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Research participants needed!

Posted By Donna Wicks, May 10, 2018

Please note that this research is looking for brothers or sisters of people who have been diagnosed with HSD or hEDS. The brother or sister must NOT have a diagnosis. This is a fantastic opportunity for us to learn how siblings experience life with a brother or sister with HSD or hEDS. The HMSA has run focus groups for siblings and we know that this research is badly needed. It will help give siblings a voice!

 Department of Psychology,
City University, London

Do you have a sibling with Joint Hypermobility, Hypermobility Spectrum  Disorder or Hypermobile Ehlers-Danlos Syndrome?

Would you like to talk about your experiences?

We are looking for volunteers to take part in a study on
 sibling experiences of Hypermobility Spectrum Disorder and Hypermobile Ehlers-Danlos Syndrome (formerly Joint Hypermobility).

You would be asked to: take part in a one-to-one interview on your experiences as a sibling of someone who has these conditions.

Your participation would involve 1 session which would last approximately 60-90 minutes.  Interviews will be conducted in English and you will remain anonymous.

Your time will be greatly appreciated.

For more information about this study, or to take part,
please contact:
Sharina Nathan or Dr. Zoe Boden
Psychology Department
on

0207 815 5814

or
Email: Sharina.Nathan@city.ac.uk

This study has been reviewed by, and received ethics clearance
through the Psychology Research Ethics Committee, City University London [PSYETH (P/L) 17/18 108].

If you would like to complain about any aspect of the study, please contact the Secretary to the University’s Senate Research Ethics Committee on 020 7040 3040 or via email: Anna.Ramberg.1@city.ac.uk

 

Research Brief

Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers-Danlos Syndrome (hEDS), (recently reclassified from Joint Hypermobility and Ehlers-Danlos Syndrome, Hypermobility Type) are conditions which are widely underdiagnosed due to a lack of awareness and knowledge by professionals.

Research is available on the experiences of people with the conditions, but we are not yet aware of the experiences of siblings of people with HSD or hEDS.

This study is interested in sibling experiences of the conditions.  This research aims to increase awareness of the conditions, understand siblings’ experiences and inform professionals from various fields, how they can support siblings, in addition to giving siblings a voice.

The study will involve approximately 60-90 minutes of a one-to-one interview, which will be digitally audio-recorded.  Recordings will only be used for the purpose of analysing data and will be deleted upon submission of the researcher’s thesis.  The study will be undertaken as part of the requirements for the Professional Doctorate in Counselling Psychology at City, University of London.


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