Areas of focus

EuroPSI invites suggestions for strategic topics to address. This page will in time cover the network's current areas of focus, together with a forecast of future themes. At the time of our inception, the founding members have, through their clinical and research experiences, prioritised the following interrelated areas of concern:

Communication skills training

Our binary language of sex and gender is a direct challenge to any attempt at an empowering dialogue about variations in sex anatomy. However the problem does not have to be insurmountable.

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.

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.

Parents of newborns with an intersex/dsd condition are especially vulnerable. The personal values and behaviours of individual members of the team and its dynamic functioning will be highly influential in the wellbeing of the family and the monumental decisions that they face. Dilemmatic choices often continue into adolescence and adulthood. Paediatric and adult MDTs should therefore be effectively led to facilitate emotional safety and ethical integrity via professional transparency.

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.

Diagnostic information and self-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 who have experience of atypical sex development absorb the discomfort of adults (doctors/parents) in talking about intersex/dsd and become fearful of broaching the subject themselves with others. Sometimes family members with the same hereditary condition may not know about one another, and sometimes intimate partners may know little.

Intimate relationships are sometimes avoided altogether for fear of being compelled to give explanations about the diagnosis or treatment. Young people should have been able to practise various ways of articulating the words in a safe environment (e.g. with a psychologist) before they find themselves in the position of revealing sensitive and difficult information to ‘significant others’ in their life. They need to have been introduced to different ways of conceptualising intersex/dsd and to have reached a comfortable acceptance of their situation before they can disclose to others in a manner that maximises the chances of a positive reaction.

Shame, secrecy and disclosure problems are central issues in the psychosocial landscape of intersex/dsd. EuroPSI is committed to a reduction of stigmatisation in intersex/dsd, so that more choices about self-disclosure may become available to children, adults and families.

Diversity in sexual expression and experience

Many people born with atypical 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 diagnosed with intersex/dsd conditions 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 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 non-investigation of 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.

Public engagement

EuroPSI is committed to finding ways to promote public understanding about intersex/dsd. Numerous opportunities for educational experience remain unexplored.

One area for systemic change is sex education. If all people who engage in sex education are invited to develop non-pathologising understandings about sex development diversity, then the stigma and silence around this diversity will be easier to address. Diagnosed young people and expectant parents might then at least have heard of intersex/dsd by the time it plays a key role in their lives. Such an education would also benefit many young people in the general population whose wellbeing is compromised by body insecurities created by social pressures to meet unrealistic gendered expectations.

Further opportunities for education of the general public lie in the use of multimedia tools to create educational short films (e.g. animations with a commentary/voiceover provided by people with intersex/dsd) and up to date textual resources (e.g. online/printed booklets) which could present atypical sex development in a wider context than the usual medical framing.

Such resources might also be used in the course of pregnancy care, as part of the professional training of nurses, midwives, medical doctors, and mental health and social care providers. It might also be possible to involve university social sciences and humanities departments in a more cross-disciplinary approach to the relevant phases of medical education.

Raising the standard of psychosocial research

One of the challenges of taking a psychosocial approach within biomedicine relates to the way that psychological phenomena are conceptualised and measured. Psychologists are often called on to measure aspects of psychosocial well-being, and hundreds of scales exist, such as those focusing on 'coping', 'depression', 'body image', 'quality of life', and so on. EuroPSI recognises that in some health service contexts, the naming of problems (e.g. 'depression') and their quantification are prerequisites for service development and provision. But these tools often fail to recognize highly specific experiences of people with intersex/dsd and their families.

If, for instance, shame is of concern, what value would such a measurement have for the people who are affected? Does a score on a scale say anything about a human being's thoughts and feelings and how these influence the choices that they make? Is it more useful to work with shame in other ways? These doubts are consistent with the more general criticism of the indiscriminate use of psychometrics on minority groups including sexual minorities. Debates on the appropriate deployment of psychometrics can be expected to be on-going.

Many psychologists turn to qualitative approaches to make sense of people's experiences and emotions to inform clinical practice. There is a growing body of qualitative research in this field, giving some clear indications of what it is like to experience atypical sex development and to receive medical treatment, and what can exacerbate emotional distress.

EuroPSI advocates that all psychosocial research, whether qualitative or quantitative, be subjected to the same degree of scrutiny for theoretical formulation, methodological rigor, ethical integrity and clinical applicability. We are committed to making sure that important insights gained, especially from robust qualitative research, are not lost in translation.