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Study recommends that parents, physicians share decisions in sex development disorder surgery
Date:7/23/2010

es feelings.

"The pediatric literature suggests that about a quarter of families want completely family-driven decision making and another quarter want completely physician-driven decision making," Kon said. "The other half want shared decision making. We tried to develop a process that would allow families to feel comfortable with expressing their feelings and values in a setting that also involves physicians, nurses, chaplains and others in the process."

"We realized," Karzakis said, "that we could help to improve decision making for patients with disorders of sex development just by working on the decision-making process. Part of what we're saying in this paper is that you don't need to know all the answers, and a decision about gender assignment does not have to be a decision about surgery you don't have to conflate those decisions."

The researchers recommend these six steps for shared decision making:

  1. Set the stage and develop an appropriate team, for example, including all of the subspecialists required for such a complex decision and ensuring parents are comfortable with team members.
  2. Establish preferences for information and roles in decision making to ensure that parents have access to the amount of information that they want in the manner they want to receive it.
  3. Perceive and address emotions associated with the decision-making process to ensure that parents' need for information and their feelings about the decision are acknowledged. Parents who are overly anxious about the child's atypical genitals may not be prepared to effectively participate in the decision-making process and may be unable to offer truly informed permission. To the extent possible, parents who are experiencing strong emotional responses need help addressing these feelings before authorizing elective surgery.
  4. Define concerns and values, since how physicians frame discussions with parents can have a significant impact on how a
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Contact: Phyllis Brown
phyllis.brown@ucdmc.ucdavis.edu
916-734-9023
University of California - Davis - Health System
Source:Eurekalert

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