Health-Related Psychosocial Support for Women with Differences of Sex Development: A Qualitative Study.

STUDY OBJECTIVE: A diagnosis of differences of sex development (DSD) carries complex health and psychosocial implications. Current clinical management guidelines highlight the critical role of psychosocial support, yet such support is not well defined and has not been specifically explored amongst women with lived experience. METHODS: We undertook this study to explore the experiences of health-related psychosocial support needs amongst women with differences of sex development (DSD). Ten semi-structured qualitative interviews with young Australian women with a range of DSD diagnoses were completed and thematic analysis guided by descriptive phenomenology was undertaken. RESULTS: Support had been primarily provided by families. Although participants overall felt satisfied with their available support systems, they felt that their health and social support needs were relatively neglected when compared to the support services routinely provided to individuals affected by cancer. Nevertheless, social acceptance, physical implications, reproductive options, and maintaining better health outcomes were identified as issues that could be improved with further psychosocial support. Participants articulated both the need to access a spectrum of resources and the importance of identifying clinicians knowledgeable about their specific DSD diagnosis. CONCLUSIONS: Psychosocial support is an essential component of healthcare and should be routinely included across the continuum of care for young people with DSD and families. Participants emphasized a broad spectrum of support needs; flexible multimodal psychosocial support is necessary to optimize clinical care. This reflects the diverse and evolving nature of support, over time, throughout the healthcare journey.