Role of Peer Support Groups for Individuals with Disorders of Sex Development

In spite of the society being more open about sex today, taboo still surrounds Disorders of Sex Development (DSD). Psychoeducation and support not only provide information about the disorder, but also provide mechanisms to manage day-to-day family activities. 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). Peer support groups (PSG) bring together people with similar issues and contribute to emotional peer support and to dispel taboos, strengthen coping and assist with the process of shared and informed decision-making. Support groups also work with clinicians to improve patient care, help in research activities and provide training to peer group facilitators. The support groups may have face-to-face meetings, teleconferences or online communities. They also manage better public understanding to channel the concerns of a scattered population. Healthcare providers’ awareness of and attitudes towards PSG can influence the degree to which families value such support. Support groups promote a multidisciplinary care approach for patients with DSD with the goal of improving patient/family outcomes and quality of life.