Due to copyright issues, an electronic copy of the thesis must be ordered from the faculty. For the faculty to have time to process the order, the order must be received by the faculty at the latest 2 days before the public defence. Orders received later than 2 days before the defence will not be processed. After the public defence, please address any inquiries regarding the thesis to the candidate.
Trial Lecture – time and place
See Trial Lecture.
Adjudication committee
- First opponent: Professor Katrina Roen, University of Waikato,
- Second opponent: Professor II Anna Nordenström, Karolinska University Hospital,
- Third member and chair of the evaluation committee: Professor Bjørn Morten Hofmann, University of Oslo
Chair of the Defence
Professor Randi Ulberg, University of Oslo
Principal Supervisor
Senior Consultant Anne Wæhre, OUS - Oslo University Hospital
Summary
Differences of sex development (DSD)/intersex represent a heterogeneous group of rare and complex congenital conditions that lead to a diverse development of the genitals, hormones, or chromosomes. This encompasses varied diagnoses, medical severities, psychological impacts, treatments, and follow-ups. DSD/Intersex is associated with stigma and little knowledge in society. Decisions about surgery for children and young people with DSD/Intersex is a controversial topic that are debated internationally and in which both healthcare professionals (HCPs), activists and human rights institutions have become involved.
This thesis explores the lived experiences of individuals with DSD/intersex and the challenges confronted by HCPs working with them. It delves into everyday hurdles, disclosure, stigma, and dilemmas surrounding DSD/intersex-related surgeries.
The study comprises in-depth qualitative interviews with 26 Norwegian individuals born with DSD/intersex, and focus group interviews with 14 HCPs. Participants represent diverse backgrounds and experiences, with age ranging from adolescents to adults. The research adopts a qualitative approach with interpretive phenomenology and reflexive thematic analysis.
Three papers explore how stigma affects the lives of DSD/intersex individuals and complicates decision-making regarding related surgeries. Adults face a struggle between concealing their condition and seeking acceptance. Adolescents experience stigma concerning sexual health, impacting intimate relationships. HCPs highlight dilemmas in guiding parents and patients through surgical decisions, driven by fear of stigma and lack of evidence-based practices.
Stigma persists in DSD/intersex contexts, necessitating increased comprehension and destigmatization. The study advocates for multidisciplinary follow-up for adults with DSD/intersex in Norway, emphasizing mental health support. Furthermore, it underscores the importance of research into the outcomes of DSD/intersex-related surgeries.
Additional information
Contact the research support staff.