Exploring the effects of growing older with cerebral palsy and use of healthcare services

Richard_Scope

ALTHEA Study

Living Healthy Lives: Exploring the effects of growing older with cerebral palsy and use of healthcare services across the life course

Online Survey for Adults with CP

Are you an adult who identifies as having Cerebral Palsy (CP)?

Please share your experiences with us. This will help us to improve our understanding of the effects of growing older for men and women with CP.

Two in 1000 live births result in CP, which is caused by damage to the infant brain. The original brain injury does not change as people with CP age. However, the physical effects of the condition can change over time. Despite this, UK healthcare provision is primarily directed towards children with CP and not at adults. There is very little medical understanding of the effects of ageing on people with CP, or how their healthcare needs and use of services may change as they grow older. The CP community is now one of the largest groups of people with lifelong impairments in the UK, with a life expectancy comparable to non-disabled people. This means that having a fuller medical understanding of the effects of ageing on people with CP, and how this affects their healthcare needs, is crucial.

This survey has been designed by researchers at the University of Nottingham and University of Newcastle together with representatives from the CP community (who form the ALTHEA study team). It is for UK adults who identify as having CP. The survey covers themes such as mobility, balance and falls, fear of falling, dexterity, fatigue, pain, speech, swallowing difficulties, mental wellbeing, health maintenance and self-care, and rehab and healthcare usage.

By completing the survey, you will be contributing to our understanding of the effects of CP, what this means for healthcare needs and required access to services, and how these change as people with CP progress across the life course. Your valuable answers will help healthcare and rehab professionals to identify and meet the needs of adults with CP. Please be as honest as you can. Please click on the following link to complete the survey:

https://meded.onlinesurveys.ac.uk/althea-project-cerebral-palsy-survey

In the survey, you can choose the answers by clicking the appropriate option. You can pause at any time and come back later by pressing the ‘finish later button.

L_Volunteer

Thanks @Richard for another important post. Hopefully, it will help lots of our community members. It sounds interesting