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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. [ABSTRACT FROM AUTHOR]

Introduction: Sex variations comprise a heterogeneous group of medical conditions. These include congenital adrenal hyperplasia (CAH), androgen insensitivity syndrome, Turner syndrome, and more, reportedly affecting approximately two percent of the population. These conditions can involve lifelong management. However, no research has examined the experiences nor the healthcare practices used with these individuals in their transitions through healthcare in Canada. Further, the majority of research on healthcare transitions from other countries focuses on the pediatric to adult care transfer, despite transitions taking place across the lifespan. Aims Objectives Theory or Methods: Firstly, we aimed to investigate the current context of care for individuals with sex variations through an environmental scan of the current care pathways and guidelines for transition used by health providers. This included a search of 13 Canadian Children's Hospital websites, a survey sent to providers, and freedom of information requests submitted to these hospitals. Secondly, we sought to learn from the experiences of individuals with sex variations and their families in transitioning through care, along with their providers' understandings of transition for this group. Thus, we conducted engagement sessions in BC and Ontario applying a community-participatory learning approach Highlights or Results or Key Findings Through the environmental scan, we found no hospital-specific resources used by healthcare providers for guiding care transitions for individuals with sex variations. Our engagement sessions consisted of in-person focus groups and virtual interviews with individuals from Ontario and British Columbia. We also included secondary data from a small BC study with women with CAH. Altogether, data from 17 individuals (15 with sex variations and two caregivers) was included. Interviews highlighted three important themes: (1) transition is a lifespan activity - individuals faced different healthcare challenges that required transition as they aged, (2) the building of personal agency, and (3) wellness promotion and healing in this population. An additional output from the study included the co-development of a small advisory group of adults identifying with sex variations, involved in work around health education and consultation. Conclusions: Canadian care guidelines for managing transition with sex variations are lacking. For individuals with sex variations there is little information to support individual health literacy and selfmanagement. There exists an opportunity for these individuals and their providers to begin building a visible network that can inform care delivery and policy. Implications for applicability/transferability sustainability and limitations: A limitation of this study was failure to adopt inclusive terminology at study conception (e.g., our website domain, dsdtransition.ca). We learnt that intersex or sex variation is preferred by the community. We encourage use of inclusive terminology in healthcare and the co-development of transition guidelines with Canadians with sex variations [ABSTRACT FROM AUTHOR]

Congenital adrenal hyperplasia (CAH) encompasses a range of inherited autosomal recessive enzyme conditions that impact steroid hormone production. This lifelong condition has associated health risks for some individuals, including adrenal crisis, and menstruation and fertility issues. Health literacy materials focused on the physical and pharmacological aspects of managing menstruation (i.e., treatment to initiate or maintain menses for those with CAH) are scarce. This article addresses this gap by exploring menses patterns in people with CAH. An integrative literature review searched articles published between 2005 and 2020, and 30 articles met inclusion criteria. Study findings indicated that while menarche seems to occur at an average age for people with CAH, menstruation is commonly disrupted and irregular. Several studies reported individuals achieving regular menses and pregnancy, while others noted individuals consistently showing poor control, irregular menses, and infertility despite ongoing treatment. A few studies reported such individuals as "non-adherent" or worse "non-compliant" with their medication regimens when health outcomes were lower than expected. We emphasize that such fault finding by health service providers around adherence acts as a barrier to communication with people with CAH. We argue that a sustained and coordinated person-centred approach focusing on communication and education across situational, developmental, and organizational transitions, can promote health literacy, foregrounding individuals' health and bodily autonomy across their life span. Future research needs to address gaps in knowledge translation that supports menstrual education for individuals with CAH. Studies should also address how medication management is assessed and adherence negotiated with individuals with CAH. [ABSTRACT FROM AUTHOR]