PSI-I Launch Event 1
EVENT 1 PRESENTATIONS ORDER:
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).
EVENT 1 PRESENTATION DETAILS:
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
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
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
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.
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
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.
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
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
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
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.
PSI-I Launch Event 2
PSI-I Launch Event 2
PSI-I Launch Event 2
Biographical Introductions of Presenters
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.
Caroline 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.
Megan 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.
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.
Order of presentations
Denise Steers: Research to resources
Megan Usipuik, Emma Amyot & Caroline Sanders: Menstruation management and person-centred care in congenital adrenal hyperplasia
Katrina Roen: Understanding parental decisions and regrets in the context of hypospadias surgery
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 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.