NHS Whittington Health

Toilet Training for Children with Special Needs

Toilet Training for Children with Special Needs

Project Report

By Rachel Muncey, Paediatric Special School NurseAbstractOne of the most important skills an individual can learn is how to use the toilet successfully and independently (Wheeler, 2007). Similarly, elimination, washing and dressing have been identified by Roper, Logan and Tierney (2000) as fundamental activities of daily living that increase independence and quality of life. Typically developing children establish control of their bowel at age two and control of their bladder at age three. Thus toilet training is performed by parents or guardians in the home setting, and/or carers in the nursery setting.

Researchers have reported that children with an autistic spectrum disorder (ASD) are the most challenging to toilet train and their difficulties often arise from a problem called Sensory Processing Disorder (SPD) which affects almost all who have ASD (Wheeler, 2007). In addition, some children with physical disabilities have limited ability to perform skills such as sitting, flushing, and washing hands and are therefore unlikely to reach full toileting independence. Correspondingly Bhupendra, Masey and Morton (2006) state that a severe impairment in mobility could delay toilet training. Thus children with ASD and physical disabilities commonly present in school with incontinence. There are no standardised guidelines that state who is best qualified to support children with learning difficulties to attain continence (Harris, 2004) however Education and Resources for Improving Childhood Continence (ERIC) (1999) state that the approach should be interprofessional. Therefore this project aims to develop toilet training in Special Needs Schools for the aforementioned children, using expertise and input from parents and professionals across different disciplines.

Background - NationalThe Royal College of Nursing (2006), state that continence support, advice and information should be available to all children and their families. Continence should be promoted though the main aim is to ensure bladders and bowels are healthy. They state that all children should have a trial of toilet training, however there are a number of children who will not achieve full continence. There are no national guidelines for toilet training for children with special needs though there are many accessible resources available that will be utilised in this project.

Background - LocalIn March 2013 there were four Special Needs Schools in the borough of Islington in which the need for specialist toilet training was becoming increasingly apparent. This was due to the range and complexity of children that attend the schools, and the large proportion of them who had not achieved bladder and bowel continence. A successful bid was made for funding from the Florence Nightingale Foundation in order to support more children with special needs to achieve their potential with regard to toileting independence. A budget of 3,500 was provided.

There are a variety of health professionals who work with children and their families who provide input towards toilet training. These include School Nurses, Occupational Therapists (OTs), Speech and Language Therapists (SLTs) and Teaching staff. Additionally, Support Workers provide toileting care to some of the children who access specialist respite and after school clubs. The professionals listed above are employed by a variety of agencies including the National Health Service, Local Education Authority, Charities and Government funded schemes. Toilet training had been initiated in the past by different workers and in a variety of settings, however little progress was made and the training had been given up on. It was a challenge for the many service providers to keep to a structured programme, and often there was not a named lead professional for distributing a plan and problem solving when new issues presented. As a result, a primary aim for this project was to designate lead professionals, and empower all who work with and care for these children to adapt and follow a scheduled plan for toileting, as this increases the effectiveness of training (Wheeler, 2007).

Current Local Service

Bladder and Bowel Care Team No Specialist Paediatric Continence Advisor, however these are present in other NHS Trusts

Nursing assessments performed annually or when conditions change or when different continence products are required. Referrals are made for issues such as constipation and overflow diarrhoea. No specialist training provided for professionals

Continence pads provided up to a maximum of 5 per day (unless special circumstances). No padded pants/trainer pants/ car seats available. These must be purchased by parents.

School staff performs toilet training. There is therapy input such as PECS/communication boards from SLTs and toilet assessments done by OTs however this is not joined up.

The financial cost of continence products provided for individuals in Islington borough is approximately 1,000,000 per year.

Project Aims

Method(Timeline) with explanationParticipants

Children were identified to be participants who were displaying signs of readiness for toilet training. These included some of the following:

1. Mental age of more than two years

2. Awareness of being wet or dirty

3. Ability to stay clean and dry for 1-2 hours at a time

4. Ability to stay clean and dry during naps

5. Physical ability to sit on the toilet

6. Ability to cooperate and assist with dressing and undressing

7. Not having any medical conditions that may affect toilet training

(Fleming and MacAlister 2013).The multi-disciplinary team (MDT) identified prospective participants based on the above criteria. Furthermore, details of the projects were entered into the school newsletters and some parents expressed an interest and put their children forward to participate. In total, 28 children were involved in the project.

Use of Funding

A large proportion of the grant provided was used to host a 3 hour training session in order to increase the knowledge and skills regarding toilet training. The session was provided by a Paediatric Continence Nurse, employed by the leading continence organisation; Education and Resources for Improving Childhood Continence (ERIC). 45 staff members from the following disciplines attended:

School Nurses

Occupational Therapists

Speech and Language Therapists

Teachers

Teaching Assistants

Respite Support Workers

Midday Supervisors

Nursery Nurse Clinical Psychologist

Therapy Assistant

Healthcare Assistant

The information was then presented to parents and caregivers at a parent support group meeting at each school. Providing training to parents is a vital component to successful continence training (Kroeger and Sorensen 2010). The presentations were given by the School Nurses, using the resources provided by the ERIC Nurse. The Lead Nurse for Bladder and Bowel Care attended and opened the floor to questions and answers. During this time some of the assessments listed below in the method were conducted with parents.

