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

Dsdfamilies is a charity based in the UK that supports parents of infants and children with differences in sex development (DSD) or intersex traits. The first author of this paper was a long-standing trustee of the charity, with the second and final authors more recently supporting the charity. Therefore, this paper is a coproduction between advocates and academics. The voice of the primary author is noted in italics throughout the paper as a personal reflection of experiences since 2002. We hope that some will find our message useful in how they think about their work, be it clinical care, advocacy and activism, policy-making, or academia.

DSD or intersex traits include a range of rare conditions in which the internal reproductive organs and/or genitals do not develop as expected because of chromosomal, genetic, and hormonal variations [1]. However, DSD nomenclature is complex, with the term DSD perceived as acceptable by some and controversial by others, who draw attention to epistemic injustice with the medical narrative of “disordered” [2]. Ongoing youth work and reports being prepared by the charity have noted that young people with DSD appear to be using condition-specific terms, e.g., androgen insensitivity, gonadal dysgenesis, and penoscrotal hypospadias, possibly as a way for them to understand their bodies and talk with others who share similar experiences. However, this observation warrants further exploration and study.

Consent, informed decision-making, and understanding a child’s best interest are complex concepts within the theory of bioethics. Consent is about perceived rational choices and decisions and is linked to respect and emotional boundaries, as well as health literacy and knowledge. The concept is discussed across a range of disciplines, yet, within medicine, the drive has been to challenge the ethos founded on implicit trust that decisions and assumptions made on behalf of others are in their best interests, which Howe [3] cites as “inherently problematic” (p. 4). Changes in social expectations have resulted in a shift toward informed consent, with a recognition that the individual needs to oversee their own care. So, how an individual can access, understand, and apply health information becomes a determinant of health and critical aspect of consent and equity [4]. As such, informed consent is a prerequisite to decision-making where specific actions are needed that support individual protection, autonomy, prevention of abuse, the building of trust all within the goal of developing, and maintaining personal integrity. Such decisions are made by the medical provider and/or parent framed around what was then believed to be in a child’s best interests. What this means for individuals with DSD remains complex, as noted by Lampalzer et al. [5], in that rational parental choices may or may not translate to later individual happiness with a decision made on one’s behalf, albeit acting in the best interest of the child at the time of decision-making.

Historically, the narrative of DSD as a psychosocial or medical emergency or necessity has resulted in a wider range of debate within many disciplines as this situates a normative discourse as dominant [6]. However, within early childhood the nature of informed consent is on hold since any surgical decision making is made within a broad sphere of what is considered in the child’s best interest [7, 8]. Currently, the General Medical Council (GMC) of the UK permits physicians to perform procedures that may not offer immediate or obvious therapeutic benefits for children and youth so long as the procedures are in the patient’s “best interest” [9]. However, identifying a person’s best interests can be challenging since it may be difficult to determine medical urgency as balanced against biopsychosocial risks [10], long-term outcomes including dissatisfaction [11], and a belief that a child’s best interest is genital appearance and sex/gender congruity [8]. With limitations in evidence-informed practice [10] and increased human rights awareness and the impact of harm [12], parents can find themselves positioned as the responsible individual(s) caught between attending to their child’s needs while listening to medically positioned sex/gender-framed normative discussions. However, what remains is the lack of support for parents (as well as providers) in how “best” to raise a girl with a larger clitoris or a boy with a penis that looks atypical. Much of this is happening at a critical time whereby parents are focused on building relationships with their infant [13] or with adolescents trying to understand a new diagnosis, all of whom are emotionally overburdened or in shock which can blur the boundaries of “best interest” [14, 15]. Faced with uncertainty, medical care can become parent-centered care [16], which can further confuse what “best interest” means for the child or adolescent.

We are mindful that the genital surgery debate is complex since medical intervention and outcome data are among the critical factors in dialogs between parents and medical teams. When discussing genital surgery in infancy or early childhood, action to hold off surgery in infants and younger children is slow to materialize into practice [17]. Emerging studies that support the distress that surgical decision-making holds for parents highlights the fast pace at which decision-making happens [18]. Further, Hegarty et al. [19] acknowledge that the action of decision-making in the best interest of the child is held in a fragile space between parents and health care providers, without a clear delineation of necessary and unnecessary. What remains missing, crucially, is clarity about the other options. Informed decision-making should include a discussion of alternative options – but if alternative options of a nonsurgical pathway inclusive of peer and psychological care are lacking, how informed is this?

