PSYCHOSOCIAL SUPPORT

In the past, many DSDs were recognized as psychosocial challenges but were not addressed with professional psychosocial resources.[Leidolf2006b] This has been changing, as it has in the care of other pediatric disorders, such as cleft lip and palate and childhood diabetes.[Gelfand2004] Though many families will adjust well without major professional psychosocial support, particularly if given the message by their pediatricians that their child is acceptable and lovable, those who need it should be provided access and encouragement to use those resources.

Peer support, both formal (in a clinical setting) and informal (through personal connections), often provides at little or no cost a critical form of care for patients and parents.[ Weijenborg2000 Chase1999 Preves2003 Warne2003 ] The multidisciplinary team system may provide the critical mass of affected families necessary for good, local peer support. Clinicians can also talk with colleagues at other institutions to connect families that might benefit from speaking with each other, and can develop good working relationships with support groups so that liaisons from the support groups are “on call” to help. Peer support may also be provided through internet groups and through the offering of telephone numbers from family to family (with their permission). At the same time, team members will be able to help families access more formal mental health support when needed.