The remaining funding was used for:

Purchase of the highly recommended book: Toilet Training for Individuals with Autism or other Developmental Issues, by Maria Wheeler

Purchase of continence products including washable pads and seat covers

Nursing agency cover for the special schools in order for assessments and follow up to be conducted by the School Nurses

MethodOnce children had been identified they then underwent a formal assessment of readiness. The method performed coincides with recommendations from the RCN (2006) on Supply of paediatric continence products (page 6). The vast majority of assessments utilised were already available, produced by the local Bladder & Bowel care service and in use by the School Nursing team. Firstly, a Paediatric Assessment (see Appendix 1) was completed by the School Nursing Team with parents. This included the following key features:

Fluid Intake and Diet

Bowel Habit and the use of medications

Development Stage

Communication and Behaviour

Mobility, Dexterity

Environment

The assessment enabled any underlying medical conditions affecting toileting to be identified, such as constipation. Children could then be referred to the School Doctor or General Practitioner for review and treatment if required.

Secondly, a Toileting Chart (see Appendix 2) was provided both to school and to parents in order to track and record when a child opens their bowels or passes urine. This chart was adapted from the locally produced chart, and its suitability verified by the Bladder & Bowel Lead Nurse prior to use. By requesting both school staff and parents to monitor toileting, it promoted the concept of shared care and joint responsibility, something that had been identified as lacking in previous attempts at toilet training. Once this was completed, a Toilet Skills Assessment (see Appendix 3) was completed. Again, this enabled assessment of readiness for toileting as it helped to determine:

1. A maturing bladder that can hold urine for 1 - 2 hours.

2. A healthy bowel that is not constipated

3. The ability to sit on the toilet for sufficient time.

It was at this stage that some children were identified as unsuitable to commence toilet training as they either could not sit for an adequate length of time, had constipation that needed treatment or their urinary frequency was too high. For these children we were still able to create small targets, such as to work at encouraging the child to sit on the toilet for longer by using distraction or a favourite toy. This enabled teachers and parents to contribute to development of toilet training, even if it was small progress in very early stages. For these children a Reassessment Checklist (see Appendix 4) was completed whereby current provision of continence products was reviewed.

The Reassessment Checklist was also completed for children deemed ready to commence training. Changes to products could be made to support toilet training, such as changing supply of pads with side tabs, to pull-up pads.

For some children, the series of assessments were completed over the summer holidays, as part of a joint School Nurse and OT home visit. This again promoted the theme of shared care and enabled the OT to assess the need for specialised adaptive equipment at home and similar equipment in school, for example foot stools and grab rails. It was possible to ascertain the methods of communication used and relay this to the childs allocated SLT in school in order to create communication aids used during toileting. For example some children used a makaton sign for toilet, whilst others pointed to a symbol. It was also useful to discuss a reward system for correct use of the toilet that could be developed as a fun incentive. During these visits a good rapport was built with the child and family, and support was offered by telephone if needs arose in the future.

Following completion of assessments, toileting plans were discussed with class teachers and then implemented both in the school and home setting to maintain consistency. Some parents decided to delay beginning toilet training due to circumstances, for example the birth of a new child in the family. This coincides with advice from the Trusts Clinical Psychologist who recommended delaying training during stressful times. Each plan created was child specific and some of these are described in Appendix 5.Parents were encouraged to regularly inform their childs teacher of progress using their home-school communication book, and to telephone the school nurse, OT or SLT with any queries. The school nurse provided up to three follow-up telephone calls to troubleshoot further problems and adapt plans as progress was made.Results

Of the 28 children that were identified to participate.1 Child became continent of urine in the daytime prior to beginning a formal plan. (Number 1 on chart)3 Children became fully continent during the daytime. (Number 2 on chart)11 Children developed some new toileting skills but are not fully continent of urine in the daytime. (Number 3 on chart)8 Children did not have thorough assessments and plans created as parents decided not to participate. Progress made is unknown. (Number 4 on chart)

1 Child could not commence training due to changes with medication. (Number 5 on chart)

3 Childrens parents felt their child was too young or not yet ready. (Number 6 on chart)1 Child left the borough and therefore we were unable to continue to monitor. (Number 7 on chart)0 Child did not make any visible progress. (Number 8 on chart)

For the three children who have achieved continence, a total of 6,400 per year will be saved by the NHS in continence pads that are no longer required.

Case Study

Luke (pseudonym used to maintain confidentiality)When original assessments were performed with Luke and his Mother in summer 2013 it became apparent that Luke was very fearful of the toilet environment and would not even enter the toilet in his home. He wore pads supplied by the continence team and would not use the toilet. He had had a previous frightening experience where he had locked himself in the toilet and then was unable to unlock the door. Luke was displaying many signs of readiness, such as staying dry for up to 2 hours and indicating when he was wet. A specific toileting plan was created for Luke that included:

Removal of the bathroom door at home to alleviate fear of becoming trapped again

Mum to change Lukes pad initially just inside the bathroom, and gradually take him closer to the toilet each time.

