A boy or a girl? : Parental, family and whanau information needs when a child is born with an intersex/DSD condition : a thesis presented in fulfilment of the requirements for the degree of MPHIL in Nursing at Massey University, Auckland, New Zealand

Abstract

Is it a girl or a boy? This is a question that new parents assume will be answered at the birth, or even in the months leading up to the birth of their baby. To have a baby born where gender is not certain or to discover your child has a condition where their chromosomes and/or genital anatomy are not what are considered 'normal' for males and females shatters the expectations parents have for their child. While dealing with their shock and accompanying grief parents are caught up in major clinical decisions which impact on their child's future. Over the last fifty years there has been a medical paradigm of care that has recently been questioned in terms of the ethics and clinical treatment these families and children have received. This debate is ongoing and new parents are still being caught up in trying to make decisions with major implications for their child's life while negotiating their own, their family and friends, and the medical community's interpretations of major questions around what makes us male or female. This study used a qualitative exploratory methodology to interview twenty one representatives from four key stakeholder groups in order to explore the information needs parents, families and whanau have when their child is diagnosed with an intersex/DSD (disorder of sexual development) condition. The groups were adults who self identified as having an intersex condition, parents of children with intersex/DSD conditions, representatives from advocacy and support groups and medical professionals these families would come in contact with. Data was analysed looking at themes which arose from the narratives of those who spoke to the researcher and excerpts from the transcripts are used throughout the data chapters to illustrate the themes. 'Finding Out and Finding Information' examines the experiences of parents and families as they discover their child has an intersex/DSD condition and how this is impacted by the way health professionals talk with them and the information they receive. It reviews the internet as a source of information and the challenges the internet provides for parents. 'The Hard Issues' examines some of the dilemmas, ethical, legal, social and personal, brought up when making decisions for a child and the issues which parents confront in their day to day parenting. It also looks at the experience of growing up with an intersex/DSD condition. The Chapter on 'What is Helpful Information? Conclusions and Recommendations' reviews the advice and information parents would have liked to receive when their child was born, and that they would offer to others. Finally recommendations are made for health professionals in terms of education and the information and help they can offer to parents, families and whanau. This thesis explores the experience of those adults, families and children who have been treated under an existing medical paradigm, the work of those who want to effect change for these families and the information needs expressed by those who were willing to share their stories. It makes recommendations for improving the future experience families have within the healthcare system as they face the challenges and joys involved in having a child with an intersex/DSD condition