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

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