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

Area of Science:

• Pediatric Endocrinology
• Genetics and Genomics
• Psychosocial Support

Background:

• Multidisciplinary clinics for children with a difference of sex development (DSD) are recommended to include peer support.
• There is a lack of information on how to effectively implement peer support in DSD clinical settings.

Purpose of the Study:

• To evaluate family satisfaction with clinic-based volunteers who have DSD or are parents of children with DSD.
• To understand the experiences of these clinic volunteers.

Main Methods:

• A mixed-methods program evaluation was employed.
• Parents (n=29) of a child with DSD completed an electronic survey.
• Three clinic volunteers were interviewed.

Main Results:

• Most parents (72%) met with a clinic volunteer, and the majority (81%) found the interaction helpful.
• Key discussion topics included support groups, the child's future, and diagnosis information.
• Parents attending support group lunches reported positive experiences, such as connecting with similar families and gaining positive future outlooks.

Conclusions:

• Integrating clinic volunteers into multidisciplinary DSD clinics is linked to high family and volunteer satisfaction.
• Peer support programs can positively impact families navigating the challenges of DSD.