Listening to individuals with differences in sex development or intersex and their families: ‘not doing surgery doesn’t mean doing nothing’

Abstract

Informed decision-making and considerations of the child’s best interest offer a starting place for building informed and lifelong discussions that promote the long-term interests and the wellbeing of individuals experiencing differences in sex development (DSD) or intersex traits. Parents require sufficient information and support to understand what ‘doing something and doing nothing’ really means when learning about non-surgical options. This may take the form of health literacy support, asking how parents are given access to meaningful and understandable information, as well as psychosocial support and psychological care. Timely psychological assessment and interventions that support informed decision-making actions are an essential aspect of holistic care with children and youth with DSD and their parents. Without actionable tools or approaches parents cannot make informed decisions about their child’s health and, as such, health literacy is a key attribute to aid decision making for both parents and children. As individuals with DSD become increasingly adept at building resourcefulness, gathering and applying knowledge about their bodies, limiting irreversible surgeries in childhood can afford wider life choices. To this end an educated and informed comprehensive and helpful multidisciplinary group understands and embodies, as a whole team, the need for compassionate, emotionally supportive, and validating care in all interactions with parents of children and individuals with DSD. The paper draws on the primary author’s experiences working with the charity, dsdfamilies, concluding with actionable approaches that include supporting personal knowledge through health literacy, examining team based psychological care, and psychosocial approaches across the lifespan.