Psychosocial Support for Parents, Infants, Children and Adolescents with Variations of Sex Characteristics: Results from a Pan-European Survey

Early psychosocial support for parents is crucial in helping them avoid potentially harmful medical procedures for children with variations of sex characteristics (VSCs). Psychosocial support, including peer support, can help them choose the best route for their child, avoiding potentially harmful medical interventions. However, there is a lack of data on the provision of psychosocial support for families with a child who has a VSC. We sought knowledge about the timing and types of psychosocial support, and the level of implementation of psychosocial support amongst healthcare professionals and peer supporters. A survey was conducted using a purposive sample of health care professionals and members of peer support groups across Europe. 301 responses were received and analysed using descriptive and inferential methods. The survey results showed that psychosocial support primarily addresses diagnostic procedures, terminology, and medical treatment. Whilst the majority of healthcare professionals aspired to have psychosocial support provided at the point where a diagnosis of a VSC was suspected, this was only reported as current practice by minority of respondents. Overall, the survey indicates that psychosocial support and collaboration between health care professionals and peer support groups have been insufficiently implemented.