Once Luke felt comfortable enough, Mum encouraged Luke to sit on the toilet at regular intervals; after snack and meal times. She would stand in the doorway encouraging and praising him when he urinated or opened his bowels in the toilet.

Whilst toilet training Luke would wear trainer pants so that he had the sensation of being wet if he had an accident.

School staff also took Luke to the toilet at regular intervals and created a reward chart for him in school. He was able to use a favourite toy whilst he sat on the toilet and was rewarded each time he used the toilet to urinate or open his bowels.

Lukes Mother said that she identified a big change once Luke felt secure in the bathroom environment. It took approximately 8 months for Luke to become continent during the daytime and required both school and his Mum to provide lots of encouragement, use social stories and reward charts. Mum says he now goes by himself and sometimes will inform her that he is going by using the word toilet Mum commented that it is brilliant that he can now go independently and she is very happy.Quotes from Teachers, Health Staff and Parents

Quote from a Mother:

I think its wonderful because I was afraid he would have all his life in a nappy so its amazing that now he doesnt!

Quotes from Teaching Staff:

He is now much more independent and we see his confidence (TA)

He's generalised his understanding and ability to follow instructions in toilet training to other situations in class, and he's moved from a single PODD page that he used for the toilet to a PODD book. (TA)

The toilet training made him more determined to communicate his needs. (Teacher)

We would never be able to do it unless we worked as a team with parents. (TA)

It's been such a lovely experience working together with parents to see what their child can achieve. (Teacher)

The experience has shown us all never to underestimate what a child can achieve. (TA and Teacher)

Unless you give the opportunity, you will never know what a child can achieve independently. (Teacher and TA)

I never expected that he would be completely out of pads (day and night) after 3 months. (Teacher)

I found the training really helpful and have passed on information to family and friends too. Its useful to know correct positioning and for boys to aim at something floating in the toilet like a ping pong ball. (TA)

Having training meant that an informed discussion could be had between staff and parents. There were different expectations between a parent and staff regarding a childs readiness and we were able to explain this to parents based on knowledge gained. (TA)

It would have been helpful for parents to attend the same training session to enable an open discussion. (TA)

Results of Training SessionsA questionnaire was compiled to assess parents views on the usefulness of the information session (See Appendix 6). The results are displayed in graphs:

A different questionnaire was also created to assess staff members response to the training (see appendix 7). The results are:

Limitations

There were numerous factors that limited the ability of children to develop continence and toileting skills. These include:

Not enough time for the School Nurse, SLT and OT to perform joint home visits for all children Some follow up phone calls for parents were not performed due to parents missing calls and calling back when School Nurse was unavailable

School holidays disrupted routines causing some children delays in their progress.

There were differing levels of parent motivation. Some parents were enthusiastically implementing plans and following recommendations whereas some parents struggled to implement plans as they felt that their child was unable to achieve continence or develop skills in this area.

Differing levels of teachers motivation. Some teachers placed high importance on developing toileting skills, especially if it was one of the childs targets. Some teachers did not see this as a priority.

Some family circumstances meant that it was not appropriate to begin toilet training at that time, for example a new baby or a brereavement.

Staff shortages affected ability to implement plan in school setting.

Teachers who did not attend training did not feel as confident to implement plans.

Recommendations To provide adequate training for both staff and parents regarding toilet training for children with special needs. If there is a paediatric continence advisor in the borough then they could provide this. If not, then funding should be allocated for this to be delivered by an external company such as ERIC. To perform initial assessments jointly ideally with parents, School Nurse, OT, SLT and Teacher.

To create a toileting plan that everybody working with the child is aware of and can be delivered both at home, school and at respite/play centres.

To provide regular telephone follow up, support and advice.

All recommendations fit within the proposed model of care that has been developed and is displayed below.

Proposed Model of care for use in Special Needs Schools London wide

Future Plans

The proposed model will continue to be used within the current setting. It can be developed as services develop and include new assessments as these are continually updated by the Bladder and Bowel care team.

The model will be used locally in the Special Needs Schools, especially when new starters begin in September each year

The model can potentially be distributed further through publication in relevant journals, presentation at conferences and via network groups such as the Royal College of Nursing School Nursing forum.Observations madePersonal observations have been made since the training session in June 2013. Parents and teaching staff appear empowered to continue with the original plans, updating and adapting them as necessary following discussions with the MDT. Some teachers have used their newly gained knowledge to take the lead in developing toilet training plans which they have verified with the School Nurse before implementing and sending to the family. At one school site the School Nurse left the post so the teachers took the lead in developing and implementing plans.

For the children that made most progress, they had been identified as ready when initially assessed. For those who were not showing signs and whose parents wanted to continue regardless, they gained some skills however did not achieve continence.