We must consider if the oversimplification of the debate as “surgery versus no surgery” hides the real investment, indeed the real work and financial resources, that are needed to support children and their families, regardless of any decision taken. Considering changes to policy in various countries, a complete ban of early genital surgeries does not, on its own, ensure the raising of and improved quality-of-life outcome of a happy, healthy, and confident child, adolescent, or young adult with DSD. A ban serves to further highlight the existing gap in services that are needed to support children with DSD and their parents. While the child’s rights continue to be discussed [19, 20], aiding children and their parents to live, learn, and grow together unencumbered is critical, but with the knowledge that when issues and questions arise (especially from the young person), addressing these must be at the forefront of care. We need to pay attention to testimonial injustice by focusing on the space that any “fix” leaves regardless of personal provider opinion either for or against surgery, as a child’s best interest. The question then becomes what can we do to meaningfully fill this gap, and who is best placed to do this work?

Considering the aforementioned challenges, the matter at hand now becomes “how best” to support parents facing the future with a child born with DSD? Framed within epistemology, the limitations of knowledge are transparent as the nature and origin of individual experience vary significantly. One small step to open discussion and begin conversation is to share a common language, which may be possible via developing, in partnership with individuals with DSD and their families, accessible, current, and comprehensive educational information.

Commonly, parents are insufficiently advised and supported to be able to make informed decisions about their child’s body [18, 21]. Without relevant and unbiased information offered in an understandable and accessible manner, and without nurturing individual resourcefulness to be able to accept and process complex information, parents are positioned as “best interest” decision makers without the necessary components of choice. In order to achieve this goal, timely, consistent, skilled, and accessible supports, which include psychological assistance and care, are needed throughout childhood and across the lifespan [22].

Ultimately, we would like professionals, policymakers, advocates, and activists to explore using inclusive language (i.e., language that avoids bias or expressions of discrimination based on gender) focused on the best interests of the child that can promote the long-term goals and well-being of individuals living with DSD. At the same time, we are pragmatic and want to see positive changes framed within a model of bioecological care that recognizes that relationships and environments interact in ways that enable the child to develop and become more resourceful [23]. As such, the current paper aimed to integrate what preconditions need to be fulfilled and what support needs to be in place, with actionable tools and not merely concepts, when discussing the child’s best interests. This paper is not an empirical study but a commentary, grounded in two decades of experiential learning. Specifically, we discuss: (1) that parents cannot currently make informed or even shared decisions about their child’s health without adequate support, (2) how health literacy aids in decision-making to frame the child’s best interests, and (3) that psychosocial support and psychological care is required within the transition of knowledge and informed decision-making from parent to the individual. The following sections will discuss the above, drawing on insights from the primary author.

Historically, information about DSD was withheld from families and individuals due to fear, secrecy [24], stigma [25], and ignorance and, consequently, individuals and their parents had little understanding about such conditions [26]. It is now largely accepted that both individuals and their parents have a right to reliable, accessible, and meaningful information [22]. Furthermore, open communication with health professionals that includes simultaneously paying attention to language and psychological support can lead to shared decision-making that is informed and allows for personal autonomy [3, 26‒28]. However, consistent implementation of these qualities is scarce with Grimstad et al. [22] highlighting how gaps in such approaches impact lifelong care. Further, Hegarty et al. [19] describes how psychologists (here we add nurses) in DSD provider teams also experience epistemic injustice, so find themselves limited to involvement when a child or family is in distress.

Parents are often asked to make a wide range of decisions about their child’s body or health (e.g., surgery or medication). Parents’ access to and understanding of information may be further complicated by technical and inaccessible language used by healthcare teams [29]. Therefore, for parents the dialog about DSD is largely shaped by the opinions and voices of the health care professionals working with them. At times, the information received from healthcare providers may be outdated, unreliable, from a limited evidence-base, or flawed [30‒33]. Further, parents are asked to make these decisions with little or no psychological, counseling, or emotional assistance to help relieve their own feelings of confusion, guilt, shame, or fear about the social, emotional, and sexual future of their infant. This can result in parents feeling overwhelmed which, in itself, may cloud their choices [18] and rationality.

