there are a number of identified factors that can increase the risk of UTI (see Table1). There is no equivalent data in children however it is pertinent to expect it may be very similar, if not the same, in children. Table 3 Risk factor for UTI Level of Evidence (LE) Low frequency of IC 2b Bladder over distension 1b Female 1b Poor fluid intake 3 Non-hydrophilic coating 1b Poor technique 3 Poor instruction 2b Recommendations LE GR In CIC/CISC, only symptomatic UTIs should be treated 4 C Antibiotic prophylaxis in case of reflux, congenital disorders of the urogenital tract, and recurring UTIs 1b A

Intermittent catheterisation in children September 2016 2.1.2 Urethritis In the past, research has demonstrated that inflammation of the urethra occurs in 1-18% of patients who catheterise. However, catheter techniques and catheter materials have improved greatly since then. These research findings are therefore no longer valid and new studies in children have not yet been done. 2.1.3 Epididymitis Epididymitis is not commonly seen, but can occur in cases of poor compliance. It can be the result of an infection of the urethra and UTI with reflux of infected urine in the genital tract. Treatment with antibiotics for at least two weeks is indicated. In adults, the short-term incidence is 3-12% and the long-term incidence is more than 40%.12 Although the incidence in children is not known, a study by Holmdahl (2007)13 found that in nine male adolescents who had poor catheterisation routines, three developed epididymitis at 11-12 years of age, while one got epididymitis again at age 16. 2.2 Trauma 2.2.1 False passage A false passage is the formation of a false route often in the region of the bladder neck or the prostate, which prevents the catheter being inserted into the bladder. Treatment consists of leaving an indwelling catheter in situ for several weeks and administering antibiotics if necessary. Following this, intermittent catheterisation can be continued once more. If this is unsuccessful surgical investigation may be required. Adequate training of health professionals can help reduce the formation of false passages by up to 78%.14 For persistent catheterization problems due to false passages construction of a catheterisable stoma may be needed in selected cases.. Recommendation LE GR A false passage should be treated by placement of an indwelling catheter and with antibiotics if necessary 4 C Healthcare professionals should be well-trained (according to protocol, and competent means qualified) as well in performing catheterisation, as in passing on the responsibility of catheterisation to the healthcare user, as in recognising complications 4 B Children and healthcare users learning CIC/CISC should be adequately instructed according to these guidelines 4 B 2.2.2 Urethral stricture A urethral stricture as a complication of catheterisation is uncommon (5%) and seen only in men. The risk can be reduced by using hydrophilic catheters.15 2.2.3 Urethral bleeding Urethral bleeding is seen more in boys than in girls. Persistent bleeding can be an indication of a UTI. 2.3 Other 2.3.1 Bladder stones The risk of developing bladder stones is known to be higher in patients who are long-term users of catheters via a Mitrofanoff stoma16, those who have undergone ileocystoplasty or those who do not completely empty their bladder when catheterising. Catheterisation via a stoma is not included in these guidelines, however, it is recognised that there is a risk of developing bladder stones in patients who have undergone ileocystoplasty

Intermittent catheterisation in children September 2016 and who catheterise via the urethra. This is due to the mucous produced by the patch of bowel inserted into the bladder. It is important therefore that mucous is regularly removed to minimize the risk of stone formation. Washing out the bladder with a saline solution which can be either readymade or cooled boiled water with salt added. If mucous is particularly problematic acetylcysteine or chondroitin sulphate instillations may be used to help break down the mucous. Acelylcysteine is also available in an oral tablet formulation. Catheters with wider openings or additional eyes (for example four eyes rather than the usual two) are also practical recommendations to assist the effective drainage of urine and mucous. For patients with ileocystoplasty the use of size 14 Fr catheters, or larger, is generally effective to evacuate all the mucus. For patients with residual urine after catheterization siphoning of the bladder twice a day with a longer tube into a lower positioned receptacle prevents stone formation. Recommendations LE GR In case of mucus the bladder can be washed out with a saline solution or acetylcysteine, or chondroitin sulphate can be instilled. Catheters with wider openings can also be used 4 C

