The experiences of older adults with Variations in Sex Characteristics (VSC or Differences/Disorders in Sex Development/DSD) are well documented. However there has been a gap in the literature with respect to representing the voices of younger people. This qualitative research study has been conducted in collaboration with Intersex Trust Aotearoa New Zealand. Ten young people with VSC were recruited via health professionals, intersex advocates, support groups and social media platforms throughout Aotearoa/New Zealand. Interviews were in-depth and semi-structured, digitally recorded and transcribed. Braun and Clarkes (2006) Thematic Analysis was used to identify key themes regarding the young persons experiences of the health system, including their own decision-making process or their experience of decisions made for them by their parents and or health professionals involved in their care. A variety of experiences were reported, some very positive. Negative experiences highlighted were communication issues, bias, and lack of understanding of diversity in relation to interactions with health professionals. All these factors had a direct impact on young peoples decision making. The complexities of identity, gender, bodily autonomy, acceptance of difference and peer support were identified as issues and explored by the young people. Challenging the concept of the Norm was a major theme for young people. They reported that this concept was revisited and changed over time with self-reflection, ultimately creating a path towards self-acceptance and a sense of belonging. Support for both young people and those who care for them was identified as crucial. The need for collaboration and opportunities for having and holding difficult discussions around the possibilities of care within the health system were also raised. Implications of the findings include the need for: (i) better support systems (especially peer support from others with a variation in sex characteristics, and the development of caring communities); (ii) a need for additional training for health professionals in this area around communication skills and identifying and managing bias.
27 - 29 Sep 2018
European Society for Paediatric Endocrinology