While psychology alone is not the panacea to solving the complexities surrounding decision making, reliable information and consistent psychological support can enable parents to make informed decisions about their child’s care. As a trustee of dsdfamilies, the first author has had the opportunity to listen to conversations with parents and attend conferences with providers, academics, advocates, policymakers, and activists since 2011. While not claiming to be representative of all parents or caregivers’ voices, the following offers from the primary author’s position a reflection of life experiences over the last two decades. The focus is on what could help new parents remain calm about the decision to not undergo early surgery. Some of these suggestions include the first author’s personal reflections, which are italicized:

• Emotional support and space that can help to mediate the effects of an unexpected DSD diagnosis,

• Helping parents to process the experience of having a baby with DSD by considering psychosocial barriers, i.e., loneliness; specifically, how peer support can help parents deal with the isolation that often results from having children with a DSD diagnosis,

• Acknowledging the complexity involved in parents discussing their experiences of having a child with intersex/DSD with concerns around privacy as well as honesty; as stated in the course “The missing link in DSD care” on the free ESPE e-learning platform¹, coauthored by the first author, “We cannot declare ourselves as parents of a DSD child without compromising the anonymity of our child”; we continuously have to walk a line between honesty and privacy that few people can understand,

• An opportunity to revisit the diagnosis, maybe after 1 year, when some perspective had returned; as the first author reflects, “I wish someone had checked my (absent) understanding. I appreciate that judging whether someone has fully understood a complex issue sufficiently to give informed consent (and/or live well) is a difficult subject – and it seems legal observers and ethicists are more concerned about ‘disclosure’ rather than ‘the quality of that disclosure’,”

• “Accessible and highly visual information about my child’s sex development and what that means for her expected medium to long-term development (e.g., puberty), and help to say this in my own words,”

• Help to imagine raising a child with deferred surgery and negotiate the social context of nurseries, babysitters, and school; support to help a young person feel good about their body; a psychologist, a specialist nurse, or peers to help families put that in practice, e.g., through role play or conversation,

• Much more information about growing children, confident parenting, and raising resourceful children; as the first author reflects: parents fear the questions their child may have, and when you have no peer support, social support, or psychological support, that fear is a big barrier to sharing information; yet it is the openness from the parent that makes a child stronger,

• Information about talking with a growing child (ages 2–18) about DSD, including how to explain, e.g., hormones and gonads, genital development and genital difference, chromosomal make-up: “If you don’t see that kind of support available, then‘removing the problem’ seems an attractive option. It is only later that you learn the problem has not gone away, you still have to tell the child,” and

• Information for children and teens: “The most important messages to my child have been – you are not alone, there are so many different pathways to becoming a woman, things were different in the past, but we believe that you are the best person to make decisions.”

Decision-making is a complex and tense process that can involve stress and anxiety, especially when the decision impacts a child. However, there are many ways to deliver “support” and, while some information exists to clarify “best interests,” it is the combination of both practical support and information that could help lessen the burden. As a charitable organization, dsdfamilies has sought to develop information that starts to address these shortcomings². In isolation, information does not help parents; only when shared, discussed, and used in practice is it useful. Only then does the information become meaningful and does it give the parent, the family, and the young person the agency we want them to derive from the information. Regardless of a surgical or deferred surgical pathway, using information in partnership, i.e., applying a person-centered care approach, equips parents with more confidence.

Health literacy is about one’s access to and capacity to process and understand health information, to make informed health decisions [34]. Thus, health literacy is a critical aspect in informed decision-making. Yet, currently, not only is the information being given to parents to inform decision-making lacking [32], but it is also unclear whether that information is presented in a way that parents have the space, capacity, and capability to process.

Indeed, who are the critical friends that parents can turn to weigh the options? Are there expert families available for parents to talk to? Who can share lived experiences? These aspects reflect on the value in peer relationships or access to counseling or services that can support parents or caregivers when faced with uncertainty and is encouraged by the 2006 Consensus Statement [1, 35]. Further, where is such information provided in a way parents can understand and use? What printed or online information can parents read, apply to their situations, and revisit to make sure they understood everything? And is it kept up-to-date? Essentially this aspect speaks to knowledge translation work, identification of knowledge needs or gaps, and the knowledge-to-action cycle [36].

The lack of support for health literacy in parents and individuals with DSD is clear when looking at the availability of menstrual information for individuals with congenital adrenal hyperplasia and their families. A study by Sanders et al. [37] found that not only was the research on menstruation for individuals with congenital adrenal hyperplasia limited, but there were limited health literacy resources for this group, which at a broader level has been discussed by Ernst et al. [29] among others. Parents can also help to increase their child’s health literacy by facilitating conversations that allow the child as a youth and later young adult to become a partner in the decision-making around their health and bodily autonomy. Health literacy is an ongoing and lifelong process that changes, over time, for parents and the individual with DSD. As such, learning to navigate any health system, access information, and apply this to meet goals and healthcare needs requires access to updated and accessible information.

