Understanding caregiver experiences of sleep management difficulties in individuals with Smith-Magenis syndrome (SMS)

Understanding caregiver experiences of sleep management difficulties in individuals with Smith-Magenis syndrome (SMS)


This online survey will take approximately 45 minutes to complete. If you would like to take a break, please do not close your browser or exit the survey. Please leave the webpage open on your browser and return to the survey at a later time.

 

Researchers at the Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham are inviting parents/caregivers of children/adults with SMS to take part in a study entitled ‘Understanding caregiver experiences of sleep management difficulties in individuals with SMS’. This research is funded by Cerebra and the SMS Foundation UK.

 

The first stage of the study involves completion of an online survey (approximately 45 minutes duration), which will provide us with information about your experiences of sleep management strategies, access to services and overall impact of sleep difficulties on the family. If you feel it is appropriate you may wish to discuss the research with your child/person you care for with SMS before a decision is made about taking part. A paper version of the online survey is available upon request. Please contact Stacey Bissell at S.L.Bissell@bham.ac.uk or call 0121 414 9775 to request a paper version. 


 

 

Instructions for completing the online survey:


1. Press 'next' to enter the password that you were given in your invitation email/you have seen advertised online. If you have not been given a password, please contact Stacey Bissell at S.L.Bissell@bham.ac.uk or call 0121 414 9775.

 

2. Once you have entered your password, you will then be shown information about the study. If you decide you would like to take part, you will be required to fill out an online consent form.  

 

3. The online survey should only be completed once by the main caregiver (e.g. not completed multiple times by several caregivers concerning the same individual with SMS).  

 

4. Please do not press the back button on your browser when completing the survey, as your answers will not save properly.  

 

 

This online survey will take approximately 45 minutes to complete. If you would like to take a break, please do not close your browser or exit the survey. Please leave the webpage open on your browser and return to the survey at a later time.