Welcome Back
This information page is only for those carers who previously took part in the ‘Coronavirus and People with Learning Disability Study’ and who have been sent a link to this page by staff at Manchester Metropolitan University.
Thank you for your interest in taking part in the ‘Lives of People with Profound and Multiple Learning Disabilities in the UK’ study.
What is this survey about?
Previously you took part in the ‘Coronavirus and People with Learning Disability Study’. At that time you gave us permission to contact you about future research. One of the learnings from the COVID-19 research was how important it is to understand the unique needs of people with profound and multiple learning disabilities (PMLD) aged 14 or older, and the needs of their carers.
The survey may take up to 45 minutes to complete, and you can stop for breaks at any time and return, using the same link, to where you left off. If you change your mind about taking part, you can stop and exit the survey. Carers must be over 18 years of age to take part. Everyone who completes the survey will be offered a chance to be included in a prize draw, and ten winners will each receive a £50 gift voucher. The draw will be held when the survey is finished.
Who are we?
We are the same research team from the COVID-19 study (including researchers from the University of Birmingham, Manchester Metropolitan University, the University of South Wales, the University of Glasgow, and Queens University Belfast). This research is funded by the Baily Thomas Charitable Fund.
Comparison with the previous survey
If you do decide to take part in this research, we would like to compare how things are now with your responses to the COVID-19 study survey. We will only do this with your consent. The responses to the previous surveys are managed at Manchester Metropolitan University (MMU). The same researchers from MMU are involved in this survey, but data is now being managed at the University of Birmingham. If you are happy for us to be able to compare with past surveys, we would need your permission for MMU to share your information with us at the University of Birmingham. You do not have to give your permission for your information to be shared and compared, and your decision will not impact on any other aspect of the survey.
How will my information be stored and how will you look after it?
For the new survey, your data will be managed at the University of Birmingham and stored on a secure password protected server for 10 years. The University never sells personal data to third parties.
The only instance in which we may have to breach confidentiality is if you were to disclose that you or somebody else was at risk of harm. In this circumstance, we would have a legal responsibility to pass this information on to appropriate services. Where possible, we would endeavor to discuss this with you first and ensure you are aware of available support services.
Who can I contact about this study?
If you have any questions about the research, please contact:
Dr Peter Mulhall ([email protected])
If you have any comments or concerns about the research you can talk to the Principal Investigator: Professor Jill Bradshaw ([email protected]).
If you want to complain about the research, you can contact:
The Ethics Team ([email protected]).