Natalie Nokoff1, Merlin Ariefdjohan2, Sharon Travers1, Cindy Buchanan2,3. 1. University of Colorado Anschutz Medical Campus, Department of Pediatrics. 2. University of Colorado Anschutz Medical Campus, Department of Psychiatry. 3. University of Colorado Anschutz Medical Campus, Department of Surgery.
Abstract
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 DSD themselves or are a parent of a child with DSD) and to understand the experience of these volunteers. METHODS: Parents (n=29) of a child with DSD completed an electronic survey. Interviews were conducted with three clinic volunteers. RESULTS: 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. CONCLUSIONS: Incorporating clinic volunteers into a multidisciplinary DSD clinic is associated with high reported rates of satisfaction by families and volunteers.
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 DSD themselves or are a parent of a child with DSD) and to understand the experience of these volunteers. METHODS: Parents (n=29) of a child with DSD completed an electronic survey. Interviews were conducted with three clinic volunteers. RESULTS: 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. CONCLUSIONS: Incorporating clinic volunteers into a multidisciplinary DSD clinic is associated with high reported rates of satisfaction by families and volunteers.
Entities:
Keywords:
disorder of sex development; intersex; support group; volunteer
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