Understanding sexual health concerns among adolescents and young adults with differences of sex development: a qualitative study

ABSTRACT

Purpose

Differences of sex development (DSD) are congenital conditions that involve variations in individuals’ sex chromosomes, genes, external and/or internal genitalia, hormones, and/or secondary sex characteristics. This study sought to elucidate the experiences of adolescents and young adults living with DSD by focusing on their experiences of intimacy and sexual health.

Methods

An interpretative phenomenological research design was adopted. Semi-structured qualitative interviews were conducted with 11 Norwegian adolescents and young adults aged 16–26 years who had five different DSD conditions. The interview findings were analysed by means of a reflexive thematic analysis.

Results

The participants reported feeling different, both in terms of how their body functioned and how their body looked. Lack of knowledge increased this feeling of differentness. Moreover, lack of everyday language with which to talk about intimacy and sexual concerns resulted in the participants feeling stigma. Anticipating stigmatization and lacking everyday language complicated the participants’ communication regarding their DSD and sexual health.

Conclusions

The sexual experiences of adolescents and young adults with DSD are diverse. Fear of stigmatization and lack of everyday language complicate communication with healthcare professionals and others. Understanding their unique needs is crucial to helping individuals achieve good sexual health.

KEYWORDS:

• Disorders of sex development
• differences of sex development
• intersex
• sexual health
• stigma
• communication

Supplemental data

Supplemental data for this article can be accessed online at https://doi.org/10.1080/17482631.2023.2204635.

Acknowledgments

The authors would like to thank all the participants for sharing their experiences and their openness to talk about very personal matters. The four members of the reference group, Ellen Iren Klepaker, Oda Gadderud, and two members who wish to remain anonymous, all contributed with invaluable feedback throughout the research process. Special thanks to the health professionals at Oslo University Hospital and Haukeland University Hospital in Norway who were willing to help with recruitment. We would also like to thank our colleagues at the Center for rare disorders, Norway, and to the Turner Syndrome Association Norway, for the collaboration and sharing their knowledge throughout the research process.

Disclosure statement

No potential conflict of interest was reported by the authors.

Authors’ contributions

LM contributed to the conceptualization, recruitment of participants, methodology, interviewing, analysis, writing-original draft, and writing-review/editing.

SS contributed to the conceptualization, methodology, analysis, writing-original draft, writing-review/editing, and writing the application for funding (Foundation DAM).

LF contributed to the conceptualization, methodology, interviewing, analysis, writing-original draft, and writing-review/editing.

AW contributed to the conceptualization, recruitment of participants, methodology, analysis, writing-original draft, writing-review/editing, and writing the application for funding (Foundation DAM).

All authors read and approved the final manuscript. All of the co-authors approved the submission of this work for publication.

Data availability statement

Given the qualitative nature of this study, the generated datasets are not publicly available due to participant confidentiality issues.

Additional information

Funding

This project was funded by Foundation Dam (grant number: 2020/FO299085).

Notes on contributors

Line Merete Mediå

Line Mediå RN, is a PhD student at the Faculty of Medicine, University of Oslo, Norway, as well as a nurse/counsellor at the Centre for Rare Disorders, Oslo University Hospital. With a clinical background in specialized healthcare involving congenital malformations and rare disorders, her research interests include chronic illnesses, transition phases, disclosure, stigma, diversity of sex development, and congenital malformations. Her recent research has focused on the life course of individuals living with DSD, either as adults with DSD or as parents of children with DSD.

Solrun Sigurdardottir

Solrun Sigurdardottir is a licensed neuropsychologist working at the Centre for Rare Disorders, Oslo University Hospital, Norway, since 2019. She completed her Ph.D. thesis on traumatic brain injury in 2010 at Sunnaas Rehabilitation Hospital in Norway. She was a post-doctoral researcher in 2012-2015 at the University of Oslo in Norway. She has 25 years of experience specializing in adults with acquired brain injuries. Publications (ca. 60 articles) have focused on neurocognitive outcomes and psychological consequences after traumatic brain injuries e.g., executive functions, olfactory function, depression, anxiety, post-concussion syndrome and posttraumatic stress disorder. More recently, her research work has focused on rare disorders and quality of life. Additionally, she is a supervisor and bi-supervisor for several Ph.D. candidates and has a history of managing specific projects that have resulted in multiple publications.

Lena Fauske

Lena Fauske is a researcher working at The Norwegian Radium Hospital, Oslo University Hospital (NRH OUH) cancer clinic since 2012 and holds a position at the University of Oslo (UiO), medical faculty as an associate professor. She completed her PhD, “Cancer more than a disease” at the UiO in 2016. At the NRH OUH she researches the patient perspective on cancer, and she teaches qualitative methods at UiO and supervises master’s and PhD students. The publications have focused on cancer survivorship in sarcoma patients. Her research also involves patients with other metastatic cancers, fatigue in young cancer survivors and changes in body image among others. She has participated in the research group Society, health and power (SHEP) since 2012. Since 2019 she is a member of EORTC quality of life sarcoma research group.

Anne Waehre

Anne Waehre is head of the National Treatment Service for gender incongruent children and young people at Oslo University Hospital since 2017. She previously worked as a pediatrician at Karolinska Hospital. She currently has a post doc scholarship related to gender incongruence in children and young people. She is also a supervisor for several research fellows in the areas of gender incongruence and diversity of sexual development.