Parents motivation played a big part. Even if a child was assessed as ready to begin toilet training and plans were put in place in school, if they were not followed at home and the parents did not provide much input then very little progress was made.Related research, guidelines and articles

The Whittington Health Librarian kindly conducted a literature search regarding toilet training and children with special needs. Two relevant National Institute for Health and Care Excellence guidelines were identified and taken into account. Databases searched included: CINAHL, Medline, BNI, EMBASE & PsycInfo and this produced 7 highly relevant articles, and 17 more general articles some of which have been quoted within this report. The results are in Appendix 8 and can be utilised for further reading.Conclusion

This project was originally embarked upon as there was no integrated approach to toilet training within four Special Needs Schools in London. The aims were to ultimately increase childrens independence with toileting, empower parents and staff to implement plans and save money by reducing use of continence products. A grant of 3,500 from the Florence Nightingale Foundation was used in order to meet the project aims. 28 children participated and were assessed using adapted resources from the local Bladder and Bowel care service. Training was provided to the multidisciplinary team and a parent information session was held prior to commencement of toilet training. Questionnaire results proved that staff and parents found the training relevant, helped with their understanding and they would highly recommend it to others. The toilet training results were extremely positive with some children achieving full continence and many others developing new skills. Many of the staff members were pleasantly surprised at the childrens ability to develop new skills when they worked together with parents as a team. For the three children who have achieved continence, a total of 6,400 per year will be saved by the NHS in continence pads that are no longer required.There were some limitations to the success of the project including time, differing levels of motivation, holidays interrupting routines and staff shortages.As a result of this project a proforma has been developed as a model for use across other London Special Needs Schools. This could be distributed to other schools through a variety of methods and adapted for use in the local area.ReferencesERIC, 1999. Bowel and Bladder Management in Children with Special Physical Needs, A Guide for Parents. Bristol: ERIC.

Fleming, E. and MacAlistair, L., 2013, Learning to wee and poo in the right place Continence problems in children with autism, PowerPoint presentation, National Autistic Society, London.

Harris, A., 2004. Toilet training children with learning difficulties: What the literature tells us. British Journal of Nursing,13(13), pp.773-777.Kroeger, K. and Sorensen, R., 2010. A parent training model for toilet training children with autism. Journal of Intellectual Disability Research, June, 54(6), pp.556-567.Roper, N., Logan, W. W. and Tierney, A. J., 2000. The Roper-Logan-Tierney Model of Nursing: Based on Activities of Living. Churchill LivingstoneRoyal College of Nursing, 2006. Paediatric assessment of toilet training readiness and the issuing of products. London: Royal College of Nursing.

Singh, B.K., Masey, H. and Morton, R., 2006. Levels of continence in children with cerebral palsy. Paediatric Nursing, June, 18(4), pp.23-26.Wheeler, M., 2007. Toilet training for individuals with autism and other developmental issues. Texas: Future Horizons.Appendices1. Paediatric AssessmentBladder & Bowel Care Service Paediatric Assessment Form

Patients Details

Name:DOB: NHS No: M/F: Address:

Postcode: Phone: Mobile: Ethnicity: Patients Borough: Camden FORMCHECKBOX Islington FORMCHECKBOX Parents Name:

Child's position in the Family:

GP Contact details:

Professionals involved in Care :

School: School Nurse:

Assessment completed by: Assessment date:

Medical Diagnosis:

i. ii. iii.

Brief Medical History:

Medication, including complimentary medication:

Allergies:

Fluid intakeHow many drinks in 24 hours? What do they drink? Is intake restricted and if so when? Beaker FORMCHECKBOX cup with straw FORMCHECKBOX bottle FORMCHECKBOX sports bottle FORMCHECKBOX

Enteral FeedingFeed: Water:

Diet

Any special diet eaten? Do they eat fruit? Vegetables? Cereals? Any dietary problems?

Food Allergies?

Bowel Habit

Daily: FORMCHECKBOX Alternate Days: FORMCHECKBOX Less Often: FORMCHECKBOX

Constipated: FORMCHECKBOX Diarrhoea: FORMCHECKBOX Soiling: FORMCHECKBOX

Where it occurs: Anywhere FORMCHECKBOX Hides FORMCHECKBOX

Laxatives: Yes FORMCHECKBOX No FORMCHECKBOX

Suppositories: Yes FORMCHECKBOX No FORMCHECKBOX

Enemas: Yes FORMCHECKBOX No FORMCHECKBOX

Type (Bristol Stool Chart):

Development Stage

Has your child ever been dry? Yes FORMCHECKBOX No FORMCHECKBOX

If yes, when did they stop?

Can they use a potty/toilet? Yes FORMCHECKBOX No FORMCHECKBOX

Can they reach the potty/toilet in time? Yes FORMCHECKBOX No FORMCHECKBOX

Has potty training ever been attempted? Yes FORMCHECKBOX No FORMCHECKBOX

Does your child know if they are wet/soiled?

Yes FORMCHECKBOX No FORMCHECKBOX

Are they able to indicate that they are? Yes FORMCHECKBOX No FORMCHECKBOX

Are they afraid to sit on the toilet? Yes FORMCHECKBOX No FORMCHECKBOX

Do they refuse to sit on the toilet? Yes FORMCHECKBOX No FORMCHECKBOX

Are they dry at night? Yes FORMCHECKBOX No FORMCHECKBOX

Wears: nappies FORMCHECKBOX pull ups FORMCHECKBOX underwear FORMCHECKBOX

How many times is the nappy changed in 24 hours?