Intermittent catheterisation in children September 2016 Chapter 3 Materials Catheters Catheters for intermittent catheterisation are available in various diameter sizes (Charrières) and lengths. They can have a variety of lubrication and/or coatings. There are also a variety of shaped tips and may come with or without integral drainage bags. Catheters can be specially designed for men, women, or children. For intermittent use, there are single-use catheters and reusable catheters available. Types of catheters may vary from country to country depending on local practice, availability and economics. Single use catheters are made of polyvinyl chloride (PVC) and are packed sterile and singly. They are usually discarded after use. There is an increasing demand for PVC-free materials in medical devices. The phthalate components in PVC can be harmful to the human body (REACH/EU chemical regulation).17 For some products, phthalate-free alternatives are available (the information can be found on suppliers websites). Intermittent catheters have no balloons, and are generally somewhat stiffer than indwelling catheters.18 When choosing which catheter to use, the following factors should be considered: medical safety, preference of patient/healthcare professional, physical disabilities and/or cognitive limitations, ease of use, and possible need for urine collection. In children, the length and Charrière size will depend partly on the child’s age but more importantly, the catheter should be long enough and large enough to provide easy, quick, and complete bladder-emptying, without damaging the urethra.19 Effective intermittent catheterisation is the result of compliance with both technique and frequency. It is therefore important that the patient is guided in selecting the best product. Sometimes it may be necessary to try a few different catheter types and systems.2,19,20 3.1 Types of Catheters Some single-use catheters require the addition of sterile lubricant. These lubricants are available with or without a local anaesthetic (lignocaine/lidocaine), and with or without chlorhexidine (antiseptic). These catheters may be reused in certain circumstances but this should only be in agreement with the child’s clinician. Only catheters without a coating should be used in this instance as coatings may cause catheters to stick as they dry out and cause trauma. There are also single-use catheters which contain gel either contained around the catheter or with a separate pack which requires activation to provide lubrication. In addition, there are catheters with a hydrophilic coating (liquid) within the catheter or in a package which again requires activating or filling with tap water. ‘Compact’ catheters are so called because the packaging is small and discreet. Some of the types of catheters mentioned above are also available as catheter sets, consisting of a catheter with an integrated drainage bag. These sets can be useful for wheelchair users, or if the toilet facilities are limited or unhygienic. These sets are designed for a ‘no-touch’ technique. Opening these catheter systems requires a certain level of hand function and manual dexterity and they are also more expensive. They are a useful additional aid but should be used only if indicated. Finally, there are catheters with Luer Lock connectors which will allow the administration of medication. Some female patients prefer to catheterize with a non-disposable metal catheter that can be used for years with daily cleaning 3.2 Drainage holes (eyes) The drainage holes (eyes) are positioned about 1 to 2 cm beneath the catheter tip. They allow the drainage of urine. It is therefore important that the catheter is placed far enough into the bladder (when urine starts to flow, the catheter should be advanced at least 1 cm further). There are usually two drainage eyes which are polished to avoid sharp edges. The size of the eyes increases with Charrière size (Fr). Catheter with additional eyes (3 to 4), and extra-large eyes which may be recommended to assist with mucous drainage (e.g. in an augmented bladder), and are available from Ch/Fr 8.

