Disclosure challenges and support needs of parents with children at risk for Huntington’s disease

Two genetic counsellors in Canada are interested in finding out what kind of support parents access when looking to disclose information about Huntington’s disease to at risk children, and what challenges parents face when disclosing this information.

What is the study?

This research will study the challenges that parents face in telling their children about their own risk for Huntington’s disease as well as identifying support resources used and found helpful for parents.

Who can participate?

You are eligible to participate if you have received a positive genetic test result for Huntington’s disease and you have at least one biological child under the age of 21 years old.

You are also eligible to participate if:

Your current or former spouse/partner has received a positive genetic test result for HD and has at least one biological child 21 years of age or younger. In this study, spouse/partner is defined as a current or previous spouse or common-law partner who shares children with someone who has received a positive genetic test result for HD. As a spouse/partner, these children may be your biological children as well or they may not be your biological children but you play a parenting role. In either case, your participation is welcomed.

How to participate?

If you are eligible to participate in the study then you can complete the survey online at the following site:

https://www.surveymonkey.com/s/TellingTheChildrenStudy

The survey is completely anonymous. Participation in this study completely voluntary and completion of the survey will take around 20 minutes.

What will the results of the study help towards?

The study results should allow researchers to assess where support by parents is not only accessed but also what areas support appears to be lacking in. By listening to parents concerns and opinions on what is needed to enable them to disclose information about Huntington’s disease to their children, in as comfortable way as possible, it will allow researchers to focus on these areas of support that are perceived to be lacking and improve the support for parents in this matter. If you have any questions or concerns, feel free to contact Jennifer Semotok or Clare Gibbons at the email addresses or phone numbers listed below.

To learn more about the study look here.