ORDER OF PRESENTATIONS

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1. Denise Steers: Research to resources  

2. Megan Usipuik, Emma Amyot & Caroline Sanders: Menstruation management and person centred care in congenital adrenal hyperplasia  

3. Katrina Roen: Understanding parental decisions and regrets in the context of hypospadias  surgery

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DETAILS OF PRESENTATIONS

 

Title: Research to Resources  

Author: Denise Steers  

Author’s affiliations: University of Otago  

This submission will discuss the process of turning research into practical resources for those  living with Variations in Sex Characteristics (VSC) and those who care for them. In this instance it is  the development of a parent resource based on PhD research which explored the decision-making  process for health care provision from the perspectives of young people with a VSC, Parents of  children with a VSC and the health professionals who work in the area of VSC.  

During the PhD, close collaborative partnerships between health care providers, Intersex  advocates and those with lived experience where established. The research highlighted the need for  practical resources. Especially, to help parents navigate the challenges of the health system and  making decisions for children born with a VSC.  

The resource is in the second phase of development, having consulted with parents with  lived experience, health professionals and intersex advocates to gain feedback on the resources  design, content and relevance specific to the New Zealand Context.  

I will discuss the benefits of building on research partnerships to develop a parent resource  that is driven by a human rights and psychosocial approach that elevates the voices of those with  lived experience.  

 

Title: Menstruation Management and Person-Centred Care in Congenital Adrenal Hyperplasia 

Authors: Megan Usipuik, Emma Amyot, Caroline Sanders  

Author affiliation: University of Northern British Columbia  

Introduction: Congenital adrenal hyperplasia (CAH) encompasses a group of inherited conditions  affecting the adrenal glands through enzyme deficiencies. CAH may impact menstruation and  fertility and often requires lifelong management through medication. However, health literacy  resources for individuals with CAH are limited.  

Aims: This review aimed to explore menstrual and medication management for individuals with CAH.  Methods: An integrative literature review was used to examine studies on CAH and menstruation  published between 2005 and 2020.  

Results: 30 articles met inclusion criteria (19 observational and 11 case studies). Individuals with CAH  seem to reach menarche at a similar age to people without CAH. However, oligomenorrhea and  amenorrhea appear to be common in this population. Treatment outcomes are mixed, with some  studies showing achievement of regular menses and pregnancy, and others not. Poor outcomes  were sometimes reported as being due to non-adherence or non-compliance despite a lack of  evidence to indicate so.  

Conclusion: We encourage a person-centred (PCC) approach to care which includes education and  communication, and foregrounds individuals’ health and bodily autonomy.  

Implications: Reliable and accessible information on menses management for individuals with CAH,  as well as PCC and autonomy, are important aspects of overall health, wellbeing, and health literacy  for this population. 

 

Title: Understanding parental decisions and regrets in the context of hypospadias surgery 

Author: Katrina Roen  

Author’s affiliations: University of Waikato  

This paper examines surgical follow-up studies and parental regret studies, taking a psychosocial  approach to considering what research evidence supports hypospadias surgery and what evidence  brings that surgery into question. This paper draws out the implications for engaging parents in a  meaningful process of deciding whether or not a surgical pathway is the best option for their child.

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PRESENTERS' BIOGRAPHIES

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Denise Steers is a clinical psychologist and researcher who completed her PhD on Decision making  for children born with a variation in sex characteristics at the University of Otago, Wellington  Aotearoa/New Zealand. She is currently doing a PostDoc developing a parent resource for parents  and health professionals based on her PhD research.  

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Caroline Sanders is a registered nurse living in British Columbia for the last five years. A pediatric nurse for  more than three decades – working in a clinical academic model. Having a background in clinical  trials and qualitative research with children, families and youth, now more recently with adults.  

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Megan Usipuik is a Research Assistant with the University of Northern British Columbia as well as a  Counsellor in the community. She has lived in northern British Columbia her entire life and  is currently completing her Master's degree in Counselling.  

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Katrina Roen is Professor of Sociology at the University of Waikato (Aotearoa New Zealand). Her  academic research relating to intersex/variations in sex characteristics draws from critical  psychology and gender and sexuality studies. Some of this research has been undertaken within the  SENS Project, a series of empirical studies carried out in Scotland, England, Norway and Sweden.  Katrina’s current research investigates how New Zealand is responding to the human rights claims  that have been presented by the United Nations to the New Zealand government in relation to the  medical treatment of intersex children. In her work, Katrina prioritises building dialogue between  health professionals, researchers and intersex advocates. Katrina is one of the founding members of  EuroPSI and currently chairs the organising committee of PSI-I.