Intermittent catheterisation in children September 2016 3.3 Charrière The external diameter (size) of catheters is measured in millimetres, and is known as the Charrière scale (CH,Fr or Ch). 1 Ch corresponds to 0.33 mm. Generally most types of catheters are available is sizes from 6 to 20 Ch for intermittent catheterisation (Table 4 ). The size is commonly represented by the international colour coding of the connector at the end of the catheter, and the Charrière is stated on the package. Additionally for small or premature babies/neonates or difficulties with inserting size 6 catheters there are non-coated smaller catheters available a size 4 male length (Vygon) and a size 5 paediatric length ( Wycath). The use of feeding tubes is not recommended due to the incidence of knotting in the bladder. 21 Recommended size by age can be seen table 5. Table 4 Catheter connector colour chart Catheter size 6 8 10 12 14 16 18 20 Colour Diameter 2 2.7 3.3 4 4.7 5.3 6 6.7 Table 5 General overview of recommended Charrière per age category Age Charrière 0-1 years Ch 6-8 1-8 years Ch 8-10 8-12 years Ch 10-12 12 years and older Ch 12-14 As the urethra is able to tolerate large sizes of catheter e.g. a 3yr old boy can tolerate a size 14 catheter clinicians may recommend larger sizes than those in the table above in order to promote more effective emptying, reduce time to empty and minimize infection risks. 3.4 Length A catheter with a length of 20 cm is normally suitable for most boys up to 8 years old. In Charrière sizes 8, 10, and 12 there are catheters available with an ‘in-between’ length of 30 cm (Lofric, Coloplast, Teleflex). When boys become older, they can move on to the ‘adult’ length of 40 cm. There is a male compact version which is available for teenage boys which is graduated from a size 12 to 18 within the same catheter. These catheters should be only used in consultation with the health professionals. For girls, catheter lengths from 7 to 20 cm are available. These lengths can basically be used by children of all ages, with the shortest sizes intended especially for catheterisation when sitting on the toilet. The short catheters are packed in a way to ensure they are easy and discreet to carry. 3.5 Tip design There are a variety of catheters available with different tips Nelaton This is the standard tip. The catheter is straight, and has a rounded tip. Tiemann The tip is slightly curved. This catheter is sometimes recommended in case of an obstruction near the prostate, or after specific surgery (sling), or a high bladder neck. The curved tip should be inserted with the tip pointed upward. Pointed tip The pointed tip has a bendy part, and ends in a ball. It can be recommended in case of obstruction or pain in the sphincter region. Flexible tip This catheter has a tip that is somewhat narrower than the rest of the catheter. It can be recommended in case of a narrow meatus or a stricture.

Intermittent catheterisation in children September 2016 3.6 Catheters for non-touch technique There are currently an increasing number of systems available whereby the catheter can be inserted with the help of an applicator. This prevents the catheter from being touched. There is evidence that using the notouch technique reduces the risk of UTIs especially in patients with an increased risk of UTIs.22 The literature however indicates that some patients have difficulty handling the applicators, packaging and slippery surfaces of coated intermittent catheters. These factors should be considered when selecting the most appropriate catheters for each individual 3.7 Catheterisation Aids There are a variety of aids and devices to enable easier insertion for children with limited dexterity or a physical disability. For example, there are mirrors for girls to obtain a good view of the urethral orifice. Some can be attached to the leg and some can help to fix the legs in a position that keeps them apart leaving both hands free to catheterize. It can be difficult however to direct the mirror correctly and sometimes for the child to manage with the reversed image in a mirror. They are less compact, and therefore not very convenient to carry. Some of these mirrors also come with a light as an accessory product but these can be relatively expensive and are not usually provided free of charge in the majority of countries. There are special grips or handles available to help hold the catheter. These may be useful if the abdomen is large, the arms are too short, or a firmer grip of the catheter is needed. There are also ‘clothing holders’ to help keep clothes are out of the way. In addition to catheters and aids educational support materials are available in many countries. These include dolls to practise catheterisation, DVD`s with instructions to catheterize and discussions about children’s experiences with self-catheterisation, kits containing show-and-tell items for holding talks in school and card games etc.23-25 When transurethral catheterisation is too complicated construction of a catheterisable stoma in the umbilicus or lower abdomen may be recommended 3.8 Continence containment products Some children suffer from leakage of urine and/or faeces in between catheterisations and may require additional advice on appropriate containment products. There are disposable and washable products available depending on the volume of leakage. The types of products available will vary from country to country. For boys drainage systems such as sheaths (male external urinary collection systems) may also be a useful option if available. It is important to take into account the children’s lifestyle, cognitive abilities and independence when selecting the most appropriate aid or product for each individual case. In order to ensure children and families can make informed choices and get the best available products for their individual needs it is important that healthcare professionals keep informed of existing and new developments. They must also consider the financial implications and discuss these with the child / family. Consideration of further the factors around containment products is outside the remit of this guideline. 3.9 Use of catheters in poor financial circumstances In many countries cost of catheters for long term use can be an issue as single use catheters can be very expensive. Overall studies currently do not provide sufficient evidence to recommend or to contradict the use and reuse of non-coated catheters over single use /coated catheters. There is evidence that non coated catheters can be reused indefinitely with daily cleansing without extra risk for recurrent urinary tract infections.2 Female patients can also use reusable metal catheters.

