DSD and disclosure in a medical context
Research type
Research Study
Full title
The Lived Experience of Individuals with a Difference of Sex Development (DSD) Condition Navigating Disclosure in Medical Contexts – An Interpretative Phenomenological Analysis (IPA)
IRAS ID
356923
Contact name
Hazel Learner
Contact email
Sponsor organisation
University College London Hospitals
Clinicaltrials.gov Identifier
179305, Edge Reference number
Duration of Study in the UK
0 years, 8 months, 1 days
Research summary
Difference of sex development (DSD) is a term used to describe many different conditions where the development of the reproductive or sexual characteristics do not follow typical patterns. For many individuals with a DSD condition, past experiences of medical disclosure have been marked by confusion, stigma, and inadequate communication. When information is not conveyed with clarity and empathy it can impact on treatment choices and lead to a disengagement with medical care. Poor disclosure can not only can lead to distress and mistrust in healthcare professionals but the way a person learns about their diagnosis can have a lasting impact on their self-esteem, identity, and mental health.
This study using interpretative phenomenological analysis methodology, will recruit up to twelve participants from long-term follow clinic follow up with the DSD service at UCLH. Individual, semi-structured interviews (of 60-90 minutes) will be conducted to identify key themes related to disclosure. The research will offer important perspectives for clinicians, and DSD support networks, in providing more empathetic, patient-centered care.
REC name
London - South East Research Ethics Committee
REC reference
26/LO/0055
Date of REC Opinion
29 Jan 2026
REC opinion
Further Information Favourable Opinion