Psychosocial care and support in the field of intersex/diverse sex development (dsd): counselling experiences, localisation and needed improvements

From different sides, there is a call for better psychosocial care and counselling in the field of diverse sex development (dsd). However, studies on the specific demands, deficits and needed improvements regarding those services are rare. This exploratory online study aimed at investigating counselling experiences and the ideas that different groups of participants have concerning the localisation of counselling structures and improving care. Quantitative and qualitative data (N = 630) were analysed within a mixed methods framework. The participants included experts of experience resp. patients with different intersex/dsd conditions (n = 40), parents of children with dsd (n = 27), professional psychosocial counsellors (n = 321) and experts in the field including medical practitioners, psychologists, natural and social scientists as well as others involved, e.g., students or relatives (n = 56). The results show a gap between receiving psychosocial and medical care in the group of adult lived-experience experts, who had received less psychosocial care than medical interventions. The findings also reveal important tasks of psychosocial care. A focus was set on parental experiences. Helpful aspects reported were talking with other parents of children with intersex/dsd, aspects missed were assistance in supporting the individual development of their children. The majority of all participants (58%) held the view that, apart from multidisciplinary competence centres, there also have to be easily accessible counselling services which offer support in everyday life. The participants named increasing quality and quantity as necessary improvements in counselling structures for children and adults with intersex/dsd and their families. Implications are drawn for the specific tasks and target groups of psychosocial care and needed research in intersex healthcare over life span.