Parent experience with volunteers and support groups in a multidisciplinary DSD clinic

Despite recommendations that clinics for children with a difference of sex development (DSD) should include peer support, information on how to provide this support is lacking. We utilized a mixed-methods program evaluation to evaluate family satisfaction with our clinic-based volunteers (who either have DSD themselves or are a parent of a child with DSD) and to understand the experience of these volunteers.

Parents (n=29) of a child with DSD completed an electronic survey. Interviews were conducted with three clinic volunteers.

Most participants (72%) met with a clinic volunteer and majority (81%) rated their interaction as helpful. Most common topics discussed between parents and volunteers included: connecting to support groups (81%), their child's future (62%), and learning about their child's diagnosis (48%). Half of parents (48%) attended an after-clinic support group lunch, and 43% of these attendees rated the lunch session as helpful. Parents who attended a lunch liked the experience because they met other families with a child with a similar medical condition (100%), met volunteers with a similar medical condition (64%), and it helped them think more positively about their child's future (64%). Those who did not attend a lunch cited logistical reasons for not attending.

Incorporating clinic volunteers into a multidisciplinary DSD clinic is associated with high reported rates of satisfaction by families and volunteers.