REDUCING STIGMA RELATED TO MEDICAL CARE

REDUCING STIGMA RELATED TO MEDICAL CARE
	Chapter 3 BACKGROUND AND ELABORATION

Adults with DSD report having been inadvertently subjected to contexts productive of stigma within medical institutions where they were treated as children.[ Dreger1999 Preves2003 ] It is crucial that multidisciplinary teams avoid directly or indirectly stigmatizing patients with DSD and their families.[ Frader2004 ] The following practices should be observed.

Use verbal and body language that signals openness and acceptance of the child and the parents; be calm, reassuring, and honest[Conn2005] (including being honest about uncertainty).
Use gender-neutral language when gender is uncertain, but never use objectifying language such as “it”; instead employ phases like “your baby” or “your child” or “your little one.”[ Chase2002 Harmon-Smith1999 ]
Encourage parent/child attachment and bonding.
Keep in mind that, while medically indicated, close inquiry about parental history inadvertently produces feelings of parental responsibility and guilt about the DSD; avoid unnecessarily repeating these questions and explain the medical reason for such questions.
Talk with team members and the family about the child and family’s strengths,[Mouradian2001] so that the challenges posed by the DSD are kept in perspective.
Provide the patient and family routine opportunities to talk about both their hopes and fears (i.e., provide proactive support).
Talk with the child as soon as he or she is capable of understanding that he or she is being talked about; this way patients don’t accidentally feel like objects in the room.
Avoid imparting the message that the child is a curiosity or freak by reducing to a minimum the number of health care professionals who physically attend to the child and family.[Chase1997]
Avoid whenever possible repeated genital exams, especially those involving measurement.
Treat gender atypical traits of the child as acceptable for that child.[Williams2002]
Limit medical photography[Creighton2002] to what is absolutely necessary for the patient’s care and (as HIPAA requires) do not allow photographs to leave the patient’s chart; adults with DSD have reported lifelong harm from finding their own nude pictures in medical texts or on the internet, and from being unable to obtain copies of photographs that they know should have been kept in their records.
Make sure the child knows the truth as he or she grows up; this will prevent the harmful situation where he or she learns the truth in a confusing and inadequate way, for example, by a slip of the tongue or a glance at the medical chart.[Groveman1998]
Let the patient know he or she is not wholly defined by his or her diagnosis.
Provide access to peer support and counseling.[Warne2003]

Health care professionals should keep in mind that families look to them for guidance; they should monitor their words, movements, and actions carefully to be sure they are fully supporting the patient and family in their unique experience.

Encouraging parents to talk with others, right from the start, will forestall closeting and the growth of shame in the family. For example, families who have been through gender changes suggest that their experiences were made easier by letting trusted family and friends know early on about their children’s DSD.

	EMPOWERING CHILDREN WITH DSD
A number of adults with DSD recall being greatly affected, in both positive and negative ways, by how their specialist doctors worked with them. One psychologist who has had extensive contact with children and adults with DSD offers these thoughts: “Particularly crucial is the child’s need to be specifically acknowledged and asked for feedback about an experience, permission for an exam, etc. One adult I spoke to recently talked about what an enormous difference it made for her when a doctor made a joke at his own expense, which made him vulnerable and left her feeling ‘seen’ as an individual. Another wished someone had told her it was okay to yell and be angry when something hurt. Simply explaining what you’re doing will certainly help, but my contacts seemed to need something more, help in finding a voice, permission to become empowered.”

EMPOWERING CHILDREN WITH DSD

A number of adults with DSD recall being greatly affected, in both positive and negative ways, by how their specialist doctors worked with them. One psychologist who has had extensive contact with children and adults with DSD offers these thoughts: “Particularly crucial is the child’s need to be specifically acknowledged and asked for feedback about an experience, permission for an exam, etc. One adult I spoke to recently talked about what an enormous difference it made for her when a doctor made a joke at his own expense, which made him vulnerable and left her feeling ‘seen’ as an individual. Another wished someone had told her it was okay to yell and be angry when something hurt. Simply explaining what you’re doing will certainly help, but my contacts seemed to need something more, help in finding a voice, permission to become empowered.”


TIMING OF HORMONAL THERAPY		TELLING THE TRUTH