Development of a decision support tool in pediatric Differences/Disorders of Sex Development

Standards of Care for the Health of Transgender and Gender Diverse People, Version 8

“…Providing counseling may also involve guiding families and individuals of all ages through a shared decision-making process around medical or surgical care. Providers may employ decision aids to support this process (Sandberg et al., 2019 ; Weidler et al., 2019 ).…”

“…Providers must set an expectation as soon as possible for ongoing, open communication between all parties, especially since parents may experience distress due to the uncertainty associated with DSD and may seek quick fixes (Crissman et al., 2011 ; Roberts et al., 2020 ). Models of shared decision-making as well as related decisional tools have been developed to support ongoing communication between HCPs and families/individuals (Karkazis et al., 2010 ; Sandberg et al., 2019 ; Siminoff & Sandberg, 2015 ; Weidler et al., 2019 ). In addition to setting an expectation for dialogue, providers can also set the tone of communication.…”

LGB+ and heterosexual-identified people produce similar analogies to intersex but have different opinions about its medicalisation

“…The present study suggests that if time were allowed to conceptualise and formulate questions that lay people might also come to more fully conceptualise intersex characteristics, and to make more grounded decisions. In this regard it is disappointing that, even when new decision aids are developed, that they are not readily adopted in clinical practice (Sandberg et al, 2019). We hope the present study informs clinical discussions about the kinds of public understanding of intersex characteristics that already exist, and the process by which laypeople formulate opinions that are the basis of decisions about available medical interventions in this area.…”

Society for Endocrinology UK Guidance on the initial evaluation of a suspected difference or disorder of sex development (Revised 2021)

“…In cases where a high value is placed on religious opinions, centres may choose to involve an experienced religious leader such as a hospital chaplain, imam or rabbi to provide help and understanding when addressing the patient's or parents’ concerns. The parents and young people may need support and guidance as to how to share essential understanding within their close community and those in trusted caring relationships with the child in a way that both utilizes existing support whilst preserving the child's need for privacy, dignity and self‐autonomy 22,23 . In addition, adolescents will need direct support in navigating complex issues such as the potential for any intervention before embarking on sexual activity, decisions regarding gonadectomy, medication management and the potential for fertility preservation prior to any irreversible procedure.…”

“…Whilst there is a need to study these interventions in more detail within the field of DSD, early provision of psychosocial support is increasingly becoming standard practice in the newborn period 25 and it should also be considered good practice in the setting of DSD. Decision‐making processes and tools have been suggested as useful methods of engaging parents in a way that provides information and is supportive 22 . Such psychosocial support will allow those impacted to examine and understand their early emotional reactions as well as explore present and future worries, adjust to the period of uncertainty during the initial diagnosis process and prepare for ongoing engagement with healthcare, whilst facilitating inclusion in informed decision‐making about themselves or their child 26 .…”