Differences of sex development and surgical decisions: focus group interviews with health care professionals in Norway

ABSTRACT

Background:

Differences of Sex Development (DSD) are congenital conditions where the chromosomal, gonadal and anatomical sex characteristics do not strictly belong to male or female categories, or that belong to both at the same time. Surgical interventions for individuals with DSD remain controversial, among affected individuals, caregivers, and health-care providers. A lack of evidence in support of, for deferring, or for avoiding surgery complicates the decision-making process. This study explores Norwegian health-care professionals’ (HCPs) perspectives on decision-making in DSD-related surgeries and the dilemmas they are facing in this process.

Methods:

Focus group interviews with 14 HCPs integrated into or collaborating with multidisciplinary DSD teams were analyzed using reflexive thematic analysis.

Results:

Two overarching dilemmas shed light on the intricate considerations and challenges that HCPs encounter when guiding affected individuals and caregivers through surgical decision-making processes in the context of DSD. The first theme describes how shared decision-making was found to be influenced by fear of stigma and balancing the interplay between concepts of normality, personal experiences and external expectations when navigating the child’s and caregivers’ needs. The second theme illuminated dilemmas due to a lack of evidence-based practice. The core concepts within each theme were the dilemmas health-care professionals face during consultations with caregivers and affected individuals.

Conclusion:

HCPs were aware of the controversies with DSD-related surgeries. However, they struggled to reconcile knowledge with parents’ wishes for surgery and faced dilemmas making decisions in the best interests of the child. This study draws attention to the benefits of increased knowledge on the consequences of performing or withholding surgery as well as incorporating tools enabling shared decision-making between HCPs and affected individuals/caregivers.

HIGHLIGHTS:

• DSD-related surgeries are controversial and subject to debate.

• Health-care professionals grapple with dilemmas during shared decision-making, as revealed in focus group interviews.

• Health-care professionals were concerned that parents’ and affected individuals’ fear of stigmatization would influence the shared decision-making process. Lack of evidence-based knowledge on practice, left health care professionals without clear guidelines on how to navigate decision-making.

KEYWORDS:

• Differences of sex development
• intersex
• surgery
• shared decision-making
• qualitative

Acknowledgements

The authors would like to thank all the participants for sharing their experiences and being open regarding their perspectives on surgery in DSD, a debated subject. The four members of the reference group, namely Oda Gadderud, Ellen Irene Kleppaker, and two members who wish to remain anonymous, all contributed to the invaluable initial discussions. Special thanks are due to the health-care professionals who willingly helped with participant recruitment. The authors would also like to thank Johanna Kling who was a moderator in one of the interviews, and their colleagues at the Centre for Rare Disorders for collaborating and sharing their knowledge throughout the research process. Finally, we would like to thank the pediatric surgeons who contributed when discussing the results.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Conflict of interest

No potential conflict of interest was reported by the authors.

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).