DEFINITION OF PATIENT-CENTERED CARE FOR DSDs

Patient-centered care means remaining clearly focused on the well-being of individual patients.[Stewart2001] In the case of DSDs this specifically involves the following principles.

  1. Provide medical and surgical care when dealing with a complication that represents a real and present threat to the patient’s physical well-being.[Conte1989 Vilain2002]

  2. Recognize that what is normal for one individual may not be what is normal for others;[Richter-Appelt2005 Stewart2001 Dittmann1990 Reilly1989] care providers should not seek to force the patient into a social norm (e.g., for phallic size or gender-typical behaviors) that may harm the patient.[Lloyd2005 Wilson1998 Schober2004b Chase2003 vanSeters1988]

  3. Minimize the potential for the patient and family to feel ashamed, stigmatized, or overly obsessed with genital appearance; avoid the use of stigmatizing terminology (like “pseudo-hermaphroditism”)[Dreger2005] and medical photography;[Creighton2002] promote openness (the opposite of shame) and positive connection with others, avoid a “parade of white coats” and repetitive genital exams, especially those involving measurements of genitalia.[Lee2004]

  4. Delay elective surgical and hormonal treatments until the patient can actively participate in decision-making about how his or her own body will look, feel, and function;[AAPBioethics1995 Schober1998b Chase1999 Dreger1998] when surgery and hormone treatments are considered, health care professionals must ask themselves whether they are truly needed for the benefit of the child or are being offered to allay parental distress;[Daaboul2001 Crouch2004 Howe1998 Consortium2006b Chase2003]mental health professionals can help assess this.

  5. Respect parents by addressing their concerns and distress empathetically, honestly, and directly; if parents need mental health care, this means helping them obtain it.

  6. Directly address the child’s psychosocial distress[Brown2005 BakerTowell2003] (if any)[Berenbaum2004] with the efforts of psychosocial professionals and peer support.

  7. Always tell the truth to the family and the child;[Conn2005 Groveman1998] answer questions promptly and honestly, which includes being open about the patient’s medical history and about clinical uncertainty where it exists.