Intermittent catheterisation in children September 2016 Chapter 4 Nursing interventions 4.1 Teaching self-catheterisation CIC/CISC is currently an important therapeutic procedure in paediatric urology, and is carried out in all age groups. The aim of CIC/CISC is to enable adequate and safe bladder management, which is necessary for children to be healthy, have self-esteem, and to promote independence as they grow up.7, 26-28 We know that, CIC/CISC does not cause any major emotional or behavioural problems.29,35,43 and that CIC/CISC can give children freedom and self-respect, which can facilitate an independent life. The positive experiences of CIC/CISC reported by Lopes et al 201130 may be as a result of achieving continence and no longer requiring incontinence products. A specialist nurse is indispensable when teaching a child CIC/CISC. He/she should be familiar with the emotional and psychological impact of CIC/CISC on children, adolescents and adults and also aware of the child’s level of development. The age at which a child can learn to self-catheterise ranges in the literature from 4 to 8 years.31-33 but is also dependant on the cognitive level of both child and the parents which must be considered when teaching children and parents. It is important to take account of any resistance to the procedure, concerns of embarrassment and fear of possible pain. The child and families existing knowledge of anatomy of the urinary tract, the reason for CIC/CISC and insight into the medical condition along with other possible treatment options is also important. 25, 2 8,33-38 Teaching CIC/CISC can take place individually or in a group.23, 28, 33, 34, 36 Taking a relaxed approach, giving them sufficient time, offering them privacy and respect for intimacy are needed to overcome embarrassment and anxiety, and make it easier to exchange and acquire information.33,34-35,38,39,3 The ideal place for teaching CIC/CISC is usually the home setting as it is familiar territory and the patient feels safer there.34 However, in daily practice this is this is not always possible. It is also very important to motivate and compliment parents and children in order to boost self-confidence.14, 27, 33-35 It is essential, when teaching catheterisation, that the healthcare professional is knowledgeable about the types of catheter available and can give advice and information regarding the most suitable options for the child and family depending on their underlying medical problem, individual circumstances and surgical procedures which the child may have undergone. 34, 36 These factors may dictate specific types or length of catheter which may be needed. Other factors such as frequency of catheterisation, hygiene issues, predisposition to UTIs, medication, physical problems such as dexterity, access due to wheelchairs, and additional need for continence aids may also influence the choice of catheter and teaching of CIC/CISC. The catheterisation technique should be discussed and practised with the child and family. 2, 40 A step by step teaching plan for teaching parents and for children is advised, examples of these can be seen in Appendices A to C. For healthcare professionals undertaking catheterisation in the hospital a similar procedure is shown in Appendices D and E. An instructional model or doll is a very useful aid for explaining things to children and parents. It improves accuracy31 and it reduces anxiety because it means the child can practise non-invasively and make errors without experiencing pain.24 Because children associate dolls with play this also encourages participation. 24, 34 The child can gain self-confidence through role-play, playing the role of the nurse with the doll being the patient.31, 34 Baby models may also be available for parents to learn catheterisation. For adolescents, sharing their experiences of catheterisation without their parents being present is also a good way of encouraging participation and promoting long term compliance.33, 37 41 4.2 Frequency of catheterisation The frequency of catheterisation depends on the indication for catheterisation, and on factors such as the volumes obtained during catheterisation26 and the fluid intake. It should take place with a frequency that is sufficient to prevent UTIs and overfilling of the bladder, while being socially acceptable. Each individual will

Intermittent catheterisation in children September 2016 make a decision together with the urologist, paediatric urologist or nurse practitioner. In adolescents (with an adult bladder capacity) a general rule is that the bladder capacity should not exceed 500 mL and catheterisation should take place on average 4 to 6 times a day, if this is the only or recommended method of voiding. If spontaneous voiding is still possible, catheterisation is usually 1 to 3 times a day.42 4.3 Complications/difficulties associated with catheterisation During learning and adherence with catheterisation or self-catheterisation, problems do sometimes occur. Despite this, it appears that most children tolerate catheterisation with few complications.15, 43 Even in children who are sensate it appears that they (or their caregivers) are also able to learn the technique rapidly and with good long-term results.44 Success of catheterisation however can be affected by numerous factors these include; Difficulties with insertion and/or removal of the catheter Pain/discomfort Constipation/faecal incontinence Cognitive ability Physical difficulties Psychological and emotional Practical/social considerations Such problems can lead to inability or complete refusal to perform catheterisation or difficulty with long term compliance. Below describes a number of practical problems and solutions that may have an impact on successful catheterisation. 