Psychological support for individuals with differences of sex development (DSD).

OBJECTIVE: Congenital conditions with atypical development of chromosomal, gonadal, or anatomic sex characteristics are referred to as Differences of Sex Development (DSD). Psychosocial care is recommended to be an integral part of clinical management for individuals with DSD. Few studies have examined the perceived need for, utilization of and the opinions of individuals with DSD regarding psychological support. METHODS: This cross-sectional study was part of a European multicentre study in 14 different medical centres in six countries. In total, 1040 individuals with DSD participated in a patient-reported outcome questionnaire asking about experiences and opinions regarding psychological support in DSD care. RESULTS: A majority of the participants reported that they had not received psychological support, in childhood and/or adolescence (70.6%, n = 692) nor in adulthood (67.9%, n = 661). Need for psychological support in childhood and/or adolescence was reported by 51.3% (n = 503), need for psychological support in adulthood, was reported by 49.5% (n = 482). The majority (80.2%; n = 718) agreed with the statement that people with DSD should always be offered psychological support. According to 78.7% (n = 697) of the participants, parents of children with DSD should always be offered psychological support. CONCLUSION: Our findings support the existing consensus that psychological support should be an integral part of DSD care. The discrepancy between received and perceived need for psychological support suggests that individuals with DSD experience barriers to access mental health care services. Psychosocial and psychological services for children, adolescents and adults should therefore be available and offered throughout the lifespan to individuals with DSD.

Intersex people's perspectives on affirming healthcare practices: A qualitative study.

Intersex people have variations in their sex characteristics that do not exclusively fall within binary definitions of male and female. This community experiences discrimination in the medical setting due to the pathologization of intersex bodies, including 'normalizing' genital surgeries without the child's consent. While research has explored biomedical aspects contributing to intersex variations, there is limited research centering intersex people's perspectives on their healthcare experiences. The aim of this qualitative study was to understand the experiences of intersex people in the medical setting, with the goal of providing recommendations to clinicians to promote affirming healthcare practices. Between November 2021 and March 2022 we conducted 15 virtual semi-structured interviews with members of the intersex community about their experiences with healthcare providers and perspectives on how their care could be improved. Participants were recruited through social media, with the majority residing in the United States. Through reflexive thematic analysis, 4 major themes were conceptualized: (1) the exclusion of intersex people in binary frameworks, (2) the common experience of medical trauma, (3) the value of psychosocial support, and (4) systemic change to address intersex healthcare. Recommendations were generated based on participants' narratives, including a recommendation for providers to use a trauma-informed approach to care. Healthcare providers must prioritize patient autonomy and ensure consent throughout their medical visits in order to promote intersex affirming care. Depathologization of intersex variations and comprehensive teachings of intersex history and medical care must be incorporated into medical curricula to mitigate experiences of medical trauma and to relieve the burden placed on patients to be their own medical experts and advocates. Participants shared the value of being connected to support groups and mental health resources. Systemic change is needed for the normalization and demedicalization of intersex variations and for the medical empowerment of the intersex community.

The psychology of people with variable sex characteristics/intersex.

Psychological research on people with variable sex characteristics (VSC)/intersex is broadening from the traditional exploitation of this population to ask nature/nurture questions about sexuality and gender. Healthcare for this population has been highly controversial, prompting research on psychological outcomes, the life-span development of adults with VSC, and distress trajectories of parents of children with VSC. Psychological research on clinical psychologists' roles in multidisciplinary care teams, and on decision making about medical pathways informed by those teams, both inform the evaluation of contemporary healthcare. Research is broadening to consider schoolchildren with VSC, elite athletes with VSC, and public understanding of VSC. The growing interdisciplinary field of intersex studies provides critical resources for psychologists.

Listening to Individuals with Differences in Sex Development or Intersex and Their Families: "Not Doing Surgery Does Not Mean Doing Nothing".

