Communication between doctors and users

Effective communication between health professionals and users is a fundamental aspect of any relationship in healthcare. Sound diagnostic processes and effective clinical interventions rely upon the exchange of comprehensible and comprehensive information between physicians and patients.

The relationship between doctor and patient, or in general between health professionals and users, determines the quality of the care provided and the level of user compliance. Health information is a multidirectional process that includes the transfer of information from health professionals -the interdisciplinary team- to users - the intersex person, their parents, siblings, and/or other family members, from parents to their intersex children and from the whole family to healthcare staff.

Delivering the diagnosis
One of the main tasks of the specialist is to support the family when delivering a diagnosis of Variation of Sex Characteristics (VSC)/Difference of Sex Development (DSD). This is often reported as a critical moment because the family may have to deal with news they were not prepared for. Parents may need psychological assistance in processing the complex and conflicting emotional experiences upon receiving the news. For example, they may be worried about their child's physical and psychological development, and struggle to cope with the uncertainty of their child's future. In these cases, it may be helpful to put parents in touch with associations in the field, so that they may get in contact with other families and exchange experiences.

The specialist's task is to establish a trusting relationship with the family, and monitor the family's psychological state over time, considering the possibility of directing them to more structured psychological (or psychotherapeutic) care in the event of specific psychological (or even psychopathological) vulnerabilities. In some cases, anxiety, depression, and post-traumatic stress disorder may arise, which in turn may compromise the quality of the care the parents can provide for their children.

Communicating with intersex people
Although historically much emphasis was placed on communicating with parents, we should bear in mind the importance of open communication with the intersex person; indeed, intersex people sometimes report barriers to direct communication with health professionals. Clear and informed communication is recommended from a developmental age, obviously adapting the information to be shared to the person's age and context, to accompany them along the different stages of development, and help them take any future decisions regarding their health independently. The aim of communication is mainly to provide, along with empathic listening by the physician, all the useful information that will enable the person to become aware of, and understand, their condition. Good communication is a prerequisite for establishing a trusting relationship between doctor and patient. One of the cornerstones of appropriate communication relies on healthcare professionals using a non-stigmatising language and attitude, implying a view of VSCs/DSDs as natural variations of the human body. For example, it is important to describe genital atypia as a ‘variation' or 'difference' rather than as a 'birth defect', 'ambiguous genitalia' or as an 'abnormality'. Finally, it is essential for the team to remain in regular contact with the person concerned and/or the family, even when there are no specific problems, to be able to help in processing and managing any fears that may arise at different stages of life.

The importance of adequate communication is demonstrated by international literature showing that people with VSCs/DSDs do not feel comfortable addressing health professionals on issues not related to their own variation, both due to past traumatic experiences (for example, early surgery, invasive examinations, etc.) and due to lack of proper communication by health professionals.

Bibliography
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Crocetti D, et al. Navigating the complexities of adult healthcare for individuals with variations of sex characteristics: from paediatric emergencies to a sense of abandonment. Cult Health Sex. 2024;26(3):332-345
Jenkins M, Newman C. Caring for individuals with a difference of sex development (DSD): a Consensus Statement. Nat Rev Endocrinol. 2018 Jul;14(7):415-429
Prandelli M, Testoni I. Inside the doctor's office. Talking about intersex with Italian health professionals. [Abstract] Cult Health Sex. 2021;23(4):484-499
Weidler EM, Peterson KE. The impact of culture on disclosure in differences of sex development. Seminars Pediatric Surgery. 2019 Oct;28(5):150840