The Lived Experience of
Kallman syndrome/CHH

Led by Dr Samantha Dockray

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Recruitment on this project is paused.

With sincere gratitude to all the people who have been in contact, we are pausing the recruitment on this project for now as we have many participants.  We'll keep you updated, and hope you'll be interested in future projects!  

The lived experience of Kallmann syndrome/CHH is rarely represented in the research literature, with a few notable exceptions (e.g.,  Dwyer, Smith & Quinton, 2019).  Understanding how people may experience receiving a diagnosis, how they may consider treatment options and how they reflect on their experiences may contribute to their psychosocial development across their life.  This is very important to understand, in part as it can be useful to inform provision of supports and services.  It will also highlights the voice of the person with Kallmann syndrome/CHH within conversations in research, and about services and support needs. 

 

​This project aims to record the experience of people with Kallmann syndrome/CHH, and consider these through a lens of psychological theory and an applied approach.

 

​We are currently recruiting people to participate in this study.  We are seeking people who have Kallmann syndrome/CHH/, including people who may not have a formal diagnosis. The information sheet that describes what is involved in participating is linked here.  People who are interested to find out more, or participate in the study can contact Samantha by email.

 

​The project is in collaboration with Dr Andrew Dwyer (Boston College) and Mr Neil Smith (Kallmann syndrome patient advocate).