Informed decision-making and considerations of the child's best interest offer a starting place for building informed and lifelong discussions that promote the long-term interests and the well-being of individuals experiencing differences in sex development (DSD) or intersex traits. Parents require sufficient information and support to understand what "doing something and doing nothing" really means when learning about nonsurgical options. This may take the form of health literacy support, asking how parents are given access to meaningful and understandable information, as well as psychosocial support and psychological care. Timely psychological assessment and interventions that support informed decision-making actions are an essential aspect of holistic care for children and youth with DSD and their parents. Without actionable tools or approaches, parents cannot make informed decisions about their child's health and, as such, health literacy is a key attribute to aid decision making for both parents and children. As individuals with DSD become increasingly adept at building resourcefulness and gathering and applying knowledge about their bodies, limiting irreversible surgeries in childhood can afford wider life choices. To this end, an educated and informed comprehensive and helpful multidisciplinary group understands and embodies, as a whole team, the need for compassionate, emotionally supportive, and validating care in all interactions with parents of children and individuals with DSD. The paper draws on the primary author's experiences working with the charity, dsdfamilies, concluding with actionable approaches that include supporting personal knowledge through health literacy, examining team-based psychological care, and psychosocial approaches across the lifespan.

Psychological Care of Children and Families with Variations or Differences in Sex Development.

The paediatric clinical psychology literature provides applicable evidence for use in specialist healthcare settings and services. The general approach of psychological care of children and families with paediatric conditions is recognizable as preventative and destigmatizing, aimed to maximize personal agency with shared responsibility for achieving best outcomes via multi-professional teamwork. Recent commentaries regarding healthcare for children with differences in sex development (DSD) have noted service-level pitfalls, including poor teamwork and underuse of early and integrated psychological intervention. Psychological research regarding the variously termed DSD, variations in sex development, variation in sex characteristics, or intersex has historically centred around the assessment of sex differences, gender identity, and the impact of including hormone influences on brain and behaviour. Psychological research in this specialist area has not focussed on the evaluation of specific clinical interventions or psychotherapeutic models but has investigated psychological aspects of multi-professional healthcare provision. There are new goals for psychological care of children with variations or differences in sex development (V/DSD). These require a framework of good communication to enable those receiving care to come to know and articulate their own hopes for treatment and support. Paediatric psychological intervention studies involving larger clinical groups such as diabetes provide evidence applicable to DSD populations. A risk of stigma is recognized as inherent to some physical interventions within routine paediatric care of people with V/DSD. Psychological care and intervention should be aimed at minimizing these risks via questioning and examining their assumed need. Psychological approaches can provide a foundation for ethical and rights-based multi-professional care of children with V/DSD.

Condition openness is associated with better mental health in individuals with an intersex/differences of sex development condition: structural equation modeling of European multicenter data.

BACKGROUND: Openness on one's health condition or (stigmatized) identity generally improves mental health. Intersex or differences of sex development (DSD) conditions have long been kept concealed and high levels of (internalizing) mental health problems are reported. This study examines the effects of condition openness on anxiety and depression and the role of mediating concepts in this population. METHODS: Cross-sectional data of individuals of 16 years and older with an intersex/DSD condition was collected in 14 specialized European clinics as part of the dsd-LIFE study. Patient-reported measures were taken on openness and shame (Coping with DSD), self-esteem (Rosenberg Self-Esteem Scale), satisfaction with care (CSQ4), anxiety and depression (HADS). Scores were compared per clinical group and data were analyzed via structural equation modeling (SEM) to calculate prediction and mediation models. RESULTS: Data of 903 individuals were included in this study (Turner syndrome (n = 284), 46, XY DSD (n = 233), CAH (n = 206) and Klinefelter syndrome (n = 180)). Participants were moderately open on their condition. High levels of both anxiety and depression were observed across the sample. In SEM analysis, the tested models predicted 25% of openness, 31% of anxiety and 48% of depression. More condition openness directly predicted lower anxiety and depression symptoms, as well as indirectly through increased self-esteem, self-satisfaction and satisfaction with social support. CONCLUSIONS: Condition openness is associated with lower anxiety and depression in individuals with an intersex/DSD condition. Healthcare may provide the necessary knowledge and skills to employ one's optimal level of self-disclosure in order to improve mental health.

Information sharing in differences of sex development: The creation of a caregiver-support tool.