While the development of knowledge in “intersex research” is burgeoning with contributions from a range of disciplines including sociology, legal and rights perspectives, clinical service delivery, activism, and the range of health care approaches [38], there remains little evidence of improvements in quality care that benefits the day-to-day experiences for people living with different sex development and their families. In daily life, many families and young adults who feel confused and isolated are left in need of basic psychosocial supports to not only help their decision-making regarding surgery and other life changing treatments, but especially to help in their processes of accepting, understanding, and living well with their conditions. This confusion and isolation, and desire for support, is illustrated by the first author’s personal experience reported in earlier work [39]:

“We wanted someone to tell us how our daughter was going to cope psychologically with having XY chromosomes. How we were going to cope psychologically with this. There and then, we needed someone to give us some perspective on the medium and long-term mental well-being of our child” (p. 572–3).

The Consensus Statement, published in 2006 and later supported by Brain et al. [40], clearly states the importance of psychology being a part of holistic multidisciplinary team (MDT) working with individuals with sex variations [1]. While this is inarguably an important component of MDT care [41], the call for a psychologist to provide psychosocial support and psychological care to families and individuals is complex and at times problematic [19].

First, it has the potential to send a message to the other professionals in the MDT that they are exempt from interacting with individuals and their families in a psychologically aware manner or from providing psychosocial support in any form. This can be further complicated when there are omissions in the team composition and inconsistent use of guidelines, as reported from England [41, 42]. However, a comprehensive and helpful MDT understands and embodies, as a whole team, the need for compassionate, emotionally supportive, and validating care in all interactions with the family or individual with intersex traits. The team can provide helpful information, direct to further information, and connect the family with resources, or work with the individual/parent to champion health literacy initiatives.

Second, barriers that prevent families and individuals from working with psychologists must be properly addressed. The “offering” of a psychologist to a family that has recently welcomed a baby with a sex difference could potentially send some overwhelming and scary messages to that family, such as the idea that because they are being presented with professional support, there is something “wrong” or that they are not doing “well” in their roles. Further, there are various reasons, including cultural and generational, that some individuals find talking with psychologists as uncomfortable, scary, taboo, or something they would never consider. At the same time, mental health promotion is every member of the MDT’s responsibility; as such, their practice should be psychosocially informed. Other disciplines, such as counseling, social work, or nursing also play an important role when sufficiently trained in DSD and person-centered or patient-oriented care. Within the team context, those with these expert skills can support parents throughout their child’s care versus only being included when a family is already in distress [41]. Further such individuals can also aid their colleagues to support parents and children by offering supervision or debriefing. Therefore, the team needs to invest in training and supervision in order to more comprehensively support parents of children with DSD.

Finally, the first few times that the family or individual is introduced to the idea of professional psychological care and support, they may not be ready or feel in need of it; however, that does not mean that they will never need nor want it. In the early stages of care, the rationale behind the presence of a psychologist (or other mental health specialist) in the team is part of the family being introduced to the service that is available for the long-term care of their child. The involvement of psychosocial support and psychological care should be a consistent approach that all health care professionals’ practice in their interactions with these families and individuals. We agree with Lampalzer et al. [35] that the provision for professional psychological support should be a routine part of care across the lifespan.

Psychosocial adaptation is a critical part of the process of transition during an individual with sex differences’ life, beginning in the moments after birth, and lasting throughout the lifespan. Parents and families need to make psychosocial adjustments as they learn about their child’s condition and the uncertainty in medical care and long-term outcome. Medicine does not have the answers and this can be a difficult conversation for all parties, nor is there a “fix” that renders future health care unnecessary. Some parents may choose not to become the custodian of knowledge about DSD for their child’s future while others may engage deeply, seeking emerging evidence and cataloging new research in ways that develop their own health literacy. The goal is that whatever approach is adopted, parents are able to process and accept their child’s condition and, as the child ages, begin to pass that knowledge, support, and validation to the individual [26]. The individual, then, requires psychosocial care and assistance as they too learn about, process and accept their own condition and begin to develop increased agency and autonomy in discussions and decisions about their body and well-being. This psychosocial work and enablement, alongside health literacy and the transition of knowledge and agency from the parent to the individual, allows for informed consent to become a meaningful and applied construct in their life-long health discourse.

