People born with a variation in sex characteristics (VSC) face the challenge of having atypically sexed bodies. This quantitative study recruited 10 young adults with a VSC (14 to 24 years); 18 parents of children with a VSC; and 22 health professionals working in the VSC field. Interviews were semi structured, digitally recorded and transcribed. Using thematic analysis, we identified key themes regarding participants' experiences of health care decision-making. This study has been conducted in collaboration with the Intersex Trust of Aotearoa/New Zealand (ITANZ).
This research is original and innovative in three ways it demonstrates close collaboration between activists and academics through all stages of the research design and conduct; it provides a unique 360-degree perspective integrating the views of health professionals, parents and young people (possible because of the small size of New Zealand); and it fills a gap in the literature by capturing the voice of current young people living with a VSC.
Health professionals, parents and young people must navigate complex and controversial healthcare decision making often ethically challenging, involving multiple decision points throughout their life, with divergent and uncertain consequences. This study documents key elements that influence healthcare decision making as reflected in the data. These include; understanding of diversity, communication skill, bias, conforming to or disrupting norms, psychological/peer support, bodily autonomy, identity, expectations, future worries, what's right and recognition of the past. "Trust" was a meta-theme that underpinned all of these elements.
The implications of these findings include targeted education and training for health professionals to: increase their awareness and insight regarding bias, diversity; advance communication skills; understanding patient perspectives; and addressing ethical issues. Provide specialised psychological support and peer support for parents; increase their awareness and insight regarding bias, diversity and address future concerns with a focus on bodily autonomy for the child. Young people need caring communities established through peer and specialised psychological support to explore their sense of identity, understanding of diversity and acceptance of self. Health system improvements include: Multi-disciplinary teams including psychologists and patient advocates; Specialist national centre in Aotearoa/NZ and DSD patient registry and ongoing research looking at outcomes
19 - 21 Sep 2019
European Society for Paediatric Endocrinology