Communication

How does your child communicate?

Normal speechYes FORMCHECKBOX No FORMCHECKBOX

Limited Speech Yes FORMCHECKBOX No FORMCHECKBOX

Sign languageYes FORMCHECKBOX No FORMCHECKBOX

No CommunicationYes FORMCHECKBOX No FORMCHECKBOX

Other formYes FORMCHECKBOX No FORMCHECKBOX

Behaviour

Does your child have any behavioural problems related to incontinence? Yes FORMCHECKBOX No FORMCHECKBOX

How does your child manage his/her incontinence at school?

How does your child manage his/her incontinence at home?

Any other problems related to incontinence i.e.

Change of school/home: Birth of brother/sister: Death or illness in the family: Marital breakdown:

How bothersome is the wetting/soiling problem

(please tick the appropriate number - 1 being no bother and 10 being very bothersome)

To your child1 FORMCHECKBOX 2 FORMCHECKBOX 3 FORMCHECKBOX 4 FORMCHECKBOX 5 FORMCHECKBOX 6 FORMCHECKBOX 7 FORMCHECKBOX 8 FORMCHECKBOX 9 FORMCHECKBOX 10 FORMCHECKBOX

To you as a parent carer1 FORMCHECKBOX 2 FORMCHECKBOX 3 FORMCHECKBOX 4 FORMCHECKBOX 5 FORMCHECKBOX 6 FORMCHECKBOX 7 FORMCHECKBOX 8 FORMCHECKBOX 9 FORMCHECKBOX 10 FORMCHECKBOX

Brothers/sisters1 FORMCHECKBOX 2 FORMCHECKBOX 3 FORMCHECKBOX 4 FORMCHECKBOX 5 FORMCHECKBOX 6 FORMCHECKBOX 7 FORMCHECKBOX 8 FORMCHECKBOX 9 FORMCHECKBOX 10 FORMCHECKBOX

Mobility

Walks unaided: Yes FORMCHECKBOX No FORMCHECKBOX

If no, give details:

Buggy/wheelchairYes FORMCHECKBOX No FORMCHECKBOX

Able to transfer unaidedYes FORMCHECKBOX No FORMCHECKBOX

Any other problems?

Physio: Occupational Therapy: Orthotics:

Dexterity

Does your child need help pulling down clothes?Yes FORMCHECKBOX No FORMCHECKBOX

Does your child need help cleaning/wiping?Yes FORMCHECKBOX No FORMCHECKBOX

Does your child need help readjusting clothes?Yes FORMCHECKBOX No FORMCHECKBOX

Environment

Toilet location and distance:At Home: At School:

Special equipment i.e. footstool/Ring Reducer/Potty Chair?

Does your child share a room? Yes FORMCHECKBOX No FORMCHECKBOX

Are the family in temporary accommodation?

2. Toileting ChartBladder & Bowel Care Service Toileting Chart

Please follow the individual toilet training plan and complete the chart below so that we can see what your child is doing both at home and school. Record in the 'Nappy column whether the pad/pamts were wet (W) or dry (D), or if the child opened their bowels (B). Record in the 'Toilet' column whether the child did a wee (W) or opened their bowels (B) on the toilet. Each time your child has a drink, record it by putting a tick in the 'Drink' column.

Day 1Day 2Day 3Day 4Day 5Day 6Day 7

Date:

TimeToiletNappyDrinkToiletNappyDrinkToiletNappyDrinkToiletNappyDrinkToiletNappyDrinkToiletNappyDrinkToiletNappyDrink

5am

6am

7am

8am

9am

10am

11am

12am

1pm

2pm

3pm

4pm

5pm

6pm

7pm

8pm

9pm

10pm

3. Toileting Skills Assessment

Bladder & Bowel Care Service Toilet Skills Assessment

Childs Name:

Initial assessment completed by:

Date of Birth: Date of assessment:

