Abstract
Finding appropriate support for families facing issues surrounding a child with a genetic condition, whether diagnosed or not, is an important part of what pediatric genetic counselors do. We sought to investigate how pediatric genetic counselors utilize referrals to social support for families with a genetic diagnosis, how counselors determine which groups are most appropriate for a given family and whether counselors refer patients on a diagnostic odyssey to comparable support groups to help these families cope. We distributed an online survey to members of NSGC through an NSGC eblast. We geared our recruitment to current pediatric genetic counselors and those who have practiced within the last 10 years. One hundred thirty six pediatric genetic counselors responded to our survey. We found 95% of our respondents refer families with a genetic diagnosis to parent support groups at least some of the time. Counselors determine which type of support group to recommend to families based largely on the individual family’s preference, the family’s access to the internet, and the availability of a suitable support group near the family’s home. Over half (54%) of the counselors indicate that they do not refer families who are on a diagnostic odyssey to support groups, and a portion of these indicate that they know of no groups to which to refer these families. Of those who do refer, many refer them to groups for the “the medical problems the child is having… such as autism groups, epilepsy groups, etc.” Referral to a support group for parents/families of children with genetic conditions remains an important way counselors facilitate emotional support for families, putting them in touch with those who can offer them support outside the session.