FAQs

Here is a list of frequently asked questions about the ICoN study. If your question is not answered here, please don’t hesitate to get in touch with us and we will be more than happy to answer any questions you may have.

 

 

What is ICoN?

The ICoN study aims to find out how NHS staff assess and treat children with special educational needs and disability to help them become continent. We will do this using an online survey and a systematic review. We want to hear from families, young people, NHS staff, and school and social care staff about their experiences

The ICoN study aims to find out how NHS staff assess and treat children with special educational needs and disability to help them become continent. We will do this using an online survey and a systematic review. We want to hear from families, young people, NHS staff, and school and social care staff about their experiences

What is Neurodisability?

Neurodisability describes a group of congenital or acquired long-term conditions that are attributed to impairment of the brain and/or neuromuscular system and create functional limitations. A specific diagnosis may not be identified. Conditions may vary over time, occur alone or in combination, and include a broad range of severity and complexity. The impact may include difficulties with movement, cognition, hearing and vision, communication, emotion and behaviour.

What is a systematic review?
A systematic review summarises the results of available carefully designed healthcare studies and provides a high level of evidence on the effectiveness of healthcare interventions. Judgments may be made about the evidence and inform recommendations for healthcare. The ICoN systematic review will bring together all the best research evidence that has already been done on continence in children and young people aged 25 and under with special educational needs and/or a disability.
What is the survey about?

The survey will be a questionnaire conducted online with four different groups; parent carers, young people, health professionals, and school and care staff. The survey aims to find out how NHS staff assess and treat children with special educational needs and disability to help them manage toileting, and how families experience assessments and treatments for toileting.

How can I take part?

We would like parent carers, young people, education staff and health professionals to complete an online survey about toileting for children and young people with special educational needs and/or a disability. Please sign up to receive the survey on the ‘taking part’ page of this website. You can also find further information about the survey in the information sheets on the ‘survey’ page.

Who is funding ICoN?

This study is funded by the National Institute for Health Research (NIHR) Health Technology Assessment Programme (project reference 17/20/02) in order to find out how toileting capability is assessed and managed in the NHS for children with special educational needs and disability. We acknowledge support from NIHR Collaboration for Leadership in Applied Health Research and Care South West Peninsula (PenCLAHRC). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.