I was pleased that Nicola Enoch and I were nominated and achieved second place in the Continence Nurse of the Year category in the BJN Awards 2020. Becoming toilet trained is a developmental skill and a milestone that all parents strive for, yet for some parents, toilet training a child who has additional needs, such as Down syndrome, may feel like a daunting and potentially unachievable task. However, clinical experience has shown us that most children with Down syndrome can become toilet trained at the same age as their peers, yet lack of awareness by their family and a lack of appropriate support from health professionals means that this does not often happen.
While working at Bladder & Bowel UK (BBUK), I was finding that a lot of calls to the BBUK helpline were requests for information about nappies and constipation rather than advice about toilet training. When we discussed toilet training with the families, many said they were told that their child ‘wasn't ready’, so they had not yet even thought about it.
Becoming toilet trained involves being able to accomplish a number of skills and, through experience, we had found that the introduction of an early toilet skill development programme greatly enhanced a child's ability to become toilet trained age appropriately.
Constipation is a common problem in children with Down syndrome and we had found that encouraging early sitting on the potty, once weaning was well established, helped alleviate some of the problems and reduced the incidence of constipation. Interestingly, the parents then reported that after a while their children started to only open their bowels on the potty. These infants were becoming clean and appeared to wait to open their bowels until they were on the potty. This gave us the idea of the early intervention toilet training programme to encourage all children with Down syndrome, not just those with constipation, to start sitting on the potty early on as part of their daily routine.
This approach formed part of the step-by-step programme whereby children are taught the appropriate skills and develop the awareness that enables them to be toilet trained age appropriately. We know that, for most children with Down syndrome, they need to be taught new skills that perhaps typically developing children may assimilate through everyday living. For the child with Down syndrome, it is unrealistic to remove their nappy one day and expect them to have acquired the knowledge, language and understanding around all that toilet training involves.
Parent workshops
The early intervention toileting skill development programme was promoted as widely as possible through study days and parent workshops, and it was at a parent workshop in December 2018 that we realised just how lacking the overall appropriate advice and support for parents was. For example, typically, parents were being told that their 4-year-old child ‘wasn't ready’ to start the toilet-training process and other parents, whose child was non-verbal, were We know that, told to wait until their child gave some indication of being wet or soiled before they started. Many children were automatically being provided with free nappies via their local continence service without undergoing any sort of continence assessment or toilet-training programme being put in place.
Another issue identified was the large number of children with constipation who were either not receiving treatment after being told ‘it was part of Down syndrome’ or were being prescribed laxatives with no ongoing advice or follow-up, which clearly was not resolving the problem.
We therefore needed to find a way to reach out more widely to as many families as possible, to ensure that they were all provided with the correct advice and information. This also fitted in with the NHS Long Term Plan (NHS England and NHS Improvement, 2019), which highlights the need to create genuine partnerships between professionals and patients, enabling them to make decisions and manage their own health. Engagement with families was therefore vitally important.
‘We know that, for most children with Down syndrome, they need to be taught new skills that perhaps typically developing children may assimilate through everyday living’
We then looked at how best to do that because we were limited as to how many parent workshops we could run nationally. Househ et al (2014) carried out a review looking at the benefits and challenges of empowering patients via social media, concluding that social media has a future in health care, particularly with patient engagement and empowerment. Thielst (2011) reported that social media can help patients find information when they are diagnosed with a condition, noting that social media technologies can be used to reduce the utilisation of health services and improve both patient responsibility and acceptance.
We also know that it is what families do at home that can make the difference in the outcome to continence care programmes. By empowering parents with the appropriate advice and support, they are then able to self-manage many problems, including bedwetting, constipation and toilet training. Knowing and understanding what the problem is, having a robust treatment plan and being aware of when to ask for help goes a long way towards improving treatment outcomes (Rogers, 2012).
Social media
We realised that social media was going to be the best way forward in reaching out to as many families as possible. Working with Nicola Enoch from Positive About Down Syndrome (PADS), who had organised the parent workshop, a closed Facebook group was set up. The Facebook page is called DSUK Going Potty!? and membership continues to grow daily, reflecting the need by families to receive appropriate advice and support. The group aims to empower families with children with Down syndrome by informing and appropriately advising them regarding timely toilet training and proactively managing bladder and bowel problems. The group was set up in January 2019 and to date has more than 2000 parent members, as well as several health professionals.
Several national and local Down syndrome Facebook pages feed into the page, so it has a potentially wide reach, providing positive, appropriate information and advice regarding early toilet training and bladder and bowel problems such as constipation. This has proved vital following changes to the roles of school nurses and health visitors, resulting in parents now having limited access to health professionals. Empowering families to identify and resolve constipation and proactively toilet train has led to many success stories, which encourages other families to begin the training programmes.
We suggest a step-by-step approach to help the children develop the appropriate skills, based on the ‘One step at a time’ Australian programme (https://continencevictoria.org.au/one-step-at-a-time/), gradually introduced from around 6-10 months of age, particularly for those children who are having problems with constipation.
A brief overview of the step-by-step programme we suggest that the families follow is presented in Table 1. We have had numerous posts from parents who have since successfully toilet trained their child, and are keen to share their child's success and encourage others. A brief case study of one child is given in Box 1.
| Step | Actions |
|---|---|
| Step 1. Set the scene |
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| Step 2. Develop the skills |
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| Step 3. Identify patterns |
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| Step 4. Use the toilet |
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The success of the potty training Facebook group has led us to develop two further groups, one for children with Down syndrome over the age of 5 years who are struggling with ongoing bladder and bowel problems and a ‘Going for it lockdown style’ toilet training group for children aged 3-5 years.
The latter is for children who were starting nursery and school this September 2020 and who had followed the programme but were struggling with getting out of nappies. Thirty families signed up at the beginning of April, with most of the children successfully starting nursery and school in pants—a very proud moment for everyone concerned.