PSYCHOSOCIAL SUPPORT

PSYCHOSOCIAL SUPPORT
	Chapter 3 BACKGROUND AND ELABORATION

In the past, many DSD 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.

	TACKLING SHAME
When they leave the clinic, patients and families go out into the world and often encounter direct or indirect messages that they should be ashamed of themselves because the child has a DSD. Health care professionals can help families by regularly providing opportunities to talk about and process reactionary shame. One social worker who helps families with birth anomalies writes, “In my experience, if time is not dedicated to talking about the almost automatic development of shame, and how to reframe this experience, then it continues to flourish. This then leaves everyone at risk for creating a plan that is directed by shame-based decisions even when we least expect it. It’s important to avoid the impression that all negative reactions can somehow be stopped with surgery or other medical care. Shame can best be dealt with when we talk about it. The idea is to talk about it out loud and directly. Shame can be an isolating and terrifying thing, especially when it is either all we talk about or something we never talk about.” Meeting others who share similar challenges has been consistently identified by adults and families affected by DSD as the single most powerful therapeutic experience. It is not uncommon to hear adults with DSD and parents of children with DSD say that connecting with a peer supporter saved them from a sense of growing desperation born out of a mounting shame.[ Dreger1998 Kessler1998 Preves2003 Chase1997 ]

TACKLING SHAME

When they leave the clinic, patients and families go out into the world and often encounter direct or indirect messages that they should be ashamed of themselves because the child has a DSD. Health care professionals can help families by regularly providing opportunities to talk about and process reactionary shame. One social worker who helps families with birth anomalies writes, “In my experience, if time is not dedicated to talking about the almost automatic development of shame, and how to reframe this experience, then it continues to flourish. This then leaves everyone at risk for creating a plan that is directed by shame-based decisions even when we least expect it. It’s important to avoid the impression that all negative reactions can somehow be stopped with surgery or other medical care. Shame can best be dealt with when we talk about it. The idea is to talk about it out loud and directly. Shame can be an isolating and terrifying thing, especially when it is either all we talk about or something we never talk about.”

Meeting others who share similar challenges has been consistently identified by adults and families affected by DSD as the single most powerful therapeutic experience. It is not uncommon to hear adults with DSD and parents of children with DSD say that connecting with a peer supporter saved them from a sense of growing desperation born out of a mounting shame.[ Dreger1998 Kessler1998 Preves2003 Chase1997 ]