March 11, 2024

Planning a family conversation about PKD

Do you talk about PKD within your family? Or are those conversations that you try to avoid?

In this blog, we explore the intricacies of planning for important family conversations about PKD, so that you can turn apprehension into unity, mutual support and informed decision-making.

Choose an appropriate time and setting

  • Find a quiet and comfortable place where you can talk without interruptions.
  • Pick a time when everyone is relaxed and not under time pressure.
  • Ensure that you have enough time to discuss the topic thoroughly.
  • Create an atmosphere conducive to open and honest communication.

Educate yourself

  • Before the conversation, gather information related to the topic. Be prepared to answer questions and provide resources.
  • Familiarize yourself with the potential emotional impact of the information.

Be honest and transparent

  • Start the conversation by expressing your love for your family members, and your desire to be open with them.
  • Be honest about the nature of this PKD topic, and its implications.

Encourage questions

  • Let your family members know that you are open to questions and that you'll provide as much information as you can.
  • Be patient and listen actively to their concerns.

Be prepared to listen

  • Be open to your family members' feelings, questions, and concerns. Active listening is crucial in fostering a supportive environment. Avoid interrupting, and allow them to express themselves fully.

Share your feelings

  • Express your own feelings about the topic. Let your family members know how you are coping with the information, and seeking support.
  • Share any plans you have for managing any complications, and your overall health.

Provide reassurance

  • Reassure your family members that you are taking steps to deal with this topic in a healthy way.
  • Offer hope and optimism while remaining realistic.

Discuss options

  • Discuss any options applicable to this topic, and the reasoning behind your own preferences.
  • Allow room for the discussion of different options.

Respect individual choices

  • Acknowledge that each family member may have different reactions and coping mechanisms around this PKD topic.
  • Respect their individual choices regarding testing, treatments, healthcare decisions, and emotional processing.

Offer emotional support

  • Acknowledge that this information might be difficult for them to process. Offer emotional support and encourage them to express their feelings.
  • Reassure them that you are taking steps to manage this issue, and your ongoing health.

Involve healthcare professionals

  • If you and they feel comfortable, encourage family members to accompany you to key appointments with healthcare professionals, to get accurate information about this topic.
  • Offer to accompany them to their own appointments, if they wish.


  • Check in with your family members after the initial conversation on this topic. Let them know that you are available to discuss any concerns or questions that may arise later.
  • Be proactive in providing updates on your health and any developments in managing PKD.

Approaching this conversation with thoughtfulness and consideration can contribute to a supportive environment for your family. Remember that ongoing communication and support will be crucial as you navigate this journey together.

This information has been adapted from our PKD resource, Having a conversation with your adult children about your PKD diagnosis.