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Improving continence survey results published

Improving Continence in children and young people with Neurodisability (ICoN)

New publication about the survey findings


We are pleased to share the latest paper from the ICoN study in the BMJ Paeds Open Journal.

The paper led by Dr Helen Eke and Sue Ball describes findings from the national survey we undertook with families and NHS, school and social care staff.

Research to evaluate the ways to improve continence for children with special educational needs and disability was 7th in the Top 10 research priorities  voted for by families and clinicians. Toileting is such a fundamentally important topic, especially for families, but often neglected by researchers.

The results highlight the need for further research around acceptability of interventions to improve continence without compromising quality of life, and the importance of individualised assessment. The lack of adequate and accessible public facilities, highlighted by respondents as a barrier to toileting, emphasises the need for more specialist facilities such as ‘Changing Places’ toilets.

The paper is published in BMJ Paediatrics Open and is free to access

The full report, which also included a systematic review of the effectiveness of interventions to improve continence is published in the NIHR Library Health Technology Assessment 2021: 25:73 

More info about the ICoN study

This project was funded by the NIHR Health Technology Assessment Programme (award ID: 17/20/02). and supported by the NIHR Applied Research Collaboration South West Peninsula. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.