Enduring uncertainties. Medical accounts on caring for young people with variations of sex characteristics.

Abstract

The diagnosis of intersex or variations of sex characteristics (VSC) often has a big impact on families who fear social stigmatization. Research has shown that intersex populations often experience important health disparities and that poor mental health and daily function are common among youth with VSC. The present study aimed to explore what healthcare professionals of adolescents and young adults (AYA) with VSC find important in terms of care to this group of patients. Semi-structured interviews were conducted with Swiss healthcare providers involved in the care of youth born with an intersex variation. The qualitative data were analyzed using reflexive thematic analysis. Analysis resulted in six major themes: (1) With regard to patients' and families lived experiences, interviewees reported that fertility was as a major issue for parents but not for intersex youth as they were said to live in the moment. (2) Respondents considered various forms of psycho-social care (professional support, peer support and informal support from family and friends) to be of fundamental importance for their patients, but many of them seemed critical about support from advocacy groups and activists. All healthcare providers reported significant gaps in (3) the transition process and (4) the establishment of multidisciplinary care teams due to structural, provider- and patient-related barriers. (5) Participants were in favor of a more holistic and patient-centred care approach and (6) were critical about the medicalized use of DSD (disorder of sex development) with patients and families. These findings suggest that although clinicians work hard to implement a holistic approach to care, their intentions are often undercut by a desire to hold a position of medical control. Healthcare professionals need to come to see medical uncertainty not only as a threat but also as an opportunity.