Improving Continence in Children and Young People with Neurodisability

The University of Exeter and ICoN (Improving Continence for children and young people with Neurodisability) are conducting research to assess how professionals treat children with special educational needs and disability to help them manage toileting.

The research is aimed at health professionals, school and social care staff, as well as young people and parents and carers.

Here is a link to the survey, which is part of a major research study to improve continence/toileting for children and young people with special educational needs or disability.

Becoming continent requires knowing you need to go, finding an appropriate place, being able to access that place, preparing, going, cleaning, and redressing. Children with special educational needs or a disability may be slower to learn to manage going to the toilet, or they may need extra help. Interventions to improve continence include toilet training programmes, equipment, medicines and surgery. Currently it is uncertain which ways are most effective. The National Institute for Health Research (NIHR) has commissioned research to find out how continence is assessed and managed in the NHS for children with special educational needs or disability, and families’ experience of treatments.

The research is led by Professor Morris at the University of Exeter Medical School with a team that includes parent carers, researchers and clinical specialists. The study is supported by ERIC, The Children’s Bowel & Bladder Charity.
The research involves online surveys with will consult health professionals, parent carers, young people, and school and care staff. This will help us understand how families and clinicians assess children’s continence capabilities, which treatments clinicians recommend, and what it’s like for young people, families, school and care staff to use the approaches recommended by the NHS to improve continence.

Julia Melluish, a parent carer and Co-investigator, said: “I am particularly motivated to be part of this research because of my personal experience and because I know the massive impact on the child and family’s life and cost of products and services to the NHS.”
Professor Chris Morris, Chief Investigator, said: “We are pleased to be addressing this often neglected topic in health research that is central to the everyday lives of children and families. We want to learn from parents, young people, NHS staff, and school and social care staff about their experiences.”

Alongside the surveys we are carrying out a systematic review. This will bring together the best published research evidence that has already been done on continence in children and young people with special educational needs or disability. Findings from the surveys and systematic review will be brought together, and we will consult with families and professionals for their impressions of what has been found. Following this, discussions will take place about gaps in the evidence and potential priority questions to inform future research.