Disorders of Sex Development Peer Support

The 2006 Consensus Statement on Management of Intersex Disorders describes peer support as integral to a comprehensive model of care for disorders of sex development (DSD). Affected adults and families look to peer support groups (PSG) for informational, emotional and social support to strengthen coping and assist with the process of shared and informed decision making. Peer support for DSD is relatively new and much can potentially be learned from studies examining the relationship between PSG characteristics and their benefits in other medical conditions. Healthcare providers' awareness of and attitudes toward PSG can influence the degree to which families value such support. This chapter begins with a brief history of peer support for DSD, followed by a summary of the evidence-based literature on PSG across varied medical conditions. We then summarize findings from a recently conducted poll of key DSD peer support and advocacy organizations. The chapter concludes with recommendations for further development of DSD-specific PSG, opportunities for more complete integration of peer support in the model of healthcare and the advantages of input of patient stakeholders in establishing clinical research priorities.