Intersexuality/Differences of Sex Development through the Discourse of Intersex People, Their Relatives, and Health Experts: A Descriptive Qualitative Study

Abstract

Intersex/differences of sex development (DSD) conditions are divergences among genitalia, gonads, and chromosome patterns. These variances have been present for millennia and socially defined according to the cultural system established. The aim of this study is to describe the perspectives of adult intersex/DSD people, their relatives, and intersex/DSD expert professionals in Spain. A descriptive qualitative study design was adopted. The study was carried out in several locations in Spain. Individual in-depth interviews were conducted and addressed to 12 participants (4 intersex/DSD people, 3 relatives, and 5 professional experts). A total of 4 spheres, 10 categories, and 26 subcategories were obtained. The number of verbatims obtained in each of the spheres described were intersex/DSD as a community (n = 54), health sphere approach (n = 77), law sphere approach (n = 12), and psychosocial approach (n = 73). Regarding intersex/DSD as a community sphere, there is a clear need of promoting education on sex and body diversity. With respect to the health sphere, it is mentioned the inadequacy of services and how this has a negative impact on the health of intersex/DSD people. Regarding the law sphere, it is highlighted the need of designing legislations at a national level which protect and defend the rights of intersex/DSD people. Regarding the psychosocial sphere, these people suffer from social isolation, secrecy, shame, self-identity questioning, and mental disorders that negatively impact their quality of life.