DateDateDate

(a) Bladder Function if bladder emptied

1 More than once per hour (Shade in area 1)1

2 Between one - two hourly (Shade in areas 1 & 2)2

3 More than two hourly (Shade in areas 1, 2 & 3)3

(b) Bowel Function if

1 has frequent daily soiling (Shade in area 1)1

2 Does not always have normal formed bowel movements is subject to constipation or diarrhoea (shade in area 2)2

3 Has regular normally formed bowel movements (Shade in areas 1, 2 & 3

(c) If night time wetting occurs

1 Frequently every night (Shade in area 1)1

2 Occasionally some dry nights (Shade in areas 1 & 2)2

3 Never occurs (Shade in areas 1, 2 & 3)3

(d) If night time bowel movements

1 Frequently - every night (Shade in area 1)1

2 Occasionally some clean nights (Shade in areas 1 & 2)2

3 Never Occurs (Shade in areas 1, 2 & 3)3

Independence

(e) Sitting on the toilet

1 Afraid or refuses to sit toilet/potty (Shade in area 1)1

2 Sits with help (Shade in areas 1 & 2)2

3 Sits briefly without help (Shade in areas (1, 2 & 3)3

4 Sits without help for long enough to complete voiding/evacuation of bowels (Shade in areas 1, 2, 3 & 4)4

(f) Going to the toilet

1 Gives no indication of need to go to the toilet (Shade in area 1)1

2 Gives some indication of need to go to the toilet (Shade in areas 1 & 2)2

3 Sometimes goes to the toilet of own accord (Shade in areas 1, 2 & 3)3

(g) Handling clothes at toilet

1 Cannot handle clothes at all (Shade in area 1)1

2 Attempts or helps to pull down pants (Shade in areas 1 & 2)2

3 Pulls pants down by self (Shade in areas 1, 2, & 3)3

4 Pulls clothes up & down without help (Shade in areas 1, 2, 3 & 4)4

other components

(h) Bladder control

1 Never or rarely passes urine on toilet/potty (Shade in area 1)1

2 Passes urine on toilet sometimes (Shade in areas 1 & 2)2

3 Passes urine on toilet every time (Shade in areas 1, 2 &3)3

4 Can initiate a void on request (Shade in areas 1, 2, 3 & 4)4

(i) Bowel control

1 Never or rarely opens bowels on toilet/potty (Shade in area 1)1

2 Opens bowels on toilet sometimes (Shade in areas 1 & 2)2

3 Opens bowels on toilet every time (Shade in areas 1, 2 & 3)3

(j) Behaviour problem that interferes with toileting process (e.g. screams when toileted)

1 Occurs frequently once a day or more (Shade in area 1)1

2 Occurs occasionally less than once per day (Shade in areas 1 & 2)2

3 Never occurs (Shade in areas 1, 2 & 3)3

(k) Wears nappies, pull ups or similar

1 Yes (Shade in area 1)1

2 No (Shade in areas 1 & 2)2

(l) Toilet If

1 Requires toileting aids or adaptations (Shade in area 1)1

2 Uses normal toilet/potty (Shade in areas 1 & 2)2

(m) Response to basic commands (e.g. sit down)

1 Never responds to commands (Shade in area 1)1

2 Occasionally respond to commands (Shade in areas 1 & 2)2

3 Always responds to commands (Shade in areas 1, 2 & 3)3

(n) Diet

1 Refuses/unable to eat fruit/vegetables (Shade in area 1)1

2 Will occasionally eat fruit/vegetables each day (Shade in areas 1 & 2)2

3 eats adequate amounts daily e.g. age+5 =grams fibre) (Shade in areas 1, 2 & 3)3

(o) Fluid intake

1 Drinks poor amount - >50ml/kg per day (Shade in area 1)1

2 Drinks 50ml/kg per day 4 5 drinks per day (Shade in areas 1 & 2)2

3 Drinks 80ml/kg per day 6+ drinks per day (Shade in areas 1, 2 & 3)3

4. Reassessment Checklist

5. Examples of Individual Toileting Plans

Peters Plan (pseudonym to maintain confidentiality)

-From 02/12/13 Peter to wear a pair of pants inside his nappy for one week to get the sensation of feeling wet. School and home to take note of any signs that Peter makes indicating he feels wet.

-The school will provide wet and dry symbols, pants and nappy symbols and a toilet routine visual to use at home and school.

-From 09/12/13 Peter to wear washable pants not nappies AND:

Be taken to the toilet every 1- 1 hours

Peter to sit on the toilet for 10 seconds initially and gradually increase the time and be encouraged to do a wee and/or open his bowels

Peter is given a reward for example foamy soap to wash his hands with or a toy after sitting on the toilet or using the toilet.

-Parents to request advice and support from teacher and school nurse when required.

Nathans Plan (pseudonym to maintain confidentiality) Nathan will wear washable pants or underwear whilst toilet training

Every hour tell Nathan it is time to use the toilet and tell him to sit for up to a minute.

Tell him where you are going and that he needs to wee on the toilet

Use the same language and words, for example wee, toilet and poo.

Follow the same pattern each time

Deal with accidents by saying to Nathan that he is wet or dirty and he needs to get changed in the toilet/bathroom straight away. (Feeling wet or dirty can desensitise a person to discomfort interfering with training efforts).

Use record charts, stick these on the toilet wall

Copy the chart onto the one in Nathans communication book at the end of the day.

6. Parents Questionnaire

Toilet training presentation and workshop

Parent feedback formThank you very much for attending todays toilet training presentation and workshop. We would value your feedback, and kindly ask for you to complete this questionnaire. Your feedback will enable us to develop these sessions further.1) Was this session relevant to you and your child?

12345678910

Not very relevant

Very relevant

2) Did the presentation have the right amount of information for you?

12345678910

To little informationJust the right amount

Too much information

3) Did the session help you develop your understanding of toilet training and give you practical tips to help?

12345678910

Not really

Yes a lot

4) Did you find the questions and answer session with the continence nurse useful?

12345678910

Not really

Yes a lot

5) Would you recommend this session to other parents?

12345678910No

Yes

Any other comments.

7. Toilet Training Feedback Analysis from staff - ERIC

FEEDBACK ANALYSIS

Out of the 40 delegates who attended this seminar 38 completed and returned their feedback questionnaires. All the percentages below have been calculated against the 38 responses.

