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

Figures & data

Table 1. Dilemmas.

Theme	Dilemmas	Discussion points
1. Navigating the child’s and caregivers’ needs	Who should be the decision maker?	Caregivers making decisions due to expectations of normalcy on the behalf of the child.	The child’s right to make decisions about his/her body after reaching maturity.
	Maneuver caregivers expectations	HCP argues for deferral. HCP describe parents who do not push for surgery.	HCP describe parents who express a wish for surgery in order to avoid bullying, reduce stigma, and being able to wear tight fitting clothes (gym suit, swimming suit).
	Ways to reduce family stress	Good support for families in form of psychological support and follow-up, medical guidance during surgical decision-making.	To ‘normalize’ the child’s bodily ambiguity.
	The power of information	Informing of previous practice (more liberal attitudes towards surgery) resulting in parents opting for surgery.	Informing on the practice today, and not informing about a ‘solution’ that they cannot have.
	Lack of understanding of complex medical conditions	Patients and caregivers should be the primary decision makers.	Are patients and caregivers capable of understanding all the necessary information regarding the condition, surgical interventions, and debate regarding surgery?
	Lack of willingness to make the decision	Patients and caregivers should be the primary decision makers.	Patients and caregivers prefer HCP to make the decision.
	Is there a difference between male genital surgery vs female genital surgery when it comes to degree of controversy?	Proximal hypospadias surgery perceived as less controversial by HCP. Experiences with adolescents not problematizing hypospadias surgery/reporting contentedness.	Female genital reconstructive surgery perceived as controversial by HCP. Lack of follow up after 16 years may conceal negative experiences from adult perspective.
	When affected individuals express opinions conflicting with consensus, but the follow up ends when the child reaches 16 years of age	Listening to experiences expressed by affected individuals.	Following consensus?
2. Dilemmas due to a lack of evidence-based practice	Decision making when alternative decision paths exists	Evidence for surgery affected by rarity or low-prevalence complex diseases in removal of gonadal tissues.	Evidence against surgery affected by rarity or low-prevalence complex diseases in removal of gonadal tissues.
	Which voices are listened too?	When satisfied individuals don’t speak up.	When dissatisfied individuals speak up.
	Issues with disclosure, fear of stigma, and lack of understanding of DSD in general	Positive experiences of surgery may be undermined.	Negative experiences of surgery may be undermined.
	Evidence-based knowledge is needed during the decision-making process	More research needed.	Financial and human resources to conduct research is lacking.
	To disseminate conflicting information regarding gonadectomies in some conditions	Gonads may contribute to beneficial hormone production. Positive to giving patients and caregivers time to process the provided information as part of the shared decision-making process.	Increased cancer risk the longer you wait with gonadal removal.

Data availability statement

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