Engaging Confidently with Clinicians

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Arlene Baratz, MD, University of Pittsburgh, and AIS/DSD Support Group (USA)

Most families are overwhelmed when they learn that their child has a disorder of sex development (DSD). DSD is more common than most parents realize. Even though 1 in 800 children is born with some variation of what we usually think of as characteristics indicating that someone is a boy or a girl, people who work in clinics or hospitals can make families feel like their child is the only one in the world. During the initial flurry of testing, a flood of complicated information can overwhelm parents. Clinicians can sometimes be uncomfortable with discussions of matters related to sex and gender, and will focus on test results and not on how you feel about your child. Every now and then they must be reminded that you love your child (your baby, your toddler or young child, your pre-teen, or your teen), who is a whole person and not just a medical condition.

Your ultimate goal is to raise a happy and healthy child. There are many experienced doctors who will help you do exactly that, by taking the time to calmly talk you through your child's diagnosis, by discussing all aspects of any intervention your child may require, by using sensitive language, by giving you the time to adjust to the diagnosis - not forcing any quick ad hoc decisions, and by involving the child in discussions in an age -appropriate way.

Some parents though describe dealing with doctors as one of the most stressful aspects of the child-rearing experience, but you can empower yourself and learn how to become an advocate for your child. This is a gradual process during which you must remember that you are the ultimate expert on your child's well being. When you visit a doctor, take the initiative to introduce your child as a unique individual by saying something like, "This is my son William. He is an (age) year old (XX/XY) boy with (diagnosis). His previous treatment has been (xyz). He is physically healthy and involved in the following activities. Our current concerns are..." If you set the tone of the visit with a confident description, including some personal information, it helps the family and health care team establish expectations. It lets the doctor know that you are comfortable with using terminology and with including your child in discussions. Your child is observing this, too, and it will help prepare him/her as a young adult to assume responsibility for medical care later. You could prepare written questions about your child's physical development, testing, and medications for your doctors before medical visits to help you focus on the answers. Some families keep a journal or log containing photographs and test results in which they also write about their feelings during ongoing medical experience to later share with their child.

A dedicated informative note on this website will address reasons for genital exams, and how they should be done. It is always valuable to discuss with your doctor before your child attends the clinic whether and why it is necessary to have a genital exam. If you understand and accept the reasons for it, you will be better able to prepare your child for such an exam. Limiting both the number of people in the room and the number of genital exams is important for your child's mental health.

Parents and children who are living with DSD need emotional and social support. This is recommended as part of the standard of care, but many centers still do not have specialists on staff to provide these services because of shortages of trained mental health care providers/psychologists and of insurance reimbursement issues (in the United States). Although nurses and social workers can help fill some gaps, access to support from other affected people has been critical to many families. National and international groups are available, and some can provide local contacts for one on one help. You can also ask your doctors for local contacts.

All patients and families have certain rights in medical settings. Your family's privacy is protected (in the United States, by HIPAA laws), and you should have full access to medical records. Before treatment decisions are made, you are entitled to receive explanations of the proposed treatment, available alternatives, possible complications, and what is known in general about long-term outcomes. Parents have a right to know how much experience a provider has with DSD, including the number of operations a surgeon has performed, and whether or not the provider has tracked the long-term outcomes of treatment. If long-term outcomes are uncertain, you must be so informed. Except in the case of urinary blockage, there is no medical or social crisis requiring urgent surgery for children with DSD. Decisions about surgery and hormonal treatments with irreversible consequences should take place over time with unbiased information provided by multiple clinicians. Discussion of the personal and cultural values of both families and clinicians in a process of "shared decision-making" avoids later regret and improves the doctor-patient relationship.

Finally, if your experience with a clinician is unsatisfactory, you should be able to discuss this calmly and/or change providers without fear of being labeled "difficult" or maladjusted.