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

Abstract

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.

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

“…The wish to hold a position of medical control was also reflected in the sceptical attitude of most participants with regard to the function of support and advocacy groups in the care of intersex persons. Although it would be highly beneficial for intersex youth if non-medical perspectives would be taken into account, at present non-medical partners are hardly included in the MDT [20,21]. Likewise, in line with other studies [18] our results suggest that the representation within the MDT of different types of care professionals (e.g.…”

“…The Consensus Statement and its update [1,11]havecalledfortheintegration of psycho-social support in the care of intersex persons. Research, however, has revealed an important gap between these intentions and available mental health services for children and adults with VSC and their families [19,20]. The present study offers an important contribution to the existing literature on support services by examining the perspective of HCPs who care for intersex youth in Switzerland.…”

“…availability) and quality (i.e. experts) of sustained psycho-social support for both patients and their families throughout the lifecourse [19,20].…”

Standards of Care for the Health of Transgender and Gender Diverse People, Version 8

“…As intersex conditions are rare, parents of such children and later the individuals themselves may experience their situation as unique and very difficult for others to understand. Thus, based on clinical experience, there is a consensus among HCPs who are experienced in intersex care, that social support is a crucial component of intersex care, not only through professional support by MHPs (Pasterski et al., 2010 ), but also, importantly, through support groups of individuals with intersex conditions (Baratz et al., 2014 ; Cull & Simmonds, 2010 ; Hughes et al., 2006; Lampalzer et al., 2021 ). A detailed international listing of DSD and intersex peer support and advocacy groups with their websites has been provided by Lee, Nordenström et al.…”

Gender assignment in disorders of sex: An Islamic perspective from Saudi Arabia

“…It should be clear, frank and honest. (51)(52)(53)(54) The need for encounter and exchange ideas with other parents with similar experience with DSD are found to be helpful. Furthermore, there is a need for a continuous physiological support and counseling.…”