Psychosocial implications of disorders of sex development treatment for parents

Abstract

Purpose of the review Historically, studies of caregivers of children with DSD have been limited. Recent findings Recent data reveal that parents of young children with DSD report increased stress, anxiety, depression and decreased quality of life (QoL) in ways that are similar to parents of children with other types of chronic illnesses. Also similar to other chronic illnesses of childhood, parents of children with DSD exhibit overprotective parenting and perceive their child as being vulnerable. These emotions and behaviors exhibited by parents are concerning as they may limit an affected child’s emotional and social development over time. Perhaps more unique to the situation of DSD is the perceived, or real, child-focused stigma experienced by parents of children with DSD. Summary Interventions to improve parents’ psychosocial adaptation to their child’s medical condition, including coaching in how to discuss their child’s condition in a manner that makes them feel safe and supported, are needed to optimize outcomes for families.

Understanding the needs of professionals who provide psychosocial care for children and adults with disorders of sex development

“… 9 15 17 Our survey revealed a large variety between providers’ training, background and position in the DSD team; standardisation in the development of psychosocial care only recently came under attention. 15 Nevertheless, we observed high agreement among respondents in priority of services in psychosocial management. Combined with research publications, 9 15 17 we think that this survey can be the start for development of standards of psychosocial care in DSD.…”

The Evaluation of Parental Acceptance Towards Children with Sex Chromosomal Disorders of Sex Development Using A Mixed-Method

“…A thematic analysis was used to analyze the qualitative data by following six steps procedure for data analysis: familiarizing with data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and writing the report. 18 Prior to analysis, the researchers (IF & AE) read the interview verbatims carefully to get familiar with the data, then generating initial codes, searching for themes, reviewing themes and defining and naming themes. Afterwards, all researchers (IF, AE, TIW, SMHF) reviewed the themes and wrote the reports after all authors agreed with the findings.…”

Impact of cell‐free DNA screening on parental knowledge of fetal sex and disorders of sex development

“…In our DSD clinic, however, we have also noted parental distress, as severe as suicidal ideation, among parents who had discrepant results between cfDNA screen and ultrasound regarding fetal sex 16 . Depression and anxiety have also been noted in literature documenting parental adjustment to children diagnosed with DSD postnatally 17‐22 . While studies have not examined the difference in parental impact between prenatal versus postnatal diagnosis, it is important to recognize the potential psychological impact on parents of receiving such a diagnosis regardless of timing.…”

“…16 Depression and anxiety have also been noted in literature documenting parental adjustment to children diagnosed with DSD postnatally. [17][18][19][20][21][22] While studies have not examined the difference in parental impact between prenatal versus postnatal diagnosis, it is important to recognize the potential psychological impact on parents of receiving such a diagnosis regardless of timing.…”