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- W4386860523 abstract "Abstract Background The Chicago Consensus statement introduced multidisciplinary care, psychosocial support and peer support for minors with variations of sex characteristics (VSC) and their parents. However, there is a lack of data on the provision and implementation of psychosocial support. This study addresses the gap in the knowledge on the type and timing of psychosocial support for minors with VSC and their families. It examines the provision of peer support, and compares perceptions of the level of implementation of psychosocial support among the participating HCPs and peer support group members. Perceptions of the obstacles to fuller provision of psychosocial care and peer support are also discussed. Methods A survey was conducted based on snowball purposive sample of healthcare professionals and members of peer support groups across Europe. 301 responses were received and analysed using descriptive and inferential methods. Results Regarding the current and aspired practice of different types of psychosocial care, almost all respondents considered psychosocial support to be needed. The most common features of current practice included discussing diagnostic procedures (86 respondents; 69.4%), with similar frequencies and proportions of general emotional support, discussing terminology and discussing medical treatment. In relation to the timing, the moment of the healthcare practitioner suspecting a variation of sex characteristics/Disorders or Differences of Sex Development (VSC/DSD) diagnosis was the aspired, but not currently achieved, point of implementation of psychosocial support; aspired to by 84 respondents (67.2%), but current practice for only 33 (26.4%). Inferential analysis showed significant differences in the perceived level of implementation of psychosocial support between healthcare professionals and peer support providers ( p < 0.001 for all anticipated points of implementation of psychosocial support.) Parental distress and lack of training appeared to be the most difficult challenges faced by medical professionals. Conclusions The survey shows that psychosocial support and collaboration between healthcare providers and peer support groups have been insufficiently implemented, yet the need remains high. As early non-vital medical interventions carry a high risk of poor outcomes and parental distress, psychosocial support should be provided at the earliest point, when VSC are suspected or diagnosed. Follow-up studies should implement and assess the indicators for provision of psychosocial support and health care." @default.
- W4386860523 created "2023-09-20" @default.
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- W4386860523 date "2023-09-19" @default.
- W4386860523 modified "2023-09-27" @default.
- W4386860523 title "Psychosocial Care for Infants, Children and Adolescents with Variations of Sex Characteristics: Results from a Pan-European Survey" @default.
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- W4386860523 doi "https://doi.org/10.21203/rs.3.rs-3265797/v1" @default.
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