4.3.1 Problems with insertion Difficult insertion In children, particularly those with neurogenic bladder dysfunction, it is sometimes difficult or impossible to get a catheter past the sphincter especially if they are unable to relax the sphincter muscle due to sphincter dyssynergia. It can help to ask the child to take a deep breath or to change position (sitting, standing, lying). It can sometimes help to hold the catheter against the sphincter using light pressure and to wait a little while. Often the sphincter will relax after a while. If the problem only occurs when the bladder is full, it can be helpful to catheterise a bit earlier or more regularly. A change of catheter to one with a different tip can also help ease of insertion and if there is difficulty opening the packaging, or if the catheter is too slippery preventing a good grip a change of catheter type may also be beneficial .20, 46 Recommendation LE GR When there are problems inserting a catheter, discuss and practise alternative options (deep breaths, changing position, applying light pressure to the sphincter, catheterising earlier, other catheter or other tip 4 C 4.3.2 Pain/discomfort Pain may be felt during insertion and during removal of the catheter. This can be the result of bladder spasms or a urinary tract infection, but can also be related to insufficient relaxation of the pelvic floor when inserting or removing the catheter. Different types of catheter may cause possible discomfort and stinging due to type of coatings, lubrication and stiffness which may irritate for some individuals. Vacuum suction caused by “tenting “of the bladder may also cause discomfort on withdrawal of the catheter and a larger Charrière less deeply inserted catheter may help to overcome this. Trying different types of catheter will help individual children to select the most comfortable one for them. Anxiety and a fear of pain (justified or not) can hamper the learning process. It is important to discuss fears and how they can be overcome. Additional psychological support may be used if available .23

Intermittent catheterisation in children September 2016 In children with non-neurological disorders who cannot relax their pelvic floor sufficiently when inserting and removing the catheter, teaching pelvic floor relaxation exercises may be helpful. Additional help from a paediatric pelvic floor physiotherapist, where one is available, may also be very useful. In children with both neurological and non-neurological disorders, additional pelvic floor physiotherapy aimed at relaxation can also be helpful in overcoming anxiety related to catheterisation..23 In the case of bladder spams the urine must always be tested for the presence of an infection and treated with antibiotics where appropriate. If there is no infection or spasms it is sometimes necessary to prescribe anticholinergics. Recommendations LE GR For irritation caused by the catheter: if necessary use additional lubrication and/or a catheter with a different coating, a different thickness, or different stiffness 4 C In case of vacuum suction, try using a catheter with a larger Charrière or placing the finger on the end of the catheter during removal 4 C For children with non-neurogenic disorders, it can be helpful to do pelvic floor relaxation exercises when inserting or removing the catheter. Additional paediatric pelvic floor physiotherapy can also be helpful 4 C In children with both neurological and non-neurological disorders, additional paediatric pelvic floor physiotherapy can be helpful 4 C In the case of bladder spasms: check the urine and if necessary prescribe antibiotics; anticholinergics are sometimes needed 4 C 4.3.3 Constipation and faecal incontinence Constipation and faecal incontinence can affect the success of a self-catheterisation programme. Severe constipation can put pressure on the urethra making insertion and drainage more difficult. It is therefore important to pay attention to bowel function26,47 Faecal incontinence can make it difficult to maintain good hygiene. This, and the fact that children may also find it difficult to adequately wipe away stool after a bowel movement, can also increase the risk of urinary tract infection. For these reasons and for social reasons it is therefore important to address both bladder and bowel continence simultaneously wherever possible 26. Bowel management may consist of high fibre diet and adequate fluid intake, laxative therapy and in some instances rectal irrigation or ACE procedures can be considered. It should also be noted that a potential side effect of anticholinergic therapy (common used in children