Areas of focus
Team development
The multi-disciplinary team (MDT) approach to health care in intersex/dsd has often been hailed as a new clinical paradigm. The emphasis on psychological input in teams further reflects the recognition that life experience (sometimes narrowly and sometime erroneously defined as ‘clinical outcome’ in the medical literature) transcends anatomy and physiology. However, embedded in MDTs are obstacles as well as opportunities. These are seldom voiced or explicitly negotiated.
Intersex/dsd team leads are usually medical doctors, who are often unfairly and unrealistically expected to acquire team development skills through osmosis, with neither training nor mentoring. Furthermore, there are still many MDTs without any psychological expertise at all, and many where the team psychological clinician has had little access to training in what is a highly specialised field. EuroPSI seeks to improve resources to help apply psychological values and principles to team development that privilege safety and transparency in professional relationships and patient care.
Communication skills training
The intersex/dsd field lags behind other areas of health care in the recognition of the need for communication skills training. Research and anecdotal reports have repeatedly pointed to communication difficulties in intersex/dsd medical consultations, often with lasting negative emotional effects on service users. Parents/patients have reported getting too little information, too much complex information, confusing information, and being upset by passing comments or remarks. Poor communication risks not only psychological well-being but the ethical integrity of informed consent, especially to elective and irrevocable interventions.
Communication is not just about information giving; listening, actively and empathically, is often more important. Communication about sex development especially requires timely, stepwise, carefully tailored and repeat conversations. The capacity for nuanced exchanges in emotive clinical situations can be developed through experiential learning in facilitated and safe conditions. Psychological understandings of emotional responses and their impact on patient experience and decision-making can contribute usefully to a greater capacity for sensitive and effective communication.
Disclosure
There is now broad acceptance amongst health professionals that children and young people should be informed about their diagnosis and treatment progressively, and in age-appropriate ways. However, it is not clear to what extent this is being followed through methodically and consistently. EuroPSI sees this as a vital issue to tackle.
​
In talking with children and young people about their own bodies and potential clinical interventions, it is also important to address the dilemma of self-disclosure in social settings. Many people with a variation of sex characteristics choose not to discuss this with others. Sometimes family members with the same hereditary condition may not know about one another, and sometimes intimate partners may know little, if anything. Intimate relationships are sometimes avoided for fear of being compelled to give explanations about the diagnosis or treatment.
Disclosure, shame, and secrecy are central issues in the psychosocial landscape of intersex/dsd. EuroPSI is committed to a reduction in stigmatisation of intersex/dsd by exploring ways to broaden public understanding, so that more choices about self-disclosure may become available to children, adults and families.
Sexual experience
Many people born with diverse sex anatomies are subjected to interventions so that they can perform sex in ways that meet gendered social expectations. The offer of genital surgery almost without exception takes for granted that genital intercourse is the universal sexual norm. The consolidation of heterosexual binary gendered identity assisted by ‘normal’ sexual performance usually takes primary consideration. Rarely does the current and future capacity for erotic pleasure enter into treatment planning for affected children and adults. Any pain, anxiety or absence of pleasure in the surgical patient often emerges after the event. This sexist and heterosexist fundamentalism appears to sit on a blind spot in medicine. Heterosexual genital intercourse is a valid form of intimacy and sexual expression. Its centrality is however disempowering, not just for people diagnosed with intersex/dsd conditions but for all human beings. In reserving 'sex' for genital intercourse only, it marginalises and demotes non-genital sexual experiences.
Sex research with people with a diagnosis of sex development has been underpinned by academic preoccupations with finding proof of the gendered brain. Because the research interests and questions are pre-determined, often by neuropsychologists serving their own academic interests, we know very little about the joy, frustration, desire, fulfilment and disappointment, in other words, the ebb and flow of sexual experiences across the lifespan, as defined and expressed by the people being researched.
EuroPSI is also concerned about the effects of repeat clinical examinations and medical photography in childhood. The impact on adult sexual experiences should be a primary focus for future sex research in this field.