Communicating About the Diagnosis

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Your child’s diagnosis is important to your family, and also to those who care for you, including extended family, friends and co-workers. Communicating about your child’s condition gives others the opportunity to support you as you process the information and begin to face what lies ahead. At the same time, you may worry that speaking with others will invite unwanted judgement or advice. You may be concerned that you will be expected to attend to others’ reactions while you are managing your own. There is no right time or one method for sharing this news. As your child’s caregiver you can decide when, how and what to share.

Your Team:

Geneticist

A specialist in evaluation, diagnosis, and management of patients with hereditary conditions.

Psychologist

A mental health professional who uses therapy and other strategies to support coping and adjustment and treat concerns regarding social, emotional, or behavioral functioning.

Social Worker

A trained professional who works with people, groups and communities to help them better their lives.

Palliative Care Clinician

A specialist whose aim is to improve the quality of life of their patients over the course of their illness regardless of stage, by relieving pain and other symptoms of that illness.

Depending on the condition, a genetic counselor or medical provider can suggest language to use. A psychologist, social worker, or palliative care clinician can provide space for talking through your concerns about sharing your child’s diagnosis.

It is natural to want to control the amount of information others receive, even close family and your closest friends. You may not be immediately ready for them to know all the information about your child’s condition, the potential for clinical progression or prognosis.

Consider why it is you want to share. Naturally, you are hoping for love and empathy. Keeping this goal in mind can help you determine when, how, and how much to tell. Some families communicate about the diagnosis after they have had time to adjust to the information themselves, while some share the diagnosis immediately. You may feel obligated to share with others if they have been very involved in the diagnosis journey, but the decision still is entirely up to you.

If your child’s condition is inherited, a genetic counselor can help draft a family letter that summarizes the gene and the familial genetic variations. Once they have the information, your family members can decide how they wish to proceed (and it is entirely possible that they won’t all proceed in the same way).

“Once we found out that it was genetic … I obviously mentioned it to everybody. In particular, my brother wanted to have another baby and he went and got tested … my other brother and sister know about it and they may get tested if they decide to start a family. You’ve got to be extra safe with these kinds of situations.”

– Lindsay, parent of Quinlan

Talking to Your Child

Depending on your affected child’s age and cognitive ability, you may want to explain to them their condition and what might be expected to occur. A disease expert can help you anticipate possible changes in speech, vision, hearing and movement, so that you can describe to your child what is happening and provide reassurance. A psychologist or child-life specialist can support these conversations. (You may eventually wish to share some of this information with others as well.) The CPN guide “Speaking with Your Child about Prognosis” offers guidelines for having these conversations.

Talking to Siblings

Siblings are likely to note that conversations are happening, and to see changes in their sibling. They may have related questions and concerns about their own health and well-being. They may imagine or anticipate outcomes and need information and support. If the condition has a genetic cause, you will also at some point want to address the possibility that the sibling(s) are carriers. This is a topic to discuss with a genetic counselor and/or clinician, so that it is done at an age-appropriate interval and with sensitive, accurate language.

Communicating at Work

As you live into your child’s diagnosis you, and/or a working partner, may have concerns about sharing your child’s condition at your place of work. However, you will want information about health insurance, if available to you, and you may need to negotiate your working hours.

You may wish to start by being factual: this is what has occurred; this is what we know; this is my plan and what I need in order to work (for example, working from home, going to part-time, etc.). The section on Work offers more details on how to navigate work and associated feelings and challenges.

Communicating to Your Community

Sharing your child’s diagnosis outside your immediate family circle gives friends and extended family a better understanding of what your family is going through (and in some cases, to alert others to genetic risks). But it is understandable to feel anxious about sharing your child’s diagnosis with others. You may feel vulnerable and exposed. You may fear disappointment or being hurt by the responses of others as they learn the news. Will they judge you? Support you? Distance themselves?

It is acceptable to share information in stages, and doing so may help keep you from feeling overwhelmed. Perhaps sharing that your child has inherited a genetic condition, or that it is progressive, or that it affects certain organ systems, is sufficient for any given moment. It is also acceptable to say that you are still digesting the information and learning, and that you will share more details when you’re ready. It is likely that people will have many questions for you, but you don’t have to answer until you’re ready.

Over time, a less detailed letter or email, or series of communications to your community, will allow you to share as much (or as little) as you wish. You can share online resources or offer other information you have learned. Some families use social media as their method of sharing and communication regarding how their child and their family are doing; others prefer more privacy. There are no rights or wrongs; only what you feel is in your and your family’s best interest.