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EVENT 1 PRESENTATIONS ORDER:

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1. Building community solidarities: Reproductive support for people with variations of sex  characteristics (Charlotte Jones, University of Exeter, UK).  

2. Intersex: New Interdisciplinary Approaches (INIA) Research programme (Surya Monro et  al., University of Huddersfield, UK).  

3. The VOICES Project: The creation of a self-advocacy measure for youth with Variations  in Sex Traits/Intersex and related conditions (Amy Tishelman et all., Boston College,  USA).  

4. Stigma, intrusiveness and distress in parents of intersex children (Katie Traino,  Oklahoma State U., USA).  

5. Navigating the Choppy Waters of Information Sharing in DSD: The SHIP-T Tool (Kristina  Suorsa-Johnson, University of Michigan, USA).  

6. The potential of good Youth Work (Joanna Mallinson, Young People’s Drug and Alcohol  Specialist, UK).  

7. Clinical case discussion (Kate Gething, New Castle Upon Tyne Hospitals, UK).  

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EVENT 1 PRESENTATION DETAILS:

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1. Title: Building community solidarities: Reproductive support for people with variations of  sex characteristics  

Author: Dr Charlotte Jones (she/her)  

Author’s role: Postdoctoral Research Fellow  

Author’s affiliations: Wellcome Centre for Cultures and Environments of Health, University of Exeter  

Abstract:  

This short talk will begin to explore the reproductive concerns of people with variations in  sex characteristics (VSCs) and the importance of VSC community engagement and  collaboration in research. Despite the prevalence and significance of infertility and  subfertility in the lives of many people with sex variations, their experiences are rarely  acknowledged in fertility and reproductive literature (Jones 2016, 2019). Despite this,  research indicates that infertility (both physical and structural), as well as reproductive  decisions and barriers, are a primary concern for many people with VSCs (Jones 2016,  2019).  

I will introduce the aims and initial findings of a recent project, Reprofutures (2019-2021),  involving collaborative, co-designed research which brought together people with  personal experiences of VSCs, support group facilitators, activists, and campaigners.  Drawing on a range of expertise and experience, the research sought to recommend  how reproductive psychosocial support could be re-imagined for people with VSCs in the  UK, but also to explore how a collective emphasis on fertility and reproduction could 

build solidarities across disparate patient groups and activist communities with shared  experiences of medical jurisdiction and institutionalised harms.

 

2. Title: Intersex: New Interdisciplinary Approaches (INIA) Research programme 

Authors: Surya Monro, Daria Abrosimova, Martin Gramc, Amets Suess Schwend 

Presenting author: Surya Monro  

Presenting author’s role: Professor of Sociology and Social Policy  

Author’s affiliations: University of Huddersfield  

Abstract:  

In 2020 the INIA international consortium began work on a large research programme to  address intersex people’s wellbeing and human rights from a variety of new and  innovative perspectives. The programme will train a cohort of 10 early-stage researchers  working collaboratively to develop knowledge that will inform policy making and practice  across a range of key sectors. Drawing on critical intersex studies, the research projects  are relevant to stakeholders who are concerned with supporting the wellbeing and rights  of intersex people through knowledge sharing and development. The project received  funding from the European Union’s Horizon 2020 research and innovation programme  under the Marie Skłodowska-Curie grant agreement No. 859869. Please see  https://www.intersexnew.co.uk/.  

Early-stage results show a dearth of intersex visibility in key areas including social  policy, education, and elder care. Intersex people and those with variations of sex  characteristics (VSC) face major health challenges and discrimination. There is a  pressing need for appropriate healthcare.  

The interdisciplinary INIA programme surfaces multiple discourses about intersex people  and those with VSC. All of the INIA projects are relevant to the EuroPSI agenda, include  those concerning bioethics, multi-disciplinary healthcare, human rights, social policy,  education, aging, service user participation and research ethics.

 

3. Title: The VOICES Project: The creation of a self-advocacy measure for youth with  Variations in Sex Traits/Intersex and related conditions  

Authors: Amy Tishelman, Hailey Umbaugh, John Strang, Rama Jayanthi, Jennifer  Hansen-Moore, Canice Crerand  

Presenting author: Amy Tishelman  

Author’s role: Clinical Psychologist  

Author’s affiliations: Boston College  

Abstract:  

The presentation will present information about the development of a self-advocacy  youth measure, based on a funded NIH grant (R21 MD015860-01—”Measuring Medical  Care Experiences and Traumatic Stress in Differences of Sex Development”).  

Youth with variations/differences of sex traits often experience stressful medical care  experiences linked to mental health risks, including traumatic stress, anxiety,  depression, and suicidality, although little is known about how diverse medical care  experiences differentially impact mental health and well-being. A significant barrier to 

understanding youth medical care experiences, needs, preferences, and impacts is the  lack of a validated patient-centered, self-report instrument specific to the diverse DSD  youth population to assess these issues. The proposed research employs a community based participatory approach to develop and evaluate initial psychometric properties of  an instrument assessing medical care experiences, unmet care needs and preferences,  and impacts on mental health, including traumatic stress, in youth with these  characteristics. In addition, we will be incorporating perspectives regarding gender related experience and needs as well as terminology preferences into the development  of the instrument. We deliberately employ a broad recruitment strategy, integrating the  diversity of experience represented by the many communities whose voices we mean to represent.  

