Objective:
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 a DSD themselves or are a parent of a child with a DSD) and to understand the experience of these volunteers.
Method:
Parents (n = 29) of a child with a DSD completed an electronic survey. Interviews were conducted with 3 clinic volunteers.
Results:
Most participants (72%) met with a clinic volunteer, and the 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 the parents (48%) attended an postclinic 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%) and met volunteers with a similar medical condition (64%), and this helped them think more positively about their child’s future (64%). Those who did not attend a lunch cited logistical reasons for not attending.
Conclusions:
Incorporating clinic volunteers into a multidisciplinary DSD clinic is associated with high reported rates of satisfaction by families and volunteers.
Implications for Impact Statement
Adult volunteers with a difference of sex development are rarely incorporated into multidisciplinary pediatric programs. This single-site study showed that most parents who met with a volunteer in the clinic found their interaction to be helpful in coping with their child’s condition.
