Discussion
This study explored the use, availability and acceptability of continence interventions for children and young people with neurodisability. Difficulties with implementing interventions identified by parent carers were consistent across clinical groups, reporting that the child was not ready, unable to learn or had inadequate understanding. SSC reported capability and time of the parent carer and lack of consistency of support across environments as key difficulties. Similarly, an earlier study has highlighted the importance of parent training as a key aspect of toilet training.14 The lack of adequate and accessible public facilities, highlighted by respondents as a barrier to toileting, emphasises the need for more accessible and/or specialist toilets; ‘Changing Places’ toilets are an example which provide necessary equipment and appropriate space in a clean and safe environment to support people with physical disabilities when outside home.14
Children and young people were generally unhappy about using many toileting interventions, particularly diets or catheter/bowel washouts. They also reported that using the toilet at home was preferable to toilets in other environments, perhaps due to inadequacy of other facilities as highlighted by SSC, and the important role the home plays in providing privacy for children and young people with disabilities.15 A review by Brazzelli et al also emphasised how medical or behavioural interventions can be upsetting for children and young people and therefore acceptability should be a key consideration in provision. Early introduction of these interventions has been shown to significantly improve acceptability to both children and young people and parents,16 and as many children and young people with neurodisability may not reach a level of understanding or willingness or reach a level of developmental ability to allow them to achieve continence, early education of parents and introduction of continence strategies is important. Our survey results only touched on acceptability of interventions, and this is an area that warrants further research.17
In contrast to the lack of acceptability of interventions indicated by children and young people, SSC said that diet and fluid intake advice, behavioural interventions, physical aids and continence products were easy to implement. Parent carers and SSC also reported continence products as easy to use, and HPs reported that they were typically provided free of charge, as recommended in National Health Service guidelines on managing incontinence in children with neurological disability.18 Some HPs, SSC and parent carers, however, did indicate that products were not free in their area, with many HPs also suggesting that provision of products was a barrier to achieving continence. Containment products do not necessarily improve continence in the same way as medical or behavioural-based toilet training interventions do, which aim for the child to become ‘clean and dry’. Impairment of children and young people with spinal cord pathology however may mean achieving continence is not a realistic goal and therefore the use of continence products is necessary, which can be at a considerable cost if not provided through health services.10 18 Recent research highlighted that provision of continence pads is inadequate and ad hoc,19 20 perhaps due to the influence that commissioning and funding arrangements have on provision, as highlighted in the HP survey. Research has also shown that children in low-income families are four times more likely to be urinary incontinent than children in high-income families,21 so those families who cannot afford continence products more likely experience compromised comfort and dignity.
Waiting times and funding were highlighted as influencing implementation of interventions. HPs had divided opinions on acceptability of waiting times to receive support and reported a lack of funding and dedicated services impacting provision. Similarly, parent carers reported variable waiting times and described difficulties accessing appropriate support. This is a key finding as coupled with a lack of continence product provision, it likely impacts the quality of life of the child and their family; similar findings were highlighted in studies of paediatric referrals for toileting support.22 23 Research by Kroeger and Sorensen-Burnworth24 emphasised that incontinence is a significant limiter of quality of life for those with developmental disabilities and difficulties in accessing adequate support in a timely manner are likely to significantly amplify the impact. Early intervention programmes can enable children to learn and develop age-appropriate toileting skills; however, age-related criteria in many areas for referral mean that opportunities for early intervention may be missed.
Strengths of an online survey methodology included the potential to reach a large, geographically and demographically diverse sample, at low cost and ease for participants, as demonstrated in other studies.25 26 Our surveys were developed and piloted with a diverse range of relevant stakeholders, parent carers and young people with neurodisability, ensuring that questions were relevant. Limitations included: the registration process led to potential delays in responses and risk of participants entering contact details incorrectly; partial response, perhaps due to the length of the survey; and responses were limited to those willing and able to use an online method. While there was an option for children and young people to have help to complete their survey, there was still a requirement for them to be able to express their feelings/experiences, meaning that only those with sufficient developmental ability to self-report were captured. Parent carers were not asked in the survey to report if their child had sufficient developmental capacity to adhere to an intervention. Therefore, where parent carers have reported their child’s lack of willingness as a difficulty in helping them to use toileting methods, it is not possible to distinguish whether the child they are reporting about has sufficient developmental capacity to be willing or not. Other limitations included that although data presented are from across England, the South West is over-represented, with this region having the largest proportion of respondents out of all of the regions, for all surveys. The survey findings may not adequately reflect variation in service provision and experience by locality, so can therefore only provide a snapshot of current practice. Overall, 93% of parent carers and children and young people who completed the surveys identified themselves as white, which is higher than the current census data in which 81.7% of usual residents in England and Wales identified as being in the white ethnic category.27 Finally, surveys were completed prior to the COVID-19 pandemic, so findings may be different when restrictions placed on health services during the pandemic are considered.
The survey findings highlighted perceived ability of the child and lack of adequate facilities as key factors affecting implementation of toileting interventions for children and young people with neurodisability. This emphasises the requirement of proactive and timely individual assessments of need, to facilitate the introduction of an appropriate individualised toileting skills development programme, to give the children and young people who have the appropriate physical and developmental ability the opportunity to become toilet trained or at least clean and dry at the same age as their typically developing peers. Previous guidance and research have also highlighted this need.24 28
The impact of incontinence on quality of life has previously been highlighted24 29 and our findings reinforce the need for further research around availability and acceptability of toileting interventions to adequately support children and young people with neurodisability. Effectiveness of interventions is likely to impact opinions of acceptability; while the surveys gathered some information on perceived effectiveness,10 further evidence would add to the knowledge around appropriate incontinence support for children and young people with neurodisability.