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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 poses a risk to psychological well-being and to the ethical integrity of informed consent, especially in relation 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 reiterated 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.

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