INTRODUCTION: Social support can be a protective factor against the negative mental health outcomes experienced by some parents and caregivers of children with differences of sex development (DSD). However, established social support networks can be difficult to access due to caregiver hesitancy to share information with others about their child's diagnosis. Health care providers in the field of DSD, and particularly behavioral health providers, are well positioned to help caregivers share information with the important people in their lives in order to access needed social support. This article summarizes the development of a clinical tool to help clinicians facilitate discussions regarding information sharing with caregivers of children with DSD. METHOD: Members of the psychosocial workgroup for the DSD -Translational Research Network completed a survey about their experiences facilitating information sharing discussions with caregivers of children with DSD and other health populations. The results of this survey were used to develop a clinical tool using ongoing iterative feedback from workgroup members, based on principles of user-centered design and quality improvement. RESULTS: Workgroup members consider information sharing an important aspect of working with caregivers of children with DSD. Additional resources and tools were identified as potentially helpful to these discussions. DISCUSSION: The DSD Sharing Health Information Powerfully-Team Version (SHIP-T) is a resource tool for DSD health care team members to utilize in hospital and ambulatory settings to help caregivers of children with DSD share information with their social support networks. The final SHIP-T is included in this article. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Management of Gender Determination of Newborns and Children with Disorders of Sex Development Using a Multidisciplinary Approach: An Exploratory Study of Islamic Perspective in Malaysia.

Management of newborns with disorders of sex development (DSD), especially in deciding the need for a sex assignment surgery, is a complex matter. It is associated with many bioethical issues, such as concerns about the rights and welfare of the newborns and the reliability of parents' consent to the paternalistic disposition of physicians in making the best decisions. This paper, containing interviews with six medical experts and three religious' experts, aims to raise awareness of the multidisciplinary approach, which uses a combination of medicine, religion, and ethics in managing children with DSD, particularly in Malaysia, to avoid unnecessary psychological, biological, emotional, and societal ramifications.

Health intervention experiences and associated mental health outcomes in a sample of LGBTQ people with intersex variations in Australia.

People with intersex variation/s have sex characteristics determined by reproductive anatomy or chromosomal, gonadal, or hormonal expressions that are not typical of medical and societal norms for male or female bodies and are widely subjected to irreversible medical interventions at an early age to reinforce sex assignment. These interventions may be accompanied by experiences of lack of autonomy for the individual and, at times, lack of fully informed consent on the part of the individual or their parents/carers. People with intersex variations additionally experience high rates of mental health concerns relating to stigma, discrimination and poor healthcare experiences. The intersections between LGBTQ identities and intersex variations are poorly understood but are important given a high proportion of people with intersex variations identify as LGBTQ. This study explored associations between healthcare experiences and mental health outcomes among 46 LGBTQ people aged between 18 and 67 years old with intersex variations in Australia. Findings provide evidence of associations between suicidal thinking, suicidal attempts, depression or anxiety and negative healthcare experiences, including limited autonomy and consent, and challenges accessing psychological support. These highlight the need for further research and proactive intervention to advance human rights and improve health outcomes for this population.

Theorising health equity research for people with intersex variance through new materialism.

Health inequalities impact sex-variant people in highly differentiated ways. This is evidenced in much academic and activist intersex research documenting the highly specific forms of inequalities arising from misrecognition, discrimination and human rights abuses inherent to pathologised accounts of non-normative bodies. Important theoretical work further interrogates the implications of sex variant subjectivities, identities and bodies for static or binary notions of both sex and gender. In this paper, we aim to contribute further to this scholarship. We draw upon feminist materialist and Deleuzean-informed understandings of materials or matter to rethink debates over sex-variant subjectivities, identities and bodies in relation to inequalities in health. We argue 'the turn to matter' and associated new materialist theories draw attention to the complex, dynamic relational assemblages and entanglements mutually constituting the affective, embodied and socio-material worlds of intersex people. Informed by these theories, we propose that inequalities can be more fully addressed through a new health equity research agenda that is co-produced with sex-variant people. This agenda will enable a fuller exploration of the unsettling but transformative capacities of intersex matters and meanings with the contextually specific understandings of equity in relation to health and health care.

Challenges Waiting for an Adult with DSD.

