How should I talk with my child about their PWS diagnosis?
This is a question many parents ask as their child grows, and differences between them and their typical peers may become more apparent. Will discussing the PWS diagnosis empower their child to advocate for themselves effectively, or could it negatively impact their self-esteem?
A study led by Victoria Moy sought to answer this very question. Over 50 parents of children with Prader-Willi syndrome (PWS) participated in a survey and in-depth interviews to share their motivations, experiences, and approaches to disclosing the diagnosis.
The full study, published in The American Journal of Medical Genetics, is available here, and a free downloadable tip sheet based on the study’s findings can be found below.
What Parents Shared: Key Takeaways from the Study
While there is no one-size-fits-all approach, the study highlighted helpful strategies and thoughtful considerations that many parents found useful:
Most Parents Are Having the Conversation
In the study, 90% of parents had discussed the PWS diagnosis with their child to some degree. Parents were more likely to initiate the conversation if their child was older and had at least one sibling. These findings suggest that life stage and family dynamics may influence when and how families choose to talk about the diagnosis.
Start When the Time Feels Right
Many parents wait for signs their child is ready—like noticing differences or asking questions—before beginning the conversation. Choosing an age-appropriate moment can help ease the transition into more detailed discussions over time.
Make It a Series of Conversations
Parents emphasized that disclosing the diagnosis isn’t a one-time talk. Instead, they described it as an ongoing, evolving dialogue that unfolds over time, guided by the child’s age, maturity, and curiosity.
Use Simple, Clear Language
Tailor your explanations to your child’s developmental and cognitive level. Using straightforward language helps children understand the information without feeling overwhelmed.
Be Honest, But Reassuring
Parents shared that being honest about the diagnosis built trust. At the same time, offering reassurance—that the child is supported and loved—helped maintain a positive self-image.
Focus on Strengths and Normalize Differences
Emphasize your child’s strengths and abilities. Many parents found it helpful to remind their child that everyone has challenges—and that having PWS is just one part of who they are.
Encourage Questions and Open Communication
Allowing your child to ask questions and express their feelings, without judgment, fosters understanding and emotional resilience.
Connect with Others
Building relationships with others in the PWS community helps children feel less alone and more empowered. Support networks can also provide helpful perspectives for parents navigating this process.
Additional Tips from Parents
Like many aspects of navigating PWS, parents often feel a mix of self-doubt and anxiety when deciding how to share the diagnosis. For parents seeking guidance on how to discuss PWS with their child, the insights from this study may offer valuable themes and inspiration for navigating this challenging task. You can download the full Tips for Sharing the Diagnosis PDF for a more detailed list of practical suggestions based on the study.
A Note of Gratitude
We extend our heartfelt thanks to the parents who participated in this study and shared their experiences so openly. And congratulations to Victoria Moy, who has since completed her training and now works as a pediatric and laboratory genetic counselor at UAB Medicine.
Whether you’re just beginning to consider how to talk with your child about their diagnosis or are in the middle of that journey, we hope these insights offer reassurance, inspiration, and practical support.