with neuropathic bladder) is constipation. Recommendations LE GR Before starting catheterisation in a child, evaluate bowel function and where necessary apply additional interventions or consult a specialist 4 C Be aware that social continence can only be achieved if both bladder and bowel function are treated, and discuss this with the child and caregivers 4 C 4.3.4 Cognitive Ability Teaching self-catheterisation to children is affected by both the age of the child and its level of cognition. In the first instance, the teaching method and the information should be adapted to the child's age and ability. Impaired cognition can affect insight, motivation, compliance and long term independence. It should also be recognised that some children may be appear verbally competent but have significant cognitive impairment for example with children with hydrocephalus. Inadequate assessment can severely hamper the learning

Intermittent catheterisation in children September 2016 process.23 Discussions regarding the child's social situation and educational ability can aid clarification of cognitive ability and help to achieve the best outcome. Children with autism spectrum disorders (ASD) are likely to require specific and extra attention. Some children may experience organisational and sequencing difficulties (notably those with hydrocephalus).45 Pictorial teaching aids and step by step guides are available for websites (Appendix F) and can be useful in these circumstances. Watches with an alarm or vibrating buzzer that can be set to go off at fixed times can also be useful reminders to catheterise. For some children, learning a new, tricky technique can be traumatic. In such cases support from a psychologist may be indicated. Recommendation LE GR Assess cognition before teaching the technique. Does it match the child's age? Adjust your instruction to both age and cognition (pictograms), and where necessary arrange for additional support and aids e.g. vibrating/alarming watches 4 C 4.3.5 Physical ability Difficulties when learning self-catheterisation can be caused by a lack of gross motor skills such as sitting or standing, fine motor skills such as dexterity and good hand function) or sensory skills such as poor vision, limited or absent sensation. Special catheters and devices as mentioned in Chapter 3 may be useful to aid independence, howeve,r sometimes the child will need the help of a parent or healthcare professional to carry out the procedure. Sometimes it is just not possible to catheterise via the urethra, in this case a catheterisable stoma may be an option.26 Although there are many similarities in the learning process, for clarity we have chosen to exclude catheterisation via a catheterisable stoma from these guidelines. For patients to continue to use CIC/CISC successfully as part of their daily routine, the procedure must be made as easy and quick as possible. 45 4.3.6 Psychological and Emotional Readiness The procedure of CIC/CISC has been shown not to negatively affect children emotionally whatever their age, however, most parents initially found it unpleasant to have to catheterise their child but despite this they complied with the proposed bladder management schedule. 29 It is important for healthcare professionals to consider the psychological, emotional and social implications for parents and children who need to learn and perform CIC/CISC. This can often pose the biggest challenge of this treatment. Effective communication, information giving, and positive attitudes can help to alleviate patients' anxiety and embarrassment.35 4.3.7 Practical/Social Considerations Whatever the age of the child it is important to ensure dignity and privacy is promoted whenever and wherever catheterisation is taught or performed. The correct facilities must be available for hand washing storage and catheterising in both home and school settings. Poor sanitary conditions and hygiene can also increase risk of infection. Parents may need advice or help with ensuring adequate facilities. It is essential that catheterisation is integrated easily into all parts of daily life including school, travel/holidays, sports clubs and activities. Failure to do so will affect the child’s physical social and emotional development and affect compliance with catheterisation. 41 Children and parents must be given choices and be involved in negotiating the catheterisation regime to fit with their lifestyle and activities. Children should be allowed to choose who knows about their catheterisation and who they wish to be informed 49 It is however beneficial for the child if certain people e.g. class teacher or a staff member at out of school activities, is aware. They can be a support for the child if there is any stress, anxiety or any other problems. A teachers knowledge of selfcatheterisation is likely to be limited, it is therefore important for teachers to understand what selfcatheterisation involves.49 It is also important to ensure that arrangements are made for suitable and discrete storage of catheters at school and outside of the home. School/ respite carers etc. may need a comprehensive training programme if

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