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. 2018 Nov 14;10(2):291–302. doi: 10.1007/s12687-018-0395-z

Table 2.

Interview guide domains and sample questions

Domain Sample questions
Learning about the diagnosis and genetics of HD 1. When did you learn about your parent’s diagnosis of HD? What was that like for you?
2. When did you learn about the genetics/inheritance of HD? What was that like for you?
Caregiving role 1. Explain your role as a caregiver for your parent with HD.
2. What has this experience been like for you?
Genetic risk and caregiving 1. Does knowing about your genetic risk impact your caregiving?
2. Does the act of caregiving impact how you feel about your genetic risk?
Genetic risk, caregiving, and predictive genetic testing 1. Have you heard about predictive genetic testing?
2. Have you thought about predictive testing for yourself? If so, what are your thoughts/plans?
3. Do you think your caregiving experience has impacted how you feel about testing and your plans to pursue (or not pursue) testing?