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4. Title: Stigma, Intrusiveness, and Distress in Parents of Intersex Children 

Author: Katherine A. Traino  

Author’s role: Clinical Psychology student  

Author’s affiliations: Oklahoma State University  

Abstract:  

Previous research has demonstrated the experience of stigma among youth with  conditions of intersexuality or differences of sex development (DSD) and their parents.  Research has associated these stigma experiences with poorer adjustment outcomes  among parents. However, mechanisms by which stigma impacts parent distress have  not yet been examined. The present study aimed to apply a model from previous  pediatric health literature (stigma --> intrusiveness --> distress) among parents of  intersex/DSD children, such that parents’ stigma-related concerns may increase  perceptions that their child’s intersex/DSD condition interferes with engagement in  valued everyday life activities, which is then associated with increased distress. Results  demonstrated that increased stigma was associated with increased intrusiveness, which  in turn, was associated with increased depressive and anxious symptoms for parents  nested within dyads. Exploratory analyses demonstrated that among children with family  histories of intersex/DSD, parents indeed reported the experience of stigma. These  findings support the hypothesis that parents who experience intersex-/DSD-related  stigma report greater interference of their child’s condition into their daily activities, which  is associated with poorer psychosocial adjustment. Future research and clinical  intervention should discuss the role of parents’ perceptions of stigma and its impact on  engagement in valued activities, disclosure/concealment, and psychosocial adjustment.  

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5. Title: Navigating the Choppy Waters of Information Sharing in DSD: The SHIP-T Tool 

Authors: Kristina I. Suorsa-Johnson, Danielle Moyer, Erica Weider, Michelle Ernst 

Presenting author: Kristina I. Suorsa-Johnson  

Presenting author’s role: Research Assistant  

Author’s affiliations: University of Michigan  

Abstract:  

Introduction: Social support can protect against negative mental health outcomes  experienced by some parents/caregivers of a child with a difference of sex development  (DSD). Parent hesitancy to share information isolates them from established social 

supports. Healthcare providers can assist parents to feel more comfortable sharing  information with the important people in their lives.  

Aim: Develop a provider resource to facilitate discussions with parents regarding  information sharing.  

Methods: Members of the psychosocial workgroup (N = 19; 68% response rate) for the  DSD Translational Research Network (DSD-TRN) completed a survey about their  experiences facilitating information sharing discussions with parents of children with  DSD. A clinical tool was developed from survey results; with ongoing iterative feedback  from workgroup members, based on principles of user-centered design and quality  improvement.  

Results: Identified areas of need related to information sharing discussions were more  experience/education, having a written resource, more research, peer support, and more  time with parents.  

Summary: The DSD Sharing Health Information Powerfully – Team Version (SHIP-T) is  a resource for DSD healthcare team members to utilize in hospital and ambulatory  settings to help caregivers of children with DSD share information with their social  support networks. Next steps include transitioning the SHIP-T to a parent handout.  

 

6. Title: The potential of good youth work  

Author: Joanna Mallinson  

Author’s role: Youth worker specialist and parent of an intersex child  

Author’s affiliations: The BE Project  

Abstract:  

Youth work is often misunderstood. I will explain what youth work is, how it can help  intersex young people, and why it should be considered an important strand of future  works with intersex. I will discuss practical considerations and challenges faced when  establishing youth provision. And highlight that, when planned and delivered in the right  way, youth work can offer real opportunities for personal and social growth/change.  

 

7. Title: Clinical case discussion  

Author: Kate Gething  

Author’s role: Clinical Psychologist  

Author’s affiliations: Newcastle Hospital NHS Foundation Trust  

Abstract:  

The case I wish to present is a long term piece of work that was multi-faceted in the type  of work we did and, for me, indicates the need for an integrated and timely pathway of  care to avoid crisis management.  

Case looks back at the work completed by H an 18 year old young person diagnosed  with Androgen Insensitivity Syndrome who was 12 at the time of referral to psychology.  Issues to explore around the circumstances of the referral  

● No commissioned service- part of good will work done in the department. 

● An attempt to build expertise- limited numbers of psychologists picked up  endocrine referrals to try for continuity.  

● Such work is not just case work, includes MDT liaison and support. 

Clinical issues explored in this case have been multi-faceted;  

● Adjustment to diagnosis (aged 11- late diagnosis) and management of significant  changes in mood and behaviour at this time. Also a developmental process.  ● Liaison with and support offered to the systems around the child, first and  foremost the family, but also the school as well as MDT.  

● Decisions about surgery  

● Exploration of sex, gender and sexuality.  

Finally I will reflect on how this work could have been different if I had been an integrated  part of the care team.