BACKGROUND: Disorders/differences of sex development (DSD) comprise a heterogeneous group of inborn conditions where the individual's sex chromosomes, gonads, and/or anatomical sex are discordant. Since the Chicago Consensus Conference in 2005, multidisciplinary care has been implemented in specialised paediatric tertiary care centres and clinical practice has substantially changed towards a more holistic approach. SUMMARY: Psychological support has become a key factor in the management of DSD. After paediatric care, one of the main challenges is the transition of patients to expert care in adulthood. Patients frequently experience difficulties in accessing specialised medical care in adulthood, resulting in loss to follow-up affecting the patients' physical and psychological health as well as quality of life. Clinical features and long-term outcomes are highly variable in most DSD conditions. Although medical care has improved, morbidity and mortality are increased in all conditions. A particular challenge in the care of DSD patients in adulthood is optimisation of fertility potential. Ideally, this is addressed already in adolescence and requires close interaction of not only paediatricians and adult endocrinologists but also urologists, andrologists or gynaecologists, and psychologists. KEY MESSAGES: This review addresses issues relating to transition of DSD care from the paediatric to adult care as well as health-related challenges in adulthood in DSD.

Censoring Intersex Science: A Medical School Scandal.

A senior pediatric endocrinologist at a leading medical school in Canada has for years provided the introductory lecture on Disorders of Sex Development/Intersexuality (DSD/I) in the standard second-year course. In 2020/2021, two students complained to medical school administrators about six specific issues of intersex theory and care that were addressed in the lecture (Polychronakos, 2021). Subsequently, the administration replaced the professor with a different lecturer, thus effectively censoring the dissemination of intersex science. An overview of the status of the clinical literature on intersexuality shows that the students' critiques focus on concepts and facts that have been developed in extensive medical and sexological research over the past 50-60 years, as is shown for each of their points of critique. By censoring the professor's teaching, the medical school not only violated academic freedom, but also suppressed well-established scientific facts, kept medical students uninformed about the diverse points of view in this area of clinical management, and likely undermined future evidence-based medical and psychosocial care by these students for individuals with this type of medical condition.

First Adolescent Romantic and Sexual Experiences in Individuals With Differences of Sex Development/Intersex Conditions.

PURPOSE: Adolescence is an important period for sexual development, including sexual debut. The purpose of this study was to assess first romantic and sexual experiences and debut age in individuals with differences of sex development (DSD/intersex) and compare these with age-matched and gender-matched population control values. METHODS: Questionnaire data on sociodemographic characteristics, romantic and sexual milestones (e.g., masturbation, dating), satisfaction with sexual life and sexual activity at follow-up, self-esteem, and feelings of femininity or masculinity were collected from 976 participants in Europe with a DSD condition. Participants were divided into six diagnostic subgroups based on their diagnostic classification: women with Turner syndrome, congenital adrenal hyperplasia, 46XY-DSD nonvirilized, and 46XY-DSD female partially virilized conditions and men with 46XY-DSD male or Klinefelter syndrome. Age-specific and gender-specific reference values were retrieved from a Dutch population sample. RESULTS: Individuals with DSD were less likely to reach each of the romantic and sexual milestones compared to their peers without these conditions and they were significantly older when reaching these milestones. Between clinical subgroups, individuals with Klinefelter were significantly older when reaching milestones and in the female groups and individuals with Turner were the least likely to reach milestones. Furthermore, a higher age when reaching several romantic and sexual milestones was correlated with lower self-esteem, lower satisfaction with sexual life, and lower sexual frequency at follow-up. DISCUSSION: Due to a difference in biopsychosocial context, individuals with DSD often experience a different and/or delayed sexual development during adolescence. Healthcare providers should be aware of these differences in adolescents with DSD and their sexual development to optimize affirmative counseling.

Integration of child life services in the delivery of multi-disciplinary differences in Sexual Development (DSD) and Congenital Adrenal Hyperplasia (CAH) care.

