Parents of Children With Newly Diagnosed Disorders of Sex Development Identify Major Concerns: A Qualitative Study

Prenatal detection and evaluation of differences of sex development: A qualitative interview study of parental perspectives and unmet needs

“…Medical education on controversies in the care of people with DSD has historically been limited, and as this field rapidly evolves there is a need for improved and ongoing education for clinicians. 41,42 The need for formal psychological support for parents during the prenatal period is paramount, 21 made even more important by the limitations on peer support these families experienced due to concerns about disclosure (again, related to societal-level stigma surrounding DSD), similar to the findings of Crissman, et al 43 There is emerging evidence that parental distress during pregnancy impacts the child's mental health outcomes later in life. 44 It is therefore essential to provide comprehensive psychosocial evaluation and intervention to help families navigate the disclosure process.…”

“…The need for formal psychological support for parents during the prenatal period is paramount, 21 made even more important by the limitations on peer support these families experienced due to concerns about disclosure (again, related to societal‐level stigma surrounding DSD), similar to the findings of Crissman, et al 43 . There is emerging evidence that parental distress during pregnancy impacts the child's mental health outcomes later in life 44 .…”

“…13,14 Algorithms have been proposed to coordinate the prenatal evaluation in these situations, [15][16][17] and much research has centered around the postnatal psychosocial functioning of families with children affected by DSD. [18][19][20][21] However, relatively little attention has been given to the psychosocial implications of the prenatal evaluation. 22,23 While the primary aim of prenatal diagnosis may be to optimize medical care of the infant, an important secondary aim is anticipatory guidance to optimize the family's emotional preparation.…”

“…The increased availability of cfDNA screening has led to higher rates of prenatal detection of SCA (although patients may opt out of SCA screening) as well as genotype/phenotype discordance (discordance between chromosomal sex predicted by cfDNA and genital appearance on prenatal ultrasound (ultrasound (US)) imaging) 11,12 though cfDNA remains an imperfect screening tool 13,14 . Algorithms have been proposed to coordinate the prenatal evaluation in these situations, 15–17 and much research has centered around the postnatal psychosocial functioning of families with children affected by DSD 18–21 . However, relatively little attention has been given to the psychosocial implications of the prenatal evaluation 22,23 .…”

Supporting parents of children born with differences in sex development

“…Studies have shown that parents of neonates and children with a DSD feel shocked, frightened and disbelieving after diagnosis, and many reach the clinical threshold for a diagnosis of anxiety disorder and post traumatic stress disorder (PTSD) 3–8. Slijper et al found that feelings of shame and guilt were commonly reported by parents of children with androgen insensitivity syndrome (AIS), especially mothers 5.…”