Variations in Sex Characteristics Ira Tangata
Navigating Healthcare Decision Making
Written by Denise Steers
Illustration and Design by Sam Orchard
Kia ora, nau mai, haere mai
Welcome to this guide for navigating healthcare decision making for children born with an innate variation in sex characteristics (VSC) in Aotearoa/New Zealand.
This guide is for anyone who is a parent or caregiver of a child/tamaiti with a VSC in Aotearoa and for the healthcare professionals working with you.
Ngā mihi
E hara taku toa i te toa Takitahi, engari he toa Takitini.
We give our sincere thanks to those who took part in the research that made this guide possible, and to honouring us with further feedback to improve the guide.
Ngā mihi aroha ki a koutou.
Intentions of this guide
Whenever you have to navigate the health care needs of your child/tamaiti
it can throw up challenges, especially when it comes to making complex decisions that will have long-lasting impacts on your child’s/tamaiti’s future.
You already have the skills to be a wonderful parent and provide love and support to your child/tamaiti.
This guide is designed to give you the information to build on and strengthen your skills to support your child/tamaiti now and for their future. It aims to assist with the conversations you can have with your healthcare team.
Who developed the guide?
All the information in this guide is based upon the findings from a joint venture project done in collaboration with the Intersex Trust Aotearoa New Zealand (ITANZ), Wellington Hospital Department of Paediatric and Child health (WHDPCH) and University of Otago.
The research project involved interviews with parents, health professionals and young people (aged 14–26) here in Aotearoa. The participants shared their lived experience of what it is like to have a VSC and the way that the health care system works for parents, caregivers, whānau, young people, and health professionals.
Terminology
Throughout this guide we have chosen to use the umbrella term VSC as this is seen as a more inclusive term.
Our aim is to be as inclusive as possible and we acknowledge that this term may not suit everyone.
This guide is split into two parts:
Acknowledgements
Funding for this guide was provided by the NZ Lottery Grants Board and University of Otago, Wellington.
The author would like to thank all the participants in our research who helped inform the development of this guide. Thanks also to Mani Mitchell, Georgia Andrews, Jelly O’Shea, Tu Chapman, Maria Stubbe, Esko Wiltshire, Keri Lawson-Te Aho, Gloria Fraser, and Sam Orchard for their contribution.