INTRODUCTION: Multiple studies have demonstrated the benefit of incorporating certified child life specialist (CCLS) services in various aspects of pediatric care. Although the significance of psychosocial support of patients with Disorders of Sexual Development (DSD) and Congenital Adrenal Hyperplasia (CAH) is increasingly recognized, the involvement of CCLS services into the DSD and CAH multidisciplinary care model has yet to be described. OBJECTIVE: To evaluate the feasibility, acceptability, and patient and family experience of routinely incorporating CCLS services into the multidisciplinary DSD and CAH care model. STUDY DESIGN: As part of a quality improvement initiative, CCLS services were routinely incorporated in the multidisciplinary DSD and CAH clinics at our institution. Encounters for patients seen in clinic between July 2018 through October 2019 were reviewed for demographic information, DSD diagnosis classification, CCLS documentation, and whether an exam under anesthesia (EUA) was required due to an incomplete clinical exam. CCLS documentation was reviewed for assessments, interventions, whether patients tolerated their physical exams, time of CCLS services, and additional CCLS support beyond the physical exam. All patients were limited to one physical exam per clinic visit. RESULTS: Out of the 45 encounters with CCLS involvement, 42 (93.3%) exams were well-tolerated. CCLS assessments considered patient development, communication considerations, temperament, medical stressors, coping preferences, and patient preferences for activities and distractions. Interventions included preparing patients for their physical exams, encouragement before and during exams, addressing patient stressors, distractions and coping mechanisms, and advocating for the patient. No patients required an EUA. DISCUSSION: The CCLS aimed to provide families with a sense of control during clinic visits and teach them to advocate for themselves. The CCLS helped prepare and distract patients for their clinic visit and addressed the sensitive nature of the physical exam by focusing on the emotional and development needs of patients. CCLS contributions to a positive patient experience are consistent with multiple studies demonstrating the benefit of CCLS services for pediatric care. This quality improvement initiative ultimately helped to create a positive experience for patients and families. CONCLUSION: This study demonstrates the feasibility, acceptability, and positive impact of CCLS services in the delivery of patient and family-centered care for patients with DSD and CAH as part of the multidisciplinary team model.

Creation of an Electronic Resource Repository for Differences of Sex Development (DSD): Collaboration Between Advocates and Clinicians in the DSD-Translational Research Network.

INTRODUCTION: People with differences of sex development (DSD) and their families need education about these conditions while receiving emotional and peer support to participate in shared decision-making, reduce social isolation, and optimize physical and psychosocial outcomes. Barriers to education and support include limited knowledge and awareness by healthcare providers, tension among patient and medical communities, varied quality of educational resources, and the sensitive nature of DSD. We aimed to create an electronic repository of vetted quality online resources about DSD. METHODS: The electronic resource repository (e-RR) was a collaboration between affected individuals and advocates and healthcare providers in the DSD-Translational Research Network (DSD-TRN), an NIH-supported consortium of US teams committed to standardizing and optimizing care in DSD. The e-RR development and ongoing growth involved: (1) identification of resources by the project team (3 advocates and 1 physician), (2) evaluation and feedback by DSD-TRN clinical teams, (3) creation of the e-RR, and (4) review and revision. Twitter-like descriptions accompanied each entry; resources were categorized by target age, audience, and condition. RESULTS: Thirty-seven web-based educational, peer and advocacy support, and clinician-oriented resources were reviewed. Eight of 10 DSD-TRN teams responded to a survey regarding resource inclusion. Awareness of individual resources varied widely. Consensus was achieved when opinions differed; 30 resources were included. The e-RR is available online and as a downloadable booklet at http://www.accordalliance.org/resource-guide/. CONCLUSION: The e-RR increases awareness of and access to vetted educational and support resources for those with DSD and healthcare providers. It represents important collaboration between advocates and providers.

Differences/Disorders of Sex Development: Medical Conditions at the Intersection of Sex and Gender.

Defined as congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical, differences or disorders of sex development (DSDs) comprise many discrete diagnoses ranging from those associated with few phenotypic differences between affected and unaffected individuals to those where questions arise regarding gender of rearing, gonadal tumor risk, genital surgery, and fertility. Controversies exist in numerous areas including how DSDs are conceptualized, how to refer to the set of conditions and those affected by them, and aspects of clinical management that extend from social media to legislative bodies, courts of law, medicine, clinical practice, and scholarly research in psychology and sociology. In addition to these aspects, this review covers biological and social influences on psychosocial development and adjustment, the psychosocial and psychosexual adaptation of people born with DSDs, and roles for clinical psychologists in the clinical management of DSDs.

Defining successful outcomes and preferences for clinical management in differences/disorders of sex development: Protocol overview and a qualitative phenomenological study of stakeholders' perspectives.

