Abstract
People born with a variation in sex characteristics (VSC) face the challenge of having atypically sexed bodies. This qualitative 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 young people currently living with a VSC.
Health professionals, parents, and young people must navigate complex and controversial healthcare decision making. This is often ethically challenging and involves 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 an understanding of diversity, communication skills, 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 and diversity; advance communication skills; understand patient perspectives, and address ethical issues. They also facilitate the provision of specialised psychological support and peer support for parents; increase their awareness and insight regarding bias and diversity; and enable future concerns with a focus on bodily autonomy for the child to be addressed. 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. Suggested health system improvements include: multi-disciplinary teams including psychologists and patient advocates; a specialist national centre in Aotearoa/NZ; a VSC patient registry; and ongoing research looking at outcomes.