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The Mobility Study: Numbers and needs of children and young people in the UK with a disability and mobility difficulties

Background

There is a lack of information on disability and particularly disability with mobility difficulties among children and young people in the UK. Many charities and researchers refer to a study from 2010, but this provides little information on nature of disability and is now outdated. There is also little understood about the experiences, needs, and support requirements of children and young people with mobility difficulties and their families. Organisations such as Motability therefore have limited information on the size of the population in need of their services, the nature of their conditions, their geographical distribution and trends through time, making it difficult to plan and target current and future services. They also lack in-depth information on needs, experiences and barriers to support. While this information would directly help Motability to plan and target services, it would also be of wider use, to other organisations serving this (or parts of this) population, to national and local government, to the NHS for service planning and for those campaigning for better statutory support.

Research Aim and Overview

Aim: To better understand the numbers, demographics, geographical distribution and needs and experiences of children and young people with mobility difficulties.

This is a two-year study funded by the Motability Foundation. It has two workstreams:

1. Workstream 1 will use survey data and routinely collected healthcare data to:
   1. Estimate the size of the population of children and young people with a disability and mobility difficulties
   2. Describe the demographic profile (eg age, ethnic group, deprivation category, sex) and geographical distribution of this population
   3. Describe the mix of conditions in the population and how these vary through time and across regions
   4. Produce projections of future size of this population
2. Workstream 2 will use qualitative interviews to:
   1. Understand experiences of being a child or young person in the UK with a disability and mobility difficulties, including barriers and best practice
   2. Understand needs in this population, including those that are not met and should be added to services provided by government or charity

The findings from the two workstreams will be brought together into a single report made publicly available, as well as policy briefings and plain English summaries. The results will also be disseminated through peer-reviewed journal articles and conference presentations.

PPI Involvement

We have worked closely with our Family Advisory Board (FAB), which is an advisory board of parents and other adult family members of children with a life-limiting condition including parents of a child on the development of this application before applying for funding and since funding has been secured. The FAB has advised on background issues encountered by this population and on recruitment strategies and has reviewed information provided to participants. They will also advise on interpretation, presentation and dissemination of findings.