INTRODUCTION: Utilizing a qualitative phenomenological design, the Defining Successful Outcomes and Trade-offs study examined stakeholder perspectives regarding optimal healthcare delivery and outcomes for individuals with a difference/disorder of sex development (DSD). OBJECTIVE: We describe study methods and provide an overview of themes and subthemes. STUDY DESIGN: Interviews were conducted with individuals with a DSD (n = 24), parents of those with a DSD (n = 19), healthcare providers (n = 37), and others (n = 30). Primary questions regarding clinical management of patients with DSD were: "What is a successful outcome?" and "How do you achieve it?" RESULTS: Themes included: understanding of DSD diagnosis and self-efficacy in management is necessary but complex; patient and family psychological well-being; support from others versus being stigmatized; affected person experiences physical health and accepts the implications of their condition; complexities in DSD decision making, roles and expectations; and knowledgeable providers and multidisciplinary teams are essential, notwithstanding persisting barriers. Participants recognized competing values potentially forcing trade-offs in decision making. DISCUSSION: Recognition of diverse and sometimes conflicting perspectives regarding optimal pathways of care and outcomes - both within and among those with DSD and their providers -promises to enhance shared decision making. CONCLUSION: Diverse perspectives and perceptions of trade-offs associated with DSD healthcare emphasize the need to tailor care for patients and families.

Patients with disorders of sex development undergoing surgical treatment: A psychosocial evaluation in adolescence.

The surgical outcomes of disorders on sex development (DSD) are comparatively well studied in the literature, whereas studies investigating its impacts on mental health are scarce. In this study, we aimed to evaluate psychiatric diagnoses, sex roles, quality of life, and adolescents who were surgically treated because of DSD as well as parental attitudes in their parents. The study group consisted of 19 patients diagnosed with DSD and the control group consisted of 20 age- and gender-matched healthy peers. The Kiddie-Schedule for Affective Disorders and Schizophrenia was performed by a child and adolescent psychiatrist to assess the psychiatric diagnoses. To evaluate quality of life (QoL) and sex roles, The Pediatric Quality of Life Inventory (PedsQL), and the Bem Sex Role Inventory were used, respectively. Mothers completed the PedsQL-Parent Form and the Parental Attitude Research Instrument (PARI). Of 19 children in the patient group, 14 (73.7%) had a past or current history of at least one psychiatric disorder. The most common psychiatric disorder was major depression. There was no significant difference between the two groups in terms of sex roles. A statistically significant difference was found between the study and control groups in four factor scores of the PARI. While there was no significant difference between the groups in terms of the children's QoL scores, parent-proxy reports of psychosocial health scores and total QoL scores of the study group were significantly lower than the controls. This finding shows that parents perceived the QoL of their children with DSD as worse than their healthy peers, probably due to their concerns for the future. In conclusion, it is important to identify and treat the psychiatric disorders concomitant in patients with DSD.

Behavioral Health Diagnoses in Youth with Differences of Sex Development or Congenital Adrenal Hyperplasia Compared with Controls: A PEDSnet Study.

OBJECTIVE: To evaluate the odds of a behavioral health diagnosis among youth with differences of sex development (DSD) or congenital adrenal hyperplasia (CAH) compared with matched controls in the PEDSnet database. STUDY DESIGN: All youth with a diagnosis of DSD (n = 1216) or CAH (n = 1647) and at least 1 outpatient encounter were extracted from the PEDSnet database and propensity-score matched on 8 variables (1:4) with controls (n = 4864 and 6588, respectively) using multivariable logistic regression. The likelihood of having behavioral health diagnoses was examined using generalized estimating equations. RESULTS: Youth with DSD had higher odds of a behavioral health diagnosis (OR, 1.7; 95% CI, 1.4-2.1; P < .0001) and neurodevelopmental diagnosis (OR, 1.7; 95% CI, 1.4, 2.0; P < .0001) compared with matched controls. Youth with CAH did not have an increased odds of a behavioral health diagnosis (OR, 1.0; 95% CI, 0.9, 1.1; P = .9) compared with matched controls but did have higher odds of developmental delay (OR, 1.8; 95% CI, 1.4, 2.4; P < .0001). CONCLUSIONS: Youth with DSD diagnosis have higher odds of a behavioral health or neurodevelopmental diagnosis compared with matched controls. Youth with CAH have higher odds of developmental delay, highlighting the need for screening in both groups.