In conclusion, before asking about decisions and when and how parents can make them, we first need to think about the preconditions that will meaningfully inform decision-making. Namely, that parents require sufficient information and support to understand what “doing something and doing nothing” really means. 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. As the child ages, how the transfer of knowledge and rational autonomy is shared and passed on from the parent and provider to the growing individual, as well as how they connect with psychosocial care and up-to-date health literacy, must be factored into healthcare approaches. By meeting these preconditions, we may then begin to think more long-term and have more meaningful and helpful discussions around informed decision-making that centers around those most affected – children and young people growing up with different sex development.

This paper aimed to go further than comment on this complex topic by offering some concrete, actionable tips that health professionals working with children and young people living with DSD and their families can use to improve the child’s healthcare experiences as well as develop their own understanding, acceptance, and autonomy of their bodies. This personal knowledge through health literacy, psychosocial support, and psychological care throughout the process, allows for improved informed consent in decision-making. Funding limitations are a reality within complex healthcare systems, so we offer cost-effective strategies that focus on improving clinical practice. We present five areas of recommendation to move forward and create change within the fields of medicine and psychology when working with individuals with DSD.

The coining of DSD in 2006 triggered a new dynamic in research, teaching, and international collaborations in DSD, which influence parental decision making. It is a worthwhile exercise for MDTs, individually and as a network, to work in transparent and collaborative ways, evidencing the application and evaluation of current best practice standards. Further, within individual MDT teams there needs to be both leadership and accountability to meet minimum international standards applying evidence informed practice to minimize patient harm and promote well-being. Actionable approaches can include

• Clear MDT articulation and adoption of minimum standards to include how these are translated to practice at a local and network level,

• Accountability in that the MDT has a role in providing consistent, current thoughtful and accessible information and psychosocial care and psychological care; this can be achieved through open communication, nonjudgement, promotion of agency and autonomy, and connection to resources,

• Applying a compassionate approach in leadership affords opportunity for respectful, open and honest, interdisciplinary dialog, to promote up-to-date knowledge across the team; further, such an approach provides opportunity to discuss potential biases and assumptions between disciplines to be discussed in ways that maintain integrity and ethical standards of practice with children and their parents,

• Adopting a child-centered approach to care that situates the child’s needs at the forefront of care, as noted by the first author’s experiences: It is not just about moving away from surgery, but about thinking which interventions (examinations, scans, blood tests, visits to clinic) are genuinely needed to monitor the growing child; it’s about paying attention to the social context of school and friends; evaluate your service through the eyes of the growing child and young person, address the questions they have, center building up their knowledge and the skills to negotiate living with DSD,

• Training opportunities for the team, with specific focus on communication, reflective practice skills, and respectful engagement that recognizes and strives to address power imbalances within healthcare practices,

• Education specifically focused on core elements of psychosocial well-being i.e., cultural sensitivity, as the benefits of cultural humility when working with children and their families are amplified in the early and transitional stages of DSD care,

• Ongoing continuing professional development work focused on communication, implementation science, and knowledge translation activities, and

• Benchmarking or other quality initiatives to be embedded within DSD MDT networks to strengthen evidence informed approaches and highlight areas for research, including patient-oriented research and community participatory studies.

For any parent or caregiver with an infant, child, or adolescent with a suspected DSD there is an overwhelming feeling of isolation. Therefore, we urge all MDTs to have a “psychosocial protocol” to run in tandem with diagnostics testing. Actionable approaches can include

• As a minimum, to assure parents they are not alone, providing a leaflet such as “When your baby is born with genitals that look different – the first days” (available in 14 languages from dsdfamilies [43]),

• Involving a trained specialist nurse (endocrine, genetics, urology, gynecology, or other), or a patient navigator to work alongside the psychologist, social worker, pediatric endocrinologist, and other members of the MDT during and after the diagnostic process; where available the opportunity to establish nurse home visits can be a significant support for parents,

• Where no specialist nurse is available, networks should consider pooling resources to explore appointment of a specialist nurse/patient navigator who can work virtually; this regional or national approach has greater traction in light of the pandemic and a realization that virtual specialist care is valued by parents, and

• MDTs have a clear advocacy role driven by frameworks such as implementation science to work with, educate, and support policy makers to invest in effective teams that can support individuals with DSD; early psychosocial and psychological support aims to limit adverse childhood experiences to promote safeguarding, and fostering caring relationships that build on mutual respect and trust, i.e., thereby enhancing cultural safety.