Q.1The sessions were rated as follows: -

Session A Healthy bladders & bowelsNo.%Option

3079Very useful

616Useful

25Quite useful

00Not at all useful

Session B - Skills required for toilet trainingNo.%Option

2668Very useful

1026Useful

25Quite useful

00Not at all useful

Session C Why some children struggle with toilet trainingNo.%Option

1950Very useful

1745Useful

25Quite useful

00Not at all useful

Session D Equipment & productsNo.%Option

2053Very useful

1642Useful

25Quite useful

00Not at all useful

Session E Developing toileting programsNo.%Option

1642Very useful

2155Useful

13Quite useful

00Not at all useful

Comments included:

Very interesting and useful training

Very interesting with useful information

Really useful. Answered all questions very well everyone excited to put ideas into practice

More information about overcoming struggles with toilet training/behavioural issues

It would be useful to see some examples (real caseloads and challenging situations

Very interesting

Clear structure and practical strategies to support toilet training well presented to cover a variety of diagnoses and needs

Handout of resources Books (available on slide show)

More visual and examples

Very informative but a times felt bombarded with information, probably good idea to have had a 15 min break not 5 for a chance to refresh

More information on communicating with children

Very good. Need a break half through though

Excellent for our students! Fantastic presentation and info to use straight away

Excellent training. Concise, informative with many useful ideas Q.2Would you like to receive ERIC catalogues to hand out to patients?

No.%Option

2668Yes

1026No

25Neither box ticked

Q.3Do you inform parents about ERICs helpline and resources?

No.%Option

25Yes

1745No but all said they would do from now on

1950No comments

Comments included:

During school support groups, family support worker, medical team, class team Not personally as feel medical team would but will do so now

This is all new but will pass info on to parents

Didnt know about it before

8. Literature search results for further readingNational Institute for Health and Care ExcellenceCG99 Constipation in children and young people: NICE guidancePublished 26/05/2010

National Institute for Health and Care ExcellenceCG128 Autism in children and young people: full guidelinePublished 28/09/2011

1. Title: A parent training model for toilet training children with autism.

Citation: Journal of Intellectual Disability Research, 01 June 2010, vol./is. 54/Part 6(556-567), 09642633

Author(s): Kroeger K, Sorensen R

Source: CINAHL

2. Title: Completion of toilet training in children with defecation disorders and concomitant symptoms of autism spectrum disordersCitation: Gastroenterology, May 2012, vol./is. 142/5 SUPPL. 1(S381), 0016-5085 (May 2012)Author(s): Peeters B., Benninga M.A., Noens I.

Source: EMBASE

3. Title: A multidisciplinary functional toileting pathway for children with cerebral palsy: Preliminary analysis.Citation: Clinical Practice in Pediatric Psychology, March 2013, vol./is. 1/1(81-88), 2169-4826;2169-4834 (Mar 2013)Author(s): Millard, Erin, Benore, Ethan, Mosher, Kathryn

Source: PsycINFO

4. Title: Use of parent administered picture activity cards to teach toileting skills in children with autismCitation: European Child and Adolescent Psychiatry, July 2013, vol./is. 22/2 SUPPL. 1(S213-S214), 1018-8827 (July 2013)Author(s): Ramachandram S., Lope R.J.R., Chandran V., Nor N.K., Ismail J.

Source: EMBASE

5. Title: Intensive behavioral treatment of urinary incontinence of children with autism spectrum disorders: An archival analysis of procedures and outcomes from an outpatient clinicCitation: Focus on Autism and Other Developmental Disabilities, March 2013, vol./is. 28/1(26-31), 1088-3576;1538-4829 (March 2013)Author(s): Hanney N.M., Jostad C.M., Leblanc L.A., Carr J.E., Castile A.J.

Source: EMBASE

6. Title: Investigation of a reinforcement-based toilet training procedure for children with autism.

Citation: Research in Developmental Disabilities, September 2002, vol./is. 23/5(319-31), 0891-4222;0891-4222 (2002 Sep-Oct)

Author(s): Cicero FR, Pfadt A

Source: MEDLINE

7. Title: Levels of continence in children with cerebral palsy.Citation: Paediatric Nursing, 01 May 2006, vol./is. 18/4(23-26), 09629513

Author(s): Singh BK, Masey H, Morton R

Source: CINAHL

8. Title: Functional performance in children with Down syndrome.

Citation: American Journal of Occupational Therapy, 01 November 2004, vol./is. 58/6(621-629), 02729490

Author(s): Dolva A, Coster W, Lilja M

Source: CINAHL

9. Title: Behavioral intervention to eliminate socially mediated urinary incontinence in a child with autism.

Citation: Child & Family Behavior Therapy, 01 December 2003, vol./is. 25/4(53-63), 07317107

Author(s): Riccciardi JN, Luiselli JK

Source: CINAHL

10. Title: Continence in cerebral palsy.

Citation: Health Visitor, 01 September 1990, vol./is. 63/9(301-302), 00179140

Author(s): Shaw J

Source: CINAHL

11. Title: Systemic adverse events following botulinum toxin A therapy in children with cerebral palsy.

Citation: Developmental Medicine & Child Neurology, 01 February 2010, vol./is. 52/2(139-144), 00121622

Author(s): Naidu K, Smith K, Sheedy M, Adair B, Yu X, Graham HK

Source: CINAHL

12. Title: Safety of botulinum toxin type A among children with spasticity secondary to cerebral palsy: a systematic review of randomized clinical trials.

