Caring in the face of risk: exploring the meaning of genetic risk for HD young carers

The investigators of this study hope to learn whether and how the genetic risk associated with HD, due to the nature of its autosomal dominant inheritance, impacts the caregiving experience of youth providing care for a parent with Huntington’s disease. Further, we are interested in exploring if and how this caregiving experience impacts the young carer’s thoughts about predictive testing for HD. We plan to ask participants questions about (1) his/her experience with providing care for a parent with HD, (2) about his/her perception of genetic risk and its relationship with caregiving, and (3) his/her thoughts about predictive testing for HD.

 

Participants will be asked to interview via phone or video conferencing (their choice!) with the protocol director, Danielle, for 1-1.5 hours. All participants completing an interview will be thanked for their time with a $20 Amazon giftcard.

 

Danielle Dondanville

ddondan@stanford.edu

(626) 975-5361

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