This is an emerging space in that MDTs are presently learning about nonsurgical outcomes at the same time as advocating for nonsurgical practice. Such a limitation does not absolve providers from supporting parents and children. We are faced with an epistemological shift where we need to discuss, in DSD networks, positive stories of nonsurgical approaches framed within a “can-do” positive light. Some actionable items for this area include

• All members of the care team should be educated in contemporary experiences of raising children without surgery, and the team dialogs with parents needs to be transparent, consistent, and as predictable as possible,

• MDT teams and networks need to recognize and fill the gaps in information and training materials that can help inform professionals and expose them to experiences of nonsurgical outcomes, effective psychosocial, and psychological care,

• Participating in self-reflection exercises that build on trauma-informed practice standards where a key principle is the awareness of power relations and its impact on trust in the health care relationship; a good MDT is trauma-informed and aware that trauma experiences are common in many aspects of healthcare,

• Building trust with parents allows new nonsurgical narratives to emerge in MDT clinics or in consultations, which can allow for parent or adolescent choice, collaboration, and connection, which demonstrates trauma-informed care, and

• Using a strengths-based and skills-building approach is critical for both MDT learning and parent and child life long adaptation and resiliency building.

Despite spending considerable time with parents, offering explanations, and listening to concerns, it is common that this information is not processed or is forgotten. The need for frequent explanation and clarification is a normal outcome following trauma; the event of DSD for many parents is reported as shocking, traumatic, and/or overwhelming. The first few weeks and months can remain a blur in parent’s memory, with specific events resulting in triggering difficulties memories. It is unclear how long this period lasts for, but it is not unreasonable to believe this can be several years, during which time parents have to accumulate, synthesize, and rationalize new knowledge and language associated with DSD. Making decisions against a backdrop of uncertainty is problematic leading to doubt and emotional burden. Actionable approaches can include

• Revisiting the information without recounting the traumatic story, thereby practicing trauma-informed practice,

• Collaborating with children and youth to help them manage their emotions; preemptive lifelong psychosocial and psychological care is needed, to be proactive versus reactive,

• Drawing on developmental theory across the life course to inform DSD education approaches to support parents, children, and young adults as well as support teams to develop well-being and health literacy “Check Points”; we recommend integrating these into routine practice allowing parents opportunity to revisit learning about DSD at their pace and stage of readiness, and

• Recognizing the trauma of isolation and actively addressing this with parents and young people with DSD; MDTs locally and as networks need to explore how they can provide peer support in a structured, regular way and how to connect with support groups, other families or peer-to-peer networks established informally in connection with the local MDT.

Finally, we urge MDTs to prioritize the positive benefits of peer support, such as being able to share, being able to learn, and having someone who understands. We recognize the barriers to disciplinary-driven support groups and the ethical implication of such an approach; however the burden of isolation for parents and young people with DSD remains a reality. We encourage DSD MDTs to discuss hesitations or barriers in suggesting support or peer-to-peer networking in ways that can support the team to identify gaps and approaches to help close these gaps in child-centered ways. Actionable approaches include:

• Providing peer support in many different formats, and with room for structured, semi-structured, and informal sessions,

• Ensuring that these peer support sessions are at the heart of each MDT, and not solely the responsibility of the psychologist or other mental health professional and are a key variable against which MDTs are measured,

• The need for policymakers to work with healthcare professionals by investing in peer support groups that brings together children and young people with DSD; an example of this is Empower-DSD, a clinical research project funded by the Innovation Funds of the German Healthcare Insurance [44], and

• Addressing the reasons that are too often given not to provide peer support (e.g., no time, no funding, worries about comparing different presentations/diagnoses, worries about comparisons between DSD care at different MDTs, no peer support group/support organization to host, worries about acquiring wrong information, concerns there is no training and safeguarding for peer supporters, some families do not want peer support).

In conclusion, there is much that can be done to educate and support individuals with DSD and their parents when making decisions about the child’s current and future health, and we believe that, specifically, health literacy, psychosocial support, and psychological care are key aspects of decision-making.

We are grateful for the opportunity to learn together, exchange ideas, and work toward an accounting process of reconciliation.

The authors have no financial conflict of interest. Three authors (E.M., J.W., C.S.) have sat on the board of trustees for dsdfamilies within the last 3 years.

No external grant or funding supported this work.

Manuscript outline: Ellie Magritte and Jo Williams. Discussion, framing, and writing of manuscript: Ellie Magritte, Emma Amyot, Megan Usipuik, and Caroline Sanders. Review, comments, and amendments: Jo Williams, Ellie Magritte, Caroline Sanders, and Megan Usipuik.