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Working with a group of young women affected by androgen insensitivity syndrome

Di Grazia, M1

1: IRCCS Burlo Garofolo, Italy

Androgen Insensitivity Syndrome AIS or Morris syndrome is chracterised by the presence of external female genitalia, ambiguous sexual genitalia or by various virilisation defects in an individual with a karyotype  46,XY with a non-response or a partial response to the age appropriate levels of androgens. Two clinical subgroups of the syndrome are known: the complete androgen insensitivity syndrome (CAIS) and the partial androgen insensitivity syndrome (PAIS).

Objective: The objective of this work consisted in exploring how each singular patient perceived and lived their emotional feelings and sexuality. The work was carried out both through group activities and role-play sessions to approach the issues that needed special care and to fill them with a meaning based upon the individuals' personal experiences.

Methods and materials: Three sessions were scheduled: I) one with the staff II) one with the staff and the participants' emotional feelings III) one with the staff and the participants' sexuality. The sessions took place quarterly with a two days' duration (20 hours totally) each. The inclusion criteria were: age≥ 18 and taking part in every scheduled session, both to ensure continuity and familiarity among the participants and to build up the ideal climate to share experiences and to work in. During each session a variety of topics were discussed whereas illustrations were used in group activities to deal with specific subjects, such as their emotional feelings, the awareness of their body and their sexuality. The participants engaged in role-playing to perform the stories that they wished to share with the others.

Conclusions: The work included 8 young women (mean age 30.75 years), range 18-55 years and standard deviation SD 10,47. Such type of experience-based work allowed the participants to act their stories and their personal experiences with no judgement or expectations. Sharing these moments allowed them to regain contact with their own intimacy and emotional feelings, since these two areas might have been either neglected or mistreated in their past.


Work supported by industry: no.

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