Information about this study

Thank you for your interest in this research study. Please take your time to read the following information to help you understand why the research is being done and what it will involve. Take your time to decide whether or not you wish to take part.

What is this study about?

Little is known about what adults with cerebral palsy think about physiotherapy services in the UK and Ireland. There is also a lack of information about the reasons why adults with cerebral palsy access services, how they access services and what treatment they receive. This study aims to:

  • identify the reasons why adults with cerebral palsy seek physiotherapy services
  • identify what physiotherapy treatment and management adults with cerebral palsy currently receive
  • explore how adults with cerebral palsy access physiotherapy (e.g. referrals, waiting times, funding)
  • record relevant self-reported health indicators that may inform the development of physiotherapy services (e.g. pain, falls, surgery)
  • understand what adults with cerebral palsy value about physiotherapy services and what could be improved

This study will provide data from Ireland and the UK about the strengths and limitations of physiotherapy services for adults with cerebral palsy. This information may lead to further studies to understand the main issues in more detail, and to investigate key areas of concern. The data will provide an overview of physiotherapy-relevant issues faced by adults with cerebral palsy.

Who is organising this study?

This study is an unfunded collaboration between researchers at Brunel University London (Dr Cherry Kilbride, Dr Jennifer Ryan and Dr Betty Cassidy), the Royal College of Surgeons in Ireland (Dr Jennifer Ryan) and Gemma Cook, specialist neuro-physiotherapist. 

Who can take part?

Adults with cerebral palsy of any type or severity who are 18 years of age or older.

What does taking part involve?

If you agree to take part, you will be asked some questions about:

  • yourself (e.g. gender and age)
  • your cerebral palsy
  • your mobility
  • your experiences of physiotherapy and physiotherapy services
  • your general health.

It would really help us if you could answer all questions. You can click on the 'prefer not to say' option if you don't want to answer a question. If you decide to stop taking part at any point simply stop completing questions and shut down your browser.

Whether or not you decide to take part will have no bearing on the physiotherapy services you receive or your physiotherapy care. 

How long will the questionnaire take?

The questionnaire should take approximately 20 minutes to complete.

What are the benefits of taking part?

There will be no direct benefit for you. However, by taking part you will help us learn more about physiotherapy and physiotherapy services from the perspective of adults with cerebral palsy. We hope that this study will inform future physiotherapy service provision but we cannot guarantee that this will be the case in the NHS or for any other physiotherapy service provider.

Are there any risks associated with taking part?

We don't think there are any significant risks from taking part. We have used standard processes to protect your identity. All information collected in this study will remain confidential and will be held securely using password protected computers. 

What if something goes wrong?

It is very unlikely that anything will go wrong but if you are harmed by taking part in this research study, there are no special compensation arrangements. If you are harmed due to someone's negligence, then you may have grounds for legal action but you may have to pay for it. Please contact Professor Peter Hobson, the Chair of Brunel University Research Ethics Committee (peter.hobson@brunel.ac.uk) if you would like further information about the insurance arrangements that apply to this study.

What about my privacy and confidentiality?

All questionnaires will be completed anonymously; your identity will not be known by the researchers.

Direct quotations from your answers may be used by the researchers in the writing up of the research report but these will be anonymous, nobody will know who has said the words that are quoted.

The anonymised data collected in the questionnaire will be stored securely for 10 years at Brunel University London.

At the end of the questionnaire there is a question that asks whether you would be interested in taking part in other planned similar studies. If you are interested in hearing about these studies please send an email to the email address provided. This information will be stored separately and securely on a password protected computer at Brunel University for a maximum period of three years. There is no obligation to take part in other planned studies if you express an interest at this stage.

How do I take part?

Your participation is entirely voluntary. You do not have to take part.

After reading this information, and if you are happy to take part in this study, please click 'yes' at the bottom of this page. By doing this you are giving your consent to participate. The questions will then be displayed on the screen. If you do not want to take part please click on 'no'. This will take you directly to the exit page of the questionnaire.

What will happen to the results?

The results of the study will be published in academic journals and presented at conferences. Individual participants will not be identifiable from any report or publication, but anonymised direct quotations will be used in presenting and publishing the results. If you would like to request a summary of the results an email contact is provided at the end of the questionnaire. 

How have patients and the public been involved in the development of this study?

Patients and the public have been involved in helping develop the research questions, and have advised on the information provided here, and the structure and questions included in this questionnaire.

Who has reviewed this study?

All research is looked at by an independent group of people called a Research Ethics Committee. This study has been reviewed and given a favourable opinion by Brunel University Research Ethics Committee (reference number 11389-LR-Dec/2018- 15508-1, and 11389-A-Feb/2019- 18078- 1). 

Brunel University London is committed to compliance with the Universities UK Research Integrity Concordat (https://www.universitiesuk.ac.uk). You are entitled to expect the highest level of integrity from our researchers during the course of their research. 

What if I have further questions?

If you have any questions about this study please contact: Dr Cherry Kilbride at Brunel University London (cherry.kilbride@brunel.ac.uk).

Concerns and Complaints

If you wish to raise concerns or to complain about the conduct of the study please contact the research team via Dr Cherry Kilbride at Brunel University London (cherry.kilbride@brunel.ac.uk) or Professor Christina Victor, Chair of the College of Health and Life Sciences Research Ethics Committee, Brunel University London. Email: christina.victor@brunel.ac.uk 

If you have any specific concerns about the physiotherapy you have experienced, or if you wish to make a complaint, please contact the complaints department of your NHS provider, or the Health and Care Professions Council (http://www.hcpc-uk.org/). If you attended the Bobath Centre you can also contact Chris Barber, Director, Bobath Centre London (chris.barber@bobath.org.uk).

Date: 26 February 2019  Version Number 2_amended

 

I consent to participate in this survey Required