Citation: Clinical Rehabilitation, 01 May 2009, vol./is. 23/5(394-407), 02692155

Author(s): Albavera-Hernndez C, Rodrguez JM, Idrovo AJ

Source: CINAHL

13. Title: Relationship of bladder dysfunction with upper urinary tract deterioration in cerebral palsy.

Citation: Journal of pediatric urology, October 2013, vol./is. 9/5(659-64), 1477-5131;1873-4898 (2013 Oct)

Author(s): Gundogdu G, Komur M, Avlan D, Sari FB, Delibas A, Tasdelen B, Nayci A, Okuyaz C

Source: MEDLINE

14. Title: Autism spectrum disorders in children with functional defecation disorders.

Citation: Journal of Pediatrics, September 2013, vol./is. 163/3(873-8), 0022-3476;1097-6833 (2013 Sep)

Author(s): Peeters B, Noens I, Philips EM, Kuppens S, Benninga MA

Source: MEDLINE15. Title: Clinical and urodynamic spectrum of bladder function in cerebral palsy.

Citation: Journal of Urology, October 2009, vol./is. 182/4 Suppl(1945-8), 0022-5347;1527-3792 (2009 Oct)

Author(s): Richardson I, Palmer LS

Source: MEDLINE

16. Title: Correlation between motor function and lower urinary tract dysfunction in patients with infantile cerebral palsy.

Citation: Neurourology & Urodynamics, 2007, vol./is. 26/2(222-7), 0733-2467;0733-2467 (2007)

Author(s): Bross S, Honeck P, Kwon ST, Badawi JK, Trojan L, Alken P

Source: MEDLINE

17.Title: Voiding dysfunction and the Williams-Beuren syndrome: a clinical and urodynamic investigation.

Citation: Journal of Urology, April 2006, vol./is. 175/4(1472-6), 0022-5347;0022-5347 (2006 Apr)

Author(s): Sammour ZM, Gomes CM, Duarte RJ, Trigo-Rocha FE, Srougi M

Source: MEDLINE

18.Title: Urodynamic findings in children with cerebral palsy.

Citation: International Journal of Urology, August 2005, vol./is. 12/8(717-20), 0919-8172;0919-8172 (2005 Aug)

Author(s): Karaman MI, Kaya C, Caskurlu T, Guney S, Ergenekon E

Source: MEDLINE

19. Title: Behavioral problems in children with Down syndrome.

Citation: Indian Pediatrics, July 2005, vol./is. 42/7(675-80), 0019-6061;0019-6061 (2005 Jul)

Author(s): Bhatia MS, Kabra M, Sapra S

Source: MEDLINE

20. Title: Functional performance in children with Down syndrome.

Citation: American Journal of Occupational Therapy, November 2004, vol./is. 58/6(621-9), 0272-9490;0272-9490 (2004 Nov-Dec)

Author(s): Dolva AS, Coster W, Lilja M

Source: MEDLINE

21. Title: Development of bladder control in children and adolescents with cerebral palsy.

Citation: Developmental Medicine & Child Neurology, February 2001, vol./is. 43/2(103-7), 0012-1622;0012-1622 (2001 Feb)

Author(s): Roijen LE, Postema K, Limbeek VJ, Kuppevelt VH

Source: MEDLINE

22. Title: Urologic health in children with down syndromeCitation: Journal of Urology, April 2013, vol./is. 189/4 SUPPL. 1(e75-e76), 0022-5347 (April 2013)Author(s): Brown E., Hogan R., Zhang J., Dinh K., Langston S., Roth C.

Source: EMBASE

23.Title: Autism spectrum disorders and autism spectrum symptoms in children with functional defecation disordersCitation: Journal of Pediatric Gastroenterology and Nutrition, June 2011, vol./is. 52/(E97-E98), 0277-2116 (June 2011)Author(s): Peeters B., Benninga M.A., Loots C.M., Van Der Pol R.J., Burgers R.E., Philips E.M., Wepster B.W., Tabbers M.M., Noens I.L.

Source: EMBASE

24. Title: Psychological differences between children with and without soiling problemsCitation: Pediatrics, May 2006, vol./is. 117/5(1575-1584), 0031-4005;0210-5721 (May 2006)Author(s): Joinson C., Heron J., Butler U., Von Gontard A.

Source: EMBASE

To increase childrens independence with toileting

To empower parents and staff to implement and develop toilet training plans

To increase the knowledge of all those in the multidisciplinary and multiagency teams regarding continence and toilet training

To save money by reducing use of continence products

1

1 or 2 children 47%

3 or more children 53%

Yes 86%

N0 7%

Not Sure - 7%

Yes 27%

No 40%

Not Sure 33%

Yes 73%

No 0%

Not Sure 27%

Yes 50%

No 25%

Not Sure - 25%

EMBED Word.Picture.8

Toilet Training Including Children with Special Needs

11th June 2013

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